So I have been a silent reader for more than one year since i was diagnosed with ITP. Before beginning I would like to describe my unusual story of ITP.
So 2 years ago around mid-August I got HFMD ( HAnd Foot Mouth Disease) and after a weak all my ulcers healed. Post that in September I was diagnosed with Acute Hepatitis with a Total Bilirubin Count 7 which i and my current doctors think was caused by the same HFMD that i had the prev month. Moving on to October I had developed Acute Pancreatitis was treated in a local hospital and discharged after 10 days. And in a period of 3 months around mid January my liver enzymes went back to normal and i was weaned of the medication.
Note that during this entire period I had Platelet Count between 250K-400K. As I felt that life was getting back to how it used to be, i was unaware of the fact that my fate had something else written. So last year in mid feb that is after 1 month after being off medication, we travelled to my grandpa's house. I dont know whether i contracted while travelling through the train or before or after that, i developed a fever after 2 days of reaching my grandpa's house. We all thought it was some normal infection but it wasn't.
In the next two days I developed Shortness of breath and chills and we rushed to the local hospital. I remember I had elevated Bilirubin which i thing was due to fact of taking paracetamol every 6 hours which i still regret due to consultation of our family doctor along with a 70K platelet count (this was the first time in my life i had low platelets)high neutrophils and very low absolute lymphocyte count. I was also tested for some common viruses like malaria dengue etc. which all indicated no current infection due to this viruses. I was happy that I had no such virus and was reassured by the doc it was just some normal viral infection and my counts and liver levels will get normal once i get fine. But things took a wrong turn. The next day I did not have much of fever as much as i remember it was not above 100F however contrary to what i thought my body had actually lost the fight. In night I could not sleep had pain in my left hypochondrium. My morning i could not even move i had vomiting. I could not even breathe. Upon reaching the emergency i was admitted in saturation. I had subconjuctival haemorrhage in both eyes, very high pulse rate, very low bp, 20K platelet count, 9 hb, 3k wbcs, 1500 ferritin, high liver enzymes, high creatnine, high triglycerides, high crp and i dont remember what more the only thing which i was told was i will be fine and later found out that my parents had been told that it was nearly 10% chance based on my results and symptoms that i would survive and i managed to pull it off
. I was diagnosed with Secondary HLH and ARDS. Was started on 2000mg Pulse Prednisone, Broad Spectrum Antibiotics and was on Bipap Support upon which i heard the docs saying that if i dont improve on it i would on a ventilator so i pushed myself as i did not wanted to ventilated. Multiple viral and bacterial tests were sent which all came out to be negative. They only didnt sent a blood culture and also didnt do marrow biopsy which could have actually did i even have hlh or was it something like sepsis. Anyways I soon improved was moved out of the ICU in 5 days and with improved blood results and clean x ray was discharged with antibiotics and tapering steroids (120 mg initially) and with a platelet count of 245K and was referred to one of the best hospitals in our country which is about 3 hour distance from my house for further follow up and investigation so as to detect if i had primary hlh or some other autoimmune disorders.
So two weeks later i visited their rheumatology clinic and was given a big list of tests and cbc along with some nk cell activity perforin tests and few more to rule out primary hlh. To my good luck which i thought that time all tests were coming normal only had high cholestrol as i didnt stop binge eating as i was not told that i did not know anything about steroids at that time. So I was slowly reducing the dose of steroid and all my tests coming in my favour i noticed blood tinged nose secretions and also multiple red spots in my mouth. My next appointment was month later and i had been on 10mg pred for a while and the day i had to start 5mg pred my sister noticed bruises in my hand and several petechiae. I googled up and found a video about blanching dots on the skin. SO on performing the test myself i found it was no ordinary dots and it was something serious. I went for a cbc and found out i had a platelet count of 8K and MY JOURNEY OF ITP BEGINS - MAY 2023
So i was landed in a local hospital for platelet infusions that did no good and increased my platelets by mere 1K. They could not understand what was going on and I was sent tp the hospital back again where i had my followup the next month. Again loads of tests and infusions which all came negative. Finally a marrow biopsy was done to rule out some malignancy which it ruled out as well. I was sent back to home with an increase in the dosage of pred. I hit 40K and was tapered to 50mg from 60mg and was called to weeks later. But due to my intelligent family doctor i was again in trouble. I was taking PPIs with steroids and i developed some diarrhoea and he told me your immunity is weak so you need to take antibiotics right away and i did what he said and the cherry on top was he even added a small tablet which would cost my family a huge loan that we were able to completely repay the last month and that was loperamide. Within few hours i developed Invasive C-diff and started heaving blood stools. Again a trip to hospital but this time i was referred to the hematology clinic by the rheums. Had a platelet count of 2 and 16 hb to the docs surprise and was treated with a course of ivig for 5 days with vancomycin for c diff which our insurance provider didnt cover. Was discharged 5 days later with 343K platelets and the decision of stopping steroids. I was told to wait and watch and taper the steroids as per their protocol and reach them once platelet reaches below 100k. So the next days after stopping the steroids i had dropped to 70K and visited the doc next day and was started on MMF 1g per day
july 2023 - 1g no reponse 20K platelets
august 2023- 2g started
sep 2023 - 2g had a very bad flu my platelet wen to 90K but sadly dropped to 26K within two weeks
oct - 46-50K
november - 70k
dec - 90-100k
jan - 120k
feb -120k
march till my last test in august my platelets had been around ( 145 to 196 K) and was tapered from 2g to 1.5g in feb and 1,5g to 1g in july
In august after one month of being on 1g I had a count of 144K
but sadly in the last week of august i had a cold and since than i have been seeing multiple petechiae on my arms and thigh. I thought it will get better in a few days and it did but again i had been seeing some red dots on my arms and i went for a cbc today and had a count of 16K . I dont know what to do. My dad will visit the doc tomorrow let us see what happens. I have not seen my docs since last 11 months as they advised my parents of not bringing to the hospital until i have any problem due to the risk of infections PS i am a young adult (19) M
. I had been writing this since the last hour and feel better now. I have had no one to tell my story so i wrote everything that came in my mind so sorry for wasting your time
Fingers crossed hope my counts go up again and i since the last year i had searched and only found a few studies on mmf in itp and not found much about it on the forum. Is anyone being treated with MMF for their ITP solely?
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