Guest guest Posted February 15, 2003 Report Share Posted February 15, 2003 ! This is a terrible thing that happened to you. As if PA isn't enough. I am so sorry. A similar thing happened when I was 13. It started in my achilles and moved up my leg. I was diagnosed with rheumatic fever and spent 2 months total bedrest in the hospital, 4 months in bed at home and a whole school year only attending required classes. I also took penicilen pills for about 8 years off and on. About 5 years ago; the first time I went to a rheumatologist, she informed me I had no murmur in my heart; thus no rheumatic fever, ever. J [ ] new member Hello everyone. I'm new here, so I thought I'd tell a little about myself. I wanted to share my diagnosis story.. as I thought it might interest some. By the way, my name is , and I'm 21 years old. About a little over two years ago, I woke up with a very bad pain in my foot, and it was swollen. I'm a diabetic, and already had a podiatrist, so I went to him first. He first thought it was some form of mild fracture, or something alone those lines, so he put me in a cast for a week.. going back after that week, there was no improvement, and he kept it on for another week... thinking that since I heal slower than most because of the Diabetes, he'd give it some more time. Went back again and still nothing really seemed to be different. He was baffled as to what it migt have been.. but because he is actually a good doctor, he told me straight out that he wasn't sure what was wrong and he didn't want to hurt me. He recommended me to an infectious disease doctor to look at my foot and take tests. I had MRI's done as requested by the infectious disease doctor, but for some reason the test results were given to me (which isn't allowed... they're supposed to be sent to the doctor I always thought).. anyway, the lab where I picked up the test results were very close to my Diabetes doctor's office, so I went to show him. He took one look at the pictures and said that it was very serious and might need surgery.. I was hospitalized that same day. Not really knowing what was going on, there was now a team of about seven doctors being contructed to all look at me, my results and make their assumptions as to what was wrong with me. Probably two different surgeons, my diabetes doctor in the lead, infectious disease doctors, etc... I was diagnosed with Osteo-millitus, which is a pretty severe thing because it's extremely hard to get rid of. It's a bone infection. Apparently, they were diagnosing me with a bone infection, although the outside of my foot had no scrapes, cuts, or any other side of an entrance where bacteria could have got in. Their theory was that I took an insulin shot and somehow some bacteria on my skin got into my blood and travelled to my foot.. and I developed the bone infection. I was hospitalized for probably a little over a week. It came down to them " finding exactly what type of bacteria is causing the infection " .. I took multiple MRIs, xrays, a test where they radiate your white blood cells, then put them back in you to see where they go.. (assuming you have an infection, the white blood cells will go to that spot...clever) There was A LOT of talk about amputation of the toe.. (or foot is what i'm pretty sure they were getting at) ... One surgeon actually said " well, everyone loves having ten toes, but sometimes that's just not reality)... After all the testing they did, they decided to put a pic line in me. (for those that don't know what this is, it is an approximately ten inch long tube that goes in your bicep, into your vein, up around your shoulder, right above your heart.. supplying you with whatever IV medicine is hooked up to it) I was sent home on IV antibiotics to be supplied through the pic line, hoping that the medicine they were giving was the right one for the bacteria i had. I had a home nurse to take blood tests every four days, which my sed rates were Always elevated, which was their main way of figuring out if the infection was getting better or not... My left knee then swelled up which worried the doctor quite a bit, as he believed this was a sign that the infection was spreading.. and ordered my knee be drained and the fluid tested. This was absolutely the most painful thing I've ever been through in my whole life. They took something like six or more vials out of my knee.. I will never forget how painful that was. Of course the fluid tested negative for any infection... the doctor figured that the fact that I wasn't walking as much anymore, and then maybe tried to walk a little traumatized my knee, which, in turn, swelled up with fluid. It was after i went home i started to loose the muscle in my legs from being