Hi guys I need some advice again x my rheumy has put my pred up again which is fine but because the results are slow he is concerned that the dose is still too high . I am taking 50 pred but as soon as I get to 40 all my symptoms come back especially the eye problems and jaw claudication . Well the specialist nurse rang me yesterday and said that the doc is thinking about putting me on a drug called LEFLUNOMIDE ( ARAVA )
I have never heard of this so any help or insight into this would be received so gratefully xx
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Woodiesmum
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It's a DMARD (Disease Modifying Anti-Rheumatic Drug) and is a standard, often used drug for RA patients. There are several, including methotrexate, which when prescribed for PMR are considered steroid-sparing agents, i.e. you should be able to taper the pred dose more quickly when you are taking them alongside Pred.
The use of these drugs for PMR remains problematical - some sources claim they work, others are more sceptical. I was on methotrexate for two years which in the end did nothing for me but I was on a much lower dose of Pred than you are now. In fact, given your high dose, it would suggest that the Rheumy has taken it on board that you need some additional help and is providing it.
I've only seen one very small study using it for PMR where it apparently worked for a lot of the patients but it isn't recommended in the guidelines - on the other hand, a rheumy I'd trust says he feels it is the only DMARD worth using in PMR. GCA is a bit different and I haven't come across anyone who has used it.
I can't remember how long you have been on 50mg and trying to get down to 40mg. Are you going straight from 50 to 40?
However, as polkadotcom says - if you don't try it you will never know.
Hi just to let you know been on these new tablets a while now and no change at all . I have dropped steroids to 35mg now and my head is so bad,look forward to any advice my eyes are terrible and so much in pain in jaw and earache again and fatigued x I do see my rheumy this week but have just found out he is retiring so not a happy girl at all as I will have to start all over again . That frightens me .
What I am interested in is does anyone know more about new trials from dr Dasgupta from Southend because I will try anything . Look forward to any advice xx well had a good moan so now need to put a smile on my face lol xx thanks in advance xx
To my knowledge there are currently no trials being planned. However, there is a possibility tocilizumab will be approved soon.
But do make it clear to your doctor that 35mg isn't enough even with lefunomide - even if he is retiring. The side effects of pred are chicken-feed compared to the potential side effects of inadequately managed GCA.
Thank you for that x that's the drug that I was thinking of but I couldn't for the life of me remember the name x
I am so worried about my health it's going down hill again x
Nothing different has happened with the tablet I take with the steriods . I am on morphine but slowly coming down off that but I am happy about that just not happy with the pain in my head and eyes x everything has come back even the ear ache x so roll on the 23 rd xx I will let you know what he suggests x. Thanks again x for all the support xx
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