I was diagnosed with ITP when I was twelve years old, I am now 20, with chronic ITP that seems to be going through a stable period! I was put on the mini pill when I was 14, which helped to make my periods lighter as I had been admitted to hospital for heavy periods because of the ITP. I also used to take tranexamic acid, although as i’ve gotten older my periods are much more manageable. I came off of the pill a few years ago but since becoming regularly sexually active again I have gone back on it. However, this time it is making me very agitated, stressed and just generally making my life a bit difficult. I really want to be on something that is not hormonal. When I visited the family planning clinic the doctor told me I couldn’t have the IUD Coil (the non hormonal copper one) because it produces heavy bleeding. My haematologist however has said that it shouldn’t have an impact on my platelets and she didn’t seem to be worried about the bleeding. So, I have booked in to have the copper coil put in, in 10 days. But I’m a bit worried about if I am doing the right thing because i’ve received mixed messages. I just know I can’t be on something hormonal anymore so this seems to be my only option. I wondered if anyone had any experience with this type of issue or if anyone with ITP has an IUD coil.
My last platelet count was I think around 70.
I don't have an answer to this, but when I'm really unsure about something I ask several doctors. Well, it seems your appointment is in 2 days, good luck with it, if you do it.
I just started wondering about Eltrombopag and birth control pills due to the risk of thrombosis, have you or anybody tried that? I need hormones against ovarian cysts, but now I keep getting a stabbing pain in my chest and am short of breath sometimes. I'll go to see my doctor in a couple weeks.
Thank you for your reply.
I haven’t had the appointment as it was cancelled with all that’s going on with the corona virus. So I have a bit more time to think!
I only have one haematologist to ask, and a lot of the time it seems they don’t know much about my condition. My body seems to be unpredictable with its reactions. How do people manage to ask multiple doctors for their opinion?
Unfortunately I haven’t tried Eltrombopag. I wondered if you had had any Immunoglobulin infusions? Because I have and since my last one I have had flare ups of chest pain that i’ve been told is Costal Chondritis caused from my infusions. I’ve had this pain for over a year now but it comes and goes and can feel very painful in my ribs at times.
I hope this helps!
Hi Hal, I didn't see the response earlier. I had been googling my symptoms a bit more and have to agree, at least the pain that I had since I got a too high dose of NPlate sounds like a clot (sharp pain, worse when breathing in, and I haven't stopped coughing since then, which is what now... a couple months?). I did however have chest pain and pain in my arm that _seemed_ similar in November or December after I got a vaccine... so I don't know if that is related and if it is a clot...
My current doctors said they don't know. I'll see my hematologist again today, I sometimes leave out details or say it's not so bad, maybe that's what happened. Though at the moment it is really not nearly as bad as on the last meds. I wonder what would be best to do if it was indeed a clot. It seems like it's at least not getting worse on 25mg Revolade, but if it did I couldn't just quit it either... Well... update maybe later if I have some new info. Spine really hurts sometimes too, sure maybe because of more platelet production, but I saw on several sites one should contact their doctor immediately if bone or muscle pain occurs...
No I haven't had immunoglobolins yet... I relate, my last doctor may have known about the condition, but not much about medication and didn't bother to look it up either. Manage to ask multiple docs? I don't remember how it's in the UK, though I did live there briefly. In Germany I just go to a different doctor if I feel something isn't right or I don't understand something. I don't think you can change them countless times, but something like every quarter year, unless you have a significant reason, then you can earlier. Second, third opinions don't count as changing doctors that's also fine. I've recently talked to a few friends (with other conditions) but we agreed (to my surprise) that younger doctors can be a good choice as they often know more at least about the newest kinds of treatments. When I lived in the US I didn't have as much of a choice, but then I figured the doctors who I already knew to be great would sometimes recommend equally good doctors, even in totally unrelated fields.
I had a copper IUD for 10 years with counts stable in the 45-65 range. I did have rather heavy periods but also wanted a non hormonal option and decided the trade off was worth it for me. No concerns from my hemo.
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