bedridden. I was soon having difficulty walking.. After weeks, they theorized that the medicine was not working, and changed to a stronger antibiotic.. this time, Rosephen (I think I spelled that right) After being on this for a while, I started to throw up everything I ate. I lost 35 pounds in all from it.. and by that time my leg muscles had totally deteriorated. My legs looked like Jello, and had absolutlely no muscle left, I could barely stand.. and used a wheel chair most of the time. The antibiotics being in me so long, and the sed rates still high, they figured that the medicine i was on was still not working for the bacteria that was in me. I was sent to a surgeon to look me over before he would do a biopsy to scrape the bone in my foot and test to see what bacteria it was. I, of course, refused to go to the same surgeon that did the knee draining, and picked someone totally different (Thank God)... As I was sitting in the waiting room filling out the papers, when it wanted me to list all other conditions that I had... I thought (should I write psoriasis?... does it even matter). I'm so happy that I did. He looked me over and told me flat out that he totally didn't believe I had a bone infection, and that he has seen this so many times, at least twice a month. It made me sick to think that this kind of thing happened THAT MUCH! He told me he'd look over everything and talk my case over with some other doctors and get back to me after he saw some test results. He called me on my birthday and said to tell the nurse to take the pic line out, gave me the name of a rheumatist, and told me that I had psoriatic arthritis. If I hadn't gone to see him, I would have almost certainly had something amputated.. toe, foot, who knows.. whatever it is, it's part of my body. After that my doctor called me and actually said " Well, Dr. Levine seems to be convinced it's not an infection.. it's arthritis.. I don't even know anymore " .... This incident has left me with a lot of pain, anger, and fear of doctors. Not to mention I had to pretty much learn how to walk all over again. It is extremely painful to regain muscle after it is lost. A little more than two years later and the muscles are still very weak sometimes. I have plans to start physical therapy and get back to the way I used to be. Just because I have psoriatic arthritis doesn't mean I shouldn't be able to jump, or run, or walk up stairs, etc. like a normal person. I've been depressed for a long time, and what happened to me has affected me deeply. It was a horrifying situation. Has anyone else had something like this happen to them? Sorry the story was so long, it was months and months and monthhssss of my life... I lost quite a lot and wanted to share the story with people who might be able to understand. Thanks a lot guys, [Ed. Note: Good Lord , that's horrifying! It should be written up in a medical journal. I think I'll send it to my rheumy. Ron] Please visit our Psoriatic Arthritis Group's informational web page at: http://www.wpunj.edu/pa/ -- created and edited by list member aka(raharris@...). In August 2001 list member Jack aka(Cornishpro@...) began to conduct extensive research which he publishes as the Psoriatic Arthritic Research Newsletter monthly in our emails and digest format. Many thanks to Jack. Back issues of the newsletter are stored on our PA webpage. Also remember that the list archives comprise a tremendous amount of information (Over two years of messages and answers).Feel free to browse them at your convenience. Let's hear from some of you lurkers out there! If you have a comment or question chances are there is a person who has been around a while who can help you out with an educated guess for an answer. If not we can at least steer you in the right direction with a good website to go to for the answers. Blessings and Peace, Atwood-Stack, Founder Alan , Web & List Editor Jack , Newsletter Editor Pat Bias, List Editor Ron Dotson, List Editor and many others who help moderate (thank you!