Getting frustrated

Hi: I was diagnosed with ITP last year. My platelets went from 72000 last year to 39000 a month ago. I have had a bone marrow biopsy beginning of Feb and have not gotten the results back should come in this week.. I am a bit nervous for the Dr. who did the biopsy asked if I had, had many fractures since when he tried the first time I felt nothing and since they can not freeze bone it was not a good sign. He tried again and he hit bone but it still was not overly painful so on Mar. 17, I am going in for a bone density test. I have to get my CBC done again this week but I and getting to the point where I am afraid of the outcome. When I quit smoking over 12 years ago I was on the American lung association chat room and that helped me with my quit. I am hoping that this sight will do the same thing. I am not taking any meds for my platelets yet and my Dr. did say I would not bleed to death but what he did not say was with my fatty liver (and I am eating better to stop that) and my enlarged spleen and Rh arthritis and osteoporosis I feel I am running up a hill and will never reach the top.

Are there any people on this site that feel the same. Any suggestions so that I do not get into another depression I have enough on my plate without this too.

21 Replies

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  • I can understand your frustration as itp is very unpredictable with everyone reacting in different ways to the various treatments on offer. However in your case it is very early days and once you get on the rollercoaster that is called itp is can be difficult to get off! In my case I did not have treatment until my count reached 29, before that I was just monitored 2 or 3 times a year. But since 2013, which was when my count dipped dramatically, I have been to the local hospital on numerous occasions. When I was taking romiplostim it entailed weekly trips for injections, which was very tying. However things eased when I started to self inject at home, and my count stabilised at between 40-60. The only downside of injections is that the drug has to be kept in a fridge which makes it difficult to travel, so I recently started taking eltrombopag tablets, not sure if it's working but I'll be at the hospital in a couple of weeks to have my bloods taken. Having itp is more of an inconvenience to me now, and I don't let it get me down. So look on the bright side and don't let your life be ruled by itp, and I think you'll get by. Hey, it might even go into remission!! Good luck, my thoughts are with you.

  • Thank you for your wisdom and support. I am hoping that when I get my blood test done tomorrow it shows they have gone up or at least stayed and 42000. I guess not knowing if my Dr. is going to put me on meds which of course do not help the liver or the spleen or decide to take my spleen is a bit of a worry since I have heard from people on here that their spleen was removed to find out it was the liver causing the trouble. I will wait for my Dr. to give me my results from my biopsy and wait to get my results from the bone density test done. I have read about eltrombopag and my Dr. has not mention this hope all works out for you. Thank you once again.

  • Your doctor should do an ultra sound on your spleen and liver that way they can tell where the problem is

  • That is how I found out I had these problems, my Doctor did not say much and then I ended up at another hospital in another province and I found out so much more. My Doctor is food for getting me in to see specialists really fast but I am not sure about anything else.. At least the specailists seem to help. That is how I found out I had ITP.

  • My husband ended up in Texas hospital with Sepsis his platelets was 7. Air ambulance brought him back to our local hospital.when he was stabilized. It was here he was diagnosed with ITP. Now the specialist thinks he may have lupus as well Before the sepsis set in he had several weeks of ares itch rash on his body

  • My husband gets his blood work done every week his platelets count goes down by 35000 each week when he gets below 25000 the hospital arranges for intravenous. Our son is taking him to to Toronto to a herbalist on Monday for intravenous of vitamins C . Hopefully something works for him. He is 93

  • God bless. It is nice to have a child be able to help out. I do hope something works for your husband he has lived many years and deserves many more.

  • Thanks

  • Hi, sorry to hear you've been poorly with a cold. I find that if I have a cold then my count goes up! I reckon it's because my immune system has something else to think about other then destroying platelets! On the count front I had my bloods taken about three weeks ago after being on Eltrombopag for three weeks. My count was a whopping 487!!! Never ever has it been that high in my life. My haematologist told me to halve the dose of the tablets and two weeks later my count had dropped to 250. I'll find out tomorrow if it has had any effect on my count. Watch this space .....

