I would like to know how Robert17 and others feel with taking now for a few months this DMARD and what experience did you have. What about side effects?
I have had PMR/GCA for over 2 years.
In August I was at 6mg Predisone. Since then I am again at 10mg and the blood tests are not so good.
At 6mg I had terrible headaches and pain in the upper back and neck. Now I have no longer headaches but still a sore Scalpula and vertebrae.
I have been for 24 months on Forteo injections and only today read that all these complains may come from this drug.
My Rheumi told me that I had no other choice than to start taking Arava to lower the Predisone. I bought it, but still hesitate taking it after having read about all the possible side effects, so I would very much appreciate to hear your opinion about it and also if there is any improvement in your wellbeing.
Thank you very much for your information regarding treatment with Arava combined with Predisone.
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Orchid47
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Hi Orchid - I was just like you and I really didn't want to take Leflunomide. I have been on it for a month at 10mgs and I have a big reduction in pain ( no panadol required ) but I do have some reflux. I had a bad reaction to 2 glasses of wine so I won't drink while I am on this treatment.My CRP went up to 15 which upset me as I was feeling so well but this fortnight it was down slightly to11.Overall I feel the pain reduction is out weighing the side effects and of course all the benefits don't kick in for 26 weeks. I probably should add that I had some headaches and fast pulse rates but those side effects seem to have gone away at the moment. I suggest you read Robert's posts as he has been on Leflunomide longer than me.Hope your journey with Leflunomide goes well😊
I started Leflunomide (10mg) at the beginning of November when my CPR was 22 having come down from 56 at the height of my flare in the summer. By that time (early November) I had also been able to taper the Prednisolone from 15mg post the summer flare to 12mg. By the middle of November my CPR had dropped to 7 which was a big surprise but I cannot see how the Leflunomide could have been responsible in just over 2 weeks. I think It is more than likely the result of a continued positive reaction to the higher doses of Pred I had to take following the summer flare up.
By the beginning of this month I had successfully reduced to Pred to 9mg without any adverse reaction and the Consultant has since suggested that I might try a drop to 8mg around Christmas time. I think I will defer that reduction until the New Year! I had another blood test today so won't get the results until next week when I also have a review with my GP.
At present I certainly have no pain or stiffness but I do feel constantly tired and lacking in energy but that is nothing new. As far as any side effects from the Leflunomide are concerned, I seem to now have a particularly sensitive stomach. This may be because I have attended a few 'seasonal' functions recently and I have probably eaten too much, especially mince pies and nuts, but time will tell. I also feel slightly more breathless from time to time.
One thing I am more sure of is that my blood pressure, which was already high, has been creeping up even further over the last few weeks. This was causing me some concern and it does seem to be a known side effect of Leflunomide. During my blood test appointment this morning when the blood pressure was also tested, I was immediately prescribed a daily dose of 25mg Losartan to combat the hypertension.
So as far as I am concerned, the jury is still out as to whether the Leflunomide will enable me to reduce the Prednisolone further than would otherwise have been the case. As long as the Losartan works I intend to keep the Lef going. I realise the possible side effects look horrendous but my consultant has convinced me that they are nevertheless preferable to the long term effects of Prednisolone at doses above 10mg.
Hello I am on 10mg of Leflunomide. I am feeling Ok on it. I didn't do well on 20mg -- earlier this autumn I upped the Lef and downed the Pred as the Rheumy had suggested -- The Lef side effects were awful on 20. I too find that my digestive system, which has not been that great for years, has got a lot worse. I don't drink alcohol although the rheumy said a little would be OK. Rich things like mince pies are not great right now -- shame! Communion wine at church is the merest wetting of the lips.
I do keep Immodium in business as a stomach calmer if things get too lively-- and I am still on Omeprazole. Occasionally need Gaviscon! Good luck over the festive period.
Hi Orchid47 i have been on Leflunomide for about 4mths now taking 5mg of steroids when I started Leflunomide , within 2 weeks all pain and swelling went down in my legs it was marvellous still have a bit of pain in top half of body but I can cope with that, love walking the dog so to get my legs working again was great, had diarrhoea and pains in stomach but all that has stopped now, it worked for me hope it does the same for you. Val
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