Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 I'm curious. Have you already tried the Dr. protocol? If not, I would suggest going to the store ASAP or her website and ordering " A Cure For All Cancer " . Have your brother get started on the parasite cleanse right away. Just a thought. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 Dr.'s protocol ASAP!Black walnut tincture extra strong,wormwood powder and fresh cloves rightm now! read her book the cure for all cancers. walt <kortron@...> wrote: introduction Hi Everyone, I just joined this group. In a nutshell, I am writing on behalf of my brother (57 yrs) who was diagnosed with Non-Hodgkins Lymphoma three years ago. He has been through all the treatments, chemo, radiation, and the latest - a stem cell transplant. As you can imagine his life and that of his family has been in a turmoil for these three years. He was a stout man for the last 15 years of his life and is now down to 165 lbs and frankly looks like hell! He was released from the hospital the middle of March and I got a call from him two days ago.... the cancer is back, his throat feels like it is closing up and he went to the doctor who claims the cancer is spreading, gave him some steriods to make his throat feel better and essentially said that he wasn't strong enough to undergo any more chemo. Go home to die is essentially what they are telling him. I got on the internet and started doing some research.... I came across the site of Bob . I wrote him and he wrote back. He wants me to call him tonight after 6 PM or he said he would call me if I gave him my phone #. Does anyone have any experience with this gentlemen? If anyone can offer me some advice to help my brother, please, please write me. Our hearts are all broken! Thank you, Jeanne Jeanne McNally Maine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2003 Report Share Posted May 10, 2003 Thank you Walt -- I am working on this right now -- the obstacle is that I am in Maine and brother is in NY. His wife is distraught -- worn out and having a stress test today. It is such a dilemma1 Thank you all and please keep the suggestions coming! Jeanne introduction | | | Hi Everyone, I just joined this group. In a nutshell, I am writing on | behalf of my brother (57 yrs) who was diagnosed with Non-Hodgkins | Lymphoma | three years ago. He has been through all the treatments, chemo, | radiation, | and the latest - a stem cell transplant. As you can imagine his life | and | that of his family has been in a turmoil for these three years. He was | a | stout man for the last 15 years of his life and is now down to 165 lbs | and | frankly looks like hell! He was released from the hospital the middle | of | March and I got a call from him two days ago.... the cancer is back, | his | throat feels like it is closing up and he went to the doctor who claims | the | cancer is spreading, gave him some steriods to make his throat feel | better | and essentially said that he wasn't strong enough to undergo any more | chemo. | Go home to die is essentially what they are telling him. | | I got on the internet and started doing some research.... I came across | the | site of Bob . I wrote him and he wrote back. He wants me to call | him | tonight after 6 PM or he said he would call me if I gave him my phone #. | Does anyone have any experience with this gentlemen? | | If anyone can offer me some advice to help my brother, please, please | write | me. Our hearts are all broken! | | Thank you, | Jeanne | Jeanne McNally | Maine | | | | | Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2003 Report Share Posted May 10, 2003 Dr Johanna Budwig's cottage cheese and flaxoil diet with champagne will bring people back See www.beckwithfamily.com. About six tablespoons in a cup I think. The champagne helps if they are very poorly. my brother seems to have given up. Sometimes their time is up and you cannot fight that. I felt desperate occasionally but deep down I know my brother wants to go. Pray for your brother and ask Archangel Raphael for healing. If time is up it eases their passing. There is life on the other side you know. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2003 Report Share Posted May 10, 2003 I'm not sure about the whole Cottage cheese and champagne thing... I mean... reading 's research, it just FELT right. The symptoms, the diagnosis, the cure... Cottage Cheese and Champagne just seems 'out there'... ....and certainly against some of the things Dr. says to avoid while ridding parasites... B > Dr Johanna Budwig's cottage cheese and flaxoil diet with champagne will bring people back See www.beckwithfamily.com. About six tablespoons in a cup I think. The champagne helps if they are very poorly. > > my brother seems to have given up. Sometimes their time is up and you cannot fight that. I felt desperate occasionally but deep down I know my brother wants to go. > > Pray for your brother and ask Archangel Raphael for healing. If time is up it eases their passing. There is life on the other side you know. > > Liz > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 This is a very interesting website...lots of info. I've been away for awhile so may have missed your report on what he said when you called him. How is your brother doing? I haven't seen any posts from you. Hope he's better. Re: introduction Hi , Thank you for replying... for some strange reason I have not been receiving e-mail from the list directly to my mailbox -- I am typing this on the web (where I found your reply also). I am checked off as receiving individual e-mails so ?? Anyway, Bob ' website is here: http://www.cancer-success.com I will be calling him tonight to see what info he can provide me with before I call my sister in law and get her hopes up. I will keep the list informed but in the meantime I would love to hear any and all suggestions on how to get started on what products I need to be suggesting to my brother. Thank you all! Jeanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2003 Report Share Posted May 26, 2003 Hi , Nice hearing from you. Welcome back. janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2003 Report Share Posted May 26, 2003 -Hi , Congrats on your delurk and welcome to the group. Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Hi , Please hang in there sweetie....I've been through 2 divorces myself, and one was an alcoholic. The PA on top of the other problems really makes it hard I'm sure. Keep e-mailing the group. It has really helped me emotionally. My husband even noticed how much it was helping me. Have you asked your doctor for something stronger for pain? It takes a while for the Methotrexate to " kick in " , and he/she should be able to give you something for the nights (or days) when things are really bad. It can't hurt to ask! If you have a supportive family and friends.......hang on to them while you get through this. People sometimes underestimate how much their family and friends can do for them. Also, keep using this group as a support system. Sometimes they may be the only ones that understand what you're going through. Hang in there. I'll be thinking about you. You can e-mail me if you need to vent!!! Jackie > I would like to introduce myself. If you are curious about my e- mail > address, I am blond, I live in Mission, British Columbia (Canada). > My name is . > > I would like to start by saying " thank you " to all of you - and thank > you as well to for setting up this forum. To know you are not > alone battling this awful disease is in many ways better than all > those awful drugs most of us are taking... the moral support and > understanding is so helpful.... > > I've had psoriasis for about 20 years I guess - on the bottoms of my > feet. After 3 serious car accidents (1973, 1982 and 1984) I lived > with residual chronic pain which was not diagnosed (as fibromyalgia) > until I suddenly could not work (I am a legal assistant in a large > law firm in Vancouver) for two years (1994-1996). During the past 4 > years I have worked in a part of the legal industry that was very > high in tension, stress and overtime. My first PA flare was in the > Fall of 2000 (in 6 months I did 600+ hours overtime - 16 hour days > without any breaks...) The two flares occurred in my knees but went > away after a few days.... It was not until I took a week-long > intense first