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 Hi, Mixa. I am sorry to hear about your condition. However, I am glad to know that you are looking for more information. I am a 20 year-old guy with HH. It seems as though the majority of Hypogonadism ppl are older than we, but that could be because the older adults are more knowledable and more active in the message posts. My therapy has been interesting, for my endo has had little experience with a HH patient my age or my condition (T = 26 ng/dl). I am currently on 10g of AG and my T is between 6-9 hundred (I just got retested last week, and I will know the results of that soon). I am going to ask my endo this week if I can have a sperm count test. It sounds as though other members on this board have taken the test even while on AG, but my endo thinks it is impossible to produce sperm while on T. But I think he will be open to letting me try. Actually, the hardest part for me will be providing a sample--even with the great results I've enjoyed with AG, my libido is quite low; masturbation is difficult and not a fun experience. Still, I hope you enjoy success with whichever therapy you use. Many of my relatives could not believe how much I'd changed in 6 months. I hope you have positive results as well. Thyme2k2 > Hello everyone, > > I'm 19 year-old guy from Europe suffering of Hypogonadism and > Cryptochordism. Anyway, I never did any hormone test until this > January and now I got diagnosed: Hypogonadism. > I am about to start necessary therapies, but I'd like to get in touch > with guys of similiar age that have the same problem like myself. > > Cheers, > Mixa > > P.S. Please DO contact me by e-mail: bgyu2001@y... or drop me a > message by Messenger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 Welcome Joy, Being new to this is a bit scary, but don't ever hesitate to ask questions. Especially with this group. I am newly diagnosed (1 year) and have learned so much from everyone. I take Celebrex 200mg 2x per day, Plaquenil-40 mg 2 x per day, Prednisone 6mg 1 x per day; MTX injected 25ml 1 x per week. This allows me to work full time, and take care of what I have to do as wife, mother and grandmother. If you are still having bone pain, it is important to talk to your Dr. I also take Lortabs and Ultram for pain. I recently had severe heel pain and the Dr. gave me Vicodin ES, boy did I fly???? This is a battle, and you need to win and the only way you can win is with knowledge. Ask your Dr, Rheumy, Orthopedist, Podiatrist, etc. or look it up in the archives here, on the web, etc. until you get relief and the answers you need. Take special care of yourself, Gentle Hugz & prayers, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 In a message dated 2/18/03 9:21:08 PM Eastern Standard Time, jhoorm01@... writes: > Arava has taken my psoriasis away but not the pain in this > area. Feet seem a lot better though. > Thanks, > Joy > Hmmm... I didn't know Arava was good for Psoriasis... although I don't know much about that drug. Prednisone is a little scary long term... make sure you know ALL you can about it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 Hello Joy, I just wanted to say welcome and that I hope you find the groups as informative as I do. Unfortunately I haven't tried the medications you mentioned. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 Thanks for the welcome. What meds have you been on, if you don't mind my asking? Joy On Tue, 18 Feb 2003 erinemcg@... wrote: > <html><body> > > > <tt> > Hello Joy,<BR> > I just wanted to say welcome and that I hope you find the groups as informative as I do. Unfortunately I haven't tried the medications you mentioned.<BR> > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 I had that pain on and off last fall. The first time, I called the dr because I thought it might be a heart attack. It radiated down my arm. Until I read your post, I had forgotten about that pain. I haven't had it in months. Ks Di ----- Original Message ----- From: <jhoorm01@...> > I have intense pain in my collarbone and clavicle area. Anyone > experience this? Does anything help? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 Hello Joy -- Welcome! I take Arava and I am beginning to feel like it is doing a good job. I had taken increasing larger doses of MTX for a year but it had become ineffective (controlled the p really well though) and my doc didn't want to go to a higher dose (I was taking 25mgx9 each week). At first I didn't think the Arava was doing much but I recently noticed that I can actually take a long stride step now. I am very excited about this as I haven't been able to walk well for over a year. I don't worry too much about my liver because I have never been a drinker or done anything particularly risky for my liver but we do keep a check on it. Plaquenil is still a hard one for me. I quit taking it about a week ago (to see if it made any difference in my recent hearing loss) and experienced the most horrible cramping in my calf, beside my ankle, my forearm and lower back. I started taking it again yesterday and haven't had cramps yet. I am afraid it is contributing to my hearing loss (I have to get hearing aids as soon as I can get time to go for the molding). I get my eyes checked often and they seem to be fine but the hearing loss may get worse so I really have a big decision to make here. I have had severe pain in every joint since