Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 In a message dated 08/18/2002 1:28:49 AM Eastern Daylight Time, Lotsoshoes@... writes: > (I've been trying to > explain to my sister, the lush, how I can't sit down and throw a few back > like I used to.) However, If you are using other drugs in combination with > the Avara, you need to consider those precautions as well. > Tammy - just tell your sister, that unlike the way she may be killing her liver slowly, you would kill yours much more rapidly due to the drugs you are on. Hopefully, she'll respect that fact that your health is more important than partying with her. I have friend who sometimes make me feel a bit pressured to drink with them, so I understand. By the way, what part of Phila. are you from? I'm in Chester Co. but used to be near City Line area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Hi ! Believe me I have been firm with my sister with the drinking issue. She doesn't understand because she always saw me as the party girl when I was in my twenties. I was in the gym 4 days a week without fail & always on the go. I've tried asking my mother to help explain it to her (she listens better to her) that my health problems are serious. While I still like to go site seeing, shopping, etc., I don't enjoy going with my sister because she also doesn't understand that I can't walk for hours at a time anymore. I'd rather hang with other friends with arthritis who understand (we have an agreement that when either of us needs to rest, the other doesn't bully the other into going on). Anyway, I live in a small town just above Philadelphia called Horsham. It is in Montgomery Co. I'm actually across the street from the Willow Grove Air Naval Station--They're getting ready for the Air Show in just a few weeks. (I think I'll get out of town for part of that weekend. One gets no rest with jets flying in formation directly over head.) My grandmother lived in Phoenixville years ago. That's in Chester Co, isn't it? Thanks for the comments on my sister & the drinking issue. Tammy in Phila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 , (I'm presuming your name is ) So do you attribute your good health to the Enbrel? I'm currently awaiting an appointment with a new rheumy but I've not tried anything other than Ibuprofen, Vioxx and Celebrex. (The Ibuprofen is what I take now, it helps the most.) Do you think I could ask to skip the MTX (which my old rheumy rx'd) and go straight to Enbrel? Cheryl [ ] Re: Arava First, Ron, I have been wondering how you have been doing with your edema and if they have figured out what was causing it. Have you had any improvement? Second, I am currently on Enbrel, and we were trying to take me off the MTX and onto Arava, but Arava didn't work for me. I am under the impression that Arava is about like MTX in regards to alcohol. Before I started Arava, the dr had me take a baseline test for my liver. I get tested every 2-3 mos on a regular basis anyway. But, we worked a schedule where I took a blood test, 2 wks later started my Arava, and then 2 wks later, went in for another test, and then a month later. He stated that if there were any problems with Arava, it would show up in the first couple of months. Sure enough, after 2 months of Arava, I had VERY elevated liver enzymes, so I immediately had to stop both the MTX and Arava. He said that he is reluctant to put me back on MTX now. I had been rather fortunate with MTX in that I didn't have any severe reactions, but we just didn't think it was working as well as it could. When I had to stop both the MTX and Arava (cold turkey), I was really worried that I would really be in pain, but the weird part is that I feel better than I have in a long time. I am still awakening every morning, waiting to see if this is the day that it all falls apart, but so far, so good. As one of the other people told me--get on that pony and ride!! Plus, I didn't realize how tired that MTX made me until I got off it. But, these meds work differently on each person, so who knows. I have been off alcohol since I started both MTX and Arava, and I guess I am over the hump of really, really missing my glass of wine.. I e miss a nice cool glass of wine in the evening but, oh well, I am on a diet anyway--empty calories. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 Hi Cheryl, Good luck getting the Enbrel. I have had a perscription for Enbrel since December of last year, and still have not been able to get the company to fill it. They just sent me a letter last week saying that NO ONE got any new perscriptions of Enbrel since summer has begun and that they are hoping to start filling the oldest perscriptions first. If they don't fill my perscription soon, it will be expired and I will need a new one just to get back on the list--what a run around!!!! Since I could not get the Enbrel, I started taking the Remicade, which has helped, but it costs an arm and a leg. My last infusion was over $9,000.00 for a 6 week period--thank God for insurance!!!! As for the MTX, they think that the Enbrel works best