After 2 years of 50k+ counts, today 28k + strong migraine + hospital

So, it's been fun that ITP was keeping things constant at around 68k, yesterday my wife complained about a strong headache, she took some pain meds, and tried to sleep it off, but a day after the headache is even stronger so we had a doctor come over, and he referred us to the hospital.

So we are now at the ER, she had a CT scan which showed no problems, and so they gave her a pill, a shot in the butt, and there is something dripping too.

I know they gave her something against migraine , and something against pain. And now she is sleeping.

Oh and they did a CBC, plt at 28k. No one offered to treat the low numbers, personally I don't want to treat as there are no visible ITP symptoms, unless the migraine/headache are related.

Just venting mainly. Also a little worried, and also we now have a 2 year old which makes everything a lot more complicated.

I've heard that there is a mild flu with sinus pressure and headache going around. I missed it. Do you suppose that is the problem?

No fever, but she does have the chills so it might be possible. Cloud that also lower the plt count?

PS.

We were released at 01:30AM after an eye doctor exam for bleeds, and after the drugs kicked in.

Could the flu be the cause of lower counts? Yes, most definitely. First hand knowledge of that - but it doesn't happen in every case of the flu.

Good news, My wife is feeling a lot better, counts are up to 70K without any treatment!

I'm so happy with that as we are now dealing with Severe atopic dermatitis on our toddler's face... at least one less thing to worry about now.

Thanks for the support everyone, hope you all find good news as well.

Thanks for the follow up dsafina. 70 sounds like a good number. Hope things continue to go well.

I am a new ITP patient to this forum, but when my platelets get low, I get migraines. My CBC has changed over time with my current situation of RBC number increasing when platelet number decreases. My RBC number goes above normal values at these times. So, platelets down, RBCs up, BP up, and headaches. My hematologist has been saying, "You're just dehydrated (when RBCs are high)." Wrong. I drink probably 96 fluid ounces of water daily. Recent bone marrow biopsy shows hypercellular marrow with trilineage hematopoeisis which means my marrow is abnormal for all three blood lines. Finally got the answer I was looking for. Anyway, pay close attention to your CBC numbers. I can't believe I'm the only ITP patient with high RBCs and low platelets. By the way, look at the numbers yourself. Don't rely on the doctor. When my RBCs are above normal, my doctor isn't concerned and doesn't even mention it. So, this leads me to my current question: I'm looking for a hematologist for a second opinion on my ITP in the Southern California area--someone who sees lots of ITP patients and has an expertise in ITP. I live in Ventura. Thank you.

Has your doctor done a Coombs test? Normally when the platelets and RBC's see-saw like that, Evans Syndrome is a possibility.

No, my doctor hasn't performed that test. Next time I see her, I'll talk to her about it. It took me over a year to get a bone marrow biopsy. Every test I've had, I had to really fight for. I think my doctor is a bit ho hum about my ITP. The PA checked me for polycythemia vera (genetic condition that causes high RBC number) which I don't have. Unfortunately, my bone marrow biopsy came back with mild fibrosis, so the over-proliferation process is causing mild scarring. Not a good thing. My doctor didn't even talk to me about the fibrosis or go over the biopsy report. Do you mind me asking what treatment was successful for you? I see you're in remission for ITP, but now have Lupus. My autoimmune condition started with Grave's disease (actually possibly colitis--had rectal bleeding back in 2001 after my second pregnancy--colonoscopy revealed the colitis which resolved, but may have been the start of my wacky immune system). Also, no leads on an excellent ITP doctor in Southern California? I really need the second opinion from someone I can trust especially with my bone marrow scarring, even if it is mild. Thank you very much for your reply. It was wonderful to get feedback!

Hi~ I see from your story why you really want a second opinion! I think you can find someone who listens, cares and is more thorough. I've had 2 hematologists before I found the one I'm with now. He's great and so involved, and he encourages me to make my own decisions re treatment. I'm in Northern California, so can't give you a referral. But I just did a quick Google search and for what its worth I kind of like this guy. Just my intuition- hes kind of young but sometimes young doctors are enthusiastic about solving a mystery. Good luck with finding the perfect match!

www.uclahealth.org/joshua-rosenberg

You can us this to search for a doctor. www.pdsa.org/resources/find-an-itp-doctor.html I'd look for a second opinion also if I were you.

