TOPIC:

It's been awhile since I have posted to this forum. I have not had to see my hemotologist for about 7 years. I have been managing my platelets fairly well with eating right and resting when I over do it. Well, I found out recently that even though I'm doing ok with platelets ranging from 50,000 - 80,000, I should still visit my hemotologist every few months to get my counts checked. I've always had heavy menstrual periods, however; this last one I had, I bled for over two weeks, I literally felt like I lost all of my blood, I ended up in the hospital, I found out has a cysts that ruptured, I did not have much pain with this and thought I was having a heavy period. I was given a shot in the arm to stop the menstrual bleeding. It kind of worked. I was still bleeding when I saw my gyno the next day. My gyno scraped my cervix twice to help stop the bleeding as well and put me on a low dose birth control pill. I'm very mad at myself for not taking care of this years ago. I just kept putting it off, knowing that my period are heavy. Really bad idea. I want to be around for my grandkids, I have a 4 granddaughter and 11 year old grandson. They are my world and need their nana around more than ever! I also have 4 grown kids.

My blood counts are very low blood counts, Red Blood Cell Count 3.31 x10(12)/L (Low), Hemoglobin 9.7 g/dL (Low), Hematocrit 29 % (Low), Eosinophils, Absolute Count 1.5 x10(9)/L (High), Urea Nitrogen 7 mg/dL (Low), Iron Total 22 mcg/dL (Low), It was pretty scary and a wake-up call for me to take my disease more seriously. I feel horrible!!!! Worst fatigue ever even though my platelets went up to 104,000 probably because of the shot of decadron I was administered in the hospital. I just had an iron infusion last Wednesday, my body seemed to take it ok, and next Wednesday I will get another iron infusion. I also went to see my gynocologist who has put me on a low dose birth control pill to hopefully lighten my bleeding. I'm actually scared to have a period, my body needs to recover from this last loss of blood.

I'm thinking about trying another dose of Rituxan. I tried it 7 years ago, the medication did raise my platelets however; they went back down again after a few weeks which was very frustrating for me.

I'm sorry to hear about your ruptured cyst and bad bleed. My ITP manifests itself in terrible monthly bleeding as well. I got everything checked and I don't have cysts/fibroids/etc., but just really heavy flow.

Regarding treating your ITP, having counts in the range you mentioned 50,000 - 80,000 is not really a level that you need to do any treatment. Most hematologists will just do periodic lab work at those levels and observe. It sounds like your gynecological issue of the cyst caused the recent blood loss more than your platelet count.

Since your current count is 104,000, I wouldn't be thinking ahead to doing another round of rituxan. It's a very strong drug with significant side effects on your immune system, even if you tolerated it well in the past. If you don't have counts that are averaging below 30,000, I wouldn't think about treating your ITP at all, frankly. Don't assume that because you got dex and you are currently 104,000 that this automatically means that you will crash down low and have bleeding problems. Follow up with blood work at whatever frequency your hematologist thinks is appropriate, and work on building up your iron stores and doing the iron infusions. Those will help a lot with your physical exhaustion and other symptoms from the loss of blood. Hopefully the resolution of your gynecological problem will result in better cycles ahead!

I agree. Heavy bleeding can be caused by gynecological issues. Don't beat yourself up for not doing anything sooner because counts of 50k to 80k are above treatment level and there is really nothing that should have been done. The low dose birth control might just keep the bleeding under control. My daughter had cysts like that years ago and had heavy bleeding for a long time. She did not have ITP.

Thank you! I was thinking the same thing about the Rituxan. My hemotologist suggested it when my platelets were at 32,000 when I get them checked again and they are not at 32,000, then I willl just keep doing what I'm doing. The less medicine the better

Thank you!

Hi Sandy,
I'm back!!! I've been taking a low dose birth control which has really slowed down my menstrual bleeding! Eek! My iron levels are normal now however; my platelets count was 27K on February 28, I'm getting my labs done again in June and have another appointment with my hematologist in September. I have lost 25lbs, hoping my eating well, exercising, and weight loss has raised my platelets.

I'm glad that things seem to be better other than the platelets. Thanks for checking in!