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Leflunomide vs Sulfasalazine

Posted , 8 users are following.

combatballerina
combatballerina

I'm currently taking 8.75 Preds per day and my rhematologist wants me to start on one of the above drugs witha view to 'running down' the Preds eventually. Does anyone have any experience of these drugs and if so, whether one is preferred?

 

0 likes, 14 replies

14 Replies

  • tina-uk_cwall
    tina-uk_cwall combatballerina

    Posted

    Hello cambatballerin, may I just ask how if you have GCA or PMR or both, when you were diagnosed and what your tapering regime has been like thus far. Regards, tina
    • combatballerina
      combatballerina tina-uk_cwall

      Posted

      Hi Tina, many thanks for your response.  I have PMR (or/and possibly RA as waiting to be confirmed from my rheumotologist) and I'm now between 8.0 and 8.50 Preds. I'm trying DSNS. I think my rheum wants me to take Sulfasalazine withg a view to reducing the Preds when the Sulfas kicks in. I'm a bit confused as it seems like Leflunomide might be  a better drug but the rhem is loath to go that route and just says the former is more effective. Any ideas?
    • tina-uk_cwall
      tina-uk_cwall combatballerina

      Posted

      You know what combatballerina, I don't know why your rheumatologist wants to start you on any of the drugs anyway, not unless you are diagnosed with RA in which case one or other of these drugs are used for RA. My friend has RA but she takes MTX and only takes preds when she has a flare. So I wonder if that's what your Dr wants to do?

      don't forget you can have both PMR and RAnin which case the rheumatologist will want you on both preds and one of the drugs specifically used in the treatment of RA. Have you actually noticed a reduction in your symptoms whilst taking preds and what was your starting dose and when? Regards, tina

       

  • MrsO-UK_Surrey
    MrsO-UK_Surrey combatballerina

    Posted

    Both Leflunomide and Sulfasalazine are DMARDs, disease-modifying anti-rheumatic drugs.  Both are commonly used to treat rheumatoid arthritis, and both are believed to help in reducing the steroid dose for those patients who are experiencing problem with their reductions. Leflunomide can take about 6 weeks to work whilst Sulfasalazine can take up to 12 weeks.  One PMR expert in the UK has said he has seen good results with Leflunomide, but it's probably a case of choosing the best one that works for you and you won't know until you try it.  

    However, if you've managed to reduce down as low as 8.75 but are getting stuck there with returning symptoms, have you tried leaving longer between each very tiny reduction?  It may just be that you have reduced too quickly to this stage and may have reached a 'maintenance' dose for now. 

  • EileenH
    EileenH combatballerina

    Posted

    There is as yet no published evidence that these additional drugs work reliably to help reduce the dose of pred. Some rheumatologists claim they have used them successfuly but there are no official trials. There were 3 trials using methotrexate as a steroid sparer, as it is called, but they were inconclusive. One said it helped achieve a lower dose, one said it didn't and the third didn't know. 

    What may happen is that patients who respond well did not actually have PMR but LORA (late onset RA) which can appear identical to PMR in its early stages and these are all drugs used for RA so would probably achieve a good result. There was a trial using leflunomide which looked promising with 21 out of 23 achieving remission, one patient was lost to follow up. However, since then I have come across several patients who did well at first with it but later had to stop taking it because of the side effects - which, when they happen, can be considerable. 

    Many patients who have previously failed to reduce at the rate their doctors wanted them to - in our general opinion too fast a rate or in too big steps - have been able to reduce successfully using the slow reduction plans mentioned by lodger. Where these "steroid sparer" drugs are all associated with side effects, some quite unpleasant or serious, reducing with these slow plans have no side effects! Several rheumatologists have expressed interst and they are being used for other patients too. With success.

  • dan38655
    dan38655 combatballerina

    Posted

    As one who has reached a seeming "sticking point" of 5mg pred, and still with considerable symptoms that migrate bi-monthly it seems (lately to the collarbone/ ribcage area, moderate to severe), I have considered my rheumy's recomendation towards adding sulfasalazine or plaquenil.

    But Eileen's report of inconclusive outcomes prevents me from taking the Rheumy's advice.

    Seems to me that some patients who have PMR likely also have some RA activity intheir skeletons, so the occasional positive result from taking additional drugs would be expected.