this all started. My jaw was horrible and the neck, shoulders, chest etc. were too. All of that is doing much better. I have bouts of chin to chest pain but not nearly as bad or as often as before. Good luck with all your decisions. Cheri [ ] New Member Hi my name is Joy and I just was diagnosed Psoriatic Arthritis last summer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 Welcome Joy, I'm on Celebrex and plaquenil. I've been on the plaquenil for 10 years with no problems. I understand that some people do have problems with plaquenil. The combination has worked for me. I'm physically active with only minor aches and pains, most of the time. Joy is also my daughter's name, so I'm partial to > Hi my name is Joy and I just was diagnosed Psoriatic Arthritis last > summer. > I started out with using Celebrex and prednisone, then > plaquenil (broke out in hives) and now Arava and prednisone. > Is anyone else taking this? I know it has gotten some bad press. > I worry about this. But my rheuma assures me as long as I keep > up with blood tests I should be o.k. > I have intense pain in my collarbone and clavicle area. Anyone > experience this? Does anything help? > Arava has taken my psoriasis away but not the pain in this > area. Feet seem a lot better though. > Thanks, > Joy > http://pages.ivillage.com/jhoormann/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 Hi Joy, Your post sounds similar to my husband. He was diagnosed last summer, and is now on Arava and pred. He has been on it six weeks, and his doc said he noticed an improvement. Not a lot, but we'll take what we can get. His P is about 95% better (but it was never really bad to begin with) and his PA has improved a touch. He tried MTX in the beginning, but after 4 months, there was only a 40% improvement. After 6 weeks on Arava, there was a 50% improvement. His doc was happy with this, and now we don't have to go back for 12 weeks. The improvement is small, but we have a renewed sense of hope. Hope this helps!! Jeni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 Thanks Jeni. Where does he have the most pain? Joy On Wed, 19 Feb 2003, Jeni Hinz wrote: > Hi Joy, > > Your post sounds similar to my husband. He was diagnosed last summer, and is now on Arava and pred. He has been on it six weeks, and his doc said he noticed an improvement. Not a lot, but we'll take what we can get. His P is about 95% better (but it was never really bad to begin with) and his PA has improved a touch. He tried MTX in the beginning, but after 4 months, there was only a 40% improvement. After 6 weeks on Arava, there was a 50% improvement. His doc was happy with this, and now we don't have to go back for 12 weeks. The improvement is small, but we have a renewed sense of hope. > > Hope this helps!! > > Jeni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 Thanks Fred, the plaquenil was a big no in my book. I was so full ov hives, I had bruises from some of them. Thanks for the welcome. Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 Thanks Carol, boy you are on a lot of meds. I know what you mean. I work and some days it is such a struggle. I also have a 14 year old and 11 year old. I tried Ultracet and could not take it and cannot take Vicodin. My regular doc prescribes Darvocet but about all that does is make me sleepy so I cannot take it at work. Thanks for the warm welcome. Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 Hi Cheri, What dose of Arava are you on? Do you take anything else and how long did it take the Arave to kick in do you think? Thanks, Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 He has pain all over. His hips have been the worst though. But, since he started Arava, that has eased up. The sausage digits have also decreased. At our last visit, we questioned why his thumbs are so bad also. His doc said that he doesn't know why, but in PA patients, this is often a bad spot. He said it doesn't happen in RA patients. He also has pain in one shoulder. Other than that, he has kind of a roving pain. For a few days its a knee, the next his elbow. He has lost some function in his elbows already. He cannot extend them fully anymore. He didn't even notice it until the doc said something. Weird. Re: [ ] New Member Thanks Jeni. Where does he have the most pain? Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Yeah, my cardiologist took EKG and ultra sound when I told him where pain was. The EKG just showed irregular heart beat. He sent me home with halter monitor but said it was o.k.. You begin to wonder with one test after another. Joy > I had that pain on and off last fall. The first time, I called the dr > because I thought it might be a heart attack. It radiated down my arm. > Until I read your post, I had forgotten about that pain. I haven't had it > in months. > Ks Di > ----- Original Message ----- > From: <jhoorm01@...