Well, that went well...

jenzie06

Back in April I had my second dose of Abatacept and went into anaphylatic shock. Spent hours at another hospital to go through allergy testing. All was fine. Some very small reaction but nothing that can't be controlled with putting it in slower and giving me steroids and piriton to counteract any possible reaction.
All good.
Yesterday I tried Abatacept again. Once again I was fine as the drug went in. But afterwards my chest started to become very tight and I had trouble breathing. My tongue started to swell, felt prickly and had a rash. Great.
After struggling in the department for a few hours with some really lovely nurses (will be dropping in some bottles of wine to say thank you) I was transferred to A&E where I was struggling with some really crazy chest pain and my face and arms swelled up I was then transferred to SSEU. Managed to escape at midnight although I had to self discharge otherwise I had to wait until lunchtime the next day before they would release me. Now feeling fine although a bit tired.
Was not impressed with rheumy as he made me feel like a complete fraud as I was managing to maintain my O2 levels. He dismissed the rash, swelling and general feeling of crapness, plus I was the colour of cheese.
Last time it happened I decided to go home from the rheumy dept and felt so so ill and my breathing and heartrate went crazy when I got home so this time I didn't want to rush. Glad I didn't as my face and arms swelled when I got to A&E.
But now what?
Waiting yet again for the last remaining drug to see if it will help. I haven't had effective drugs since January apart from the odd dose of abatacept but nothing consistent. I don't see my 'nice' rhuemy til September. I'm hoping the mammoth doses of steroids I had yesterday will help although it's not going to help my weight.

Bum.

As5567

jenzie06 wrote:

Back in April I had my second dose of Abatacept and went into anaphylatic shock. Spent hours at another hospital to go through allergy testing. All was fine. Some very small reaction but nothing that can't be controlled with putting it in slower and giving me steroids and piriton to counteract any possible reaction.
All good.
Yesterday I tried Abatacept again. Once again I was fine as the drug went in. But afterwards my chest started to become very tight and I had trouble breathing. My tongue started to swell, felt prickly and had a rash. Great.
After struggling in the department for a few hours with some really lovely nurses (will be dropping in some bottles of wine to say thank you) I was transferred to A&E where I was struggling with some really crazy chest pain and my face and arms swelled up I was then transferred to SSEU. Managed to escape at midnight although I had to self discharge otherwise I had to wait until lunchtime the next day before they would release me. Now feeling fine although a bit tired.
Was not impressed with rheumy as he made me feel like a complete fraud as I was managing to maintain my O2 levels. He dismissed the rash, swelling and general feeling of crapness, plus I was the colour of cheese.
Last time it happened I decided to go home from the rheumy dept and felt so so ill and my breathing and heartrate went crazy when I got home so this time I didn't want to rush. Glad I didn't as my face and arms swelled when I got to A&E.
But now what?
Waiting yet again for the last remaining drug to see if it will help. I haven't had effective drugs since January apart from the odd dose of abatacept but nothing consistent. I don't see my 'nice' rhuemy til September. I'm hoping the mammoth doses of steroids I had yesterday will help although it's not going to help my weight.

Bum.

Sounds like some very bad luck! I once had a reaction to ritiximab and later went on to have the drug without any issues so I can see why after doing all the allergy testing it was suggested to try again, and you can tell yourself that you have tried your best to take the medication. As for your doctor is there not another rhumey in the hospital you can ask to see for the time being? I'm sure you will find something that works eventually for you, I know it feels like an endless battle but eventually we all find something that works for us.

Hopefully the steroids will help you a bit, the weight gain is just something that comes with steroids and I myself hate having steroids but just accept that it's part of the disease and the weight gain is just another "symtom" I have learnt to live with

Tubby

I find the most frustrating thing is that they treat you like it is all your fault you are having a reaction/ feeling rubbish....understand your irritation on all levels....

stickywicket

I'm sorry you had a bad reaction, jenzie.

What was the outcome of your recent emergency eye dept appt?

jenzie06

Hi Sticky
Eye clinic was ok. Spent 5 hours there trying to entertain 3yo son. Exhausting! Nothing too serious, they are hoping it is just the big jump in prescription which has caused my eye muscles to lose control. They are hoping that having an increased strength prescription will help. But I might need prisms in my specs.
Plus I'm not allowed to go to any 3D films as my eyes wouldn't take it. It would make the muscles work too hard.
My eyes are still achey but the dizziness has gone. So fingers crossed they will settle down soon.

stickywicket

I do hope so. Thanks for the update. I'm pleased it was no more serious though I'm sure that's quite bad enough.