ITP and JOB

Hi All
I'm newly dignosed as ITP with platelet at 5 k and gum bleeding..blood blister in mouth..bruises..petechie on 2nd May 2019..though even after starting steroid solumedrol my count did not increase for few day..bleeding stopped immediately and my hematologist explained that I'm producing large platelets..and even 1000 large platelets are equivalent to 5000 small platelets..so they work efficiently..I was still at below 10 automatically but hematologist counted manually at 12 k..he said large platelet may get counted as other cells hence giving incorrect reading..then slowly with 40 mg prednisolone (i would like to believe papaya leaf extract fresh juice also) counts were in normal range since 17 may.just started tapering..let's see how my count stays..had taken leaves for full month even though I was hospitalized for only 3 days.

Because when I was diagnosed, I had gum bleeding with clumps...but did not think of it any seriously..just went to dentist...she said come tomorrow we will do scaling...which 3 days later turned out to be ITP with platelet count 5k. I was unaffected by it totally...However after reading so much about ITP and horror stories that it is not curable...relapse at any time...I can wake up with bleeding at any given time..I'm depressed to the extent that I'm living with my parents at hometown and company allowed me to do work from home..desk job..I'm all time worried for job..what if there are frequent hospitalization depending upon symptoms....what if I could not manage all the stress..

Also constantly worried regarding unpredictability of the ITP..what if after tapering which is very short 40 mg for 3 days..30 mg for 3 days, like that mg for 3 days like that...dont want to stop taking steroid 5 mg..which I feel is my safety net....

Hey.
You know , this itp (and this forum) is like a prison ... there's always (worried) newcomers
Well , don't worry ! I was diagnosed almost a year ago.
It is not true that you will relapse ... If you go into remission , I recall there's like 15% chance of relapse in every decade(or something like that . I have am article for at least 10 years follow up supporting this) .
up to 10 years , about two thirds can withdraw from drugs (couple of articles).
given splenectomy is 50-50 , again 50 chance of having a drug free life (again I have supportive articles)
also rituximab seems to be curative in 1/3 of people (guess what ? again articles !)
I'm not sure about success rate of stem cell transplant success rate (which is really rarely used) but say that is 1/3.
to sum it up , the risk that you still have this after 10 years and after you tried everything is : (1-2/3)*(1-1/2)*(1-2/3)(1-1/3)=1/27 <4% !
and even if you do not achieve remission , there are handful of very nice drugs that will control your diesaes and will let you have your normal life !
read this three articles to see how rare is mortality of itp and how frequent is remission . these are very old articles . after these years , two other approaches (rituxan and TPO's) are added which have changed the game !
www.ncbi.nlm.nih.gov/pubmed/14502264
www.ncbi.nlm.nih.gov/pubmed/11313240
www.ncbi.nlm.nih.gov/pubmed/16885043

so , take a breath !
yeah , it might seem hard , but after couple of months you (like many of us ) will gain full control of your life .
by the way , since I was talking about remission (which is above 30k) , if you also consider safe range , say +10k , statistics even get better !
You'll soon learn how much is your danger zone and find that platelets aren't as necessary as you think ! in fact , our ancestors who were exposed to many wars and had to hunt , maybe needed 250k platelets to survive injuries , but in these days life , much much less than that is acceptable (based on your assertion that you have a desk job ).
take care

Hi Lman..thanks a lot for encouraging words...it really is a life changing disease..I get courage from this forum people who I feel has more knowledge than many haematologists...hopefully I can cope up someday..