Reducing the Steroid Sparers

[missretired]

Hi to all, I'm looking for some advice on how you reduce your steroid sparers. I'm using the really slow reduction plan to great effect. No flares at all and I've gone from 10 to 7, whereas the past I would have had at least 1 flare per reduction yoyoing back and forwards. I'm also having Bowen treatment for my PMR, Fibromyalgia and Costocondritis, so overall the light at the end of the tunnel is getting much bigger and brighter. Now my mind is turning as how you incorporate a reduction of your steroid sparers. I used to take Methodtrexate but after and year or so I changed to Leflunomide and now take 20mg a day. Last month my rheumy wanted me to reduce the steroids quicker than the slow reduction programme, but I said I was getting such good results from the slow tapering method I would keep to that if it was OK with him. I think he and my GP worries about the side effects of steroids including osteoporosis as I am on a low tertile for one so young, but the last Dexa scan showed a small improvement in me and a small worsening in all the others in my age band, so the Alendronic acid and steroid reduction must be doing something. I'm concerned, when the time comes (and I'm not even sure when that is) I may be advised to reduce in a way that, well basically doesn't work for many sufferers and will put me back to square one. So any advice any forum members have on their own experiences or on their own research will be very much appreciated. Thank you

[PMRpro Ambassador]

Not sure I understand - did you also yoyo when reducing while just taking a steroid sparer?

I have no doubt your rheumy believes the successful reduction is solely due to the leflunomide and not the "DSANS" reduction plan! I suppose it depends on how your rheumy wants to use the leflunomide - is he expecting you to reduce the PRED to zero and continue leflunomide? After all, PMR is like a piece of string in terms of how long it goes on! Mine is still there (I think) after 10 years - but it is very quiet on 4mg pred!

[missretired in reply to PMRpro]

Thank you for your reply, PMR Pro. Yes, I used to yoyo even with the steroid sparer on board. I stopped yoyoing when I used the slow tapering method as recommended by yourself which is around the same time as the Leflunomide should have started to work. This is also about the time that the dose was increased to 20 mg.

You are so right about PMR being a piece of string and how long it remains active. I'ts long past when my GP said the PMR would be gone, and along the way I've managed to collect Fibromyalgia and Costocondritis.

You're also right in thinking my rheumy probably does think its the leflunomide that is doing all the hard work and not the slow tapering down and the Bowen treatment. I think he knew he was onto a loser when he got his sheet of paper out to write down his suggested reduction plan and I said that with the greatest of respect I would not change how I was doing things as it seemed to be working, and that in the scheme of things I probably took less steroids with the slow method and no yoyoing than with a faster method and yoyoing. I don't think I was a favourite patient after that. Still you've got to be true to yourself, and although I don't know if its the slow taper, the Leflunomide or the Bowen or a combination of the three, together they are working for me. We've all been in a bleak place one time or another with the PMR and to just be feeling as good as I do seems a miracle.

I hope that your PMR keeps very quiet for a very long time!

[PMRpro Ambassador in reply to missretired]

Hehe - you sound a bit like me! Good luck! I wonder what would happen if you reduced the leflunomide...

I do wish they'd try very slow reductions before adding in the "steroid sparers" and their potential side effects - but we are getting there. It will be tried at some point.

[missretired]

I will take that as a compliment - thank you. I have got to admit I am not in the experimenting mood at present. It is going so much better at present that I don't want to rock the boat and reduce the leflunomide without other users experiences. I'm just enjoying having some energy and twinges and bites that I can deal with. In hindsight, maybe I should have been braver initially, and used the slow reduction plan before the methotrexate was prescribed, but I was continually flaring, stuck on 20 mg of steroids and willing to try anything to get the pain to stop.

I do think the slow reduction/taper plan is getting more widespread acceptance, and hopefully it won't be too long before it will be, as you say tried at some point.

[Green_girl]

I carried on with Meths after ending steroids, as the Rheumy was concerned that I might have Seronegative inflammatory arthritis. As my CRP was great, I decided to try to wean myself of the Meths too. The Rheumy had no idea how to do this, so I sort of followed the reduction plan for pred - alternating weekly doses for a month (e.g. 15mg one week, 12.5mg the next), if the blood test showed no increase in CRP, I'd then spend a month on the new dose and have another blood test. If this was OK, I then did alternating doses for 12.5mg one week and 10 the next and so on, just following the pattern. It worked well for me. Proved I don't have SIA (thank goodness). And I have a happy Rheumy.

When I asked Professor Baskhar at our first London Support Group meeting how he would do it, he said the slow method was a good way.

Not sure how this would work on your steroid-sparer, but could you fashion a similar plan? I would run it past your medic first though......

Hope this helps!

[missretired in reply to Green_girl]

Green Girl thank you so much for your reply. It really does help me. My rheumy is a bit gungho sometimes ie work through the pain when i was reducing on the standard 1 mg per month. All it brought was flare-ups