The Draw Backs Of Being On Immuno Suppressants

The Draw Backs Of Being On Immuno Suppressants. I have been on and off immuno suppressants since my crohns diagnosis back in 2003. To a certain degree I have been very lucky and the side affects have not reared their ugly head until I started the vedolizumab in March of this year.

The Draw Backs Of Being On Immuno Suppressants

All medication has its drawbacks but the last couple of months I have been having a pretty shit time of it. I don’t know if its just me, but have always found that with having Crohns disease I don’t get ill and catch things that normal people would. I tend to stay away from people with stomach bugs because catching that is lethal for me and wipes me out for at least a month and impacts my weight and eating habits dramatically.

Being on the vedolizumab means my immune system has been impacted and I can’t fight what I have caught without the aid of antibiotics and a stern telling off from both my boyfriend and the show girls when I have not got my butt to the doctors when I started feeling ill.

Feeling Sorry For myself

Since starting the medication I have been on 2 sets of antibiotics in the last 3 months due to a UTI , ear infection and tonsillitis. There is a first time for everything and the UTI and ear infection is a first for me. Admittedly the UTI wiped me out for close to 3 weeks and the ear infection and tonsillitis has just started to clear. The worst thing about all of this is that my immune system now being compromised I have eczema induced by the suppressants and it is driving me insane. It started as a few blisters and has now covered the palm and fingers on my left hand, small patch on the right and has started spreading to my feet on my toes. It is driving me insane because it is as itchy as hell and apparently if the blisters pop it then spreads to different areas.

My Dermatologist

I was originally referred to Dr Pink (this makes me laugh) as I need to have patch tests due to becoming allergic to more and more things and I now have contact dermatitis from the only bag that doesn’t aggravate my stoma site. Irony being the Humira induced rash and spots I had on my arms and back has now completely cleared since October last year when I had to cease the medication due to my surgery and then discovering after surgery that I couldn’t re-start it due to building up antibodies,I do not miss stabbing my leg on a weekly basis.

Dr Pink noticed a few blisters and prescribed eumovate to treat it. The eumovate did not touch the sides and it progressively got worse.

Roll on September and my hands are a blistered peeling mess and he has now put me on cetraben and mometasone furoate. He says that I could have possibly been pre-disposed to eczema and as the medication is working for the crohns it is not worth stopping the treatment just because I have gammy hands. On the plus side it will make for a amusing Halloween. Plus the stuff is flammable so makes sparking a lighter up an adventure of risk.

The Draw Backs

So the draw backs of having a suppressed immune system are that I catch everything from my child that is a living human petri dish due to school. I have to have the flu jab and put my little girl through the jab as well to protect both of us. I have had the flu once before and got pneumonia and it wasn’t fun.

Staying away from ill people and children. Speaking to your friends and cancelling if there is a bug going round can get tedious. I personally play roulette depending on the bug and if I have been eating too much chocolate and need to loose a few pounds.

But on the positive, so far in the last 5 months all of my blood markers are coming back as my crohns being inactive. So does this mean I am in remission, I’m not sure. Hoping the biopsies reveal that my microscopic colitis is now under control and I can have my barbie butt operation completed and get rid of the diversion colitis that makes me twitch.

Summary

I am quite willing to live with the odd infection and gammy hands if it means my crohns is in remission. I would happily stay on this drug as long as it is working as remission for me with crohns disease has only been achieved once in the last 14 years and that was whilst I was pregnant so think I have earned some rest bite fighting this devious little bastard as I so fondly call it.

For those of you reading this, if you are on any drug that suppresses your immune system please see your GP and book in for your flu jab. You qualify and it should be free as you have no control and flu for us is normally made worse as we can’t fight it as well as a healthy person.

Please feel free to leave any comments.

 

 

 

1 Comment
  1. Wonderful post. I would agree with you, the side effects are worth it only if I am in remission.

    And say far away from people who are sick.

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