with it. Good luck getting your new doc and with some new drugs. Troy & Cheryl Samons wrote: > , (I'm presuming your name is ) > So do you attribute your good health to the Enbrel? > I'm currently awaiting an appointment with a new rheumy but I've not > tried anything other than Ibuprofen, Vioxx and Celebrex. (The > Ibuprofen is what I take now, it helps the most.) Do you think I > could ask to skip the MTX (which my old rheumy rx'd) and go straight > to Enbrel? > > Cheryl > > [ ] Re: Arava > > > First, Ron, I have been wondering how you have been doing with your > edema and if they have figured out what was causing it. Have you > had > any improvement? > > Second, I am currently on Enbrel, and we were trying to take me off > the MTX and onto Arava, but Arava didn't work for me. I am under > the > impression that Arava is about like MTX in regards to alcohol. > Before I started Arava, the dr had me take a baseline test for my > liver. I get tested every 2-3 mos on a regular basis anyway. But, > we worked a schedule where I took a blood test, 2 wks later started > my Arava, and then 2 wks later, went in for another test, and then a > > month later. He stated that if there were any problems with Arava, > it would show up in the first couple of months. Sure enough, after > 2 > months of Arava, I had VERY elevated liver enzymes, so I immediately > > had to stop both the MTX and Arava. He said that he is reluctant to > > put me back on MTX now. I had been rather fortunate with MTX in > that > I didn't have any severe reactions, but we just didn't think it was > working as well as it could. > > When I had to stop both the MTX and Arava (cold turkey), I was > really > worried that I would really be in pain, but the weird part is that I > > feel better than I have in a long time. I am still awakening every > morning, waiting to see if this is the day that it all falls apart, > but so far, so good. As one of the other people told me--get on > that > pony and ride!! Plus, I didn't realize how tired that MTX made me > until I got off it. > > But, these meds work differently on each person, so who knows. I > have been off alcohol since I started both MTX and Arava, and I > guess > I am over the hump of really, really missing my glass of wine.. I e > > miss a nice cool glass of wine in the evening but, oh well, I am > > on a diet anyway--empty calories. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 > , (I'm presuming your name is ) > So do you attribute your good health to the Enbrel? Cheryl, Enbrel has definitely made a difference for me. I coud feel the positive effects after the second injection. I am not pain free by any means, but I feel soooo much better now. I have gone the route of sulfasalazine, MTX, briefly Arava, Celebrex, and back before numerous other things like voltaren, etc. But, I think the general protocol is to use MTX before going on to the more expensive meds--I think that is the insurance requirement for most. But, now since I am using Enbrel, I have gone to taking one 200 mg celebrex in the am (before I was taking another one at night), and I am taking Tylenol Arthritis Strength (usually 2 in the am and 2 more mid afternoon). My dr said he could give me a stronger pain medication, but they tend to make me feel dopey (or maybe that is dopier), and the Tylenol seems to do the trick. This is the least amount of medication that I have been on the in the last 4 years. But, I didn't realize the negatives of the MTX on my body. I never felt that I had a lot of side effects with it, but I did feel slightly nauseous, and I had so little energy. When I got off the MTX I felt like I had a surge of energy that I haven't had in the last couple of years. But, every day is a new day, and we never know what is around the corner for us!! Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Babs, is there some reason why Dr. Trentham doesn't switch you to doxycycline? Ethel rheumatic Arava > Hi! > As usual, I have blocked out on info on some things and now I have to find > out all I can about Arava. Dr. Trentham is taking me off AP for at least the > summer due to my hyperpigmentation which has not been reduced much by the > vitamin C, and my hands/fingers have been painful and puffy. Needless to say, I am > paranoid about stopping AP. It's been 4 yrs. > > Anyone with some feedback on Arava? I don't like some of the info I am > finding on the internet but if I can get my hands to stop hurting for awhile and > the pigmentation to ease up, I'll give it a shot - only since Dr. Trentham is > the one prescribing and at this time, he is saying just for the next 3 > months/summer. I am getting quite dark. My GP last week remarked on it as do friends > who haven't seen me. My legs have blue/black marks and, again, it is summer. > But that isn't my prime concern - it's this pain and swelling in my hands vs. > the DMARD/liver thing. I never thought I'd be in this position (going off > AP). :>( > > Thanks. > Babs > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Babs, You may want to consider a 2-bottle trial of the herbal