Rituxan was the last treatment that I had. I don't credit it for the long-term remission. I think it gave me a short-term remission and in that time, ITP resolved. Logically, due to the way that it works, it should not provide a long remission. As soon as the ITP remission began, I was diagnosed with Lupus.

My daughter has Graves. It can be a struggle.

Thank you very much. That was very sweet of you to go the extra mile. That's what I love about the PDSA group chat! I did notice this group in Ventura affiliated with UCLA Health. I need to call. It appears my insurance will cover a consultation with Dr. Rosenberg. Since you responded, what have you found works well for your ITP? I'm scared to death to try rituximab. My hematologist says the effect is transitory, lasting about 6 weeks. Since my Winrho is transitory as well, I'm not sure I see the benefit. I can usually go 2-3 months on a Winrho treatment. Thanks again!

Thank you, Sandi. Wow, Rituxan seemed to change something, or maybe just a coincidence. Since it works on the immune system and the B cells (producing antibodies) and maybe T cells (regulating B cell activity), I'm reluctant to muck around with that deep level of the body's immune system. On the other hand, I think my immune system is already messed up and what if Rituxan somehow re-sets my system. My hematologist says she doesn't see this happening in her patients--always transitory. I have no idea how many patients she sees for ITP and percentages of patients on various treatments. Maybe I'll ask.... Ok, all of this is helpful. Take care, Sandi. Hope your daughter navigates the Graves. What worked for me was an incredible endocrinologist who prescribed three years of anti-thyroid medication. When my thyroid levels went too low, she supplemented with Synthroid. I did not want to have a thyroidectomy or radiation. I did the research though and found articles about people in Japan who do this to avoid the radiation risks. My doctor followed their protocol and it worked. Have a great day!

SSeiler:
My daughter and I also researched Graves and avoided the radiation. She also tried to avoid thyroidectomy, but after seven years on Methimazole, she began to have side effects and had her thyroid out. She wasn't able to achieve remission. She really tried. I always saw the thyroidectomy as the Graves version of an ITP splenectomy. She has always had Graves symptoms, even on the meds; it has never been easy to control. It still isn't, and she really has to watch her stress levels and diet to keep it under control. She has mild TED.

Rituxan usually lasts longer than six weeks. The average, according to studies, is one year. That is exactly how long it lasted for me the first round that I had. It either works or it doesn't and if it does, it can give a good period of time without treatment. I have never seen it work for six weeks only.

If you are able to manage ITP with only Win-Rho a few times a year, why not stick with that? There were several people here in the past who did quite well doing that, and eventually achieved remission. Few doctors will even use Win-Rho any more because of the black box warning and new protocol, but if it's worked well for you, why change it? I'd choose Win-Rho over Rituxan any day. I tried it six times years ago, but didn't get any platelet rise at all.

Hey Sandi,
I'm sorry to hear your daughter's trials and tribulations with trying to manage Grave's. Since the thyroid function affects virtually every part of the body, It's so important to manage as well as you can. I feel bad for her because I know how horrible the hyperthyroid state is. As far as the Winrho goes, it has a modest effect on my platelets. When I get to 15,000 to 25,000, I do a treatment and my level never goes above 50,000. The time period before I need another Winrho has shortened over the years and now is usually two months. Since my bone marrow has fibrosis, this is signalling to me that the Winrho is not working well and my bone marrow is furiously struggling to keep up. The fibrosis is what is prompting me to get a second opinion and possibly try another regimen. I would love to experience remission, but honestly I've had ITP for 9-10 years now and I've pretty much given up hope. If the Rituxan gives me a year, I think my bone marrow would not scar as much. Did you have any side effects from the Rituxan? What are the typical side effects people on the PDSA report? Anything long term such as suppressed immune system and infection? Thanks for your continued help!

Yes, I did have side effects from Rituxan. I had serum sickness which is rare. I had it twice because the first time, I was misdiagnosed by an ER doctor who told me that I had a virus. I used Rituxan a year later and got serum sickness again. It is horrible to go through, but resolves in a few days.

I don't know if your fibrosis is caused by your bone marrow trying to keep up. Nearly everyone with ITP has that problem, but they don't have fibrosis.

Sorry - I'm having trouble posting: This is just a test!!