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Anyone on Humira for arthritis?

(8 Posts)
WhoremoaneeGrainger Wed 06-Jan-16 09:42:03

Have an appointment with clinical nurse specialist this morning about this. Have googled and wish I hadnt. Have a family history of cancer, and am really worried about this being one of the side effects? Anyone got any advice or help with questions for the nurse?

gobbin Wed 06-Jan-16 23:29:25

I'm on Humira but for Crohns. I don't think or worry about the serious side effects as I have no choice - no medication is not an option. Been on it just two months.

However I do get a few of the lesser side effects - dry cough, short of breath (but asthma is fine and I run too), heartburn, night sweats, occasional dizziness and adrenaline response (jittery and sense of doom). I don't get the Humira headache that seems to be common.

Humira seems to be working for me.

AndNowItsSeven Wed 06-Jan-16 23:31:52

Yes I have been taking Humira for three months with no noticeable side affects other than irregular periods. Also feel really achy the night of the injection.
I wasn't told about a cancer link.

DrewsWife Wed 06-Jan-16 23:35:36

My teen has been on anti TNF for a number of years. The consultant explained it to me as a small risk. You have a normal cancer risk and the anti TNF increases that marginally. You have frequent blood tests to monitor your health and anything worrying would be picked up. The statistics on the Google search are far higher than the reality.

Of all the children I know taking these meds... None have developed cancer. I have known them 12+ years. There is a yearly meet.

My daughter and I discussed the risk. Without anti TNF she would be wheelchair bound. The meds were life changing for her.

Happy to answer any questions

WhoremoaneeGrainger Thu 07-Jan-16 12:49:57

Thanks for the replies. Went and aired my worries, and the nurse absolutely reassured me, which is fine. However, it would appear I may not be able to have it anyway, because of the very rare side effect that affects the myelin sheath around the nerves. My dad had Multiple Sclerosis, which means i am going to have to be re-evaluated by the consultant to see if i'm a suitable candidate.

Gobbin Already have some of those symptoms as i'm peri-menopausal - particularly love the night sweats grin. Love waking up like i'm in the bath... Am going to look up Humira headache though...

DrewsWife - Thanks. That was absolutely the kind of thing i needed to hear.

AndNowIts Seven Has it helped with the pain much? I just need to sleep...... and be able to move without wanting to cry all the time....

Fingers crossed i get the approval.

wonkylegs Thu 07-Jan-16 13:00:55

I'm currently taking a break from Humira as I'm pregnant (although if I can't keep the RA under control in steroids I can go back on it), before my break I've been on it about 4 years and it's been a fab drug for me and has really helped since MTX on its own stopped working after my last child. The only side effect I've had is being more suceptable to sinus problems but otherwise it's been fab. Injecting took a bit of getting used to but is fine. My quality of life on it has been great, less pain, less fatigue and less active disease.
The cancer risks are very low and as others have said you are monitored so if anything happens it's picked up much quicker than in the general population.
I hope they find you suitable or can find you an alternative that works. After 18yrs of RA I've tried loads of drugs but this one really has worked for me.

WhoremoaneeGrainger Thu 07-Jan-16 13:10:58

wonkylegs Thank you for that encouraging post. They told me yesterday that at the first sign of anything "odd" or start of sore throat, cold cough etc i have to contact my GP, then them, and stop taking the Humira until it has passed so that made me feel so much better.

im an insulin dependent Diabetic, so I inject four times a day anyway. I was on MTX but really couldn't cope with the nausea (and often actually vomiting) for two days every week so stopped taking it in September.

My PA has got so much worse since then. I'm allergic to Codeine, so am just on Naproxen twice a day which isn't helping the pain at all, let alone the swelling in my joints.

Tezza1 Mon 18-Apr-16 06:58:43

I know this was posted a few months ago but I just wanted to add my bit. I have taken Humira for about 20 months and it has made a world of difference. I have had RA for about 12 years (was misdiagnosed as OA - long story, won't bore you), and was getting what was diagnosed as frozen shoulder, etc. Anyway, I went downhill very suddenly (personal problems combined with RA) and my GP insisted that I see Rheumatologist. Took about year and a half plus a double knee replacement before I went on Humira. It makes an enormous difference. Every joint except my hips was aching and inflamed, but that has now gone.

I would suggest you go on it as soon as possible after diagnosis to stop further damage to the joints, because once that happens, no medication can do anything about it. I am speaking as someone with gnarly, but no longer terribly painful or swollen fingers, elbows that won't straighten, some bent toes, etc.

I know you do have to weigh up the pros and cons of taking it, but in mind, it was an easy decision because I had reached the stage when I couldn't stand the way I felt.

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