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TOPIC: Finally a Diagnosis ITP

Finally a Diagnosis ITP 2 years 1 month ago #58902

  • Maronese
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Hi Sandi, I've been off the forum for a while as I have been spending time at Dr's offices which really annoys me. I was finally supposedly diagnosed with what the internist said I have " mild ITP" she said that my ultrasound results came back and all they could find is a slightly enlarged spleen. I looked at her face and it was like she just had to say something. I'm fed up of seeing drs and finally this. I tried telling her about my excruciating pain in my joints and psoriasis which look horrible and painfull I have PPP and it hurts. She said not my dept go back to your GP. No, I see that or I understand. I just don't understand what mild ITP is. You either have ITP or you don't. Sandi, you know my platelet counts. I just felt like the Dr was upset because she had to tell me something and it wasn't what she was hoping. Anyhow did more bloodwork looking for H pylori now. I'm from Canada. Can someone reccomend a good clinic down in the US I can go to, to get answers. I have excruciating pain and can't take it anymore and now well I think it's mild ITP. I'm from Ontario Canada. Looking for closest clinic down south to get answers on ITP. Thanks, Maronese

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Finally a Diagnosis ITP 2 years 1 month ago #58908

  • Sandi
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Well, I would take a diagnosis of 'mild' ITP to be a good thing. To me, it would mean that you have lower than normal counts that do not require treatment and only monitoring is necessary. On the hematology end, she did what she could and you might have to accept it for what it is for now. It may never cause you any problems and as I've said before, your counts are good. Normal counts are not necessary for daily living as long as they are safe. I know you are stressed out about it and all I can say is that I would be fine and not concerned at all if I had your counts, in fact, at times I did. I don't know if that helps any, but I don't know what else to say.

Now you are left still looking for answers for the other symptoms which are definitely due to some other disorder. I'd stick with Rheumatology and keep pushing for answers. It can take time to get a diagnosis in this area since symptoms can appear long before blood work shows anything. It happened to me. It took a year and a half to get a Lupus diagnosis after my symptoms started. I totally understood why; I saw my labs and knew what they should look like for a diagnosis. Eventually the labs did go south and although I did get diagnosed, I wasn't happy about it. I don't think your GP will be much help to you. Everything goes by specialties these days.

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Finally a Diagnosis ITP 2 years 1 month ago #58909

  • Sandi
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P.S. Even if you took the word 'mild' out of there and we say that you have ITP, that won't change anything. There isn't anything that any Hemo would do for you at this point except monitor counts. Going to another Hemo probably isn't going to make any difference and you'd get the same conclusion, but maybe without the word 'mild'. That doesn't really matter.

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Finally a Diagnosis ITP 2 years 1 month ago #58913

  • Sandi
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The word 'mild' is often used to describe ITP.

Types of Immune Thrombocytopenia

The two types of ITP are acute (temporary or short-term) and chronic (long-lasting).

Acute ITP generally lasts less than 6 months. It mainly occurs in children—both boys and girls—and is the most common type of ITP. Acute ITP often occurs after a viral infection.

Chronic ITP lasts 6 months or longer and mostly affects adults. However, some teenagers and children do get this type of ITP. Chronic ITP affects women two to three times more often than men.

Treatment depends on the severity of bleeding and the platelet count. In mild cases, treatment may not be needed.

www.nhlbi.nih.gov/health/health-topics/topics/itp/

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Finally a Diagnosis ITP 2 years 1 month ago #58914

  • Sandi
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What is a low platelet count — Thrombocytopenia is defined as a platelet count below the lower limit of normal (ie, <150,000/microL [150 x 109/L] for adults). Degrees of thrombocytopenia can be further subdivided into mild (platelet count 100,000 to 150,000/microL), moderate (50,000 to 99,000/microL), and severe (<50,000/microL) [1]. Severe thrombocytopenia confers a greater risk of bleeding, but the correlation between platelet count and bleeding risk varies according to the underlying condition and may be unpredictable.

www.uptodate.com/contents/approach-to-the-adult-with-unexplained-thrombocytopenia

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Finally a Diagnosis ITP 2 years 1 month ago #58916

  • Sandi
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According to current guidelines for the management of adult ITP, patients with platelet numbers >50 × 109/l are usually not treated. The stable and moderate evolution of the thrombocytopenia in our patients confirms the validity of this approach. The fact that we did not observe the development of other autoimmune diseases in contrast to the small number of such cases noticed by Stasi et al. [1] might be related to the smaller size of our cohort and/or the shorter follow-up period. As these authors define ITP as a persistent platelet count of less than 100 × 109/l and not 150 × 109/l as we did, a direct comparison of the results might be difficult. Whether a patient with platelet counts of less than 150 × 109/l but more than 100 × 109/l is considered to have ITP or borderline thrombocytopenia is an academic question rather than a point of clinical importance, because the medical strategy is exactly the same (surveillance of platelet counts in the absence of any treatment). This holds true for patients with platelets between 50 × 109/l and 100 × 109/l that would be classified as ITP cases according to Stasi et al. [1]. Thus, it is not obvious why an additional clinical entity (borderline thrombocytopenia) should be created in addition to ITP.

journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.0030362

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Finally a Diagnosis ITP 2 years 1 month ago #58927