OTC RheuMax before starting Arava. (www.healingyou.org) It's worked well for me and I currently use it with Doxy on the AP. Geoff soli Deo gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 I have been on Arava - 20 mg. every day - for two months (MCTD with IPF) not for the RA but due to my lung function is down to 40%. I have blood tests every 4 weeks. So far ok. Side effects are being overly warm, sweating, significant hair loss. But on 6/10 I'm asking to go off since I have read too many negative reports on Arava. Dr. also prescribed Prednisolone - 32 mg every other day. But I quit the Prednisolone last week - the side effects weren't worth it. also on Minocycline - 100 mg twice a day and Lovastatin 0 49 mg daily. good luck. rheumatic Arava > Hi! > As usual, I have blocked out on info on some things and now I have to find > out all I can about Arava. Dr. Trentham is taking me off AP for at least the > summer due to my hyperpigmentation which has not been reduced much by the > vitamin C, and my hands/fingers have been painful and puffy. Needless to say, I am > paranoid about stopping AP. It's been 4 yrs. > > Anyone with some feedback on Arava? I don't like some of the info I am > finding on the internet but if I can get my hands to stop hurting for awhile and > the pigmentation to ease up, I'll give it a shot - only since Dr. Trentham is > the one prescribing and at this time, he is saying just for the next 3 > months/summer. I am getting quite dark. My GP last week remarked on it as do friends > who haven't seen me. My legs have blue/black marks and, again, it is summer. > But that isn't my prime concern - it's this pain and swelling in my hands vs. > the DMARD/liver thing. I never thought I'd be in this position (going off > AP). :>( > > Thanks. > Babs > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 In a message dated 6/3/2003 9:45:25 PM Pacific Daylight Time, Babs56p@... writes: > I never thought I'd be in this position (going off > AP). :>( > Hi Babs: Oh If I had a dollar for every doctor I have fired over my continued taking of antibiotics, I would be a cheeseburger closer to paradise. I do not despair overly, however for I know the Feed stores (where you buy feed for your farm animals if in the country ), here in the USA all carry tetracycline for the cows. Health food stores carry gelatin capsules so you can measure them out. Usually the guy running any said feed store is knowledgeable about humans coming in and buying the antibiotics, and no questions are asked nor answered except where are the antibiotics? and how much are they? As I recall my feed store says something like 15 to 30 dollars. So you do not have to go off the antibiotics. and you CAN fire your doctor and hire another one who will give you the antibiotics. Lots of them will, just take your old prescription bottle with you to the new doctor. He does not need to know why he is the new doctor. Sometimes people are scared to fire their doctors cause the doctors give them their pain medication. Most doctors now will give you your pain medication (I am talking opiates) But trust me it is harder to find the doctor who will give you antibiotics than the doctor who will give you opiates. Of course if you live somewhere like Canada you can buy your codeine right off the shelf. Ann Pritchard " Deep in the center of our beings is an infinite wealth of love " <A HREF= " http://www.rheumatic.org/medhist.htm " >http://www.rheumatic.org/medhist.htm\ </A> < latest published work. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2003 Report Share Posted June 5, 2003 Hi Sandy: Thanks for your email re: Arava. Lung function? Was that brought on by the Arava? Significant hair loss? How much is " significant " ? (one of my concerns for sure, since I have never fully recuperated some hair loss from prior mxt/pred). I appreciate your feedback very much. :>) Babs In a message dated 6/4/2003 12:16:34 PM Eastern Daylight Time, sandykayball@... writes: > Subj:Re: rheumatic Arava > Date:6/4/2003 12:16:34 PM Eastern Daylight Time > From:<A HREF= " mailto:sandykayball@... " >sandykayball@...</A> > To:<A HREF= " mailto:rheumatic " >rheumatic </A>, <A HREF= " mailto:Babs56p@... " >Babs56p@...</A> > CC:<A HREF= " mailto:Judkeels@... " >Judkeels@...</A> > Sent from the Internet > > > > I have been on Arava - 20 mg. every day - for two months (MCTD with IPF) not > for the RA but due to my lung function is down to 40%. I have blood tests > every 4 weeks. So far ok. Side effects are being overly warm, sweating, > significant hair loss. But on 6/10 I'm asking to go off since I have read > too many negative reports on Arava. > > Dr. also prescribed Prednisolone - 32 mg every other day. But I quit the > Prednisolone last week - the side effects weren't worth it. > > also on Minocycline - 100 mg twice a day and Lovastatin 0 49 mg daily. > > good luck. > rheumatic Arava > > > > Hi! > > As usual, I have blocked out on info on some things and now I have to find > > out all I can about Arava. Dr. Trentham is taking me off AP for at least > the > > summer due to my