aid course for my employer in August, 2001 that PA > really took hold. The night before my exam I had 6 major flares - > and almost went to the hospital at 2:00 a.m. that night... Shortly > afterwards I visited the rheumatologist I had been seeing in the mid- > 90's (for the FM - still full blown - 18 points, by the way)and he > initially diagnosed me with palindromic rheumatism as it came and > went. During the past 20 odd months my condition has deteriorated to > the point I went on short term disability last Friday. (Secretarial > work is pretty hard when the ol' hands don't work!) Back in > December, 2001 my rheumy suggested I start metho (I've been on > Plaquenil for over a year with no success, plus vioxx - doesn't work > anymore - so for the pain/swelling I usually take between 8 - 12 > ibuprofen/day - 200 mg each). In December I " ran away " from my > rheumy - metho scared me out of my wits. I tried eating really well - > worked well for a few months, but stress from work and a rotten > marriage with an alcoholic (he's jealous of my not working by the > way - zero [or less] support - he will do NOTHING to help me - only > moan about the effects on HIM!) changed all of that and my condition > took another spiral downwards. In May I went to a naturopath, was > put on a very strict diet, am taking all manner of natural remedies > (multi-vitamins, bromelein and curcumin, moducare... - helps about > 25% by the way) had vega testing for food sensitivities for " leaky > gut syndrome " - for those of you who don't know, naturopaths believe > all autoimmune disorders (which of course PA is) stem from bad flora > (yeasts, etc) in the gut, leading to a 'leaky gut' allowing large > protein molecules to escape into the blood stream, causing the body > to built up antibodies ... Anyhow, I tried cutting out all the > nightshades, all fruit (natural sugar - yeasts love it), all other > sources of sugar, dairy, wheat, oats, etc. etc. but it only modestly > helped. Both my hands are badly affected, my left wrist, both feet > (have protrusions on both achilles heels), my feet are swollen, toes > misshapen, R elbow I cannot straighten - been like that for months > with a huge constant swelling, shoulders, back/top of neck at the > base of the skull, knees always painful, L jaw often so bad can > hardly open my mouth to eat, at night arms so bad can't lift the > covers, can't get in/out of a tub, hard to dress, get off toilet, > tear a sugar packet, lift a glass with one hand, open a door..... > So, I went back to the rheumy 2 weeks ago to be told I am " in > trouble " . I have greatly deteriorated since last December. I have > given in and have had the blood work done and start metho next > week.... Rheumy told me it will be 3 months before we know whether > it will be a helpful remedy. I am a very upbeat type of person, and > thankfully have a wonderful family and a number of true heart friends > who are there for me. Unfortunately my husband is not supporting > me. I believe down the road, when I feel more secure that my > insurance company and employer are not going to desert me, I may need > to make the move to leave him. Right now though I am trying to focus > my mind on the positive and work towards winning over this awful > disease. At supper time last night I felt a huge flare coming over > me - especially in my left wrist (underside - like carpal tunnel) and > my left knee. At 1:00 a.m. I guess I tried rolling over in my > sleep. I woke up screaming - I could not move my left leg without > that awful knife-jabbing pain... I limped out of bed and sat up for > 2-1/2 hours in constant pain waiting for the ibuprofen and arthritis > tylenol to kick in... gives one alot of time to ponder life in the > night... Knew there must be others out there feeling as I do - and > so a few hours ago I found all of you. Thank you from the bottom of > my heart for being there. > > I've gone on long enough (oh it was soooo good to get it out). > > Scared but hopeful in Vancouver.... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 In a message dated 9/23/2003 8:58:40 AM Eastern Daylight Time, mmornhin@... writes: > > Any advice, anyone? > > Cheers, > Manfred. Hi Manfred, I don't know how it works in Chile but many of the people here are talking a drug called Enbrel. It is a prescription and quite expensive. Many insurance plans pay for it and you need to self inject it twice a week. It works on 70% of the people who use it although I am one of the unlucky 30%. Good luck and welcome to the group Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Is there any chance of getting Enbrel or Remicade? Enbrel is injected and Remicade is infused in a hospital setting or under a doctor's supervision. Enbrel requires a prescription here in the USA . There are very little side effects for the most part. Dovonex is a delightful (no burning, stinging or odor) topical cream or ointment that is quite good for psoriasis but again it is an expensive prescription here but there are basically no side effects. Good luck. Peggy B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 --Welcome to the group,Manfred! You summed up your experiences very well. About that magic answer?? guess not. We would be frauds to say there is one. I can tell you what has helped my psoriasis. Strong steroid creams,used with caution to avoid making it worse in the long run. PUVA, a med combined with a special light, and Remicade (I don't know if this would be available in Chile or not) Stick around and read what we are taking and check out psoriasis.org for excellent educational material.(for both psoriasis and the related arthritis)Of these Remicade is the only one that also helped my arthritis. Good Luck! Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 For the psoriasis: vitimin E, especailly if you can find it in plain gel form (which I have not been able to find), but break the capsules and spread it on the psoriasis. Also tea tree oil and lots of sun. For the arthritis, alfalfa and avoiding trigger food has helped me a lot. Obviously, I am not 100%, but I am doing okay. [Editor's Note: zum Erste- Wie Geht's, Manfred: Ich heiss Franz Duntze; I am in Dallas Texas now, though my family is Nord Deutsch (Bremen). Bessy has sent a response to your post, in which she recommends some of the " organic " homeopathic treatments. Her suggestions are certainly valid, particularly for those oriented to the new age, holistic homeopathies, and naturopathic medicine. For my own part, after reviewing your case history below, and here let me note that your history bears certain symmetries to my own. For my own part, I prefer a more traditional medical model, and will offer thoughts along those lines; that way, you will a range of options to consider (along with the other responses you'll no doubt receive!) Anyway: My 2 cent's worth follows. Teen onset of scalp psoriasis, prophyllactic treatment with over the counter teen skin remedies, probably in a country other than the US. On and off managing the problem, which brings Pt to a dermatologist, and treatment with the apririn-related coal tar preparations, and with Dovonex, which has its uses. Age 33-34, Finally signs of the 'A' component of PA make themselves manifest. So here we are: It is (quite likely) time to up the ante, a situation you accurately percieve, but that will mean crossing a thresh-hold about which you have some concerns. These concerns are to some extent elevated due to the lack of first class medical resources and world-class rheumatology, where you are at present. Stirring the pot a bit is that useful medications may be easily available in a local pharmacy, but the expertise necessary to select the best for (drugs) for you may not be available. (What follows is only what I would do; I do NOT recommend such a course for anyone else, unless it had the blessings and supervision of their own physicians and nurses and pharmacists.) All I could say, given that your case and mine are quite similar, as that I would do this: I'd find a respected Arzt (doctor) for whom the phamacies would fill prescriptions, and ask for the following: To be tested to see if I could take Methotrexate, without elevating liver enzymes. You say you probably can't take MTX, so that's probably out. For interim comfort, cortisone (prednisone) could be used for a while. The Biologics--Enbrel, Humira, Remicade and the others--should be evaluated for you; they are not all as proof-positive dangreous to the liver as are the DMARDs. If you can control the arthritis pain with the judicious use of Schedule II or III pain meds combined with less aggressive Biologics and DMARDs (e.g., Celebrex), and the heartbreak of psoriasis with superstrong topicals like Ultravate, life might work out pretty pleasantly.... Good Luck to you. D. >From: Manfred Mornhinweg <mmornhin@...