Reducing steroids while taking Leflunomide

Hi all I know a few people were following how I was coping with reducing pred while taking Leflunomide, well since last October have been trying to reduce from 5mg to 4mg not having much luck at the moment, taking 10mg of Leflunomide and 5mg of pred all pain and swelling in knees,ankles,feet disappeared Rheumy said to drop 1mg of pred each month but like every one knows 1mg is a big drop after 5mg, on the 1st March attempted another reduction of 1mg have stuck it out for 3weeks last weekend was the final straw took myself back to 5mg of pred phoned Rheumy nurse to explain the pain I was in, so dissapointed doing so well on Leflunomide no pain or swelling in legs but seems like I need to stay on 5mg of pred for awhile now, Rheumy has agreed just wanted to get off of steroids to get rid of all the side affects but would rather have a shorter life on them being able to walk the dog go shopping than live life in pain all the time, no doubt eventually I will get of them, just wanted to let people know after all this I know one day I will be able to reduce and not be in pain, good luck to you all will write again if and when I get down to 4mg, what a long journey we have to take never thought I would still be like this 2yrs down the line, I know some of you have been like this for years, hope you will all be pain free soon. Val x

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  • Hi, I've had PMR since November 2010, which has now been diagnosed as LORA. I started off on 15mg steroids, and because I wasn't able to reduce as the doctor thought I should I was referred to a rheumatologist who prescribed Leflunomide, which I have been taking now for 5 years. Despite trying I have been unable to reduce comfortablely below the 5 1/2 mg I am taking at present. Two years ago I got to 4 mg however my hips and knees were so stiff I couldn't walk very far, and my ankles were extremely painful for well over a year. My doc said to try to go up to 10mg steroids and this obviously sorted me out. So as a protest I decided I would stop taking Leflunomide, however I found out that steroids alone would not control the pain and stiffness. So I began taking 20mg Leflunomide again, and over the last 18 months or so have very slowly reduced to 5 1/2 mg steroids. I'm not certain whether I will ever get off steroids, and with hindsight do wonder whether if I'd been given more time at the outset, and did a really slow reduction whether I would have needed Leflunomide. However where I'm at just now is that I can get out walking, I can do weight training exercises and I'm more mobile than I was a couple of years ago, and despite side effects it's worth keeping taking the tablets!

  • Hi Lizzery glad to have found some one who has taken Leflunomide for such a long time, apart from the initial few weeks with an upset tummy and pains I have felt fine have been on it for 6mths now, did think it was Leflunomide that took all the stiffness, pain and swelling from my knees,ankles and feet but now feel it must be a combination of steroids and Leflunomide as going down to 4mg of steroids bought it all back again Rheumy has agreed that I can stay on 5mg of steroids until I see him again in June, the last 6mths I really felt great out walking the dog shopping no problem, I feel the same rather put up with a few side affects than to be in pain. Val x

  • Well done you. Having that outlook on your quality of daily life is the most important thing and the hardest bit.....accepting that steroids are going to be a long term part of our lives! I've had pmr for nearly 8 years now getting it at 54!!!! I have been on methotrexate for 7 months now and just reducing steroids to 7mg and fingers crossed all is going quite well and can manage a lot better but have resigned myself that this is how it's going to be and get on with life as I tell myself things could always be a lot worse but it's not easy.

  • Hi Pred60lady I have now come to the conclusion that this illness may be here to stay or may go away but realised Rheumys haven't got a magical cure which 2yrs ago I was hoping for, my mum started with it in her fifties hers never went away but she just got on with her life never complained, now I can walk again I'm out with my friends dog walking every morning even some days I hurt in other places, they are all amazed how well I'm doing now, like you said you have to get on with life and I'm glad that I have finally reached that conclusion. Take care and hope you stay free of pain. Val x

  • Hi Val glad to hear you can get out and about okay now and it's interesting to learn that your Mother had it too. Take very good care. Ann

  • Hi Valerie,

    Being on 10mg Leflunomide did you decrease Predisone from 6 to 5mg or 6 to 5,5.mg?

    I am using DSASM

    I am very scared, but feeling fine except

    fatigue and weakness

    I have been taking Leflunomide for 3 months.

    Thanks

    Orchid47

  • Hi Orchid47 my Rheumy told me to drop from 6mg to 5mg in one go that was awful the pain I was in that's when I told him I couldn't go on any longer with the pain, he did say he was surprised I managed to get the low, then he started me on Leflunomide, I wouldn't go from 6to 5mg best to take 5.5mg I used to drop mine on the 1st of every month but have realised a lot since reducing from this site, when I was reducing every month if you are still in pain by the beginning of the next month don't drop wait until you aren't in any more pain, I always gave it about 2-3weeks for my body to get used to the new dose, if still in pain I would go up the half gram and try again later, wishing you luck reducing. Val x

  • "would rather have a shorter life on them"

    I don't think there is any evidence that being on low dose pred for life shortens your life.

  • My rheumy keeps his GCA patients on 5 mg, not for life, but for 2 years, citing this produces a better long term outcome.

  • Sounds like a sensible sort of chap! One likes his PMR patients to stick at 5mg for up to 9 months - finds that helps the rest of the reduction, fewer adrenal problems.

  • Yes, he's a knowledgeable fellow, professor and researcher, but sometimes out of these roles one can lose touch with the 'mundane' patient side of things, and I do feel this sometimes....can't have everything maybe...