hyperpigmentation which has not been reduced much by the > > vitamin C, and my hands/fingers have been painful and puffy. Needless to > say, I am > > paranoid about stopping AP. It's been 4 yrs. > > > > Anyone with some feedback on Arava? I don't like some of the info I am > > finding on the internet but if I can get my hands to stop hurting for > awhile and > > the pigmentation to ease up, I'll give it a shot - only since Dr. Trentham > is > > the one prescribing and at this time, he is saying just for the next 3 > > months/summer. I am getting quite dark. My GP last week remarked on it > as do friends > > who haven't seen me. My legs have blue/black marks and, again, it is > summer. > > But that isn't my prime concern - it's this pain and swelling in my hands > vs. > > the DMARD/liver thing. I never thought I'd be in this position (going off > > AP). :>( > > > > Thanks. > > Babs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2003 Report Share Posted June 5, 2003 Ethel: We tried the doxy last summer to clear up the hyperpigmentation and while it did work in that aspect, my RA pain (esp. hands and shoulders) increased. So, then we switched to a mix of a 100 mg. Minocin 1 x day and one doxy 1 x day. That improved my condition but still had pains in hands that got worse as winter came on. So, for the winter, back onto Minocin. Got some better but the past 5 months, have been more painful hands than before. Since the doxy in no way was comparable to the Minocin for me, it was not a viable option, given the pain I have now. :>( Babs In a message dated 6/4/2003 8:48:39 AM Eastern Daylight Time, emsnooks@... writes: > Subj:Re: rheumatic Arava > Date:6/4/2003 8:48:39 AM Eastern Daylight Time > From:<A HREF= " mailto:emsnooks@... " >emsnooks@...</A> > To:<A HREF= " mailto:rheumatic " >rheumatic </A>, <A HREF= " mailto:Babs56p@... " >Babs56p@...</A> > CC:<A HREF= " mailto:Judkeels@... " >Judkeels@...</A> > Sent from the Internet > > > > Babs, is there some reason why Dr. Trentham doesn't switch you to > doxycycline? > > Ethel > > rheumatic Arava > > > > Hi! > > As usual, I have blocked out on info on some things and now I have to find > > out all I can about Arava. Dr. Trentham is taking me off AP for at least > the > > summer due to my hyperpigmentation which has not been reduced much by the > > vitamin C, and my hands/fingers have been painful and puffy. Needless to > say, I am > > paranoid about stopping AP. It's been 4 yrs. > > > > Anyone with some feedback on Arava? I don't like some of the info I am > > finding on the internet but if I can get my hands to stop hurting for > awhile and > > the pigmentation to ease up, I'll give it a shot - only since Dr. Trentham > is > > the one prescribing and at this time, he is saying just for the next 3 > > months/summer. I am getting quite dark. My GP last week remarked on it > as do friends > > who haven't seen me. My legs have blue/black marks and, again, it is > summer. > > But that isn't my prime concern - it's this pain and swelling in my hands > vs. > > the DMARD/liver thing. I never thought I'd be in this position (going off > > AP). :>( > > > > Thanks. > > Babs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2003 Report Share Posted June 5, 2003 Hi babs, Well, I now I would not go off. I may go to doxy(doryx) as that is supposed to be fine with hyperpigmentation. I know for the swelling in the hands, I would try and look into the cocktail as that reduced hand swelling immensely (flagyl) I printed out all I could find and took it to my family doc in Jan. he agreed to add.It is prescribed wih an antifungal. I can give you all the articles I have too,if you are interested. I know for me, been there, done that with those dmards. I got nothing but worse ..my immune system especially and is costing me a fortune with a holistic practioner to repair me..if I even can. All you read does happen.It did to me.I was on Mtx not arava but they all are about the same. You can disagree witha doc.You can also make other suggestions.The doc you mentioned would be open to doryx if you asked,I bet. Fear not, there areCHOICES. Believe it or not they are yours! You willhave to scurry about a bit to access whatyou need but this is how i have been getting better, with research! Hang in there Love Marge > Hi! > As usual, I have blocked out on info on some things and now I have to find > out all I can about Arava. Dr. Trentham is taking me off AP for at least the > summer due to my hyperpigmentation which has not been reduced much by the > vitamin C, and my hands/fingers have been painful and puffy. Needless to say, I am > paranoid about stopping AP. It's been 4 yrs. > > Anyone with some feedback on Arava? I don't like some of the info I am > finding on the internet but if I can get my hands to stop hurting for awhile and > the pigmentation to ease up, I'll give it a shot - only since Dr. Trentham is > the one prescribing and at this time, he is saying just for the next 3 > months/summer. I am getting quite dark. My GP last week remarked on it as do friends > who haven't seen me. My legs