> >Reply- > >Subject: [ ] Introduction >Date: Tue, 23 Sep 2003 02:32:49 +0100 > > >Dear all! > >I just joined this group, in the hope of finding some magic recipe here to >get better... > >My story in short: > >- First signs of scalp psoriasis at age 16. Not diagnosed back then. >Treated only with anti-dandruff shampoos. Remission about 6 years later. > >- Much stronger scalp psoriasis sets in at age 28. After a year shedding >big chunks of skin and starting to get infections, the resignation starts: >I'm getting old and sick... :-( Trip to a dermatologist, immediate >diagnosis of psoriasis (first time I even heard that word), later confirmed >by biopsy. Started on tar medication (Polytar plus Psorigel), with >improvement after two weeks and almost total clearing after a month. > >- Three years living on tar. Then resistance sets in. When continuous tar >exposure and occlusion during all nights no longer help, visit to >dermatologist. Switch to Calcipotriene. Slow, but clears up the scalp after >two months. Then dermatologist tells me to go back to tar. Two weeks later, >total flare up. Switch back to Calcipotriene on my own. Clears up again. I >stay on calcipotriene. > >- Age 33: Pain sets in in the second joint of the " mouse finger " . I >attribute it to excessive use at the computer. > >- Age 34. During a mountain trip, sudden inflammation of left hip. So >painful that I have to make the trip down the mountain sliding on my rear. >For three days I'm unable to walk. Two weeks until reasonable improvement. > >- The hip inflammation repeats itself every time I walk for more than about >one hour. I change style of life, and avoid walking for too long. > >- Age 36: Mouse finger is really bad, and continuous pain starts in the two >lower joints (not the distal ones) of both thumbs. I use the right hand a >lot more than the left, but the pain is the same in both. Highly >suspicious! After some months with no improvement, I go to a >rheumatologist. After a lot of X-rays, blood tests, and other examinations, >he finds out what I already knew: Psoriatic arthropathy, as he called it. >He puts me on indometacine and chloroquine. I jump. I had done my homework >and read that cloroquine can worsen psoriasis and cause eye problems. >Doctor says that is nonsense and insists that I take it. So I do. > >- One month later: Arthritis pains much reduced, scalp psoriasis flaring >out of control. Very dry eyes. Trip to the rheum. He says that the >psoriasis flare has nothing to do with the chloroquine, that the dry eyes >are due to Sjogrens (just coincidence that it started just then!), and that >I should keep taking the chloroquine and increase topical medication on the >scalp. So I do, as an obedient patient... > >One year later, which is a few days before today: The arthritis has not >caused any problems in a long time, but my scalp is coming down in pieces, >clear juice is running out of it, the itching drives me crazy, and for the >first time I have a psoriatic plaque near an elbow. I stop taking >chloroquine and put an intense battle on my scalp, combining tar with >calcipotriene. The elbow also gets tar. It's nice to be able at last to >look at a psoriatic plaque... Those on the scalp I could never see! :-) > >Today: The scalp seems to be a tad better, but of course it's to early to >be sure. At the same time, my thumbs are starting to hurt again... Grrrrrr! >I didn't expect the withdrawal of chloroquine to show up so quickly! > >The big question to this group: > > > ========== What should I do now? ============ > > >Please don't tell me to go to the rheum again, to find a better rheum, or >so. I live in a small city in Chile, and there isn't much in the way of >good doctors here. Also, most " prescription " medicine can be bought without >prescription here, except for the really dangerous or addictive things. So >I'm tempted to experiment a little. But I don't want to take liver-damaging >drugs, because I had a bad hepatitis when I was 18, and since then my liver >is a bit weak. It works OK in normal life, but eating a piece of cake with >cream is enough to start problems, so I don't want to damage it any more. >And this seems to place methotrexate, Arava and several other drugs out of >the equation. > >Any advice, anyone? > >Cheers, > Manfred. > >-------------------------- >Visit my hobby homepage! >http://www.qsl.net/xq2fod >-------------------------- > > _________________________________________________________________ Instant message during games with MSN Messenger 6.0. Download it now FREE! http://msnmessenger-download.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Hi all! As several people have kindly answered, I will pull up all my answers in one post. Janet: > I don't know how it works in Chile but many of the people here are talking a > drug called Enbrel. That one does not seem to be available here, at least it does not list in a Vademecum 2000 I have. If it is a very new drug, it may be available now but not in 2000. I would have to ask. > It is a prescription and quite expensive. Many insurance > plans pay for it and you need to self inject it twice a week. Not for me... Firstly, medical insurance in Chile does NOT cover any medication except what is administered during hospital treatment. It's a stupid situation: I'm forced by law to contract a medical insurance, but it covers only a minor part of what I need. It covers 80% of doctor's fees, 80% of lab exams, but only 30% of some dental care and none of others, and zero coverage for medicine! Then, I would not like to start on injections. I hate needles. Out of the question to do it myself. > Good luck and welcome to the group Thanks! Peggy: > Is there any chance of getting Enbrel or Remicade? Apparently not. > Remicade is infused in a hospital setting or under a doctor's supervision. Again too much problems and cost. I'm still (knock on wood) in a condition when PA is not dominating my life, and I would like to keep it that way as long as I can. So it's a matter of slowing the progress of PA as much as I can, but without entering overly complicate, costly, dangerous or otherwise ugly procedures. Probably in some more years I will have no choice, but for now, let me live as best I can without hospital sessions! > Enbrel requires a prescription here in the USA . There are very little side > effects for the most part. That's a good thing to know. > Dovonex is a delightful (no burning, stinging or odor) > topical cream or ointment that is quite good for psoriasis but again it is > an expensive prescription here but there are basically no side effects. Indeed that's my experience too. Decently effective, with no associated problems, but rather expensive. I understand that Dermovate (tacalcitol) belongs to the same group of vitamin-D derivates, and has about the same effect. But that's available only as cream, not as scalp lotion, so I can't use it. >Good luck. Thanks! Marti: > --Welcome to the group,Manfred! Thanks! > About that magic answer?? guess not. We would be frauds to > say there is one. Isn't it a shame? Doctors know pretty much everything, or so they try to make us believe, but they don't know how P and PA really work, much less how to fix it! I'm an electronician, and I can tell you that if electronicians knew as much about electronics as doctors know about the human body, the radio would not yet have been invented. > Strong steroid creams,used with caution to avoid making it worse in > the long run. I was thinking about them to fight down my current flare, but everyone seems to recommend against them. Dermovate is available here, and perhaps others. But out of fear for making it worse, I have resorted to heavy application of tar (Psorigel), which I hadn't tried during some time. And see, it's working! Today my scalp isn't watering any longer. Let's see if I can keep in control... > PUVA, a med combined with a special