What Next??

[claire1]

Hi All,

Well I am really fed up now!

Last week I had a massive allergic reation to my infliximab infusion (3rd one)
It was really scary and doctors said could have been life-threatning. I was so annoyed as it was realy helping and was my saviour when I was in hospital.

Went to the hospital yesterday and he noticed from my blood results that my liver results were very abnormal and that I had Jaundice, hence why I have been so ill from the Azathioprine. Been on it for four weeks and kept vomitting, itching, headaches, pains in my right side.

Taken me off medication and got to have two liver tests Tuesday and Thursday and then see him again Friday to see if it is any better. I am a bit worried - what if it doesnt get any better? What hapens?

Does this mean I have become Toxic to the medicine like I read about other people did?

My consultant says he is not sure what we can try next as my body is resisting Everything! I dont want to go back on loads of pred! May try the alternative therapy route? Acupuncture etc?

Claire
x

 

[Guest]

hi claire.

sorry to hear your body is resisting these meds that could actually help it

you mention alternative therapies - if you're interested, i started a thread on homeopathy a while ago, and although i didnt continue with the treatment, i found it extremely interesting & encouraging, and is something i may well turn to properly in the future.

i also seem to have more allergic reactions to meds as i get older (could be a crohns trend, maybe..?) so it may well be that if my crohns gets worse, my options would be limited too.

i really do hope your reaction symptoms reverse in time, now that you're not on those meds any more.

 

[claire1]

Thanks for your kind words Dingbat
x

 

[Kev]

Hey claire.. Sorry to hear about your troubles. Tho I haven't tried Remicade, from what I've gathered from others on here who've gone that route in the past, it usually peters out in a few years anyway (trying to see the positive in this).. And, speaking of positive, the Azathioprine toxicity... well, when that hit me, it only took a couple of days for the 'immediate' major effects to go.. The pain levels disappeared within 48 hours after I stopped it.. 'They' might want to repeat it on a purely test dosage level, or they might not... I'm thinking in your case they'll go the latter route. It honestly isn't the end of the world (as I sense you are feeling right now, I know I felt that way for a bit when it happened to me - like, what next?). Anyway, for me it really did turn out to be a blessing in disguise, although I didn't see it at the time. You mention alternatives; well, my 'bad' reaction was just enuff, at just the right time; to... motivate.. my GI to give the OK to the LDN trial. Since both Remicade and Azathioprine are off the table for you now... then you (and hopefully your doctors) might want to try LDN. I mention it as it

a.) has a scientific study presented to the GI community to give them food for thought, and the success rate IS extremely promising..

b.) It has EXTREMELY low risk of side effects, and the side effects... well, do you like to dream? Man, when I compare that to the side effects of all the other drug regimens... it's almost laughable. And Naltrexone HAS been around for a long time, and it has a medical pedigree where 'they' KNOW the potential side effects at much higher doses, and even those are pretty tame by comparison - so it isn't an 'unknown' , a brand new untested drug..

c.) It is very low cost, so you aren't gambling your life savings if insurance companies say they won't cover it because its considered experimental..

d.) If it doesn't work, then you still have remaining ACCEPTED options to fall back on... Humira, Cimzia, Metho...

I think if one looks at these options, AND compared them to LDN as if LDN would be routinely prescribed, then it becomes a 'no brainer' to go LDN as a 'first, best' choice in the treatment of IBD. The only real risk of trotting out this option is if your doctors are of the opinion that the risk is too great to them, or that you are a foolish and ill advised patient; and perhaps that you'd be better off finding another Dr..

Look, I didn't mean to make this sound like a sales pitch. I'm not trying to tell you what to do. Just that, it sounded from your post that maybe you could use a little 'assist' right now, AND this is the best advice I can offer.

I hope, whatever choice you make, things turn around and it works out for you. Take care, all the best..

 

[claire1]

Thanks for your advice Kev,
I will discuss this medicine with my consultant.

I stopped taking Aza on Thursday but I still feel so tired, sick and very itchy.
Will these symptoms stop soon?

I am thinking of trying to just go without medication and see how I go co these side affects are horrible! I dont want to end up in hospital again though and the last thing I want is an operation.

Claire

 

[Kev]

Well, the crippling pain that came with mine faded, was literally ''tolerable'' by the morning of my 3rd AZA free day.. now, keep in mind that I was bad enuff physically going in that I had to go on AZA.. and I'd only been on it a couple of weeks... like, it hit the fan on my 18th day.. first 2 weeks I was on 50mg.
So, coming off it, even tho the crippling (put me in the ER) pain faded, I was in pretty bad shape.. sorry if this isn't what you wanted to hear. And the rash that I developed with this lasted for months and months after. My next drug was pred (again) but I had no choice. My doc used it to try to stabilize me... it worked. Problem was that my pred ran out 6 wks before I started LDN... and then the LDN took several weeks to have big effects. If I were to do it over... I'd arrange to take pred up to a week before LDN. I'd taper off the pred., do a week w/o anything, then start LDN treatment.

But ,whatever way you and your docs decide to go, heres' wishing you the best.

 

[Mazen]

Well for me after 6 months on 150 mg of Aza, I started vomitting and feeling nauseous and sick. Blood tests showed elevated liver Bilirubin, which causes Jaundice. My doctor lowered the dose to 50 mg and within a few days I was feeling much better. I'm still on this dose till now, it's been about 2.5 years, and my Bilirubin levels are always a bit high but only a little above normal, and my doctor says its fine...... Hope you feel better soon