have blue/black marks and, again, it is summer. > But that isn't my prime concern - it's this pain and swelling in my hands vs. > the DMARD/liver thing. I never thought I'd be in this position (going off > AP). :>( > > Thanks. > Babs > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2003 Report Share Posted June 5, 2003 Hi Babs...have you tried clindamycin IV's if that is an option for you? and also...are the bruises from the minocycline? rachael dermatomyositis > Hi! > As usual, I have blocked out on info on some things and now I have to find > out all I can about Arava. Dr. Trentham is taking me off AP for at least the > summer due to my hyperpigmentation which has not been reduced much by the > vitamin C, and my hands/fingers have been painful and puffy. Needless to say, I am > paranoid about stopping AP. It's been 4 yrs. > > Anyone with some feedback on Arava? I don't like some of the info I am > finding on the internet but if I can get my hands to stop hurting for awhile and > the pigmentation to ease up, I'll give it a shot - only since Dr. Trentham is > the one prescribing and at this time, he is saying just for the next 3 > months/summer. I am getting quite dark. My GP last week remarked on it as do friends > who haven't seen me. My legs have blue/black marks and, again, it is summer. > But that isn't my prime concern - it's this pain and swelling in my hands vs. > the DMARD/liver thing. I never thought I'd be in this position (going off > AP). :>( > > Thanks. > Babs > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Babs, are you on a regular detoxification program and have you ever considered using an infrared sauna to remove the toxins? I know the cost of these saunas are out of reach for many people but Dr. Mercola has instructions for making one for about $75.00. Ethel rheumatic Arava > Hi! > As usual, I have blocked out on info on some things and now I have to find > out all I can about Arava. Dr. Trentham is taking me off AP for at least the > summer due to my hyperpigmentation which has not been reduced much by the > vitamin C, and my hands/fingers have been painful and puffy. Needless to say, I am > paranoid about stopping AP. It's been 4 yrs. > > Anyone with some feedback on Arava? I don't like some of the info I am > finding on the internet but if I can get my hands to stop hurting for awhile and > the pigmentation to ease up, I'll give it a shot - only since Dr. Trentham is > the one prescribing and at this time, he is saying just for the next 3 > months/summer. I am getting quite dark. My GP last week remarked on it as do friends > who haven't seen me. My legs have blue/black marks and, again, it is summer. > But that isn't my prime concern - it's this pain and swelling in my hands vs. > the DMARD/liver thing. I never thought I'd be in this position (going off > AP). :>( > > Thanks. > Babs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Babs, we've discussed a lot about the importance of diet in this group but detoxification is equally important. Over 70% of immune function takes place in the intestinal tract. (One doctor 'corrected' me saying it's closer to 90%.) If that isn't functioning properly, not only does it slow the AP process, but remission may very well escape you. When I had LP the second time, my life was on the line. With an impaired immune system from disease as well as from age (I'm 77), believe me, I lost no time cleaning up this body. CMV, EBV, candida counts, and who knows what else, were off the charts. I juiced three times a day - 16 to 20 oz. each time - that was my food with a veggie salad permitted for dinner. I took herbal supplements to detox the intestinal tract, did high enemas, took hot and cold showers, took hot herbal baths, etc., and, yes, put it in remission. I also used micro-current technology. LP has an infectious etiology. My immune system is very fragile so I'm careful to do all I can to keep it functioning at its peak. That means watching diet closely, taking good supplements, doing regular cleansing, etc. Most people aren't willing to take the time and effort to do these things, but it's well worth it. I live in a community of mostly retired people. When my neighbors who know my story see me wheeling and spreading mulch, painting, climbing ladders, washing the car, or whatever, they just marvel. Most of them can't keep up with me. As for the infrared saunas, they pull the toxins out of the body. They should be more effective than the Epsom salt/hydrogen peroxide baths. Do a search on google for more information. I'm including the group in this post for those interested in pursuing a similar path. Ethel rheumatic Arava > Hi! > As usual, I have blocked out on info on some things and now I have to find > out all I can about Arava. Dr. Trentham is taking me off AP for at least the > summer due to my hyperpigmentation which has not been reduced much by the > vitamin C, and my hands/fingers have been painful and puffy. Needless to say, I am > paranoid about stopping AP. It's been 4 yrs. > > Anyone with some feedback on Arava? I don't like some of