  • Maronese
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Hi Sandi,
Thanks for the info. I had read up on it also and I understand the disease much better however, as I mentioned regarding my counts of 149, 106, 137 and 139 and the diagnosis on Tuesday of "Mild ITP" I was thrown a curve in my opinion on Tuesday also. I am hoping that what I have concluded and based on my facts, I may be able to help others with the same issues I went through. So here goes and maybe you can either support or not support my facts and findings. When I first started having problems with my platelet numbers, I was on the drug "Humira" as I have severe Psoriasis and Psioriatic Arthritis. Just so I can hopefully backup what I am saying. While I was on Humira ( which the Dr's felt was probably not the root cause in my drop in platelet #s) my numbers were 149 and 106. When I was told to stop the "Humira" and went off it for one month, my number bounced to 137 on my first CBC. On my second CBC still being off the "Humira my number moved up slightly to 139. At this point I was told to go back on the " Humira" and my Dermatologist would monitor my CBC every two weeks at which point if the platelet numbers showed a drop in the established base number of 139 he would assess the drop and talk to the Hemo and decide whether I should go off it or not. I decided that I would not go back on the Humira and give my body more time to flush all of the Humira out of my system. I stayed off it another two weeks which brought me by coincidence to the appointment that I had scheduled for this Tuesday with my Hemo (she had done a full workup on me ultrasound and still had my last platelet # of 139). This is when she told me that I had mild ITP. At this point she sent me for a complete CBC given that there was one test Hpylori the lab didn't do previously) well today is Thursday and I received my results. I was shocked to see that my Platelet count was at 185,000 well within the normal range. I hadn't done anything different since my last appt with my Dermatologist which was to go back on the Humira and he would monitor the platelet #s every two weeks. As I said, I did not go back on the Humira. My conclusion is that the Humira and any Biologics contribute to drops in your Platelet #s. I will back this up as follows. When I was not on Humira there were no issues with my CBC. When I started on Humira and had been on it the Platelet #s started to drop. I've gone back two months and looked at my bloodwork when I started Humira and found the following trends in my platelet counts 202,187, 149, 106- stopped the Humira- 137, 139, 185. I am still off the Humira and will not go back on it as I believe that this is what caused my platelet numbers to drop. I am not a Dr or a researcher but based on what I have just shown up above I believe that Biologics can definitely contribute to misdiagnosed ITP. This was just my case however, I believe there is a correlation. What are your thoughts Sandi? Thanks, Maronese

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Finally a Diagnosis ITP 2 years 1 month ago #58931

  • Sandi
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Well, it's hard to make a positive correlation sometimes. It would seem as though Humira may have contributed to the drop in counts though and thrombocytopenia is probably a listed side effect of the drug. The thing is, Rituxan is also a biologic and is a well accepted ITP treatment, but it also lists thrombocytopenia as a side effect. Most drugs do, even antibiotics. You always have to weigh benefit vs risk with any drug and if Humira helped and only gave you slightly lower than normal counts, it could be well worth it to continue using it. That would be your decision. I don't believe that your ITP was misdiagnosed since you just got a diagnosis.

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Finally a Diagnosis ITP 2 years 1 month ago #59049

  • Maronese
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Hi Sandi: Thanks for responding as usual. I'm hoping that you may be able to answer my question. If anyone else would like to chime in, I would be happy to hear their answers. If you recall Sandi my last appt with my Hemo, I was diagnosed with mild ITP. I too was overwhelmed like Jay is at present.( I don't know how to get on to that discussion: can you help?) If you recall Sandi, I thought it was the Humira I was taking. So I went off it. My levels were always in a safe zone. While off the Humira my levels started at a low of 106 when it was first caught on a routine CBC and when I went off the Humira. I went for other CBC while off the Humira( to see if the first count of 106 was an error from the lab) and the counts jumped to 136 , 139. The day I was diagnosed with mild ITP, I told my Hemo I was really overwhelmed with the diagnosis. She did try to settle me down however, as with most people like Jay many things go through your mind. Here is where I need clarification. Sandi, if you recall I told you that after the diagnosis the same day my Hemo sent me for another CBC. Shockingly to me, my platelet count jumped to 186, which falls into the normal range. I assumed that I was in the clear and that it was the Humira that caused the low count of 106 when I first stopped the Humira to a high of 186 when I was still off the Humira and believed that it took some time to clear my system totally from the Humira. Well I now am overwhelmed again, because I remembered the two to three weeks prior, I had two cortisone injections into my knees as I have many medical issues. I am assuming that cortisone is cortisone and that's what made my number jump to 186? I tried putting the puzzle together and noted that when my numbers were at 136 and 139 I had not taken the cortisone injections it was soon after that, that I had the cortisone injections and later sent for a CBC and platelet count jumped to 186 forgetting about the cortisone injections I had been given for my knees. The question I have regards cortisone. Is CORTISONE for PAIN the same CORTISONE you take for ITP? If it is, that would more than likely have explained the jump in my platelet count to 186, if not then my platelet count would probably not have jumped and remained stable? Any help would be appreciated. Thanks, Maronese.

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Finally a Diagnosis ITP 2 years 1 month ago #59063

  • Sandi
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Please remember that I'm not a doctor. I doubt that the cortisone shots for your knees contributed to the rise in your counts. There is no way to know for sure though. Honestly, Maronese, it's best to try to not over-analyze changes in counts. You'll drive yourself crazy. Granted, your counts have jumped around a lot, from 106 to 186, but even your lowest count was still a very safe number. It's possible that your body is self-correcting and the mild ITP was an acute episode, possibly caused by Humira but maybe not. Time will tell.

My Hemo was once sick with a mild flu and during that time, his counts dropped into the 70's. They stayed there for a few weeks and eventually rebounded. He wasn't worried and didn't do anything about it. It happens often. Most people never even know it though because they don't have a CBC done. If you had not had a CBC, you wouldn't have known either. The point is that the count of 106 was caught by happenstance, not because something horrible happened (like bleeding). The count has caused no harm to you physically, but it has changed your emotional status because you are worrying about it. Your counts are fantastic right now as far as we know and this is great news! I just wish I could find the right words to reassure you that as of right now, there is nothing to worry about.

Do you know what your fear is if counts should drop? Maybe identifying that would help.

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