dealing with itp

[caralanmccool1]

hi everyone, is anyone currently sitting with platlets that are less than 5 would be nice to talk to someone whos experiencing this aswell , i feel so alone

[Gabriella28]

Hello. I just wanted to respond as I hate to hear anyone sound so lonely. Please don't despair. Two years ago I was told my platelet count was so dangerously low I had better get into hospital immediately - it was down to 1. I had barely ever heard of platelets and had no knowledge of their purpose. It took several weeks on steroids to bring them up (the levels yoyo'd for ages) and then I was put on to Revolade. This drug has worked well for me although it has had a negative effect on my hair which falls out a lot and has changed texture. But the last time I got my bloods done the count was 112. I was delighted. I feel well even though I would love to come off the drugs altogether. However, they are keeping me well for now. Don't lose heart. You are far from alone. Tune in to the next ITP zoom - you can find out more on here. Good luck caralanmccool1. You'll get there x

[caralanmccool1 in reply to Gabriella28]

omg what a delight to hear from you, omg your time sounds rough yeah I'm currently getting rituximab drip treatment as i was on steroids and nothing worked and immunoglobulin didn't work but they also have me on a tablet i take everyday its never been used before where i am , i was the first ever person to get it and it takes 3-5 days to start working but my platlets are going from 1-4 and back down its awful being stuck in hospital . thank you so much fr sharing your story with me . i hope your well

[Mesd in reply to Gabriella28]

Revolade never did anything for me, on Rituximab which hopefully helping but after 5 months my levels still haven't improved

[caralanmccool1 in reply to Mesd]

I’m on rituximab atm Iv my second treatment tomorrow and my platelets have just been 1-4 the last 2 weeks no improvement at all, idk why they aren’t going up Iv had all doses of steriods and immune globulin aswell nothing helped im on a tablet everyday aswell that is to help them raise up but nothing at the minute helping

[Mesd]

Hi there, my levels have been between 0 - 6 for the past 5 months even though I've been having treatment. It's very frustrating and all this time I've been told not to work. My general health is fine

[itplassne]

Please don't despair, as there will be some sort of treatment that will help you (even though it may take a while to find the right one). Last year, my platelet count was 8, and I was put on Eltrombopag tablets. They seemed to be working well, but then I developed really terrible constant diarrhoea, so I had to stop taking it. After a month off (to recover!) by which time my platelet count went down to 4, I was put on Romiplostim. Some six months later, my count is around 100, and I feel "well'. I do hope you find the treatment that works for you 🙂

[caralanmccool1 in reply to itplassne]

Aw it’s awful when they go up, and then go back down so soon, but yeah I’m on rituximab treatment for 4 weeks and on avatrombopag tablet aswell so I hope some of these work thank you so much I hope u don’t get low platelets again and have a good life and get out and about but be careful

[Stateofdesign]

I feel you on the frustration. I was diagnosed in November and have been treatment resistant since. The only thing that's worked so far is IVIG, which I've needed every 2-4 weeks. I was in the ICU three different times during the height of the 1st Covid swell. I'm two weeks into a clinical trial here in the States, hoping it takes. My platelets are currently ~8. At 43 y.o, with 2 little kids, it's been tough to take on this new normal of activity restrictions, caution, and uncertainty. I do my best to stay present, and not let my mind drift into the past or future, but like you, it sure does feel lonely sometimes. Joining the support groups (boards and video) have been helpful for my mental state.

Stay positive, stay present, find beauty in the little things.

[caralanmccool1 in reply to Stateofdesign]

Thank you so much and oh my it must be so hard for you

[Stateofdesign in reply to caralanmccool1]

It's only hard when I let my mind wonder. I've learned depression lives in the past and anxiety lives in the future. Peace is found in the present. I'm so thankful that I'm in no pain and have discovered how many special people I have in my life.

[alice_sportyauthor]

Hi

My itp was picked up in my first pregnancy, I didn’t respond to all the regular treatments so they ummmed and Ahhhed a lot and after about three years it was have your spleen removed or be discharged. As I was FINE (if a bit tired) with the blood where it should be in my veins and arteries I chose to be discharged.

I lived very happily for about 20 yrs with a platlet count between 7 and 24 but mainly around 15. I know the count because I used to get the count checked by the GP every 3 to 6 months. Then I banged into something big style and the GP sent me to A&E and blow me down the on call haematologist was one of my old Drs, he got me an appointment in the ITP clinic (which didn’t exist 20yrs previously) and I’m now on Romboplostmin, something that didn’t exist when I was discharged.

I’m not so tired now and have a count of 80/120.

But for 20 yrs I lived fine with a very low count, it is possible.