Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 I am sure that someone has experienced positive results with sulfazine/sulfasalazine and its cousins. Some people have responded to methotrexate, and now we are seeing many with positive reports on Enbrel and Arava, etc. However, it is important to remember that each person's experience will be different on any particular medication. Our diseases are very sinister. We might believe because we are experiencing a decrease in symptoms and pain when we are on a particular medication that we have found an " answer " for our own situation. But, later, when we enter another period of increased symptoms and pain we despair especially if we are still taking the same medication. The question that is hard to answer is did we really respond to the medication or was it just a period of quietness for the disease. When the disease flares up again, even though we are still taking the same medication, we question whether it was effective or not. Add in potential side effects of any medication and we are in a quandry as to what to do, or even what to believe, especially those of us who suffer from the chronic intractable forms of spondy diseases. There is much research going on and many new avenues of research and positive results are being reported monthly. Much of the research is beyond my understanding, but offers great hope that some understandings of how the disease is triggered and how it can be brought under control. Let us know how you respond to the sulfasalazine. My own experience was negative because it caused great intestinal distress and diahreah. I stopped and started over several times with the same results each time. I gave it the old college try. I am allergic to all medications containing sulfa compounds. Ray Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 On Tue, 8 Oct 2002, hgtyuiokl wrote: > My Rheumy mildly suggested that we try this. If it just does the > same thing as the antiinflamatories and my conidition is under > control with them, it seems like the side effects are not worth it. > Is there anyone who has experienced dramatic and permanent > improvement on this drug, e.g. to the point of remission? I've been on sulfasalazine (aka azulfidine) for 2.5 years now. I've had Reiter's since 1995, with the first flare lasting 12 months and going away by itself (without medication). My second flare started in October 1999, and didn't improve for 8 months during which time I did not take medication except for the occasional NSAID. I had trouble walking and was in a lot of pain. That's when I finally gave in and tried sulfasalazine. The improvement was dramatic, within 1 month the pain in my heel had mostly disappeared, and within about 6 months I was back to almost normal. As far as pain in limbs go (legs, feet, arms, hands), I'm not quite in full " remission " , but for all practical purposes I am. I'm back to playing soccer twice a week (after a long and gradual exercise program to rebuild muscle, etc...), and only occasionally will there be a bit of discomfort which will disappear within a day or two. I don't take NSAIDs anymore (no need for them). I have tried slowly tapering off the sulfasalazine, but invariably after a few weeks, symptoms will gradually re-appear. So now I've been on the same dose for a few years, and the side-effects for me personally have been quite limited. Except for the occasional heartburn (which is easily controlled with tums or easing on bad foods or drinks), that's about it. My rheumy tells me there are a significant number of people out there who react well to sulfasalazine and who stay on it for many years without adverse side-effects. There are also others who can't tolerate the side-effects (such as bloating, gas, etc... -- the worst is probably high liver values). I've only had some of the bloating early on for a few weeks. I think slowly increasing the dose can ease those side-effects. The only thing that I've found (and which is known for sulfasalazine) is that it doesn't seem to be as effective for back inflammation, which I occasionally still get at night. I've found that a consistent program of exercises for the hamstrings and stomach muscles has been quite a help for that. As far as I understand it, sulfasalazine has much less severe side-effects than taking anti-inflammatories where prolonged use can definitely be more harmful than sulfasalazine. So, to answer your questions: yes, I have experienced dramatic and so far permanent improvement on this drug. Based on my experience I would say, give it a try, and maybe try and slowly increase your dose of sulfasalazine if you experience some initial side-effects. Of course, as Ray says, we're all different, and your body may well not react to the drug as mine did. But you won't know until you've tried it. Good luck. Cheers, Bart ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Bart De Pontieu -- bdp@... -- http://blackadder.lmsal.com/~bdp/ (650) 424-3094 -- Lockheed Solar & Astrophysics Lab, Palo Alto bart@... -- 3251 Hanover St., O/L9-41, Bldg. 252, CA 94304 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 Adrienne had positive results with sulfalzine, but it was not doing as much as her doctor felt it could and she was still dealing with upset stomach and pain. It was from this that she was moved to Celebrex and Prozac. That combination has give her the best results. K Adrienne's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 