In Remission for a year

[joecirillo]

Hi has anyone had a long remission with normal platelets ( no medication) only to go back to less then 10 again? I am hoping I am over ITP. The first time I had less then 10 for a couple weeks which was brought back to normal with IVIG and promacta. I was on medication for a month then none at all. Platelets went back to normal for 14 months before less then 10 again. Shorter time to return to normal 2 weeks after IVIG and promacta. Then no medicine. I am 1 year since last bout and still normal last CBC 290 platelets no medicine. I am hoping I never have to deal with this again!! I am 69 so I do not have that many haircuts left anyway.

[PennyHeron]

i was diagnosed with ITP 50 years ago. Unresponsive to steroids at that time so had a splenectomy. Two children including a cs and other ops for appendix, hernia, cut tendons etc with no problems my ITP returned with vengeance and for 7 years I have been on a merry go round of high dose prednisone (which does lift numbers but doesn’t last). Also been tried on all the other meds available in Nz with no success. I am now on monthly IVIG infusions which don’t raise numbers spectactularly but enough to keep me off steroids. Now hover around 25 - 50 which I am happy with. Good luck to you.

[joecirillo in reply to PennyHeron]

Thank you for your reply. Have you tried promacta. I was on IVIG just to get my platets over 50. I was at 1 at one point. I then started promacta which I guess got them back to normal at 250-300 and got off Promacta and all meds. So far it has been a year since my last bout with no meds and I am fine. I am hoping I do not have to go through that again.....hospital etc. Steroids did not work for me at all. I was given a high dose and platelets remained below 10 for a week before they gave me IVIG and that worked

[Thrombosucks in reply to joecirillo]

I haven’t had this exact issue but I had an issue in 2012 after having my son but went into the normal range within about 9 months. I didn’t have another issue until 2022 and since then it’s been a roller coaster. I refuse pharmaceutical medication and monitor with blood tests every other week. I hope you’re done with it but it may be that you have a trigger that sets it off. They think mine is hormonal levels related to post partum since both times it was close to giving birth or another significant event.

[PennyHeron]

Tried that. Don’t know what I would do with platelets of 200+. They have always been under 100 and I am happy with over 20 now.

[joecirillo in reply to PennyHeron]

Thank you and good luck to you.

[BeccaUnit]

My longest remission was 11 year stretch- it's possible with some lifestyle changes to reduce your risk.

[joecirillo in reply to BeccaUnit]

Thank you for the reply. what life style changers are you refering to?

[BeccaUnit in reply to joecirillo]

What has worked for me -

Masking up. At work, shopping, going out to eat - yep. I am that wierdo. If you work in a place that has communal phones, computers- sanitize that cesspool daily or just hands off it all together.

Keeping vaccinations up to date. Always remember that ANY vaccine can cause an ITP reaction, just the nature of the disease. I do a 4-6 week cbc follow up with my pcp to make sure my immune system doesn't loose its damn mind .

Wash hands like a germaphobe. I hate it. My purse now is cluttered with first aid, lotion, sanitizer, wipes. Ugh.. it sucks, but after 20 years and 7 ITP incidents I rather look like a crazy bag lady than sit in an infusion chair.

I work from home now, but my husband and I get out to fish and rockhound - becoming trapped at home is not the world I want to live in.

I have a close relationship with my pcp. I watch my weight, take prozac if stress is eating at me and avoid sitting at home for days on end.

Convincing family to take my health seriously is a struggle- thankfully my inlaws are more understanding and careful about gathering if someone's not feeling well. Wish my actual family was as considerate.

I also have the fortune of being treated by the same hospital for 20 years - I have always tried to keep my residents near the UNC network, and I trust them with my life, literally. If I need to travel, I always research what hospital system is near by, do they have a cancer center? How reputable is it? Etc..

Cherish your health, choose how you want to reduce your chances of a flare (if you know what causes it) and make a few adjustments is the best advice I can offer -

Best wishes,

Becca

[joecirillo in reply to BeccaUnit]

Thank you but i could not enjoy live without eating out and going out. I just came off a cruise. I live one day at at time but thanks again for your input

[peggyabrams]

hi Joe

I was diagnosed with ITP in 2015 with a count of 1 (went down to zero) extensive bruising and mouth ulcers ! I have no idea why it happened. At the time I was suffering high levels of stress (and distress) in my life. I was on a very high dose of steroids which thankfully I responded well to. Since then I have managed to keep well. I feel very lucky but always I am aware of this thing ‘lurking’ in the background as this thread shows. 😳😡 I don’t have solutions or advice but for me I have had to work very hard to minimise stress and negativity (hard I know) and maximise the good things. Just like everyone else, I eat well, exercise and take care of myself . I wish you the very best and hope you get back on an even keel soon. C

[joecirillo in reply to peggyabrams]

Hi Peggy

Thank you for your reply. Interesting that stress may have something to do with your initial ITP. I had a stent in my main heart artery they call the "widow maker" 4 months before my first episode where my platelets also came back at 1. I was bruised, had petchia and mouth blisters. I was misdiagnosed and told the bruises were due to my being on a blood thiner, plavix, for my stent. Luckily I was in cardio rehab and a cardio nurse said you need to be seen this is not normal. I had a problem being seen that day but I insisted. They ordered a blood test and I immediately went to the emergency room where I was placed in intensive care and listed as super critical with platelets at 1. They gave me platelet transfusions that did not work then the hemotogist took over and she saved my life. Told them to stop the tranfusions and put me on steroids. I was on steroids for a week with no positive results. Platelets still less then 10. They then tried IVIG and finally my platelets came up and released with 110. A week later they were back at 7 so readmitted given more IVIG and started promacta. Within a week I was released and platets returned to normal at 250. I got off of promacta and everything was fine for 15 months then back down to platelets at 1. Another emergency room treatment of IVIG and put back on promacta. Platelets repsonded quickly and I was released after a week . Within 2 weeks platelets were back at 250 and i was taken off promacta. Been good for 14 months now but Hemotogist does not want me getting any vaccines. I also watch my health and exercise daily. So hoping I never have another problem but my Hematologist said if it came back once it can again. Did yours ever come back after your initial issue? Good luck to you and it is always helpful to stay positive.

[peggyabrams in reply to joecirillo]

Hi

Sounds as if you had a horrible time; very scary indeed!

No - my ITP hasn’t returned 🤞

I’m cracking on with enjoying life …if it does return I’ll deal with it. At least I’ll know what it is this time.

Keep well and take care of yourself .

P

[joecirillo in reply to peggyabrams]

Great that yours never returned. My Hemotolgist thought the same after a year. She said she was surprised it returned but now that it has, she feels it may again. I hope she is wrong. I am on 14 months and good. Living a normal life no meds and no concerns other then I have to keep a watchful eye if sympton return. My first sign is beeding gums when I brush. Good luck to you! Stay well and positive!