Biologic side effects- What now?

trisharay

Hi everyone, I've only just dicovered this great supportive forum & am hoping somebody, somewhere could help me. :???:
Was dignosed with RA in 2009. MTX and the usual combinations gave me one allergic reaction after another, after a year of various drugs & side effects, Azathioprine worked for about a year. Went on Arava, worked very well, close to remission as I've ever been but alas, as you know, it's time ran out :sad: .I have been ill for most of this year. Got the go ahead for Humira & had a shot in July. Within hours, bad reactions... Headache, flu like symptoms. Within 24 hours difficulty breathing and a completely different kind of pain, much sharper than the usual dull ache(fortunately this only lasted a few days). Since having humira, I have experienced tingling & numbness in fingers & toes and eyesight seems to have deteriorated. Had my first Enbrel injection last Thursday, no bad effects except the pain... All the usual joints plus the bones attached, but again much sharper more intense & no painkillers or anti-inflams are even remotely close to relieving it. I'm absolutely devastated and not sure if this will pass after a few more shots or if my doc is going to tell me that this too has been another failure. If so, what now? Feel like I'm running out of options here. Advice & thoughts please? Pretty please

salamander

It's very early days for the Enbrel to work. Give it a chance. I hope you don't get a reaction to it.

skezier

hi Trisha,

welcome to the site and hope you find it useful.

like Sal says it is early days so just for a min see how it goes though worth saying to either your gp, rumo or rumo nurse cus it might be a known side effect, maybe the bones moving slgithly for some reason, swelling and inflammation rather than a reaction.

hang in there and hope it will all ease off and the Enbrel will work and help you. nice to meet you. Cris x

Chinup

Hi Trisharay,
I have not been on the site for a long time now, I have PA, I do pop in now and then to see how everyone is doing, I had the same reactions as you whilst taking Humira, I felt ill and I coud not really explain how i was feeling, my eyesite also went blurred, I came of the humira and was allowed to have infusions of inflixmib (spelling), I must say I am doing fantastic on this and have even taking up riding my bike and am working 10-12 hours a day again, this time last year I was struggling and somedays could barely walk, dress or do much at all, It did take about six months before I could really say all the symptons had gone from taking the humira, I wish you well and hope something else can work for you, I also ended up in hospital last dec this was after second injection of humira, please do not give up hope, not everybody responds the same way to medication and it is a case of trial and error.

traluvie

Hi trisharay,

I do not know much about the meds you are taking, ..
I do know that sometimes we have to give our body chance to adjust and give it time for the drug to work..
I hope things improve for you soon..
Take care

julie47

Hi trisharay

I am not on the biologics but I just wanted to say I hope you start to feel better soon and the results of this one are good for you.

Juliepf x

dreamdaisy

Oh dear, these drugs are not for everyone, that's for sure, and you seem to be particularly unfortunate in how you react, I am so sorry. Now, I am NOT a doc, let alone a rheumatology consultant, but one idea has wormed its way into the morning brain fog: there's a difference between the anti TNFs and the biologics (leastways I think there is!) in how they work. My understanding is that Rituximab works in a different way as it targets the B cells - it's an infusion based med with plenty of steroid top-up at the time of infusion: it's a slow-working one, and like all the others a risky one, but it could be an alternative. Those words do not constitute medical advice, they are not based on any medical knowledge apart from what I have learned on here, they are meant purely for information ONLY. I know of two ladies on here who have had allergic reactions to humira, and one of them is now on Rituximab - I hope she spots your post and replies. I wish you well. DD

tillytop

Hello Trisharay and welcome!

I am one of the "ladies " DD (Dreamdaisy) mentions above - thanks DD for the compliment

I am on the way out so can't reply fully now but just to give you a potted history until I can post again - hopefully this evening, but tomorrow if not.

I can identify with some of your Humira related problems because I had similar side effects. But the good news is that things went pretty much back to normal after a few months off the Humira.

I don't know about Enbrel, but some of the other drugs I have taken in the past list joint pain as a side effect - daft as that sounds. And given that you had the same problems with the Humira, I really do think you would be wise to contact your rheumatology nurse for advice before injecting any more.

Finally (for now) just to say please don't despair about "what next". Humira was the second biologic I had become allergic to and I too thought I was out of options. But my consultant explained to me that the biologics all work slightly differently, so just because someone has problems with two of them, doesn't mean the same would happen again with another. After a 6 month break, "managing" on mtx and oral steroids, I started Rituximab about 6 months ago - and so far so good I think.

Will try to reply properly later on this evening but just wanted to say hello and to try to reassure you that, if Enbrel isn't for you, then there may yet be other options.

Thinking of you - and please do think about contacting the rheumatology nurse for advice on the Enbrel before you inject any more, just to be on the safe side.

Tilly xxx

tillytop

Hello again Trisharay.

As promised, here is part two - athough having re-read my message from this morning there is actually not much more to add I don't think.

As I said earlier, there may well be other biologics which you can try. And the good thing about things like Infliximab and Rituximab is that they are given as a drip in hospital so you are in the right place if you have any immediate side effects.

So please don't despair - and if you have to stop Enbrel and are offered an alternative, chances are someone on the forum will have experience to offer you.

Thinking of you.

Tillyxxx

trisharay

Thank you all so much for your encouraging replies and information. I am living in Ireland by the way. Went to see my Rheumy nurse who had never heard of the side effects,I think they don't communicate very well here...
Spoke to the registrar dr that prescribed the enbrel and decided to try a few more weeks and see what happens.
I feel more reassured and confident after reading all your posts. Will keep you updated as to how this works out. I'm sure we all get so confused with this mystery that we've been given, there really is no one size fits all treatment
Trisha xxx