ITP

[Willow2017]

Anyone on MN have ITP?
What treatment are you on and how are you coping?
I have started on Immunosuppresants and havent slept properly in 2 months! I cant switch off no matter what time I go to bed or what I try.
Consequently am constantly tired and finding I cannot get and keep warm. Anyone else found this and fixed it?
I am seeing my consultant in a week so will bring it up with him too.

Also my sense of taste has gone awol. When on the high doses of steroids/omeprazole it went crazy that week but always came back, now its just gone again and its been weeks and weeks and its still not right. Am seeing gp soon about it and am desperate to be able to taste food again and actually find something I can eat for more than 5 minutes without feeling bleughghgh thats disgusting! (Although it has been a great way to lose weight its maybe not the best way!)

Hoping for some wise words from fellow sufferers.

@Willow2017 Poor you! I had an isolated ITP episode 9 months ago with a hospital stay and high dose steroids until my platelet level stayed up. I went through 6 months of blood tests but thankfully my consultant thinks it was a one off and not something that will happen every time I get a virus.

I didn't feel in the slightest bit ill with it - it was the steroids that made me feel crap 🤨

I've got zero advice I'm afraid but didn't want to leave you unanswered!

Gimmie
Thanks for posting.
Yes the itp doesnt bother me apart from the bruises 😀 But the steroids and other meds are hell.
Am on new ones now so fingers crossed.
Had a bone marrow done a week ago so waiting for results of that next week when i go.back to hosp. Sick of the sight of the place😁

How long have you had it @Willow2017?

Is this a long term thing or do they think it'll disappear once you're treated properly?

They think mine was a reaction to me having glandular fever which has since triggered Coeliac Disease. What a year 2018 was!

And the bruises, yes! I went to Lanzarote 2 weeks later covered in them!

Oh crikey thats not good Gimmie hope your ceoliac disease is managable and not giving you too much grief.
I was diagnosed about this time last year. At first my platelets were low but not enough to treat. Then they dropped and I had 3 courses of steroids which worked at first but the last lot didnt. Cue 6 weeks of hell on immune suppressants and to add insult to injury my last bloods were even lower.
Now on meds to stimulate the old pancrease to produce more platelets than I am destroying. Fingers crossed or ultimately I may need pancrease removed grrr.

I counted 10 bruises on my legs this week (I am always bumping into things )

One of the side effects of the I.S was pins and needles and numbness in hands and feet. I got up from the chair one night and a foot had gone to sleep, over I went on it and my foot was covered in a huge bruise toes to ankle for over a week plus my thigh as I hit something as I went down. Kids have decided I need wrapped in bubble wrap
My legs look like my ds2s legs used to look like in summer, he was always coverd in bruises from playing outside!

@Willow2017 It would be your spleen that needs to be removed, not your pancreas. You can get an indium test done which shows if your platelets are being destroyed in your spleen or your liver.

If you have a splenectomy you will need flu and pneumonia vaccinations for the rest of your life, and long term antibiotics too.

What is your count like? The norm now seems to be not to treat until it is