Immune Thrombocytopenia Purpura (ITP): What helps?

I started on 70mgs prednisolone coming down by 5mgs every 5 days. My platelets have gone up from 1,7,25, 75, 115. I am still in shock though about it occurring out of the blue. If platelets can come up with steroids, wouldn’t that indicate that the bone marrow can function normally and it was more likely to have occurred for another reason?

Same thing happened to me. I was diagnosed with low risk MDS in 2017. My platelets ran 27 to 33. Meanwhile I had a serious ear infection lost hearing in that ear. Pneumonia another time and an abscess recently in my lower intestine. They tried platelet transfusions at least 4 times because I needed a hip
Replacement surgery and it did nothing to raise my platelets.
In March if this year they tried steroids. I was put on steroids 50mg for 5 days. My platelets rose to 68 right away. Then in July they were at 112 and then in August they were at 145.
My doctor said she doesn’t get it. Just 5 days on steroids and now they are at 145. I am wondering too. Do I have MDS or did I have a virus or bad infection. Who knows. I think blood diseases are more difficult to diagnose. I read where 40% of people are mistakenly diagnosed with MDS every year.

Just had 1st episode of ITP age 70. My platelets were also 1. Been on prednisolone for 4 1/2 weeks now and platelets now up to 115. Does anybody have any idea whether a bone marrow condition can be ruled out if platelets are rising. Does anybody know please if there any evidence that would suggest it was more likely to have been an infection, or auto-immune disease that sparked my episode?

Too young to having gone thru this experience, best of luck!

Our 24 year old son was also diagnosed with ITP 5 months ago. Symptoms first appeared as Immune Hepatitus showing liver enzymes were off the charts high and platelets were consistently below 5. This condition revealed itself to be Aplastic Anemia. He had a Bone Marrow Transplant on August 4th and is now on day +3. Eltrombopag has been a game-changer.
Recovery is slow ; migraines, nauseau and fevers persist but we are hopeful.

Welcome, @yrag. I moved your post about ITP to this active discussion:
- Immune Thrombocytopenia Purpura (ITP): What helps? https://connect.mayoclinic.org/discussion/idiopathic-thrombocytopenia-prpura-itp/

Click the link to read through previous helpful posts and to connect easily with fellow members like @naiviv @jackolineinman @newtonds02 @tonyscrow and many others who have been diagnosed with ITP.

I'm glad you found some relief from the itching with with oatmeal lotion and are seeing some improvement in your platelet count with Promacta (eltrombopag). How are you feeling generally?

Diagnosed with ITP 5 months ago, age 80, was physically active prior to finding platelet count was 10, hospitalized with injections of everything to bring my count up, dropped to 2 and has been as high as 90 , tried Doppelt with major hives, changed to Promactive with little results, bumped up to 750 and are seeing some improvement-read some talk of itching especially after shower or bath, found some relief with a lotion with oatmeal

I was diagnosed with ITP in November 2011. My platelet level was 1, not 1,000, but 1. None of the staff had ever seen a living patient with low of a level before. I was in the hospital for 3 weeks being treated with mega-doses of steroids, chemo, and a trial drug N-plate before they could get my platelets at an acceptable level to go home. Once they went up, they stayed up. I had a recurrence May 2016 and was treated with steroids and IGG and again, when my platelets went up they stayed up. I decided to have spleen removed to prevent it from happening again. Well, it happened anyway with a recurrence January 2022. I was hospitalized and treated with IGG ans steroids and when I went home, Promacta, which I only was on about a week because platelets raised to an acceptable level and stayed up. (At this time the platelets are anywhere between 350,000 and 400,000). This time I was also diagnosed with hepatitis b (I'd always tested negative in the past). Since I don't use IV drugs and don't have multiple sexual partners, I'm assuming I got it from the blood treatments. Has anyone else experienced this pattern of intermittent remission ftom ITP? And does anyone know if platelets can fluctuate drastically from day to day?

I have been diagnosed with MDS with platelets running in the low 30 even down to 20 when I have had an infection. They tried platelet transfusions even exact match and they didn’t work. Then I was given steroids for asthma and happen to have to go in for a platelet transfusion and when they did the blood draw before the transfusion my count came back at 68. This was after taking only 3 (50mg) steroids. Did another blood test three days later and they went up to 87. So now they said I have ITP with MDS. Yet my red and white cells are good. So steroids were my answer. I also take papaya leaf
extract capsules and they have helped bring my numbers up. Never had any other treatment. Hope this is of help.

Unfortunately there really isn't a conclusive reason why anyone gets ITP, that's why idiopathic is the first word in the acronym. Idiopathic being defined as relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown (thanks google). This might be off topic, but this is why I hate when doctors refer to I in ITP as immune because it gives the sense that we know more about it than we actually do. There is however plenty of speculations and statistics that we can look into. For example, women (born as) are more likely to get it than men. Doctors believe this to be due to the hormone fluctuations they go through. The most prominent example would be pregnancy, which is a viable reason to get ITP, women's hormones are at an all time crazy. It is also seen that girls going through their teenage years (puberty) are likely to get it if they are going to get it. Another important aspect about any autoimmune disease is the likelihood of getting another one. When I finally went into remission with my ITP, my doctor made it very clear that I had a pretty high chance of my ITP coming back or contracting a new auto immune disease in the future. While it sucks, this is what comes with the territory of autoimmune disorders. There are also some sources out there that speculate viral infections can cause ITP, particularly in young children. I have yet to meet anyone who actually fits into this category, including myself who was diagnosed at a very young age. There are also the people who claim that the MMR vaccine can cause ITP, however numbers show that you are more likely to get ITP after contracting Measles, Mumps or Rubella than those who show symptoms of ITP after getting the MMR vaccine itself. If anything I am saying is sticking with you, it's that there really isn't one known cause. Doctor's can't even come up with a universal method of treating ITP some saying go the IVIG route, others steroids, and god knows what else they want to put in you. So if anything, i would stop focusing energy on how you might have gotten it, even though it's tempting, and start thinking about treatment plans according to the severity of you're ITP.