How often is normal for a flare up?: From reading other... - NRAS

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How often is normal for a flare up?

dmc12 profile image
11 Replies

From reading other posts I am like a lot of people , frustrated!!! I am just about to start on my 4th anti TNF (I failed on the first three) throughout the last three anti TNF'S topped up by methyl pred infusions I have been having flare ups every 7-10 days that last 3-4 days and mini flares every night . Is this normal or is it just a stage I am going through and will it improve? I don't see my rheumy for another three months but starting on Tocilimab on Wednesday. I am just about managing to hold down my job but if things don't improve soon I am not sure I will have it for much longer.

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dmc12
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11 Replies
sylvi profile image
sylvi

dmc12, what is normal about ra, thats the 50$ question. What one person gets another won't. It sounds like you are suffering a lot and i wouldn't wait until you next see your rheumy. Give them a ring and tell them whats going on.

sylvi.xx

Hobbles profile image
Hobbles

I am in the Same position, they have tried several drugs to get mine under control, I am now waiting to go back in to hospital again , I think they will introduce another Anti TNF . It's frustrating but don't suffer, do what Sylvi says and tell your rheumy dr or nurse. Good luck, take care x

cathie profile image
cathie

Ive been on anti tnf for a long time. I find it helps the response if you can really rest after the infusion. Hope you do find one that works for you

Hi dmc12,

Having tried embrel, leflunomide, toxilizumab, and currently abatacept, in the last two, I found your blog, really interesting. It has made me realise, eveytime I change drugs, I get flares, which then means I move onto another drug. It does seem like a vicious circle, and I am seriously , wondering if they are for me, way too many side- effects and not much benefit. I do hope, the toxilizumab, works for you, and actually I have spoken to quite a few who have done really well on it, I think I was just a bit old in the tooth. Lots of luck with your treatment.

Jennyxxx

Gina_K profile image
Gina_K

Hi Jenny,

Just wondering why you have not tried Humira adimulab? This worked for me.

Gina.

in reply to Gina_K

Hi Gina, thanks for your suggestion, I am really struggling with biologics (abatacept.) I did very well on embrel, but I developed an infection in a hip replacement while on it, and that was that. Everything else since has been a bit of a disaster. I wonder if you know if you have to have the rheumatoid factor, for Humira, as I am only borderline, and it hasn't been suggested to me yet. I would appreciate any info, as I am at my hospital next Thursday. Thanks. Jennyx

in reply to

I forgot to ask, also , is Humira an injection or infusion, unfortunately, I am no longer allowed to inject, because of infection fears. Jennyx

dmc12 profile image
dmc12 in reply to

Hi I have had RA for over 22 years and still negative for rheumatoid factor. I have tried Humira and had it via infusion as a day patient. I was taken off it but have heard it works great for some people, good luck. Donna x

in reply to dmc12

thanks Donna,

sorry to have taken ages to reply, having loads of trouble signing in on my ipad, so back on the netbook!

may I ask you why you were taken off Humira, cause I was taken off Toxcilizumab because of raised liver function bloods. did you have a bad reaction to it? I am having a lousy time on abatacept and want to change, but do not want to go onto long term cortisone, which has been a suggestion! al will be decided this Thurs. hope you are well, Jennyx

dmc12 profile image
dmc12

Thank you all your comments, it does seem strange that I am getting such regular flares which has only started since I started on anti TNF's andf the worst offender for me was infliximab! Still onwards and upwards and here's hoping for some dry weather and a hope that this next anti TNF does the trick. X

watson3 profile image
watson3

Just read the blog on the sky news about the new trial that is showing excellent resultss . Sure someone else post the should site on an earlier blog on our site. Good luck and keep trying for your best response to treatment. Carols

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