Immune Thrombocytopenia Purpura (ITP): What helps?

Hi @michey. Oh those stubborn husbands! You’re right to lovingly push him to up on that latest blood test which showed a further drop in platelets and and his red blood cells. It may be nothing more than something to raise an eyebrow but the fact that he is seeing some changes means it’s time to take a closer look.

No lectures from me…we’re all guilty of checking out Dr Google. The good “doctor” is all knowing, but unfortunately sometimes all that information leads us down a rabbit hole filled with twists and turns that aren’t even relevant. So, from experience, the best thing to do is wait until you hear what the doctor has to say. And yes, you should go with your husband if he relents, to take notes! All of my doctors/oncologist/hematologists welcomed my husband to appointments. As patients we’re trying to listen to everything with information flying at us 100 mph. So having a spouse or good friend along to grab some notes & give support is an excellent idea.

One note, depending on how low his platelets are your husband might need to avoid knife juggling until he gets in for his visit. But keep up those amazing hikes and good life style. That’s worked well for him (and you) for 80 years with no meds. That was always my goal too…then Mother Nature had a surprise for me…😏. But my medical teams have all said my previous lifestyle is what had me recovering so quickly. Our healthy diets, exercise and positivity most definitely impacts our quality of life.

I know it’s human nature to worry but try not to read too much into these blood tests right now. You also found out you have MGUS, one of a number of watchful waiting conditions that often require no immediate treatments. 🙃Let me know what you find out next week, ok?

Nplate < romiplostim > is a weekly injection that helped me when all else
failed , dxed three years ago with ITP and have had platelet count as low as 1.
Wishing you a good outcome.
Geno.

Thank You for your well wishes. Have you had any adverse side-effects from NPlate?

no not really slight headache and a little tired that usually last for a day or so after injection.

My doctor has also been diagnosed with immune thrombocytopenia (ITP) but is not sure what is causing it. Would also like to know.

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.

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.

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?

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

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?