light, Again that's a hospital thing, which I hope I can avoid for the time being. > and Remicade (I don't know if this would be available in Chile or not) Apparently not. > Stick around and read what we are taking Exactly that is what I intend to do! > and check out psoriasis.org for > excellent educational material. When I started with psoriasis, I actually became a member and recieved their printed bulletin. Later I let that lapse. It's just so uncomfortable to be in a club of sick people! Just like here! But well, that's exactly where we belong... Darn! : > For the psoriasis: vitimin E, especailly if you can find it in plain gel > form (which I have not been able to find), but break the capsules and spread > it on the psoriasis. Will see if I can find it. I guess it's worth a try, as it probably can't do much harm. Perhaps it helps. > Also tea tree oil Now I have no idea where to get that! > and lots of sun. Funnily, that's hard to get here too! I live in a very cloudy climate, which I suspect may be working against me. But it seems that finally I will have a good chance to move away. I was fired from the job recently, so I'm no longer locked into this place! > For the arthritis, alfalfa In what form? Infusions, or eating it? > and avoiding trigger food has helped me a lot. Could you tell me what sorts of food can trigger it? I have heard some ideas that some foods may be related to P and PA through alergic reactions, while other people deny it. I would like to try, but I need to know what sorts of food would be worthwhile to avoid for some trial period! Franz: > zum Erste- Wie Geht's, Manfred: Etwas verärgert über diese Pest, und besorgt über die Zukunft, aber was solls... Man muß das Leben halt nehmen, wie es kommt! > Bessy has sent a response to your post, in which she recommends some of the " organic " homeopathic > treatments. Her suggestions are certainly valid, particularly for those oriented to the new age, holistic > homeopathies, and naturopathic medicine. I'm not a big believer in those things, but I have an open mind. If something can be tried that is not too expensive, messy, and that has no big risk potential, then I'm all for trying it. If it helps, even slightly, fine. And if it doesn't, not much is lost. > For my own part, after reviewing your case history below, and here let me note that your history bears > certain symmetries to my own. My story seems to be pretty typical, regarding age of appearance, and so. Some things are a little atypical, like the exact joints affected, but overall I'm a case like millions. > These concerns are to some extent > elevated due to the lack of first class medical resources and world-class rheumatology, where you are at > present. This I must place in perspective. I don't like doctors in general, I hate going to a doctor, and so I tend to speak badly of them. But according to objective parameters, doctors in Chile in general are no worse than elsewhere. The problem is that there are good and bad ones, and among the good ones there are some who care and others who are not really interested in a run off the mill case. Then I must say that I live in a city that is rather small, provincian and not known for good medicine. In Santiago certainly much better doctors are available. But I just hate travelling to Santiago for a doctor's visit! So, much of the blame is on me... > Stirring the pot a bit is that useful medications may be easily available in a local pharmacy, but > the expertise necessary to select the best for (drugs) for you may not be available. Perhaps not locally. Anyway, I have had a quick look of what's available in Chilean pharmacies: Tar preparations: - Psorigel: Gel with 7.5% tar. - DHS Tar: Shampoo containing 0.5% tar. - Tarmed: Shampoo containing 4% tar. - Tarytar: Shampoo with a mix of tars, called Polytar elsewhere. Anthraline: - Micanol: Anthraline 1%. Vitamin D derivates: - Daivonex: Called Dovonex in the USA. - Bonalfa: Tacalcitol cream. Steroids: Not recommended for PA patients: - Dermovate: Clobetasol propionate. High potency steroid. Keratolitics: - Diprosalic: Salicylic acid. Immune modifiers: - Chloroquine. - Plaquinol: Hydroxicloroquine. (Ten times more expensive than Chloroquine) - Arava: Leflunomide. - Methotrexate: In pills or injections. - Sandimmun: Cyclosporine. - Azatioprina (Alathioprine). Several gold preparations. Expensive. Glucosamine: (Question: Is this useful for PA?) - Bioflex 500. - Dinaflex. - Viartril 500. - Viartril Rotta (250mg). Non-steroidal antiinflammatories: - Aspirine. - Ibuprofene. - Flexono: Indomethacine. - Isox: Meloxicam. - Mobex: Meloxicam. - Tenaron: Meloxicam. - Zix: Meloxicam. - Merpal: Sodium diclophenate (sp?) - Voltaren: Apparently sodium diclophenate too. Intestinal antiinflammatory (some say it helps): - Azulfidine, Azulfidine EN: Sulfasalazine. Antimicotics: - Nistatina (Nystatin): That's what I came up with, when looking through the list of available medications and their possible uses. There are probably more which I didn't recognize. > All I could say, given that your case and mine are quite similar, as that I would do this: I'd find a > respected Arzt (doctor) for whom the phamacies would fill prescriptions, and ask for the following: The problem here is that a doctor, specially a well respected one, will not take any requests or suggestions from a patient! He is the boss, the patient is the victim. The doctor prescribes some medication, doesn't explain what it is and how it works, and asks the patient to take so many pills per day and come back in two weeks. Of course, that time, after charging for a new consultation, he only says to keep taking the same pills and wait for another two weeks to see if it helps. After that, if it really didn't help, perhaps he prescribes something different, but certainly NOT what the patient would like to try - that would be like the patient suggesting he knows as much or more than the doctor, and that's a no-no! >To be tested to see if I could take Methotrexate, without elevating liver enzymes. That seems to be the best bet at this time. Perhaps a very small dosage. > You say you probably can't take MTX, so that's probably out. My liver is a bit weak, but certainly I haven't ever been tested for MTX tolerance. Maybe it works. > For interim comfort, cortisone (prednisone) could be used for a while. Everyone seems to recommend against them when PA is present. > The Biologics--Enbrel, Humira, Remicade and the others--should be evaluated for you; they are not > all as proof-positive dangreous to the liver as are the DMARDs. But it seems that they are not available here. Probably they have not yet been approved here. For how long have they been available in the USA? > If you can control the arthritis pain > with the judicious use of Schedule II or III pain meds combined with less aggressive Biologics and DMARDs > (e.g., Celebrex), I found Celebra in the Chilean Vademecum, but not Celebrex. I guess it's the same stuff: Antiinflammatory and pain killer through COX-2 inhibition. Right? Is it that? Would this stuff be considered a DMARD? I really would like to use some DMARD to avoid or at least slow down joint damage. I was using Chloroquine for that, but it's too hard on my scalp. I hope I still have about 4 decades left to live, perhaps even 5, so I need my joints for some more time! I used to climb mountains, and 12 years ago I took a three-week solo hike through wilderness - the real one: I didn't see another human during those three weeks. Those were the times... And nowadays I can't walk more than one hour before my hip gives up. > and the heartbreak of psoriasis with superstrong topicals like Ultravate, I think I can keep control of that with just Daivonex and tar preparations, as long as I'm not taking chloroquine which makes it worse. The more worrying problem right now is the A part. > life might work out pretty pleasantly.... I still enjoy it, for sure. But it feels so stupid to have a web page with mountain climbing stories, while presently I can't even take a decent walk around the neighborhood, and supposedly I'm still in the first half of my life expectation! Life might work out pleasantly - but in a wheelchair... It would certainly be better if that could be avoided! >Good Luck to you. Thanks! Bye, Manfred. -------------------------- Visit my hobby homepage! http://www.qsl.net/xq2fod -------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 Donna, so sorry the treatment didn't work for you and you can't tolerate more. I will be starting treatment 7 Nov. As I am Stage 4 Cirrhosis (you are lucky if you're only borderline), they don't expect me to respond, but treatment may help stave off liver cancer. They said they make keep me on treatment the entire year even if I'm not responding so it will be more effective in preventing liver cancer. I have to go and have more bloodwork to find out genotype and viral load, also must have an EKG. And they had me call my primary care doctor for a prescription for anti-depressant which I will start taking in about 3 weeks. Got a clearance from my opthamalogist today saying that interferon treatment is OK for me to take because the treatment can cause problems with your eyes, God is there ever any good news?! Will let everyone know the results of the tests when I get them. More than likely 1B and high viral load. My luck with this disease so far has been pretty much non-existent. Hope drs can help you with your fatigue, that does me in as well. I hosted my Pinochle Club here yesterday, and it wiped me out. It took me until late this afternoon to get everything cleaned back up, last night I just went to bed. C [ ] Introduction Hello;I am new to this group so wanted to introduce myself. I am maried, no children somewhere between 40 and 50, was first diagnoised with HCV approximately 6 - 7 years ago, in that period I have been on the interferon 3 times, just recently taken off for the 3rd and final time as I am not strong enough to even consider trying to endure it again. The virus is starting to beat me up badly, I am getting quite weak and fatigued. I am a Genotype 1A, boderline Cirrhosis, my last Liver Biopsy showed not quite Cirrhosis, and was intrepreted as Stahe 3 possibly 4, this was in Febuary 03. Prior to starting the last round of the treatment my viral load was 1,400,000.Anyway just wanted to introduce myselfDonna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 ; I hope it works out well for you Donna > Donna, so sorry the treatment didn't work for you and you can't tolerate more. I will be starting treatment 7 Nov. As I am Stage 4 Cirrhosis (you are lucky if you're only borderline), they don't expect me to respond, but treatment may help stave off liver cancer. They said they make keep me on treatment the entire year even if I'm not responding so it will be more effective in preventing liver cancer. I have to go and have more bloodwork to find out genotype and viral load, also must have an EKG. And they had me call my primary care doctor for a prescription for anti-depressant which I will start taking in about 3 weeks. Got a clearance from my opthamalogist today saying that interferon treatment is OK for me to take because the treatment can cause problems with your eyes, God is there ever any good news?! Will let everyone know the results of the tests when I get them. More than likely 1B and high viral load. My luck with this disease so far has been pretty much non-existent. > Hope drs can help you with your fatigue, that does me in as well. I hosted my Pinochle Club here yesterday, and it wiped me out. It took me until late this afternoon to get everything cleaned back up, last night I just went to bed. > C > [ ] Introduction > > > Hello; > > I am new to this group so wanted to introduce myself. I am maried, > no children somewhere between 40 and 50, was first diagnoised with > HCV approximately 6 - 7 years ago, in that period I have been on the > interferon 3 times, just recently taken off for the 3rd and final > time as I am not strong enough to even consider trying to endure it > again. The virus is starting to beat me up badly, I am getting quite > weak and fatigued. I am a Genotype 1A, boderline Cirrhosis, my last > Liver Biopsy showed not quite Cirrhosis, and was intrepreted as Stahe > 3 possibly 4, this was in Febuary 03. Prior to starting the last > round of the treatment my viral load was 1,400,000. > > Anyway just wanted to introduce myself > > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 Hi, donna. i hope things look up for you. when my husband Greg started treatment, his viral load was three million 264 thousand 360 and now it's undetectable, and he is genotype one a. there is always hope, and there is always lots of caring people on this list waiting to lend a hand, a shoulder, a heart. Sue and Gidget Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 Hi Donna I seem to have missed your opening remarks... knowing I'll probably get it later. Anyway I'm glad you've got good support at home. I too sit at a desk all day, I managed to get through, although I did take a medical leave when I first started the treatment. Under the FMLA the company has to allow you medical leave (whether they pay you or not depends on your company's policies on short term disability) I took 2 month leave, but came back to work after 5 weeks and I was paid for my time off. Look into this if you think you may not be able to continue your work throughout the treatment. I was a type 1b, which I believe is pretty similar to 1a in response rates, etc. I managed to continue my 40 hours throughout, once I returned to work, but I must admit, I didn't really give my normal 100%. Good luck and I hope to hear more from you. -dz-donna leanne <pomeranianluvr@...> wrote: Thanks to everyone who has offered support, I am fortunately to have a very supportive husband. But my bigest current concern is how much longer will I be able to work. I sit at a desk all day in my work and my fatigue is starting to become over whelming.DonnaHello;> > I am new to this group so wanted to introduce myself. I am maried, > no children somewhere between 40 and 50, was first diagnoised with > HCV approximately 6 - 7 years ago, in that period I have been on the > interferon 3 times, just recently taken off for the 3rd and final > time as I am not strong enough to even consider trying to endure it > again. The virus is starting to beat me up badly, I am getting quite > weak and fatigued. I am a Genotype 1A, boderline Cirrhosis, my last > Liver Biopsy showed not quite Cirrhosis, and was intrepreted as Stahe > 3 possibly 4, this was in Febuary 03. Prior to starting the last > round of the treatment my viral load was 1,400,000.> > Anyway just wanted to introduce myself> > Donna> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 Hi Donna. I have gotten a couple of your emails already and, as I suspected, I now am getting the first one you sent. , doesn't have this sequential thing down very well apparently. Welcome to the group and I hope that a better treatment is found for you soon. You know many of us live with hcv all our lives. Have you tried any alternative treatments? I used milk thistle before I went on the treatment and it successfully lowered my ALT/AST count into the normal range with no other treatment. It had no noticeable side effects. Keep us posted and I'll be looking forward to hearing more from you. -dz-donna leanne <dagbf@...> wrote: Hello;I am new to this group so wanted to introduce myself. I am maried, no children somewhere between 40 and 50, was first diagnoised with HCV approximately 6 - 7 years ago, in that period I have been on the interferon 3 times, just recently taken off for the 3rd and final time as I am not strong enough to even consider trying to endure it again. The virus is starting to beat me up badly, I am getting quite weak and fatigued. I am a Genotype 1A, boderline Cirrhosis, my last Liver Biopsy showed not quite Cirrhosis, and was intrepreted as Stahe 3 possibly 4, this was in Febuary 03. Prior to starting the last round of the treatment my viral load was 1,400,000.Anyway just wanted to introduce myselfDonna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2003 Report Share Posted September 27, 2003 Manfred, I reviewed your response to those of us who have offered some suggestions, and, mit Verlaub, would offer the following thoughts-- for what they are worth. They are in the order they were in your e- mail. The very best thing, of course, is to find a doctor you can trust, who is well-educated on psoriatic arthritis. Lacking that, I offer the following for your review, based on my own experience--and noting that everyone reacts in their own unique way. (It might well be worth a trip