the info I am > finding on the internet but if I can get my hands to stop hurting for awhile and > the pigmentation to ease up, I'll give it a shot - only since Dr. Trentham is > the one prescribing and at this time, he is saying just for the next 3 > months/summer. I am getting quite dark. My GP last week remarked on it as do friends > who haven't seen me. My legs have blue/black marks and, again, it is summer. > But that isn't my prime concern - it's this pain and swelling in my hands vs. > the DMARD/liver thing. I never thought I'd be in this position (going off > AP). :>( > > Thanks. > Babs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2003 Report Share Posted September 19, 2003 , Recent studies have shown that Arava is very safe and superior to MTX in terms of liver damage (i.e. it is less toxic to the liver). I experienced NO side effects from Arava (my liver did not tolerate MTX but my liver panels stayed normal on Arava). While on MTX, I was constantly fatigued and I suffered from the infamous brain fog that so many speak of. Neither problem was present with Arava. The downside for me is that while Arava was trouble-free, I also felt no relief whatsoever. I was in constant pain and simple tasks like getting up from a chair became more difficult. My doctor has just taken me off Arava and put me on Humira, but other than not helping me, it also didn't cause any side effects. It helps many people - I hope you will be one of them! Kathy Do any of you have any personal experience with Arava? I did some searches on it to find there are several attorneys representing people with lawsuits against the manufacturer. There are a few severe side effects which don't seem too common in the statistics. My rheumy prescribed it to me yesterday. It is supposed to be " one last attempt " before Enbrel. The archives on this site don't seem to have too much information on the drug other than people are on it. Any comments would be appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2003 Report Share Posted September 21, 2003 My husband has been on Arava since the beginning of the year. At first he had some relief, but MTX was added later (by injection) to suppliment. He was just to see his rheumy, and we have decided to switch to Enbrel. He has been fortunate not to have any side effects from either drug, but they are also not doing much. There are days he can barely function. He is a truck driver and works long hard hours. The combination worked for a while, but has slowly lost it's effect. He has been approved for Enbrel, and will be starting shortly. I have to saywe are a little nervous, but are hoping this will be the one that works. Jeni >I have been on Arava a little over a year. I had psoriasis of the scalp >and I don't know if it was that or the prednisone that I am taking but it >all but disappeared. >Joy > > _________________________________________________________________ Instant message with integrated webcam using MSN Messenger 6.0. Try it now FREE! http://msnmessenger-download.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2003 Report Share Posted September 21, 2003 I also had NO side effects, or got any arthritis relief from Arava. Had been injecting MTX for a couple of years, then went to Arava/MTC, now on Remicade/MTX, which I LOVE!! It has been a year and it bring great relief, altho I just had to have my dosage increased. Re: [ ] Arava > , > > Recent studies have shown that Arava is very safe and superior to MTX in terms of liver damage (i.e. it is less toxic to the liver). I experienced NO side effects from Arava (my liver did not tolerate MTX but my liver panels stayed normal on Arava). While on MTX, I was constantly fatigued and I suffered from the infamous brain fog that so many speak of. Neither problem was present with Arava. The downside for me is that while Arava was trouble-free, I also felt no relief whatsoever. I was in constant pain and simple tasks like getting up from a chair became more difficult. My doctor has just taken me off Arava and put me on Humira, but other than not helping me, it also didn't cause any side effects. It helps many people - I hope you will be one of them! > > Kathy > > Do any of you have any personal experience with Arava? I did some > searches on it to find there are several attorneys representing > people with lawsuits against the manufacturer. There are a few > severe side effects which don't seem too common in the statistics. > My rheumy prescribed it to me yesterday. It is supposed to be " one > last attempt " before Enbrel. The archives on this site don't seem to > have too much information on the drug other than people are on it. > Any comments would be appreciated. > > > > > > Please visit our Psoriatic Arthritis Group's informational web page at: > http://www.wpunj.edu/pa/ -- created and edited by list member aka(raharris@...). > > Also,in August 2001,list member Jack aka Cornishpro@... began to conduct extensive research which he publishes as the " Psoriatic Arthritis Research Newsletter " , monthly in our email and digest format. Many thanks to Jack. Back issues of the newsletter are stored on our PA webpage as well as the archives of the list. > > Don't forget that the list archives comprise a tremendous amount of information (Over three 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 AT LEAST an educated guess for an answer! If not,we can steer you in the right direction with a good website to go to, > > Blessings and Peace, > > Atwood-Stack, Founder > Alan , Web & List Editor > Jack , Newsletter Editor > Pat Bias, List Editor > Ron Dotson, List Editor > Orin, List Editor > , List Editor > and any others who help in any way (thank you!