  • Hi PMRpro just wondered about the glucose aspect of steroids and the cardiovascular aspect does it not weaken the organs, I don't know only my mum had a heart attack out of the blue she was a very fit lady apart from being diabetic on insulin and on steroids for PMR just remember some one saying steroids do all sorts of things to the body. Val x

  • The inflammation of PMR probably does some damage to the linings of the arteries - especially if you are sort of borderline with GCA without it affecting your head arteries. The pred should help in that respect but once the damage is there it probably remains, just doesn't get worse.

    But all insulin-dependent diabetics are at an increased risk of cardiovascular disease whether they are on pred or not.

  • Thank you PMRpro for the explanation just thought that steroids weaken all the organs that was why my mum had a heart attack. Val x

  • If it does I'm in trouble!!!!! No - it doesn't really,

  • Haha no you know a lot more than I do,it is good posting things to people who know more about pmr, do you think it can be hereditary has there been any surveys on passing pmr in family's. Val x

  • No, it isn't hereditary. There is said to be a higher incidence amongst populations with a Scandinavian heritage - in the USA at least. I know one Swede and one Norwegian - and they don't know of many others so I am a bit sceptical about the genes bit!

  • Must be just a coincidence that we both had it. Val x

  • Hi pmrpro what do you class as a low dose of preds.

  • A low dose of pred is under 10mg, 10-20 is considered moderate, 20mg and above is high.

  • Hi Val

    Just back from a keep fit lesson, was tough with body bar and skate board.

    Before PMR I spent every day 3 hours at the fitness club, now I am exhausted after

    one lesson.

    I appreciate very much your advise. I took today 5.5mg and

    I shall take now 6mg for the next

    4 days.

    Even with a special cutter, impossible to cut 1mg Pred. into 2 even halves.

    Wish you too good luck with the decreasement of this awful drug.

    Orchid x

  • Hi Orchid47 it is such a shame to have to give up activities we enjoy, my main excersise was walking miles with my dog every day, just so pleased to be back on 5mg of steroids and 10mg of Leflunomide never thought I would ever say that but to be able to walk with my dog is amazing. Val x

  • Hi Val

    My whole life used to be sport. 15 years ago I won a trilaton. All ages parcitipated.

    For the past 30 years I was a member of a fitness club and a cycling group. Enjoyed even Zumba, Aerobic lessons, feeling young among all the youngsters. Now had to switch to morning classes, where all the pensioners take part as the lessons are much easier. Started also Reformer Pilates , which helped me a lot getting back to exercising on a regular base.

    Also swimming helped me , getting back to exercising , as I was so stiff from PRM.

    It made me feel more positive and I hope now to get rid of Pred. within a year.

    Sport is the best thing against depression.

    Hope you will be able to extend your walks with your dog from day to day.

    Best luck and good and better health for the future.

    Orchid

  • Wow Orchid47 well you must of been really fit, well that just proves when people say perhaps it's your diet or you weren't active enough that bought on PMR, I know nobody really knows what brings these diseases on but for you to be that active it must of been heart breaking to get ill, must admit I'm not into exercise my main activity has always been walking,up hills no problem, until this happened now I get out of breath, I'm 67 every body couldn't believe how old I was always kept my weight down kept active but now I really feel that all this pain has aged me and the weight I have put on, my hair has got thinner, but I have come around now to thinking well it's happened so just get on enjoying life what will be will be now I can continue walking maybe not so far or fast but I'm still out there enjoying the fresh air,hope you can gradually build your strength up to continue with some of your sport.Val x

  • Hi Val

    I shall be 70 in May bless God.

    I think that I got PMR/GCA due stress and worries.

    7 years ago my mum needed care 24/7. At the memory clinic

    the tests showed that she has Alzheimer disease in addition to cancer.

    She is in a nursing home and it is heart breaking to see like she is today

    unable to speak .Very seldom she knows who I am.

    In addition to that my mum also suffers under an autoimmune illness for the past 68 years and takes a steriod sparing drug, Immuran for the past 20 years.

    So I think that are the reasons for PMR. It is not enough to live healthy, you also need to have the right genes and a lot of luck to be healthy

    all the time.

    Enjoy you walks and I hope that we gain strenght again and loose the extra weight from Predisone very soon.

    Orchid xx

  • So sorry Orchid for your mum and the worries of looking after her, do you know I think it is stress brings these things on, I had a nervous breakdown 8yrs ago, my mum had a heart attack she had PMR but also had diabetis for 20yrs, then I had to work and try to keep my house going and look after my dad for 8yrs, doing that for 8yrs really wore me down, had trouble where I worked so it just finished me off, have been on anxiety and depression tablets ever since, I have thought it could be stress bring pmr on, oh well let's just hope pmr fizzles out you never know we could be lucky, take care. Val x

  • Taking care of beloved parents who suddenly are ill and can 't take care of themself is very sad and hard to except. I think that all the anxiety, worries, stress and burden and the fact that we can' t help them has triggered off

    PMR.

    Sport is the best medication against depression. I live the moment and try not to think about tomorrow.

    Take care

    Orchid

  • Think that was my trouble Orchid I think too much, but now I'm more relaxed what will be will be, the first year was awful waiting for a diagnoses Rheumy still not 100% sure what I've got could be pmr could be mpa vasculitis have so many different symptoms he said let's just call it pmr for now, I was so upset for 2yrs every time I had a appointment I came out really upset wanting an answer, well he said I'm on the right medication for either illness, after 2yrs I'm so much more laid back things don't bother me now like they used to. Take care Orchid will post again if I manage to reduce to 4mg. Val x

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