to, say, the U.S. [or back to Germany, for that matter] for a level 5 consultation...) Steroid ointments/creams: Virtually no effect on the arthritis (A) component of psoriatic arthritis (PsA, or, as used on this site, PA). These topicals can do an amazing job of clearing the P, and, despite some people's comments that cortisone can sometimes increase the P, in 35 years I have never had that happen, and none of the 15 or so dermatologists and rheumatologists I've had over the years have ever mentioned it--in fact, they have prescribed the topical steroids. With that said, when used over large areas or in excess, the cortisone can become systemic (get in the bloodstream), and that is not good; and some people will have unwanted side effects. The strongest and most effective (for those who tolerate it) appears to be Ultravate (halobetasol propionate, a bit stronger than the clobetasol you listed). PUVA treatment: I've been through it. Best when the psoriasis is out of control; little/no help for the A. Took 10 days in hospital. Can be done, somewhat less effectively, on an out-patient basis, but it's time consuming. Remicade: Apparently not available in Chile? Extraordinarily expensive, done by (2 hour, needle-introduced) infusion in hosptal or doc's office. Vitamin E: Like most " organics " , much less effective, especially in aggressive flares. Little chance of side effects; probably not a lot of help, but can't hurt. Same for the tea tree oil. Sunlight does help control psoriasis, but there is the worry about skin cancer. Sunlight has both ultraviolet A and B wavelengths; the UVB is the bad one. Medical UVA light machines are preferable, but now you're back to PUVA (just without the psoralen pills). Immune modifiers: Of all of these, methotrexate may be the " best " (or least problematic), in that it's been around a long time now, and more people take it than any of the others (so, lots of experience). I have been tried on others, with little response--although everyone is different with these drugs, so maybe you'd have better luck. Here goes: Methotrexate (pills; shots if pills make you ill): Might be the best bet, starting with perhaps 5-10 mg. a week, going no higher than 20 mg. As long as bloodwork is done monthly or so, and there is no liver enzyme elevation, this could be the best course. Gold preparations: Not usually recommended in PsA. Can cause the psoriasis to flare seriously (among other drawbacks). Glucosamines: I have never heard of these being useful in PsA. Perhaps some other member has. NSAIDs (the non-steroidals): Some people do well on these; they've never done me any good. Best choices are probably the COX-2 inhibitors, such as Celebrex and rofecoxib. These are really ancillary drugs, to control the inflammation and prostaglandin formation (and resultant pain); they do nothing for the underlying PA. Intestinal anti-inflammatories and Antimicotics: I have no experience with these, nor have I heard much about them with regard to PsA. A handful of members on the website have mentioned/are using Sulfasalazine, etc.; perhaps you could request information about them by submitting a post. Prednisone (pills): As noted earlier, I really don't know why some people recommend against prednisone for SHORT-TERM, crisis management control in PsA. However, there are many good reasons NOT to take prednisone for any longer than absolutely necessary, because serious and even life-shortening consequences can result. About 3-5 weeks ago, there was a great deal of discussion on this site regarding cortisone and its effects (good and bad), and there were a few posts that described prednisone fairly fully (my own, humbly, included). If you wanted to read them, you just need to click on the " Previous " title at the top of the message list until you get to them. The Biologics: They're all new, and may not be available (there) yet. They're all very expensive, most require injections at home or the doc's office (or hospital). My guess is you can take pretty good care of yourself without them. It does sound like things aren't so bad yet that you really need these. I hope this has been of some use. Tschuess erstmal; mach's gut! Franz Duntze > > Hi all! > > As several people have kindly answered, I will pull up all my answers in one post. > > Janet: > > > I don't know how it works in Chile but many of the people here are talking a > > drug called Enbrel. > > That one does not seem to be available here, at least it does not list in a Vademecum 2000 I have. If it is a very new drug, it may be available now but not in 2000. I would have to ask. > > > It is a prescription and quite expensive. Many insurance > > plans pay for it and you need to self inject it twice a week. > > Not for me... Firstly, medical insurance in Chile does NOT cover any medication except what is administered during hospital treatment. It's a stupid situation: I'm forced by law to contract a medical insurance, but it covers only a minor part of what I need. It covers 80% of doctor's fees, 80% of lab exams, but only 30% of some dental care and none of others, and zero coverage for medicine! > > Then, I would not like to start on injections. I hate needles. Out of the question to do it myself. > > > Good luck and welcome to the group > > Thanks! > > Peggy: > > > Is there any chance of getting Enbrel or Remicade? > > Apparently not. > > > Remicade is infused in a hospital setting or under a doctor's supervision. > > Again too much problems and cost. I'm still (knock on wood) in a condition when PA is not dominating my life, and I would like to keep it that way as long as I can. So it's a matter of slowing the progress of PA as much as I can, but without entering overly complicate, costly, dangerous or otherwise ugly procedures. Probably in some more years I will have no choice, but for now, let me live as best I can without hospital sessions! > > > Enbrel requires a prescription here in the USA . There are very little side > > effects for the most part. > > That's a good thing to know. > > > Dovonex is a delightful (no burning, stinging or odor) > > topical cream or ointment that is quite good for psoriasis but again it is > > an expensive prescription here but there are basically no side effects. > > Indeed that's my experience too. Decently effective, with no associated problems, but rather expensive. I understand that Dermovate (tacalcitol) belongs to the same group of vitamin-D derivates, and has about the same effect. But that's available only as cream, not as scalp lotion, so I can't use it. > > >Good luck. > > Thanks! > > Marti: > > > --Welcome to the group,Manfred! > > Thanks! > > > About that magic answer?? guess not. We would be frauds to > > say there is one. > > Isn't it a shame? Doctors know pretty much everything, or so they try to make us believe, but they don't know how P and PA really work, much less how to fix it! I'm an electronician, and I can tell you that if electronicians knew as much about electronics as doctors know about the human body, the radio would not yet have been invented. > > > Strong steroid creams,used with caution to avoid making it worse in > > the long run. > > I was thinking about them to fight down my current flare, but everyone seems to recommend against them. Dermovate is available here, and perhaps others. But out of fear for making it worse, I have resorted to heavy application of tar (Psorigel), which I hadn't tried during some time. And see, it's working! Today my scalp isn't watering any longer. Let's see if I can keep in control... > > > PUVA, a med combined with a special light, > > Again that's a hospital thing, which I hope I can avoid for the time being. > > > and Remicade (I don't know if this would be available in Chile or not) > > Apparently not. > > > Stick around and read what we are taking > > Exactly that is what I intend to do! > > > and check out psoriasis.org for > > excellent educational material. > > When I started with psoriasis, I actually became a member and recieved their printed bulletin. Later I let that lapse. It's just so uncomfortable to be in a club of sick people! Just like here! But well, that's exactly where we belong... Darn! > > > : > > > For the psoriasis: vitimin E, especailly if you can find it in plain gel > > form (which I have not been able to find), but break the capsules and spread > > it on the psoriasis. > > Will see