If you start taking Sulphasalazine ensure that you have regular monthly blood check-ups. I was on it for six months and it steadily reduced my blood platelets to the point that I was approaching having a condition known as Thrombocytepenia (sp?). With it you can have internal and/or external bleeding and it will not clot, potentially causing disastrous consequences. Once i stopped taking it It took a while for my platelet levels to start rising, though only to the very lower end of normal. To this day I don't know if they ever returned to pre-sulphasalazine levels. I did not feel any better for taking Sulphasalazine though as always other people's milage may vary. Jed / " \ ASCII Ribbon Campaign \ / - NO HTML/RTF in e-mail X - NO Word docs in e-mail / \ - NO V-Cards in e-mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 Wow, Bart! What a wonderful result! I am truly thrilled at your positive results on the sulfasalazine. Your experience gives me hope, and others, too! You found your 'magic bullet' and for that I am truly happy! I also can't help but be a little jealous. Ray Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 Ray and Bart, Thanks for your thoughts. I wish I knew something about whether the body improves on its own more without the meds or if the meds interfere with the body's own potential recovery. And if I knew that, I would want to know when to draw the line to move from first line anti-inflammatories to the second line ones, in terms of time. I have had this condition for just over six months. Maybe it will still resolve on its own..??? I know I am asking impossible questions.. Ted > I am sure that someone has experienced positive results with sulfazine/sulfasalazine and its cousins. Some people have responded to methotrexate, and now we are seeing many with positive reports on Enbrel and Arava, etc. However, it is important to remember that each person's experience will be different on any particular medication. > > Our diseases are very sinister. We might believe because we are experiencing a decrease in symptoms and pain when we are on a particular medication that we have found an " answer " for our own situation. But, later, when we enter another period of increased symptoms and pain we despair especially if we are still taking the same medication. > > The question that is hard to answer is did we really respond to the medication or was it just a period of quietness for the disease. When the disease flares up again, even though we are still taking the same medication, we question whether it was effective or not. > > Add in potential side effects of any medication and we are in a quandry as to what to do, or even what to believe, especially those of us who suffer from the chronic intractable forms of spondy diseases. > > There is much research going on and many new avenues of research and positive results are being reported monthly. Much of the research is beyond my understanding, but offers great hope that some understandings of how the disease is triggered and how it can be brought under control. > > Let us know how you respond to the sulfasalazine. My own experience was negative because it caused great intestinal distress and diahreah. I stopped and started over several times with the same results each time. I gave it the old college try. I am allergic to all medications containing sulfa compounds. > Ray > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2002 Report Share Posted October 11, 2002 > My Rheumy mildly suggested that we try this. If it just does the > same thing as the antiinflamatories and my conidition is under > control with them, it seems like the side effects are not worth it. > Is there anyone who has experienced dramatic and permanent > improvement on this drug, e.g. to the point of remission? My two cents, I took this last Nov @ Dec. The results were very bad for me. Gas, nausia, and the runs. I added to this by stayin on it and thinking that this will pass. Maybe it is just me I thought. Well it didn't and when I saw the Dr. next I was told to stop, right now. On another subject I had the rare experience of my insurance carrier changed my prescription meds from the one the Dr. and substituted on that they covered. I don't think I am in control enymore:) I have a message in to the Dr. now. I won't even start about the Social Security folks. I need a good happy pill! Be well and....... M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2002 Report Share Posted November 1, 2002 Ray, Bart and Mike, Thank you for your replies, which I read and obsessed about for long enough to spit at China. I made the following decision after hearing that there is no objective measure of the disease and that my objective swelling was questionable. I called my doctor and asked what would happen if I went off the NSAIDs for a while. She said try it. It was fine for 5 days and then flared in the knee. I took one Naproxen and went another ten days with mild symptoms. I improved my diet and began swimming. I travelled for work and the sitting seemed to provoke it. I took one more Naxproxen and that seemed to end it. I have had no meds for another ten days and have no symptoms other than weakness from all the inactivity when I was badlye swollen. It SEEMS like this is gradually decreasing and going away. Next appointment with my Rheumy in four months. I wish you all well. I hope I become one of those people who really does understand the problems you