> > > > I have intense pain in my collarbone and clavicle area. Anyone > > experience this? Does anything help? > > > Please visit our Psoriatic Arthritis Group's informational web page at: > http://www.wpunj.edu/pa/ -- created and edited by list member aka(raharris@...). > > In August 2001 list member Jack aka(Cornishpro@...) began to conduct extensive research which he publishes as the Psoriatic Arthritic Research Newsletter monthly in our emails and digest format. Many thanks to Jack. Back issues of the newsletter are stored on our PA webpage. > > Also remember that the list archives comprise a tremendous amount of information (Over two years of messages and answers).Feel free to browse them at your convenience. > > Let's hear from some of you lurkers out there! If you have a comment or question chances are there is a person who has been around a while who can help you out with an educated guess for an answer. If not we can at least steer you in the right direction with a good website to go to for the answers. > > Blessings and Peace, > > Atwood-Stack, Founder > Alan , Web & List Editor > Jack , Newsletter Editor > Pat Bias, List Editor > Ron Dotson, List Editor > and many others who help moderate (thank you!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Joy, I don't know the dosage. I put the pills in my holder and I threw the bottle away. I know that is not a good thing to do but I really struggle with all the meds I have to take so I do what I can to deny their presence. I'll find out though. It is one pill per day, whatever that is. I take it just before bed as it makes me tired right away. I started taking it the week before Thanksgiving 2002 and I didn't notice the improvement until sometime in late January. I also take vioxx, plaquenil, and I have prednisone for break through flares. I don't take the prednisone unless I absolutely have to. For pain I take extra strength tylenol because I have really bad reactions to a lot of the other pain meds, ie. hives and trouble breathing. Meds have always worked overtime on me and that is partly why I am so frugal about using them. Keep in touch, Cheri Re: [ ] New Member Hi Cheri, What dose of Arava are you on? Do you take anything else and how long did it take the Arave to kick in do you think? Thanks, Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Thanks for reply, thyme2k2 I was already thinking that none had read my message at the group... It's good to hear that your therapy is going well. Now I see that I haven't written enough details regarding my case. Well, I got diagnosed only two weeks ago, although I've suspected for a long time that something (now I know what) might be wrong. I was diagnosed during the military recruitment check-up. In my place military service is compulsory for all able-bodied males 18-65. When I was born, I was suffering of hypospadias and criptorchodism. Anyway, at age of 5 I had these problems somewhat corrected (at least my uretra is totally OK), but one of the testicles atrophied completely. So, since age of 5 I have only one testicle, which is by the way hypotrophic (smaller than it should be). This all gave me reason to suspect (as written above) but I hesitated to talk about it with my parents. One of the main reasons for suspections was that I have virtually no beard growing and that my whiskers are also not so strong (at least not like they should be). So when I went to the military check-up, they sent me to see urologist which sent me to the Military Health Academy, where I was checked from toe to the top of the head. The endocrinologist there sent me to check my testosterone, LH and FSH levels. My testosterone level is 6,1 [i'm not sure about the units], while allowed level for males is between 10,1 and 41,0 The other two levels are much, much higher than they should be (I'm not sure about the exact levels, but one of them is larger for 300 units that the maximum allowed). Since the endocrinologist is a military one, he didn't bother telling me what do to in order to improve my levels. But at least he declared me Permanently Unable For Military Service. At the moment, my parents and I are looking to find an expert for hormonal issues and to start any kind of therapy. Cheers, MIXA > > Hello everyone, > > > > I'm 19 year-old guy from Europe suffering of Hypogonadism and > > Cryptochordism. Anyway, I never did any hormone test until this > > January and now I got diagnosed: Hypogonadism. > > I am about to start necessary therapies, but I'd like to get in > touch > > with guys of similiar age that have the same problem