    I think these extra drugs are either/both for helping those patients with RA activity and/or are possibly an experiment of wishful thinking. Taking them makes no sense to me.

    • lodgerUK_NE
      lodgerUK_NE dan38655

      Posted

      Dan look at the answer to combatballerina and follow the link and then send for the two reduction plans free of charge.

       

    • MrsO-UK_Surrey
      MrsO-UK_Surrey dan38655

      Posted

      Dan, from my experience of seeing many people start on one of the steroid-sparing DMARDS, such as Methotrexate, Leflunomide, Sulfasalazine, although these drugs don't help them to completely get off steroids, in many cases it has helped them to reduce their steroid dose much further down than previously, so to a lower dose that at least leaves them with fewer side effects.

      The 5mg dose proves a "sticking point" for many - it did for me.  But an increase to 10mg and a quick descent back down to 5 which became my maintenance dose for 5-6 months proved very successful as did my continuing reductions in just 0.5mg decrements tapering on just one day of the first week, two of the second, three of the third etc.  It took an eternity to reach zero Pred, but I got there eventually 3 years ago.  If you follow one of the very slow regimes, you will hopefully be successful too.

    • lodgerUK_NE
      lodgerUK_NE MrsO-UK_Surrey

      Posted

      This is a personal story and I do NOT recommen anyone else to do what I did, it is a very personal decision and one that should be made by the person themselves.

      Two years into GCA and after two flares and still on 20mg, I was offered a steroid sparing agent - Methotextrate, being a newbie at that time, well sort of - .  I asked 'what will it do' enable you to lessen the pred. I asked would it cause me to go into remission sooner  - answer no, just lessen the pred. I said I would think about it and I did.

      I reasoned that the trouble wass that all the steroid sparing agents come with their own side effects so I did the math, - just for Metho

      Pred has 83 recorded side effects and no-one I have ever known has ever had them all  - the most common ones encountered are those of the peice of paper that comes with the tablets.

      Adding metho caused the side effect number to go up to just over 100.  I thought, wait a minute, my body has enough to cope with, without adding more side effects that could happen.

      So my answer was No thank-you.  No they were not pleased but they respected my decision.

      5 years from being diagnosed with GCA - remission and still counting now 4 years into remission.

      SO AS I SAID - A VERY PERSONAL DECISION.

      Then add the listed side effects of the steroid sparing agents.

      I had GCA, as you will know

    • MrsO-UK_Surrey
      MrsO-UK_Surrey lodgerUK_NE

      Posted

      Lodger, like you, I 'survived' purely on Pred (for me both GCA and PMR) but was very lucky to be able to get down from the high 40mg starting dose in fairly textbook fashion, with just one severe flare at the 5mg point. Yes there were still symptoms along the way but bearable in comparison to my pre-steroid days. So the likes of Methotrexate were never in the frame, and with only one kidney any such drugs could have proved a very risky scenario for me.  I count myself lucky that Pred worked, and I'm sure that you do, too.

      However, there are people who have repeated flares at higher doses of steroids in spite of trying slow tapering regimes and having other conditions ruled out.  I have come across a few such people who have found that one of the DMARDs has helped them to get much lower on the steroids than before, and, in fact, we have people posting here and on other forums occasionally who say that Methotrexate, for instance, has worked for them.  So I feel we can't discount it when it helps a few desperate patients to at least eventually lower their steroid dose.

    • EileenH
      EileenH dan38655

      Posted

      The rheumy needs to understand the nature of what the reduction is for: to find the lowest dose that achieves the same result as the original starting dose. It is NOT TO AIM FOR ZERO. If you are at 5mg and doing fine but 4mg doesn't do the same then you have achieved that end. You may manage to get lower with a slow slow reduction - but you may not. That doesn't matter. 5mg is a very low dose and your rheumy should accept that for now and not insist on adding potential extra side effects from another fairly unpleasant drug - it has its uses, that is true, but it isn't nice. If you don't really need it why take it?
    • EileenH
      EileenH MrsO-UK_Surrey

      Posted

      The difference is the dose - 5mg is LOW. A patient who can't get below 15mg is a different matter and a re-evalluation of the diagnosis is called for.
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