ITP Support Association

Just diagnosed with ITP

Severe bruising on legs and arms brought me in to the doctor a week ago. Blood tests showed a platelet count of 10. The next day, a second blood test showed that it had decreased to 9. Happy to have this ITP resource to learn about this disorder I did not even know existed. I have a follow up appointment tomorrow. Fingers crossed my levels are higher. Thanks to you all for sharing your experiences. It has given me insight on what to expect with this disease.

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Did they do any treatment?

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Yes. I am on prednisone. Have had 3 blood tests during the week to see how it is affecting my platelets. I meet with the hematology ITP specialist tomorrow to see what effect it has had. I noticed some new bruising today, so I am worried. I am 48 and have had no prior health problems. It has all come out of the blue.

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Same here, just suddenly. I had hemolytic anemia in 2015. autoimmune also. My immunesystem rejected my red blood cells and I went yellow and had to be taken from doctors Office to hospital in an ambulance .This febuary Suddely like you bruises started to appair, nose bleed and tiny red dots petiche, on my legs and spreading on body. I New something was very wrong, on to the emergency clinic, and from there to hospital agien!, I had never heard of ITP before eather, The doctors said that ones you have had 1immune illness like this, there are greater risks of getting som other immune system trouble.

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Hang on in there. I had to attend hospital 3 to 4 times a week for over 18 months trying 7 different treatments each of which lasted 2 - 3 months before moving on to the next one. I am now stable on a drug i take twice a day and have been for several years. I now go to the hospital every 6 months for a blood test and my count is around 250. We will all tell you it is a roller coaster ride with no certainties. But i have found this site to be amazingly supportive and i like to help support where i can. Nicky.

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Hi Nicky, thanks for the encouragement. I have read many of your posts and appreciate your detailed observations of your ITP journey.

Craig

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Hi Ck1to

You don't say if you male or female but here is where I am at the moment.

Like you I am 49 year old male with no real health problems ( apart from a benign brain tumour in 2003 ).

Woke up on the 4th October 2017 to a mouth full of black blisters. After a visit to doctors and the usual blood tests ended up in A&E with a count of 1.

Transferred to a heamotology ward and started the course of Pred that we all get put on.

The effects of the high doses ( I started on 90mg per day ) vary from person to person. I coped quite well compared to some but did put weight on and being a gym freak did find it stripped me of muscle and strength. Oh and you wont sleep much have loads of energy but be knackered at the same time!!!

Cut a long story I quickly got my numbers up to the 200 range where they stayed as I was weaned off VERY SLOWLY and 2 weeks ago I took my last tablet ( hopefully).

Got another blood test in 2 weeks to see if I am holding so we shall see.

Hang in there as the Pred is aweful stuff but if it works it's worth it.

They do say you only have remisson with ITP but there are lots of treatments available if the first doesn't work.

Oh and I've still eaten what I want no fad diets or mirracle herbal stuff....

If you need to PM me during your journey with the Pred and it's array of wonderful side effects please feel free to

Steve

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Thank you Steve. I have an appointment today, so will see what treatment direction is decided. Thank you for the offer of reaching out to you via pm.

Cheers,

Craig

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Check your Vit D levels. It should be in the range of 80-100ng/dl. Most of the auto immune disorders are due to vit D deficiency. Kindly check and let me know. I will suggest you Vit D therapy

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I’ll ask today at my appointment and get back to you.

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OK. This is my email ID drharshatr@gmail.com

You can reply here or to my email

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Hi CK1to

I am sorry to hear you got to deal with this. I got ITP one year ago 5/17 after a trip to Costa Rica. I am just curious if you have been traveling abroad? Also, I am seeing a homeopath since 9/17 who after 5 months of IVIG every 2 weeks and 6 dex bursts the homeopathic dr is getting me stabilized by balancing my immune system with homeopathics. I do still take Promacta but only 25 mg and just 3x week last plt count 186. I do get labs every week. I also wanted to share there is research about having a 4 day dexamethasone burst of 40 mg x 4 times can stop the ITP.

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Why yes, I did travel abroad. I was on a Caribbean cruise to the Dominican republic where we hiked and swam in waterfalls in the jungle. Not sure if that could’ve somehow contributed to this, but it is interesting to at least acknowledge.

Thank you for the information about your treatment. I will see what the doctor recommends today and go from there. Thank you for your support.

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Hi CK1

By the way, I felt very lethargic and had hot sweats at night the month I got back. I went to infectious disease drs. They found nothing but did not try very hard to find anything either. My Hematologist said, "It is what it is you are 50 y/o and that is the time people get ITP; get used to it." Pretty irritating and not helpful! Let me know if you have other questions.

Good Luck and Be Well!

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Hi CK2to, welcome to the group. You will find a wonderful educational resource on this site, learn as much as you can about your disease it’s cause and treatment options, the more you know the better the care you wil receive. Have met with a hematologist?

I was diagnosed in early 1990’s and refused steroids preferring to waite until AMGEN developed a platelets stimulant drug (Nplate), which was approved in 2008. I was so sick by that time, platelet count of 10K, that I had not kept up with the latest advances and agreed to treatment. Dexamethasone, IVIG and Rituxan all of which failed. In 2010 I was started on weekly Naplat (romiplostim) injections to maintain my platelet count between 30-80K which works for me. As you know there is No cure at this time but research is on going. Be well:)

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Hello Kyriak51, thank you for the message. I have met with a Hematologist that got my case after my G.P. sent me to the emergency room. She is supposedly one of the top ITP specialists so I am happy and trust her.

We decided together that I try steroids, after explaining other treatments. I saw improvement the first few days. I will have a blood test today to see where my platelets are at with a full week of 60mg of daily prednisone. Thanks for checking in!

Cheers,

Craig

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Hi cK1to, prednisone is generally the first drug given and many members of this site have had a good initial response. The side effects are unpleasant but subside as dose is decreased. You seem to have established a good collaborative relationship with your Hematologist, I love it when I hear patients say “we decided together “.

Please let me know your platelet response to the prednisone and how you’re coping with side effects. Hang in there, you’ll feel better as your platelet count rises. Where do you live, I’m in Chicago USA. Be well:)

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I’ve been on prednisone for three weeks and it hasn’t been easy (anxiety and other common side effects). I wish it were helping greatly, but my platelet numbers have decreased for two weeks after an initial rise to 54. The second week I went down to 44, and tonight, I found out that I am down to 37. Not sure if they are helping. I’m taking 60mg. I think I’ll reach out to my Haemotologist tomorrow and see what she has to say. It is scary. Was hoping for positive movement. I know there are other treatments, and may just need to try something else.

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My ITP also just happened at age 45. No health problems what so ever. Just woke up January 25, 2012 and my urine wax the colour of prune juice so I went to the hospital. My platelet count was 1 and I already started internal bleeding. I did have massive bruises all over legs and arms but I was doing all the farm work for my dad and dealing with the cows so I thought nothing of it. I had full physical and blood work done the beginning of December 2011 and my platelet count was 425 according to my family doctor. So apparently ITP comes fast and without any apparent reason. Just follow everything the doctors say and you will be fine

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