Monday, 6 April 2009

Knock on Wood.

I've had 3.5 days of carefree living. Thursdays fillip at the hospital has been an enduring one, for two main reasons:


  1. Forgive me, but right now, I dont need surgery - I'm not gloating, but I am still enjoying typing that.

  2. I have been put on Salazopyrin tablets, which are Sufasalazine, one of the 5-ASA drugs. This represents a significant victory for my bloodymindedness.

I do not need surgery YET. This is of course how I have to think. I'm not being negative, but after the recent weeks experiences (hospitalised by azathioprine, instant rejection of 6MP) and past experiences with mesalazine, I cannot take any new drugs for granted. What happens if this one doesn't work I do not know. And shudder to think. So, tomorrow sees the return to admiting I'm trying to manage this blinkin disease. Or maybe wednesday...

The doc's instructions are quite specific. Obviously I can only get a 2 week prescription from the hospital - I assume this is now the same everywhere, something to with budget controls being in the hands of GP's(?) - but rather cunningly this should last me a little longer. The dose he has prescribed is for 2g's a day, but he wants me to build into this slowly. Therefore, I am to take 1 tab a day (500mgs) for a few days, then 1g a day for a few days and so on... depending how far I can get before either my colitis symptoms get worse (as with the mesalazine about 5 years ago) or my liver decides it can't deal with these either.

As usual I have read the leaflet extensively and the side-effect highlights are as follows:

  • Hair loss or thinning (of hair pressumably) - great. I've had sporadic problems with this already.
  • Suppresses white blood cells (1 in 700 people) - oh bloody hell, its immunosuppresants all over again.
  • Serious skin condition on the nose, blistering or peeling - that'll go down well in school.
  • Nervous reactions
  • Tinnitus, tingling in the hands and feet
  • Loss of control and hallucinations.
  • Stomach pain!
  • Swollen face!!
  • Heart muscle inflammation!!!
  • And my favorite: my urine may turn yellow(err, it already is...) or orange, which is harmless but will stain fabric, which "if soiled", and i'm quoting here, "should be put into soak". Apparently difficult stains can be removed with washing soda(?) or vinegar(!). So, I guess I'm going to have to put a stop to all that weeing on the sofa I've been doing...

2 comments:

Charlotte said...

You will see from my blog (lottie30.wordpress.com) that I have had a list of problems/reactions as long as your arm (or bowel!) with all drugs - including Sulphasalazine :-( It is good you have options to try but don't be too anxious about surgery. So much easier said than done I know but having been where you are now and being where I am post J-Pouch surgery I can't recommend it highly enough. It's not an easy road by any means but it is one that is short and worth travelling!

Enjoying your blog x

Rich said...

Hello Lottie
I'm an idiot - Iam reading back through comments and I've just found this one - I didn't put 2 and 2 together: Charlotte and Lottie! Really glad to now you've been reading - I've been trying to catchup with you too. I will be regular from now on (!)

Thanks for the note about surgery. I'm still hoping... but trying to get my head round the likelihood that it's going to happen sooner or later. Yours and Martins blogs have made that easier.

Take care, rich