2nd episode of ITP - Question about speed of onset.

[garyjacksteer]

Hi - I have had 2 episodes of ITP (about 6 months apart). My current platelet count is a little over 200, initially it was 1 and then had prednisone, platelets, IVG and then a 4 week course of Rituximab administered. It seemed like during this 2nd episode I noticed blue spots on my body in the morning and then within a few hours had the blood blisters in nose and mouth. On the first episode, I noticed the blue spots and it took days before the blood blisters in mouth and nose appeared. I may have missed early warning signs but have others experienced changes in speed of onset?

Also, have other experience any side effects of ITP or medications that are similar to those symptoms of Raynauds - the feet, hands or parts of the lower arms that feel like they are freezing cold?

Thank you,

Gary

[peggyabrams]

Hi Gary

I as diagnosed with ITP in June 2016. I had a rash on my feet for about three days and thought nothing of it, that is until mouth blisters and severe bruising appeared together literally overnight. I went straight to hospital my and platelet count was one. Knowing what I know now it seems that the warning sign was the rash (can't remember the name of it but I know it has one).

Again when I think back, my gums had been bleeding for quite a while. I put this down to dental work that I had been having and thought little of it.

Reading threads on this page though it seems as if any form of bleeding, gums, nosebleeds etc are indicators that there may be something wrong. Vigilance and knowledge of symptoms seem to be the key to spotting warning signs. That's why this site is so good as it's so informative and peoples experiences are so broad.

Keep well Gary

[Topography52_- in reply to peggyabrams]

I agree I have had nosebleeds off and on for a few days plus am also having bloods taken my main worry I need my blood : (((( currently my platelets 60 have been 51, 27, 21, not quite sure how it all works ????, my hemotologist explains it all but at the moment it is s lot to take in .... keep well Gary .... I am very new to this couple weeks tbh .

[Morgan in reply to Topography52_-]

60 is a good count for most ITP people - I have just reached 60 after being down to 15 for a while and have had ITP over 15 yrs. Absolutely no bleeds, rarely spots, no treatment until I needed dental work. No need to worry about your blood it is is easily replenished, my hemotologist says we can donate blood.

Gary - my hands go numb when they get cold too.

[Topography52_-]

Good to know 60 a good number : ))))) my incident may be linked to shingles I had beforehand viral infection I do find the fatigue and painful joints are awful is this part an parcel if this disease I work full time and I have noticed it is slowly me down I am in a manual job so it's not good : ((((( .

[dede7]

It's hard for me to work a full week I have to get more sleep for sure 8 hours and restful sleep too

[Topography52_-]

Do you think this is part parcel of Itp ???? My most painful joints are my shoulders ,knee, and right thumb this one is very painful to the point I struggle with a bottom and taking tops of ..... I agree with the sleep I work Mon/Fri and weekends of I slept 12 hours plus this weekend is something I don't do : (((( maybe I need this hopefully other investigations may find something .

[Lynney11]

I have had itp since 2009, but as my count then was hovering between 60-80, I was just monitored every 4 months or so. No symptoms other than bleeding gums and bruising which took a long time to heal, no fatigue at all. Then in 2013 my count dropped to 29 and then the roller coaster of treatment started. Firstly steroids, then IVig, then Rituximab and lastly, the drug that worked, Romiplostim (NPlate). My count has been relatively stable ranging from 50 to, at one point, 105! But it has never dropped to the very low 7 it was in October 2013, when the steroids stopped working. I have been self injecting with just monthly visits to the hospital to have my blood checked. However just a few days ago I changed to Revolade (eltrombopag) tablets. This was because as I will be travelling to USA this summer, it was going to be difficult to keep the NPlate refrigerated, and I didn't like the idea of trying to get through US customs, trying to explain why I was carrying hyperdermic syringes in my bag!

What surprises me is the wide range of symptoms everyone has. I don't suffer from fatigue, in fact I am almost asymptomatic, in that I only suffer from bleeding gums and frequent bruises which grow huge before subsiding which can take weeks. I suppose I am very lucky in that respect. Good luck with your treatment, if you need it, but as I said before my treatment only started when my count reached below 30.

[garyjacksteer]

Wow - it is great to have such a supportive group! My follow-on question is me trying to understand what may follow in the future: Currently, my platelet count goes back up into what my doc says is in the 'normal' range, usually within a week or two after treatment starts - and this time it stayed 'normal' for about 6 months before dropping. Is this what others have experienced? Or once the count goes low, it stays low from then on (even with medications)? Or experienced both? Thanks - Gary