  • Thank you for replying to me. I got my biposy report and no cancer so that is very good. My platelets dropped again to 34,000 but not signs of any bleeding or bruising just a few headaches but not too bad. I will hear from my Dr. soon I am sure. I was given Pregabalin for nerve pain and have to have and MRI in April and I just read that pregabalin is bad for platelets but my Dr. perscribed it for me and my Pharmacist says that this drug does not hurt platelets but it is on the list for doing just that so I will be asking that question again.. Why give it when they must know it hurts platelets. Ugh.

  • Please let us know how you're doing. I hope your doctor has some kind of good news for you.

    Ruth

  • Well the great news is my bone marrow biopsy showed No Cancer so it is now seeing what to do about the platelet count it went up to 41,000 so it has at least not gone down. The bad news is I have lost my Internal Medicine Doctor for he is moving, so now I hope the other Doctor I am given is just as great. All in all feeling good. Hemotoloty. Chemistry, PT PTT and INR are in normal range so unless I go under30,000 my Doctor says not to worry so I am not going to. I go swimming when I can, eat fruits, dark green veggies little to no meat, no processed foods if I can help it. Hard when travelling. Thank you for anwersing my post.

  • Good news indeed! I hope you continue well and that your platelets never get lower.

  • I had another blood test and they went to 34000 but then I realized I just got rid of having a cold so that maybe why they went down. I just do not know if after your cold is done do they go back up or is that where they stay until they fall again.

  • biposy showed no cancer which is good, but of course nothing can be done for the platelet count. My count went down to 34,000 as of yesterday and that is a bit discouraging, but no bruising or bleeding and my PT, PTT and INR is still normal so clotting is not a factor yet. Had a few headaches this week but not too bad and they did not last long. Did some things to help without taking medication and they worked. Hope all is well with you and thank you for replying.

  • I think that platelets do whatever they want! I hope yours bounce back up soon. What did your doctor have to say?

  • Hi I also found out last year at that time my count was 33 and was a shock once you get used to it you learn to just get on with your life last week my count dropped to its lowest ever 29 and 3 days later was 66. I am not on any medication as I don't bleed I just bruise. This is a brilliant site it really helps having somebody that knows how you feel the people on it always reply so don't get depressed just do what we all do and learn to take it in your stride good luck with your results

  • Unless you are bleeding or bruising, is there a need for meds? The advice where I am is not to treat until the count is 10k or less if you are doing neither.

  • I am not taking any meds yet for my platelet count. I will have to wait and see what my Dr. say's I feel ok for the most part.

    Tired some times and I have had a few nagalating headaches but just used home remedies to get rid of them. I have not been able to exercise very much so I am sure that is not helping the situation any. I am not bleeding or bruising so that is good. Thank you for replying to me and hope all is well with you.

  • What do mean by" could not freeze the bone" for your bone marrow biopsy ? As a nurse I. Have assisted in many BM biopsys and have had this issue You have several medical issues, How old are you? if you don't mind me asking. A platelet count of 70K is great form, no bruising but I have excessive bleeding with tooth extraction which is controlled Hemabate. kyriak51

  • I am 63 years old. You can freeze skin but not bone. I was also told that it would hurt for just that reason but when the Dr. did mine I felt nothing and he asked me if I had many fractures I told him I broke my back years ago. He then went into another site and I felt a bit of pain and could feel the drilling process but it was not too bad as I guess I really do not have much. Anyway to make a long story short I got the results back and no cancer the pathologist said ITP. I was told about my liver and spleen in 2014 but that does not seem to bother the Dr. as nothing was done. My hematologist was not too worried about my count so far. Now my GP wants me on prednisone but I will not take that until my platelet count goes to 30,000 or lower. I am weaning myself off of pregabalin which she should never have put me on for it states that this drug is lyrica and is bad for lowering platelets.. Sometimes I think Dr.s should read up on meds before they pass them out. I feel ok so far no bruising or bleeding clotting factor still good as far as I know. Will have Dr. give another req. to check this again.

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