like myself. > > > > Cheers, > > Mixa > > > > P.S. Please DO contact me by e-mail: bgyu2001@y... or drop me a > > message by Messenger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 Just catching up, someone may have already responded to this, if so - delete this! Could the P be cleared up because of the prednisone and not the Arava? Re: [ ] New Member > In a message dated 2/18/03 9:21:08 PM Eastern Standard Time, > jhoorm01@... writes: > > > Arava has taken my psoriasis away but not the pain in this > > area. Feet seem a lot better though. > > Thanks, > > Joy > > > > Hmmm... I didn't know Arava was good for Psoriasis... although I don't know > much about that drug. Prednisone is a little scary long term... make sure > you know ALL you can about it. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 I was on prednisone before the Arava and it didn't help the P. My doc said Arava has helped people with P. I know that is not a very well know drug and there is some controversy about it but my doc said as long as I stay current on labwork and don't drink I should be o.k. Second round of blood work turned out o.k.. I have gained weight on the P though and even though I want to go off it, when I do I notice the swelling in my feet and toes comes back and I have more pain. Joy Re: [ ] New Member > Just catching up, someone may have already responded to this, if so - delete > this! Could the P be cleared up because of the prednisone and not the > Arava? > > > > > Arava has taken my psoriasis away but not the pain in this > > > area. Feet seem a lot better though. > > > Thanks, > > > Joy > > > > > > > Hmmm... I didn't know Arava was good for Psoriasis... although I don't > know > > much about that drug. Prednisone is a little scary long term... make sure > > you know ALL you can about it. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 What country are you in? Steph ----- Original Message ----- From: " mesmir83 " Sent: Friday, February 21, 2003 9:40 PM > Thanks for reply, thyme2k2 > > I was already thinking that none had read my message at the group... > It's good to hear that your therapy is going well. Now I see that I > haven't written enough details regarding my case. > Well, I got diagnosed only two weeks ago, although I've suspected for > a long time that something (now I know what) might be wrong.......... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Your description sounds like Klinefelters, which we know is the most common chromosome variation affecting 1 in 700 birth males. However, like I said before, only a blood test to ascertain your karyotype can reveal whether you are XY, XXY or something else. The sooner you have the blood test, the better. I would suggest you discuss it with your GP and request a referral to an endocrinologist. Your GP can arrange the blood test and send it off for analysis. I didn't grow facial hair until 3 years ago, like you I could only ever manage peach fuzz and even that didn't happen until I was in my mid 30's. I had no body hair, my pubic hair was sparse. The testosterone implants I received were not giving my body the amount of testo it needed. So although I was diagnosed in 1988, it wasn't until 1999 that I started getting a much higher dose of testo and to get the shots, I had to kick up a fuss and make an official complaint against my then endocrinologist. If I hadn't gone to the USA I would more than likely have committed suicide by now. 4 days in the USA changed my life beyond my wildest dreams. I've gone from 600mg every 4 months to 150mg every 7 days. From 1985 to 2000 I was taking anti-depressants, prescribed by my GP on the instructions of a neurologist. My depression wasn't caused by low seratonin levels, it was caused by low testosterone levels. Yet to this day, no doctor will acknowledge that. Do yourself a favour and see a doc as soon as possible. Having knowledge about your own body will allow you to move on. Take care. Steph www.XXY.com-1.net ----- Original Message ----- From: J A Sent: Tuesday, February 25, 2003 7:55 PM > Sorry about that. I am 35. I could let my facial hair > grow for 3 weeks, and still would just have peach > fuzz. I had a friend I went to school with who could > grow a beard in 2 days, and I've never even been able > to grow a mustache no matter what. