Had the ambulance here yesterday :(

[jaggartini]

Ok, so after my week in hospital and being drugged to the hilt and allowed to come home I had a bit of a turn yesterday and mum had to call an ambulance.

I was sitting quietly at my computer, all of a sudden felt faint, got up, went and lay down, heart rate shot up, I started shaking, my BP went up, my temp went to 39degrees (sorry I'm in Australia not sure what that is in your metrics )
I truly felt like I was overdosing or something. Hadn't taken anything since 6am that morning (it was now lunchtime) so it wasn't as if i'd just popped some pills.
My GI was called, he ordered an urgent blood test to check liver count etc and told to stop cyclopsorin for now.

Prednisone gives me the shakes anyhow when i'm on a higher dose but this was terrible. The only other thing my GI was worried was I was getting an infection as my immune system is surpressed.

I'm OK this morning, had an OK sleep.

Has anyone reacted to Cyclosporin OR strong doses of Pred even if they have been on them previously and had no reaction? If so what did you feel and what did they do?

Thx

 

[PsychoJane]

Hello... Doc never told me what it was... I was a teenage... and they protect themself from telling too much. I'm pretty sure that it was the cyclosporin that was responsible. I almost died. I did seizures, went to IU... Then they came up with the idea I wasn't doing crohn, that I maybe was having some sort of vasculitis. They did all sort of exam, I had blood vessels going crazy all over my body, I did a kidney infarctus (yes, it is possible), I had mesenteric, skin and brain manifestations. Did you notice any changes on your skin... I fainted like twice, the same day I had the seizure as well as crazy cyclosporin level in my blood (thats even though they never changed the dose...). That was at what.... day 20 in the treatment maybe. It was crazy, I came out of it in one piece, no brain issue or what but I swear, I though I was gonna die. They did biopsies for the ditto vasculitis, everything came back negative and I never had an issue with that after I stopped the cyclosporine. It can be a really dangerous drug... I don't like coming up with that kind of scary comment, and I avoid to, I dont want to scare the users (sometimes it works fine), but to be honest, I am glad you are off of it now (I was a little worried when I saw you were taking it the other day...). I hope it will all be ok now that you are not taking it anymore. I totally know what you are going through. Keep strong!

 

[jaggartini]

Thanks for replying PsychoJane.

I assume that i haven't received a call from my GI yet that my liver function is not through the roof.
I feel better today, still have the shakes but have a rotten headache which wont go away. They've given me Di-Gesics for pain as Panadiene, Neurofen etc are too harsh on the gut so I'm not allowed those (even though they help with my headaches)

No changes in skin really. Went blotchy around the chest but only while my heart was racing, if anything I looked quite flushed in the face and quite healthy as I've been looking so pale and crap after losing so much blood in hospital.

Far out, your ordeal on cycl sounds intense and this is what I'm so afraid of being at this stage of my UC. As time goes on the drugs are getting more stronger. I've reacted to Immuran, Cyclosporin doesn't look to have done me too many favours this time round and now they are thinking MXT. I'm so over the toxicity of them all

Will try and stay strong and keep you posted.