Cimzia long term: Hi, I've been on cimzia for over 1... - NRAS

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Cimzia long term

Mags126 profile image
7 Replies

Hi, I've been on cimzia for over 10 years with no side effects until recently. The last couple of doses have left me nauseous, weak, with a banger of a headache and feeling generally unwell. Anyone had similar? I tolerated methotrexate initially when first diagnosed but then my body rejected it. Tried a couple of others before cimzia was prescribed and it has kept the RA under control for years. Wondering if the same things happening and me old body is saying no more 🫤🤷‍♀️

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Mags126 profile image
Mags126
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Amnesiac3637 profile image
Amnesiac3637

Difficult to know whether it’s the drug or you’re cooking something else up.

Having said that, I have had practically everything invented and quite a few of the more heavy-duty ones have turned on me after a while or just switched off. I had drug-induced Lupus from Etanercept, the same from Infliximab and hypogammaglobulinaemia from Rituximab. Baricitinib just switched off after three years and a bout of covid so you never know……

Worth checking with your rheumatologist. Plenty more drugs to try these days thank goodness! Best of luck, hope it’s only some minor hiccup!

medway-lady profile image
medway-lady in reply to Amnesiac3637

Oddly enough around here they are limiting the amount of medications that will be prescribed. I suppose to stop the a couple of weeks fails but I don’t really know. But if you think that now over 60 I think it might be it’s no to JAKs things appear to be changing. I wonder if it’s a local policy or nationwide? Because it has serious implications to anyone changing here now.

Amnesiac3637 profile image
Amnesiac3637 in reply to medway-lady

Interesting. I haven’t ever been refused a change of medication and I don’t think there’s any limits on how many are given in my neck of the woods. The JaKs for over 60’s aren’t as safe as first thought and are causing problems with low lymphocytes so that may be a restriction in future. We’ll wait and see. Does depend on funding and which Integrated Care Board (or whatever they’re called this week) has decided what benefits the chronically ill on its patch 😟.

medway-lady profile image
medway-lady in reply to Amnesiac3637

Here this rule was introduced a few months ago the nurses told everyone at an NRAS meeting. When one does others will follow. Mind you it could just be a threat to stop some just giving up without good cause. I don’t know because it’s not happened to me yet.

stbernhard profile image
stbernhard

Hi Mags, I've been on CIMZIA since 2012 with no noticeable side effects. I'd arrange an appointment with your rheumatology nurse and keep a journal of the symptoms until then. All the best.

Shep22 profile image
Shep22

Has the meds been changed to a different make recently Happens for some

With cutbacks

More and more meds being switched to cheaper versions to save money

Probaly not but worth checking

Mostmoses profile image
Mostmoses

Interesting! I, too, developed sn intolerance to methotrexate. Have been on Cimzia for two years and so far, so good, though I’m not quite in remission. I wouldn’t have thought one could develop side effects after long use but I see from the replies if others that it’s possible. I’ll be interested in what comes up for you going forward, and I wish you well!

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