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 I am wondering what you have tried to get your ASO titer down. i am going to attempt this also. probably zithromax. thank you, the info will be helpful. > After lots of ups and downs, my joint damage continues (despite years of AP, > and no luck getting my ASO titre down). > > I'm now starting Arava - anyone on the group trying this? > > Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 tomjs2@... writes: <<I'm wondering what percentage of us have lung problems>> I also constantly get bronchitis whenever I get a cold. I have allergies and when they get bad, I have slight asthma. The one thing I never had and came down with on New Year's Day is pneumonia and I am just getting over that. I wonder if there is a connection that we are more prone to all of this. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 I smoked for 28 years but gave up the disgusting habit 6 years ago. I'm on Arava, but my lungs are clear and I haven't had bronchitis since I quit smoking. I consider myself very lucky given my mother died of lung cancer and complications from Alzheimer's. Kathy F. I'm wondering what percentage of us have lung problems Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Kathy F., I've been taking Arava for years. Sometimes in 30 mg. doses, but, most of the time in 20 mg. doses. I don't have tons of lung problems, but, I do have severe sinus disease. Amy Deel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 I too took Arava for quite a while, when the Imuran I had been on for two years stopped being 100% effective-. Eventually we added in other meds on top when I began to flare through pAIn and swelling. Then added in Humira and that started to work pretty well after the first couple of weeks. Unfortunately, I had been on the three drug combination all last year and out of the blue, when I was admitted to the hospital over night when I fell having broken several bones and just fiding out the hard way that I have moderate osteoporosis all over at the age of 43!! I had a little cough that they heard upon examination, so they said to give them a sputum sample- and what do you know- a methicillin resistent staph infection of the sinuses!! It took six months to get rid of it in total!!! S group founder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Dear , Thanks for telling us that it took 6 months to get rid of the sinus infection. At least my month of this recent chest infection doesn't seem so bad and maybe there is still hope it will go away. I was on Humira when it hit too. I also think I'll ask my doctor about doing a culture from my chest and maybe they can identify the problem that way as well. I've been on so many antibiotics in the past month, I'm afraid I'm running out of options. So you gave me some hope. Thanks again, Fran in Florida. By the way, is Arava an injectable too or just an oral medication? Editor's Note: Fran, Arava is taken in pill form. Kathy F. [ ] Re:ARAVA I too took Arava for quite a while, when the Imuran I had been on for two years stopped being 100% effective-. Eventually we added in other meds on top when I began to flare through pAIn and swelling. Then added in Humira and that started to work pretty well after the first couple of weeks. Unfortunately, I had been on the three drug combination all last year and out of the blue, when I was admitted to the hospital over night when I fell having broken several bones and just fiding out the hard way that I have moderate osteoporosis all over at the age of 43!! I had a little cough that they heard upon examination, so they said to give them a sputum sample- and what do you know- a methicillin resistent staph infection of the sinuses!! It took six months to get rid of it in total!!! S group founder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2004 Report Share Posted December 1, 2004 In a message dated 12/1/2004 9:12:40 PM Eastern Standard Time, mlw402@... writes: Hi Everyone, speaking of arava, has anyone noticed it help their p as well as pa? I am thinking of adding it to enbrel. My p is also bad at this time. My doctor said if Enbrel alone does not do the job then he is going to add mtx. It seems to me that some of you here do well on Arava. I don't know why he won't prescribe but he claims it is more toxic then mtx and is not being used that much anymore. That is not what I hear on this board though. Janet Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.