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Hi Nicci. I too am in the UK (30 miles north of London) I was DA with PA around 3 years ago and only went onto Mtx 6 months ago (also on Salazopyrene and Vioxx), so far not having much noticeable affect but at least no side affects either. Blood tests every month show no liver problems. I say this because I believe here in the UK treatments such as Embrel are not considered at least until you have worked your way through the NSAIDS and treatments such as Mtx. Everone on this board seem to agree that agressive treatment is essential and I would suggest that if you hope to get onto Embrel the sooner you try Mtx the earlier that might be. If you are fortunate the Mtx may work well for you. I would from my own experience not be overly concerned about Mtx provided that you are confident that your Rheumy will monitor you properly and you do have the blood tests regularly. It is not easy having this, as the fatigue (in my case) has as much impact as the other sympoms. I wish you well and hope you find this group a support. I expect you will get other responses. Geoff > My Husband has had Psoriasis for 20 years and PA for > about 6/7. He has only just started to talk about > everything, though we have been together 9 years > (married in '98). > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 Geoff Thanks so much for your reply - sorry for the delay in contacting you back but I have never used a facility such as this so have replied to your e-mail! I have also tried to post my reply in case anyone else has any comments about methotrexate/sperm count or any information regarding treatment that is available to us in the UK. I have the hang of the site now so look forward to all the help & support it offers! Nicci -- In , " wgsooty <geoffsutcliffe@h...> " <geoffsutcliffe@h...> wrote: > Hi Nicci. > > I too am in the UK (30 miles north of London) I was DA with PA around > 3 years ago and only went onto Mtx 6 months ago (also on Salazopyrene > and Vioxx), so far not having much noticeable affect but at least no > side affects either. Blood tests every month show no liver problems. > I say this because I believe here in the UK treatments such as Embrel > are not considered at least until you have worked your way through > the NSAIDS and treatments such as Mtx. > Everone on this board seem to agree that agressive treatment is > essential and I would suggest that if you hope to get onto Embrel the > sooner you try Mtx the earlier that might be. If you are fortunate > the Mtx may work well for you. I would from my own experience not be > overly concerned about Mtx provided that you are confident that your > Rheumy will monitor you properly and you do have the blood tests > regularly. > > It is not easy having this, as the fatigue (in my case) has as much > impact as the other sympoms. I wish you well and hope you find this > group a support. I expect you will get other responses. > > Geoff > > > > My Husband has had Psoriasis for 20 years and PA for > > about 6/7. He has only just started to talk about > > everything, though we have been together 9 years > > (married in '98). > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2003 Report Share Posted April 15, 2003 What was your very rough time in terms of the body reacting to the AP working? I am seeing an Alternative Dr. who is interested in Clindamycin IV's for 5 days then Mino. I am terrified of needles. Does anyone know how the IV's are administered? Through the arm or hand? Tamra Re: rheumatic New member Hi, I was diagnosed with RA in '88, however since that time we strongly suspect there is/was a PA connection. Either way, my path would have been the same - that is the AP protocol as outlined and explained in http//www.roadback.org. I too had the worst of the arthritis in my hands, fingers, toes and knees. I am not cured as yet but all of my labs are inching toward normal. (In fact my CRP is normal) I began the AP two years ago and had a very rough time of it, in terms of my body reacting to the AP " working " . I myself felt that the usual drugs such as methotrexate, celebrex, etc, were not for me. I did not want to treat symptomatically, instead my goal was and is to eject the rheumatoid out of my body. This I believe (in my case) can be done, is being done. Do read all of the information in the Road Back, the " histories " section was particularly helpful and inspiring to me when I was most in need of help and inspiration. K Attwood wrote: > Hi everyone. I am considering antibiotic treatment for my psoriatic > arthritis. I have been taking 25mg methotrexate (injected for last 2 > weeks) weekly and 1g daily salasopyrin for over a year and my PA > continues to get worse. I also take 175mg Indocid (I'm allergic to > celebrex & VIOXX). My CRP is 48 and ESR/SED is 15. > > The PA is in my fingers, toes, knees and occasional flares in my > lower back. > > I am interested in hearing from anyone with similar symptoms who has > tried antibiotic treatment. > > > Quote Link to comment Share on other sites More sharing options...
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