if I can find it. I guess it's worth a try, as it probably can't do much harm. Perhaps it helps. > > > Also tea tree oil > > Now I have no idea where to get that! > > > and lots of sun. > > Funnily, that's hard to get here too! I live in a very cloudy climate, which I suspect may be working against me. But it seems that finally I will have a good chance to move away. I was fired from the job recently, so I'm no longer locked into this place! > > > For the arthritis, alfalfa > > In what form? Infusions, or eating it? > > > and avoiding trigger food has helped me a lot. > > Could you tell me what sorts of food can trigger it? I have heard some ideas that some foods may be related to P and PA through alergic reactions, while other people deny it. I would like to try, but I need to know what sorts of food would be worthwhile to avoid for some trial period! > > Franz: > > > zum Erste- Wie Geht's, Manfred: > > Etwas verärgert über diese Pest, und besorgt über die Zukunft, aber was solls... Man muß das Leben halt nehmen, wie es kommt! > > > Bessy has sent a response to your post, in which she recommends some of the " organic " homeopathic > > treatments. Her suggestions are certainly valid, particularly for those oriented to the new age, holistic > > homeopathies, and naturopathic medicine. > > I'm not a big believer in those things, but I have an open mind. If something can be tried that is not too expensive, messy, and that has no big risk potential, then I'm all for trying it. If it helps, even slightly, fine. And if it doesn't, not much is lost. > > > For my own part, after reviewing your case history below, and here let me note that your history bears > > certain symmetries to my own. > > My story seems to be pretty typical, regarding age of appearance, and so. Some things are a little atypical, like the exact joints affected, but overall I'm a case like millions. > > > These concerns are to some extent > > elevated due to the lack of first class medical resources and world-class rheumatology, where you are at > > present. > > This I must place in perspective. I don't like doctors in general, I hate going to a doctor, and so I tend to speak badly of them. But according to objective parameters, doctors in Chile in general are no worse than elsewhere. The problem is that there are good and bad ones, and among the good ones there are some who care and others who are not really interested in a run off the mill case. Then I must say that I live in a city that is rather small, provincian and not known for good medicine. In Santiago certainly much better doctors are available. But I just hate travelling to Santiago for a doctor's visit! So, much of the blame is on me... > > > Stirring the pot a bit is that useful medications may be easily available in a local pharmacy, but > > the expertise necessary to select the best for (drugs) for you may not be available. > > Perhaps not locally. Anyway, I have had a quick look of what's available in Chilean pharmacies: > > Tar preparations: > > - Psorigel: Gel with 7.5% tar. > - DHS Tar: Shampoo containing 0.5% tar. > - Tarmed: Shampoo containing 4% tar. > - Tarytar: Shampoo with a mix of tars, called Polytar elsewhere. > > Anthraline: > > - Micanol: Anthraline 1%. > > Vitamin D derivates: > > - Daivonex: Called Dovonex in the USA. > - Bonalfa: Tacalcitol cream. > > Steroids: Not recommended for PA patients: > > - Dermovate: Clobetasol propionate. High potency steroid. > > Keratolitics: > > - Diprosalic: Salicylic acid. > > > Immune modifiers: > > - Chloroquine. > - Plaquinol: Hydroxicloroquine. (Ten times more expensive than Chloroquine) > - Arava: Leflunomide. > - Methotrexate: In pills or injections. > - Sandimmun: Cyclosporine. > - Azatioprina (Alathioprine). > > > Several gold preparations. Expensive. > > Glucosamine: (Question: Is this useful for PA?) > > - Bioflex 500. > - Dinaflex. > - Viartril 500. > - Viartril Rotta (250mg). > > > Non-steroidal antiinflammatories: > > - Aspirine. > - Ibuprofene. > - Flexono: Indomethacine. > - Isox: Meloxicam. > - Mobex: Meloxicam. > - Tenaron: Meloxicam. > - Zix: Meloxicam. > - Merpal: Sodium diclophenate (sp?) > - Voltaren: Apparently sodium diclophenate too. > > Intestinal antiinflammatory (some say it helps): > > - Azulfidine, Azulfidine EN: Sulfasalazine. > > Antimicotics: > > - Nistatina (Nystatin): > > That's what I came up with, when looking through the list of available medications and their possible uses. There are probably more which I didn't recognize. > > > > All I could say, given that your case and mine are quite similar, as that I would do this: I'd find a > > respected Arzt (doctor) for whom the phamacies would fill prescriptions, and ask for the following: > > The problem here is that a doctor, specially a well respected one, will not take any requests or suggestions from a patient! He is the boss, the patient is the victim. The doctor prescribes some medication, doesn't explain what it is and how it works, and asks the patient to take so many pills per day and come back in two weeks. Of course, that time, after charging for a new consultation, he only says to keep taking the same pills and wait for another two weeks to see if it helps. After that, if it really didn't help, perhaps he prescribes something different, but certainly NOT what the patient would like to try - that would be like the patient suggesting he knows as much or more than the doctor, and that's a no-no! > > >To be tested to see if I could take Methotrexate, without elevating liver enzymes. > > That seems to be the best bet at this time. Perhaps a very small dosage. > > > You say you probably can't take MTX, so that's probably out. > > My liver is a bit weak, but certainly I haven't ever been tested for MTX tolerance. Maybe it works. > > > For interim comfort, cortisone (prednisone) could be used for a while. > > Everyone seems to recommend against them when PA is present. > > > The Biologics--Enbrel, Humira, Remicade and the others--should be evaluated for you; they are not > > all as proof-positive dangreous to the liver as are the DMARDs. > > But it seems that they are not available here. Probably they have not yet been approved here. For how long have they been available in the USA? > > > If you can control the arthritis pain > > with the judicious use of Schedule II or III pain meds combined with less aggressive Biologics and DMARDs > > (e.g., Celebrex), > > I found Celebra in the Chilean Vademecum, but not Celebrex. I guess it's the same stuff: Antiinflammatory and pain killer through COX-2 inhibition. Right? Is it that? Would this stuff be considered a DMARD? > > I really would like to use some DMARD to avoid or at least slow down joint damage. I was using Chloroquine for that, but it's too hard on my scalp. I hope I still have about 4 decades left to live, perhaps even 5, so I need my joints for some more time! I used to climb mountains, and 12 years ago I took a three-week solo hike through wilderness - the real one: I didn't see another human during those three weeks. Those were the times... And nowadays I can't walk more than one hour before my hip gives up. > > > and the heartbreak of psoriasis with superstrong topicals like Ultravate, > > I think I can keep control of that with just Daivonex and tar preparations, as long as I'm not taking chloroquine which makes it worse. The more worrying problem right now is the A part. > > > life might work out pretty pleasantly.... > > I still enjoy it, for sure. But it feels so stupid to have a web page with mountain climbing stories, while presently I can't even take a decent walk around the neighborhood, and supposedly I'm still in the first half of my life expectation! Life might work out pleasantly - but in a wheelchair... It would certainly be better if that could be avoided! > > >Good Luck to you. > > Thanks! > > Bye, > Manfred. > > > -------------------------- > Visit my hobby homepage! > http://www.qsl.net/xq2fod > -------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2003 Report Share Posted September 28, 2003 Hi Franz! > The very best thing, of course, is to find a doctor you can trust, > who is well-educated on psoriatic arthritis. I will try that, sometime, in Santiago. There are some specialists who might have an idea or two. Locally, there are a few rheums, but none I would know of who is really top level in PA. Their usual