Platelets drops while on Prednisone

Hi guys,I've been diagnosed with Anaemia with ITP in October 2016 and been on Prednisone since.I was hospitalized for 10 days with Platelets at 5 & HB 7.I received blood & platelets transfusion then put on prednisone.I responded well on the treatment initially which took my platelets to 208 but now my platelets are dropping.Initially I was on 100mg, then 50,then 40,then 30 then 20 then 10.My platelets started to from as I got to 40 & still continue to drop.My platelets are awere 108 5 days ago & now it's 69 & I'm only taking 5 mg of Prednisone.My phisician said I need to go back to 30mg of Prednisone.Do I need to stay on steroids ?Can I come off steroids & still survive?I don't like my moon face☹️.Please advice I'm worried as steroids are also not good for one's health.

14 Replies

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  • haven't they mentioned other treatments? Say you don't want them .try something else.x

  • hmm try to change your diet and talk to your doctor about it :)

  • Moon face is only temporary. They are trying to find a level of steroid that will stabilise your condition. If that does not happen then there are other treatments out there. I put on four stone when on steroids. They did not work for me. The weight came off over time. Nicky

  • Your Hematologist / Doctor should be able to decide to up your Prednisone. We all have the moon face

    but it goes away when your dose of Pred lowers. You need to be patient! I was diagnosed in May of 2016 and now on only 1/2mg of Prednisone - it is a slow process. God lluck

  • Steroids are not good for you and for use they presented a very temporary relief after which my son's levels plummeted. My son (18) who was on prednisone for a while was very irritable and angry constantly. He has not been on steroids for over a year, his platelets are at 10 but they are large and he does not bleed extensively. Of course they are risks so he has to be aware and careful. Overall I prefer no treatment. I do put him on steroids for few days at when needed (like a trip to Cuba with his classmates last year). I will also put him on steroids in the next week before his wisdom teeth removal.

    I agree that you have to talk with your haematologist, we are in constant contact. Our haematologist suggested doxymethasone (also a steroid) you basically get treated for four days with very high doses and supposedly it can last for a couple of months or even longer. We have not tried it yet. There are other options but all of them present with their own risks.

  • Hello. My daughter is 16. Had platelet levels of 5 but now 35 after two weeks of steroids. They didn't work. Is your son exhausted? My daughter is.

  • yes, that is the biggest problem we are facing. Prednisone did not seem to help with the fatigue, even though his platelets went up for couple of weeks with prednisone. To tell you the truth I think this is the most devastating for my son, the lack of energy and I do not think anyone is addressing this issue. There are some ties to serotonin levels and fatigue but the correlation is not all that clear

  • One of the gifts i received from taking prednisone for over a year is kneecap arthritis. i am Suffering from the pain in addition to ITP. Like everyone with ITP, we went through shingles, fatigue, bruising, bleeding, rash, petechae, changing diet, deficient of iron, vit D, etc. Blood tests more than you want in a given year, sometimes hospitalization, spent a lot of $ on medications, doc fees or co-pays, absences from work, etc. Now, i'm dealing with hives so seeing my doc is a regular thing. You may go through the same thing as you deal with yours but everyone has given their testimonies of doing well while having ITP so don't lose hope. Observe your response to treatment or take control. In my case, i am in the stage of avoiding medications as maintenance since i'm doing fine at 40k to 60k. Used other people experiences as a positive sign that you will be fine. Instead prepare for what may come which is the ugliest & stressful to deal with compared to having ITP (i.e. taking medications may require you to take time off from work frequently so check what you need to protect yourself from being fired from work, check your insurance which treatment are covered or not so you don't end up with large bills or buy supplemental insurance, etc). Hope this helps.

  • Try out (1) kiwis --2/3 per day, (2) in the morning 1 garlic ,(3) beetroot + carrots juice, - --- we have received good results on my nephew 13 years with ITP .

  • Prednisone plummeted my platelets to zero so will not be used on me again. We all seem to have different reactions. Have had ITP for about 15 yrs now and only need treatment now and again when I have minor ops, otherwise I am medication free.

  • I was put on 100mg of Prednisone when my platelets dropped to 10. They shot up to 198 so my haemotologist cut the steroids to 50, 25, 10 over three weeks and they plummeted again. Her words to me were "well that didn't work let's take your spleen out!" I refused and asked to go back on steroids and to come off them more slowly. My levels didn't plummet so much and I also had a course of Rituximab. That was three years ago and my levels are currently around 39. I haven't taken any further treatments and can live with the condition. I do get tired but find taking Metatone tonic, high strength vit B12 and Vit D and drinking lots of water helps.

  • Have you been offered Procrit ( a RBC stimulating drug) weekly infection to maintain adequate hemoglobin. Nplate stimulates your body to produce platelets, I've started in 2010 and receive weekly injections to maintain my counts 50 to 80K, it's the only thing keeping me alive and active. Check out mayoclinic.org for treatment options. Hang in there, things WILL get better. Feel free to contact me at yoyo0106@sbcglobal.net, kyriak51.

  • Hi,sorry for the late reply I've been studying.No I haven't been offered anything except prednisone & only now the Haematologist wants me to take Sandimmun.I will ask my Haematologist about it.

  • Hi,I haven't tried it,I will check it out.

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