Newly diagnosed with ITP

[RNTX]

I was just diagnosed with ITP in January of 2023. My platelet count was 98 on a routine physical , my physician thought it was a lab error and repeated it a week later only to find it to be 52. I was referred to a hematologist and it hasn’t been out of the 40 range since January 25th. He hasn’t started me in anything yet. Full work up done other than a bone marrow biopsy which he doesn’t think I need at this point to rule out any other causes. My question is when were you started on steroids (count) and did it help and for how long? Are steroids just a temporary fix and then you have to go on long term medications? Has anyone noticed an increase in platelets, based on certain foods or vitamin supplements? Thanks so much! Feel free to give me your story and history about your experiences.. Iam so glad to find an outlet since this is such a rare blood disorder.

[Sebalinga]

Wait until you find out what the potential cause is that triggers the ITP. Most often then not it is a viral or bacterial infection. Some people immune system rectifys it self without any medication. But if you do need steroids these are a temporary measure to turn your immune system off and reset it. For some people such as myself this does the job and I am stable until another infection. Some people need more long-term medication. But until you know the potential triggers try not to worry. (I know that’s easier said than done. I have had ITP for 37 years and though it’s a rare condition under good advice, care and support from the haematologist, I lead a generally normal life, but am just a bit more cautious with doing certain things. This forum is a great place for support. Let us know when you find out the cause as this will give you a better indication of future intervention. 😁

[Thrombosucks]

I would recommend holding off on medication especially steroids. Have the doctor monitor and take some supplements. Wheatgrass, papaya leaf extract, pomegranate juice are all helpful in increasing counts. Stay away from caffeine and eat a clean diet. Good luck. I’ve been dealing with low platelets off and on for 10+ years. Usually my platelets recover within a few months.

[Anthonyh7]

You may find our You Tube channel helpful, it has 90 ITP related videos covering many of the key issues... youtube.com/channel/UCRkHWf...

[Calliecookins]

I have chronically low platelets (usually single digits). My hematologist is happy if I can stay near 50 and my late hematologist would not allow me to take my medication until my platelet count dropped below 30. So far, nothing has held my platelets for much longer than a couple of weeks, including steroids. My spleen, liver and bone marrow when tested had no problems.

[CJP2 in reply to Calliecookins]

have you tried Eltrombopag or similar medications, or Rituxamab.

[holcotts]

Steroids work for me but one cant be on them for too long because of damage to bones. Plus they can have unpleasant feeling side effects...... make sure you come off them really slowly ....

[ChurchGirl64]

The first year, my count was as low as 8, so I was on steroids for months. It didn’t stop my ITP, but it at least got me to a safer number. I was about 110 when the steroid side effects were too much and they weaned me off them. My count came down a lot after steroids, but never dangerously low ever again. As long as my counts stay about 30 or more, I take nothing and am fine (have been for 27 years). If I ever needed a procedure, like a big surgery, the doctor would have given me IV Ig to boost count to normal quickly. What was explained to me is that the ITP platelets are released from bone marrow as immature platelets, which are actually larger than mature platelets. Because of their size, they do a pretty nice job of clotting, so that helps make up for the fact that there are fewer than normal. It’s always a good idea to talk to more than one doctor to see what your treatment options are.

[Seafood]

I was diagnosed in 2017 after both parents passed 4 months apart. I am an only child.

I think the trama of that couple d with divorce, my kids going through teens, etc.

I went to 2 hemotologist before finding one I could like. This is important since you will be with them for life.

I cannot do steroids. I currently taking promacta. All meds are bad, but life can be bad.

Promacta 25 mg. Very &$$$$, get your Hemotologist to help. Best of lick

[bruiser2017]

Hi RNTX, with a count of 40 it is unlikely you will be put on any medication, normally haematologist will not prescribe any drug intervention until count drops below 30.Try to keep away from steroids.

All best for your future.

[vladseme]

One question, please.When you say 98 or 40...you mean 98.000 or 40.000?

Because there are many many ITO people who live without problems with 15.000-20.000.

You need to take care of many aspects of your life but your life will be ok.

In fact there are things to do which will improve your life. For example no smoking, no alchool, no carbo, no plastic etc.

I live in Romania, Europe and when I was diagnosed with ITP I had a 2.000 platelet count. I was full of blue stains indigo style.

[Lynney11]

I was diagnosed in 2009 with a count of around 50. After tests including a bone marrow biopsy it was concluded that my immune system was attacking the platelets. I was monitored every 4 months until 5 years later when my count dropped to 29. That’s when I stepped on the roller coaster of ITP treatment! Firstly Steroids sent my count soaring but after a couple of weeks it plummeted, next was IvIg infusion. Again, initially my count soared but rapidly dropped, then it was Rituximab infusion which sent my count high but again, it dropped. Eventually it was decided to try Romiplostim in the form of NPlate injections. I had to go to the hospital weekly to receive the injections and it worked!! My count was never very high but was consistent ranging from 50 to 80 which my consultant was happy with. After a few months I was shown how to self inject, which meant trips to the hospital were greatly reduced, and involved going there once every 2 months to be monitored and collecting another supply of injections. Finally in early 2017 I asked to try Eltrombopag as I was planning a trip to USA and was concerned about storing a 2 week supply of NPlate, as it needed to be kept refrigerated. I tolerated the Eltrombopag well and have been taking 25mg daily since then. My count is consistently in the low 100s and I feel fine, going to the gym regularly and Pilates once a week, walking with a friend, going on holidays in this country - since Covid I haven’t been abroad, but will be visiting USA again next year. All in all the only thing that reminds me I have ITP is taking taking that tablet before I go to bed. Good luck with finding out the cause of your ITP and stay positive.

[joecirillo]

I have ITP for two years. Starte with platelets at 1. Steroids did not work. IVig worked to bring them up but they would drop after a week. I took IVig until I was able to get Promacta ( you can get if for free if you apply to the Novartis foundation) It is really expensive. Promacta brought my platelets back to normal with a month and I was weened off. Unfortunately 1 year later they dropped again to 1. I went on IVig and started promacta again. They recovered very quickly and within 2 weeks I was back to normal and off promacta again. It is now a wait and see game. I get checked every 3 months and look for symptons. Good luck. My hematologist said platelets over 30 required no medication. I never had a bleed even when my platelets were at 1. Symptons were basically bleeding gums thats it

[Pilgrims123]

It is a bit scary when you are first diagnosed. I was around your age when a routine blood test highlighted low platelets. I have a blood test every 3/4 months and my platelets are usually in the 60-70 range. I haven't had any treatment so far and manage well even though the bruising can appear from nowhere and looks quite horrendous. I have wondered if my low platelets are as a result of the menopause or caused by stress. Best of luck.