Rising ESR

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Saw the Rheumatologist today who informed me my ESR was up to 78 from the original 37, MTX. sulphasalazine, hydroxychloroquin and prednisone not working at all, so dam sore all the time. Next stop is leflunomide. Rheumatologist actually rang me a week ago after receiving results from my latest blood test to ask how I was and whether I was coping, how many Docs do that?

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  • Posted

    Hi Tony

    next step should be biologic- 

    leflunomide is milder but I guess worth trying just in case. What dose prednisolone are you on?

    you must be in a lot of pain. Can't remember which country you re in, but in uk 6 months on 2 DMARDS without success makes you eligible for a biologic, which very often makes a difference. But you ll have to try for 6 months as can sometimes skechers this long to work.

    I am currently on 25 mg mxt, 6 tablets sulfasalazine a day, 2 of hydroxychloroquine. Are you on as high a dose as possible? I am also on a biologic and the whole lot does make a significant difference to me.

    Hope you get somewhere soon. Great you have a good rheumatologist.

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  • Posted

    Yes similar here, three DMARDS and six months here. 14 Jun is the end of the six month wait. I was on sulphasalazine which relieve the pain a little but just made me so nauseous I had to stop. Hydroxy doesn't appear to work at all, just gone on to maximum dose. 13mg prednisone at the moment on the way down..
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  • Posted

    Leflunomide - wonderful stuff, Dr started me on 10mg, no problems, mixed with my 35mg of MTX, then decided that 20mg would work better, it worked, all the pain was gone from my joints in about 10 days. amazing stuff.

    Then I started to get headaches and generally feeling really unwell, back to GP Dr, my blood pressure was off the scale high, dangerously so.

    Apparently I fall into about 2% of patients who cannot take the 20mg of leflunomide even though we know it works. I am still on my 10mg Lef, I can tolerate that.

    Only disadavantage, and i believe it affects most people this way, is you have very loose bowel movements in the morning, I take my tablets at night, seems to work better for me that way, don't need to be caught short later in the day, my family know not to use the loo within half and hour of me starting to move around the house.

    Good luck Tony. Hope it helps some, you sound as though you have a really good Rheumo.

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  • Posted

    My BP is up after starting Hydroxychloroquine so can't st Leflunomide until that is back under control.   Since starting on 200mg of hydroxychloromine the pain seemed worse.   I doubled the dose last night to 400mgs on Rheumatologists advice and geez the pain was twice as bad this morning, I'm wondering if this drug/toxin is for me!
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  • Posted

    Years ago I took max dose of hydroxichlorquin for 6 months and it made no difference at all infact I often felt worse pain.
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  • Posted

    Funny you should say that, I have a sneaking suspicion the Hydroxychloroquine is making me worse.   When I came off Sulphasalazine I started on Hydroxychloroquine and straight away felt worse but assumed it was due to coming off the Sulphasalazine.   I doubled the dose of Hydroxychloroquine a week ago and have been feeling worse ever since, so much so that two fingers and a thumb have joined in full time along with permanently sore forearms, elbows and upper arms.   At night I tend to also feel it in my mid back also..   Problem at the moment being I have to stay on the hydroxychloroquine to sort out my BP so I can start on Leflunomide.   Soon as I sort out the BP I will stop the Hydroxychloroquine and see what happens, I'm betting I will feel better.
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