Guest guest Posted January 27, 1999 Report Share Posted January 27, 1999 In message <607bc51e.36acdd47@...>, CTNATIVE@... writes >From: CTNATIVE@... > >Dear Dave@...: > >Welcome to the PA mailing list. We are a group of about 50 PA'ers, please >introduce yourself if you wish, > > >Founder and Moderator > I have had P for 13 years and in the last 2 months, depsite being on Neoral have developed PA. My Rheumy says at the moment it is only manifesting itself as tendinitis and enthesitis. I wake up in the morning with really stiff fingers but they do loosen within a minute or two. I'm a Veterinary Surgeon and today I X-rayed my hands and feet to see if any arthritic change...none yet. (I stubbed my little toe 3 weeks ago and it is still red swollen and painful...I suspect that this could be the PA version of the koebner effect and now have severe tenosynovitis in this toe as a result of the injury) I can't go on any DMARDS at the moment as I'm on Neoral (that seems to have stopped working as my P is now coming back in all the places it was in last summer). My Rheumy seems to think at the moment there is probably no need to start on DMARDS as as there is no *joint* involvement. What are your experiences? I have read that even with enthesitis (e.g. the mild achilles tendonitis at the junction with the heal bone and the epicondylitis on both epicondyles on both elbows that I have) bone spurs can develop with time....so I'm thinking that may be DMARDS should be given. I'm coming off Neoral in 4 weeks time so maybe that would be the time to consider MTX, although my Rheumy suggests sulphasalazine and my dermy has suggested acitretin.....both of these will only treat either skin or joints whereas MTX will treat both. I don't want to give up alcohol!! I've already given up smoking 7 months ago, surely we're allowed one vice? -- Dave Bentley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 1999 Report Share Posted January 28, 1999 Welcome Dave, It is sure great to have a " medical " professional in the group. It is a hard decision to go on Methotrexate, but Neoral is also a DMARD isn't it? When I took Neoral, I had trouble with high blood pressure, and for a while I also took it with Metho for a synergistic effect. The Metho alone worked well for me for quite a while. The pain, as well as the joint degeneration were the two points for me -- you need a certain quality of life after all. I also have chronic tendinitis and bursitis in the arms, shoulders, wrists and fingers, but the DMARDs when working take it away magically. What is also weird is that it moves around at will within a day or two sometimes? It makes you feel nuts! Anyone else out there have anything they can share with Dave? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 1999 Report Share Posted January 28, 1999 In a message dated 1/28/99, 11:49:40 AM, onelist writes: << As far as vices go, well that's your decision. I have drinks every once in awhile. My lab tests have always been good. I think for a majority of folks this is the case so take it with a grain of salt the stories people give about the bad results they have on Mtx. Yes it does happen but infrequently. But if push comes to shove, I would give up all drinking over becoming bed ridden. Take care, Dan>> I have modified my alcolhal intake, but still imbibe moderately with no ill effects noted. I take 15 mg MTX weekly and 200 mg Neoral daily. I have reduced my NSAIDS to nil. I take the MTX on Wednesdays, and have a beer or two or some wine on Fri-Mon, so far so good. I also get up and walk for 2-3 miles every morning before work - I feel that walking has done quite a bit of good in my case. When I first started I hobbled slowly for 1/2 hr, and stairs were really slow. I got a new car with atuomatic transmission and power steering because it hurt to drive a manual. After a few years I walk as well as most anybody. and I want a new sports car :-) happy trails - Rob Glover Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 1999 Report Share Posted January 28, 1999 Dave Bentley wrote: > > My Rheumy seems to think at the moment there is probably no need to > start on DMARDS as as there is no *joint* involvement. What are your > experiences? I have read that even with enthesitis (e.g. the mild > achilles tendonitis at the junction with the heal bone and the > epicondylitis on both epicondyles on both elbows that I have) bone spurs > can develop with time....so I'm thinking that may be DMARDS should be > given. > > I'm coming off Neoral in 4 weeks time so maybe that would be the time to > consider MTX, although my Rheumy suggests sulphasalazine and my dermy > has suggested acitretin.....both of these will only treat either skin or > joints whereas MTX will treat both. I don't want to give up alcohol!! > I've already given up smoking 7 months ago, surely we're allowed one > vice? > Hi Dave, welcome to the group. I disagree with your Rheumy. The P can be bad but the PA combined makes it hell. I took what I thought at the time was aggressive treatment in starting Mtx 15+ years ago. Even being on Mtx is no guarantee that joints will not be destroyed, but you need to slow this process down. I am glad I did this. I have had only one joint in a finger replaced and one fused so far, but feel/know that without the Mtx I would not be able to function at all. I went off this for a year which probably set me back several years in terms of joint involvement. I have had no bad side effects up to 20 mg/wk oral. Also, took folic acid for the last year or so. The good side effect of Mtx is that it helps to clear the P as well! I also take Relafin. I had decided to switch to Arava several weeks ago. The