are struggling with but escapes the chronic condition myself. But if not, " I'll BE BACK " ... Ted > > > Ray and Bart, > > > > Thanks for your thoughts. I wish I knew something about whether the > > body improves on its own more without the meds or if the meds > > interfere with the body's own potential recovery. And if I knew > > that, I would want to know when to draw the line to move from first > > line anti-inflammatories to the second line ones, in terms of time. > > I have had this condition for just over six months. Maybe it will > > still resolve on its own..??? I know I am asking impossible > > questions.. > > Hi Ted, > > I had exactly the same worries/questions when I first got this disease. I > was extremely sceptical during my first flare of taking any medicine at > all, and I only used NSAIDs during the first 3 months when the pain was > unbearable. I did not use any other drugs then, and the flare disappeared > (very gradually) by itself after about 9 to 12 months. Mind you, it took > quite some time for my muscles to return -- I lost most of the muscles on > my legs and one arm (and 30 pounds in the process). I found that regular > exercises are extremely helpful, no matter how minimal they are initially > (when the pain is still very dominant). In hindsight, much of the pain I > felt in the latter part of my first flare probably could have been > lessened if I had been under care of physical therapy or so. I was in > natural remission for almost 4 years after that, with no pain whatsoever > (and most amazingly to me, no permanent damage to my joints who had taken > such a beating). > > My second flare was a completely different beast. For me it marked the > transition into a chronic condition, I think. I waited and waited for 8 > months for the flare to lift by itself, but it basically didn't. The > initial intensity of the inflammation was not as bad as the first flare, > but the inflammation basically did not decrease appreciably over 8 months. > That's when I decided to start taking sulfasalazine, after agonizing over > " interfering with my body's own potential recovery " (I though about it in > the same terms as you do now) for months. During this time I had lots of > discussions and arguments with my rheumatologist about this. I discussed > the effects of sulfasalazine in my mail yesterday -- for me they were > extremely positive, and I am still thankful to my rheumy then for being > persistent and finally convincing me. I have very little doubt that my > body would not have " recovered " by itself in this flare. I've had several > discussions with one of the rheumatologists at Stanford University who > researches reactive arthritis (amongst other diseases), and my impression > is that what happened to me often happens to patients : first flare is > " benign " and goes away by itself, followed by a second flare during which > our immune system gets " stuck " and does not reset itself anymore, and a > more chronic form appears, punctuated by subflares, in which no full > remission (other than drug-induced) is obtained anymore. By the way, based > on my attempts to reduce my sulfasalazine intake and the subsequent return > of symptoms, as well as the very rapid reaction to first use of > sulfasalazine after many months of no improvement, I think I can exclude > just a " period of quietness of the disease " for my lack of symptoms the > past 2 years. I can also say I am not in natural remission -- the drugs > just happen to do a really good job of controlling the disease right now > (knock on wood). > > Maybe other people have similar experiences. In any case, based on the > above, to your questions. Has your pain/inflammation shown a slow and > gradual improvement? Is it your first flare? If so, I think reactive > arthritis is often observed to go away by itself. > > For what it's worth, I am more hesitant of taking NSAIDs than of taking > sulfasalazine. But as others have noted, side-effects of sulfasalazine can > be serious (see the mail about platelet counts), and I am still being > monitored every 3 months for such effects. My rheumy at Stanford tells me > that side-effects when they do occur most often happen during the first > few months of taking the drug. I am considered much less at risk > (hence the check-up every 3 months instead of 1 month) since > I've taken sulfasalazine for 2.5 years now, without adverse effects. > > One other thing about sulfasalazine (from talking to my rheumy), it is not > a new drug -- it's been in use for 50 years, and the side-effects profile > is very well known and also much better known than the newer drugs like > Enbrel (I personally am very hesitant to take the new wonder-drugs, > since they've only been in use for a few years now and no-one knows what > multi-years use means as far as side-effects go). > > Hope all this helps -- don't hesitate to contact me directly if you have > more questions. I hope that if you do decide to take it, it will be as > beneficial for you as it is for me. > > Cheers, > Bart > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~ > Bart De Pontieu -- bdp@l... -- http://blackadder.lmsal.com/~bdp/ > (650) 424-3094 -- Lockheed Solar & Astrophysics Lab, Palo Alto > bart@s... -- 3251 Hanover St., O/L9-41, Bldg. 252, CA 94304 > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~ Quote Link to comment Share on other sites More sharing options...
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