Infliximab side effects

[Babypink]

When I first received my infusion in January following my very first experience of Crohens disease I felt wonderful it basically saved my life, what a difference in a few days

Roll on three infusions and now in April, I am quite ill with a horrendous side effect. I woke up two weeks ago and my brain was literally swilling about in my head, I was very hot too. Rushed to a local clinic and the doctor thought it was Vertigo.

Thankfully I had an appointment with my consultant on Tuesday and could barely walk in a straight line, move my head. It was like being on a very fast spinning roundabout that I can't get off. Vision is blurred with double vision, very hot flushes and stinking headache.

If I lay still its not too bad, somedays my eyes seem to move themselves so I have to close my eyes, its truly awful

I was advised on Tuesday this week, infliximab can also remove the protective covering of nerves and any underlying immune conditions can surface and infliximab mimics those conditions. In my case its MS. They said I don't have it, but it has been seen before and it takes time to resolve itself. Day one was horrific, very gradually slight improvement, its not day twelve slightly better but I can't walk far and head is still very shaky

Anyone else experienced this and if so how did you manage it and how long was recovery. I pray to god I fully recover

 

[lizbeth]

Gosh I'm sorry your are experiencing those side effects, I can imagine that coping with all of that doesn't leave much energy for anything else. Have you had any other meds or is it just the infliximab? i wish you a speedy recovery with a swift reduction in the side effects, good luck. :ghug:

 

[Babypink]

No just calcium tablets with my steroids. I've paracetamol for headaches and med for sickness motion. It's awful. I'm in be now holding m head whilst having a red hot flush where I feel I'm boiling internally

 

[lizbeth]

Oh gosh Babypink I really feel for you Is there nothing they can give in the interim to help you with the additional symptoms?? Even stronger pain relief for a start.

 

[Babypink]

No. My last infusion was 5 weeks ago, they won't be giving me any more. Mi spoke to my specialist nurse and as this was my third infusion of infliximab it could take months to rectify itself.

Today is not a good day, they said I would have crash and burn days and this is one of them. I can't walk in a straight line, I have to hold onto objects to stop bumping into them. My Porifera vision in my right eye is bad, left eye is not that bad. The moment I move I am all over the place.

My reaction is pretty rare, and I am only the first patient at my hospital that my consultant has seen this happen to. The neurologist has seen it before. It's a case of a waiting game

 

[lizbeth]

Hello there,

How are you doing now? Was wondering if you had had any improvement in your symptoms or if it was still as bad as before. :ghug:

 

[Babypink]

This is week four, and there has been an improvement although very slow. I had a MRI scan and there was something flagged up, so waiting for an appointment. I also have to go for an Endoscopy on 30th April which I am not looking forward to.

It's been absolute hell, really has and the dizziness, lack of balance, memory loss has been truly awful. The flushes have subsided which I honestly thought my head would explode

I will keep you posted, I am sorry for not been literally stuck in my bed for three weeks

 

[B Baker]

So sorry to read what your going through. Its bad enough having IBD without getting all this on top. It must be really scary.

Last year I had my loading doses of infliximab and I started to get pins and needles in my hands and feet and my right eye went really blurry I couldn't focus.

They did an mri and lumbar puncture and thankfully all was clear and have since started Humira with no negative effects. I'd say it took a good 2 months for my pins and needles and eye to go back to normal.

Really hope everything starts to improve for you soon :hug:

 

[Babypink]

I did start with tingling last two week in both arms and hands so knew it was because of infliximab. I was very nervous about what was happening. Today is slightly better its six weeks since my last infusion and now I can sort of feel the side effects wearing off. Downside my tummy is grumbling a little today :-(

 

[B Baker]

I was, I dont think I've been so scared in my life.

That happened to me, side effects wearing off but also any good effects too!! Had to go on pred, on quite a high dose for a while until they did all the tests to see if I could take humira. They said to me if it had of been ms or anything similar I could take natailzumab, they use it for ms and crohns.

Really hope the side effects wear off completely very soon and they give you something to get you in remission

 

[Babypink]

That's the thing they said my Crohens is in remission I was due to go onto Mesalazine and started king that fr wo weeks and then it all kicked off. I was also on Pred and calcium tablets, I was practically rattling with pills. They wanted me to have one final infusion which was due sat Friday and that all stopped

At the moment I m on calcium tablets, down to 5mg Pred and something for my dizziness next week will be my last on Pred and calcium tablets. I asked to be monitored medication free and see how it goes. My endoscopy is due on 30th April so they can decide what to do going forward

 

[sAiyAnstAr]

Sorry to hear about your adverse side-effects

Currently the only side-effects that I get is itchiness all over my body. That generally lasts 2-3 days and is nowhere near as bad as your side-effects. My doctor has also advised that all his Remicade patients get a Hydrocortisone injection before every infusion. I don't know what that does as I haven't noticed any difference.

 

[sickinlk]

that's a scary story and im sorry you're the star!!!!! glad to hear your getting better though. how did you manage with day to day stuff. it must of been horrible.
will they be trying humira now?
ju

 

[Babypink]

This is the first I've been able to write.

I went for a colonoscopy last Tuesday as part of my Crohens treatment. 12hrs later I was back in hospital in agony.c. Seems the surgeon punctured my bowel and puss developed and was absolutely dreadful. I am in hospital with a stoma and in great pain and distress.

Not what I was expecting

 

[sickinlk]

oh no!!!
that's awful. is the stoma permanent or is it letting the bowel heal.
geez get well soon.
ju

 

[Babypink]

It can be reversed fingers crossed

 

[B Baker]

Wow Babypink you've really been put through it. Like you hadn't been through enough already.

Really hope things start to dramatically improve for you very soon :hug:

 

[2lonely2long]

Hi Babypink,
I had 4 Infliximab infusions, the results were wonderful my Crohns was in remission and my abdominal fistula was almost gone. Infusion 5 induced anaphylactic shock, very frightening, thought I was dying. Prompt reaction from nursing staff saved me, thank goodness for those angels. Needless to say, never touched it since.