Mtx was starting to lose a little ground even with increasing dosage. I have to tell you I am feeling pretty darn good today. I had a scare last week with stomach problems and thought that it was a side effect of the Arava, but this week I am OK. When I was on other NSAID's it seemed that they would work for a short time (3 to 6 months) and then quit working. I would switch to another and then another. I could even go back to an old one which would work again for a short while. Maybe this effect has happened with the Mtx. Which is why the Arava is working now, don't know for sure. As far as vices go, well that's your decision. I have drinks every once in awhile. My lab tests have always been good. I think for a majority of folks this is the case so take it with a grain of salt the stories people give about the bad results they have on Mtx. Yes it does happen but infrequently. But if push comes to shove, I would give up all drinking over becoming bed ridden. Take care, Dan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 1999 Report Share Posted January 28, 1999 Dave, I was told that the mtx treated the P as well but on 25 mg and taking mtx for over 7 months I went to the Dermy and got dovonex for the scalp to finally clear it up for a while. The Dermy said it should be cleared from the mtx. but as the PA wasn't under control the mtx was probably concentrating on the joints that hurt the most. Ask about folic acid when/if you start mtx. It is suppose to help prevent some side effects. Pat Euaula, Alabama 4 beardies and 2 maltese (LOL) try grooming with PA in your wrists Firmly belief in sport braces! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 1999 Report Share Posted January 28, 1999 Join the crowd, giving up alcohol!! I didn't have any for a yr. and went to Ireland and around, and with my rheumy telling me I could have one " once in a while " I had a wick or so every day. I still will have little wine with my husband occasionally. Be careful as it will get to your liver. Mtx is worth it for me. Good luck.Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 1999 Report Share Posted January 29, 1999 In a message dated 1/28/99 5:09:25 AM Hawaiian Standard Time, dave@... writes: << I don't want to give up alcohol!! I've already given up smoking 7 months ago, surely we're allowed one vice? >> I am on 15mg MTX weekly and 5 mg Prednisone daily. My rheumy also told me it was okay to drink now and again. Well...........I had a little too much wine ( a lot too much ) It was the first time in a very long time that I'd had more than 1 or 2 beers, and I was very sick the following day. I didn't mix drinks, I had eaten dinner, etc. I don't know if it was because I hadn't been out in forever, or if it was the medication that I'm on? Just something to keep in mind. Be well. Trish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 1999 Report Share Posted January 29, 1999 In article <f7bbfb36.36b08268@...>, CTNATIVE@... writes >It is sure great to have a " medical " professional in the group. It is a hard >decision to go on Methotrexate, but Neoral is also a DMARD isn't it? > Yes, but it seems to have stopped working now on my P. I was on 250mg daily initially and my P disappeared within 3 weeks. After reducing to 200mg daily it strted to come back almost overnight. I've had no side effects at all but my derm wants me off the stuff in 3 weeks time for obvious reasons (cancer risk) >When I took Neoral, I had trouble with high blood pressure, and for a while I >also took it with Metho for >a synergistic effect. > >The Metho alone worked well for me for quite a while. > >The pain, as well as the joint degeneration were the two points for me -- you >need a certain quality of life >after all. > Some days I feel OK, other days terrible...its the depression that's just as bad as the tendinitis. Although my Rheumy says my joints aren't affected yet (my finger stiffness in the morning goes away within a minute or two) it's the *fear* that one day I may have to give up work and playing the piano that gets me down. >I also have chronic tendinitis and bursitis in the arms, shoulders, wrists and >fingers, but the DMARDs >when working take it away magically. Anybody have any experience with sulphasalazine?....I was on the stuff 16 years ago on and off for a year when I had colitis (any connection wiith P/PA I wonder) and felt fine,. > > >------------------------------------------------------------------------ >To unsubscribe from this mailing list, or to change your subscription >to digest, go to the ONElist web site, at and >select the User Center link from the menu bar on the left. -- Dave Bentley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 1999 Report Share Posted January 30, 1999 Dave, I was on Sulphasalazine for a really short time, maybe a month or 2 and my stomach could not tolerate it. I was in the bathroom all the time with diahrea (sp?) and just could not give it enough time to see if it would help. Angera Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 1999 Report Share Posted January 30, 1999 > OK Angera, how do you do it? The Images that is!! Dan > > --------------------------------------------------------------- > [image] > > HAPPY VALENTINES DAY ! ! ! ! ! > > [image] [image] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 1999 Report Share Posted February 3, 1999 Dan, May I post to you privately since this is not a Psoriatic Arthritis topic? Because I would be glad to send over the information to you. You can e-mail me at angera@... if you would like. Angera Quote Link to comment Share on other sites More sharing options...
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