clients are old ladies with the typical joint problemas caused by old age, and they specialize on helping them. > (It might well be worth > a trip to, say, the U.S. [or back to Germany, for that matter] for a > level 5 consultation...) I don't think that there would be much more result than from a doc in Santiago. After all, not even in those countries do they have a cure for it! > Steroid ointments/creams: Virtually no effect on the arthritis (A) > component of psoriatic arthritis (PsA, or, as used on this site, PA). > These topicals can do an amazing job of clearing the P, and, despite > some people's comments that cortisone can sometimes increase the P, > in 35 years I have never had that happen, and none of the 15 or so > dermatologists and rheumatologists I've had over the years have ever > mentioned it--in fact, they have prescribed the topical steroids. OK. I have read warnings that after a course of steroids, often the P comes back worse than before, and for fear of that I have avoided them so far. But I will keep them in mind for flare control. > The > strongest and most effective (for those who tolerate it) appears to > be Ultravate (halobetasol propionate, a bit stronger than the > clobetasol you listed). That isn't available here, so I would have to stick to Dermovate. > PUVA treatment: I've been through it. Best when the psoriasis is out > of control; little/no help for the A. Took 10 days in hospital. Ouch... I'm not yet that desperate. Knock on wood. > Remicade: Apparently not available in Chile? No. > Extraordinarily expensive, Then it's out of the question anyway. > done by (2 hour, needle-introduced) infusion in hosptal or > doc's office. Definitely not justified for the relative mildness of my present problems. > Vitamin E: Like most " organics " , much less effective, especially in > aggressive flares. Little chance of side effects; probably not a lot > of help, but can't hurt. Same for the tea tree oil. What is this tea tree oil? I had never heard of it, before joining this forum. > Sunlight does help control psoriasis, but there is the worry about > skin cancer. What amounts are we talking here? How much time daily, in full midday sun equivalents? > Sunlight has both ultraviolet A and B wavelengths; the > UVB is the bad one. Medical UVA light machines are preferable, but > now you're back to PUVA (just without the psoralen pills). I'm a tinkerer, so I could set up some UV lamp with a filter that blocks UVB, and light my computer with it. After all, I spent half of the day doing e-mail... :-) > Immune modifiers: Of all of these, methotrexate may be the " best " (or > least problematic), in that it's been around a long time now, and > more people take it than any of the others (so, lots of experience). What crystallizes from all I have read, is that MTX in small doses is the thing I will have to try next. > I have been tried on others, with little response--although everyone > is different with these drugs, so maybe you'd have better luck. My PA reacts well to chloroquine, which is an immune modifier after all, but the P gets worse, and I don't want to accept that any longer. And the next step from chloroquine seems to be MTX... > Methotrexate (pills; shots if pills make you ill): Would have to be pills anyway. Shots give me the creeps. > Might be the best > bet, starting with perhaps 5-10 mg. a week, going no higher than 20 > mg. As long as bloodwork is done monthly or so, and there is no liver > enzyme elevation, this could be the best course. That's the other catch. If monthly blood tests are required on a continuous basis, again I would not like that. A few times, to check tolerance, would be OK, or once a year would be OK too, but not long term monthly monitoring. I want medicine to help me to the extent possible, but I don't want to become a slave of medical procedures! > Gold preparations: Not usually recommended in PsA. Can cause the > psoriasis to flare seriously (among other drawbacks). OK. Discarded then. Anyway I wasn't leaning to try them. > Glucosamines: I have never heard of these being useful in PsA. > Perhaps some other member has. That idea sprang up because I saw them listed for arthrosis, and some other arthrosis meds are good for PA too. But that's the only link I have seen, so it's probably nothing. > NSAIDs (the non-steroidals): Some people do well on these; they've > never done me any good. Best choices are probably the COX-2 > inhibitors, such as Celebrex and rofecoxib. These are really > ancillary drugs, to control the inflammation and prostaglandin > formation (and resultant pain); they do nothing for the underlying PA. That's the problem... To avoid joint damage, I would like to take something that acts more at the base level. > Intestinal anti-inflammatories and Antimicotics: I have no experience > with these, nor have I heard much about them with regard to PsA. A > handful of members on the website have mentioned/are using > Sulfasalazine, etc.; perhaps you could request information about them > by submitting a post. This is a point I would like to investigate. There is repeated anecdotal evidence that Nystatin helps with PA, and there is a sulfasalzine preparation sold specifically for arthritis here (Azulfidine EN). > Prednisone (pills): As noted earlier, I really don't know why some > people recommend against prednisone for SHORT-TERM, crisis management > control in PsA. However, there are many good reasons NOT to take > prednisone for any longer than absolutely necessary, because serious > and even life-shortening consequences can result. About 3-5 weeks > ago, there was a great deal of discussion on this site regarding > cortisone and its effects (good and bad), and there were a few posts > that described prednisone fairly fully (my own, humbly, included). If > you wanted to read them, you just need to click on the " Previous " > title at the top of the message list until you get to them. I will look up those articles. But I have read too many terrible things about this stuff to try it, while less dangerous options are viable! > The Biologics: They're all new, and may not be available (there) yet. > They're all very expensive, most require injections at home or the > doc's office (or hospital). So they are clearly out for me. > My guess is you can take pretty good care > of yourself without them. It does sound like things aren't so bad yet > that you really need these. Exactly. At this time what I have is a nuisance, causing some pain, with the most serious effect being a limitation to not walk more than perhaps 2km a day, which is sad for me because I like to walk, climb mountains, and so. But I'm not desperate yet, not enough at least to go to the doctor all the time, or to give up my liver for my joints. > I hope this has been of some use. Tschuess erstmal; mach's gut! Danke! Jetzt weiß ich einigermaßen Bescheid! Cheers, Manfred. -------------------------- Visit my hobby homepage! http://www.qsl.net/xq2fod -------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Hi and Welcome...Michele! Sounds like you have your hands full with hubby and " furry friends " ...can relate to the " Tin Man " feeling. Glad you are getting some relief from your meds! :-) (Va.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 Hi Michele and welcome to the group. I also work in NYC as a senior vice president at a large bank. I'm mother to 3 dogs, two rescued pugs named Wilma and Ethel and a very sweet chihuahua (Tallulah) who belonged to my mother. Tallulah was my inheritance, and I am certainly the richer for it. I'm on Humira and Arava for the PA and Actonel for osteo. Humira is opening doors for me that I thought were shut for good so for the moment, I am in a better place than I once was. Hope you learn a lot here and that you receive all the support you need. Kathy F. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Hi, thank you for the welcome. My mother-in-law has a pug...my bully and she hate each other! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Thank you for the welcome! > Hi and Welcome...Michele! Sounds like you have your hands full with hubby > and " furry friends " ...can relate to the " Tin Man " feeling. Glad you are getting > some relief from your meds! :-) (Va.) > > > Quote Link to comment Share on other sites More sharing options...
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