Whether to treat at counts 40

It has been long since I posted any or even visited this site.

I got diagnosed with adult ITP 2.5 years ago at the age 52. Tried Nplate first and got the number up to 70 ~100 with the lowest dose. I was on Nplate for 4 months and then switched to Promacta due to its convenience on travel. I stayed on Promacta little over one and half years at the dose 12.5 mg. My number stayed between 50~80 until last October. It was 33 but I assumed it was due to cold. One of the side effect of Promacta was nausea for about an year then disappeared. But I started having joint problem in my hands and feet, more on hands. I am 54 so too early to have all the stiffness I have. I wondered if it was due to the Promacta so Jan 3, when I met my hemo, I suggested going back to Nplate and he accepted. The count was 40 on Jan 3. That is when I stopped 12.5 mg Promacta all together. I wanted to give some baseline to Nplate treatment. So no Promacta for 12 days. Today, Jan 15, I went to the hospital to start Nplate and got the platelet number at 38. It is possible that Promacta might have stopped working since last fall. The number around 40 might be my new baseline without any treatment (I went down to 10 without treatment 2.5 years ago). At this number of between 33 and 40, I do not have any low platelet symptoms. I used to have gum bleeding during flossing even with count of 70, or 90. Last 12 days, I noticed that my gum does not bleed while flossing. I felt odd so I was kind of guessing that my number might not be that low even without Promacta. It turned out to be true.

My dilemma now is whether I want any treatment. I moved my first Nplate shot to this Friday. My doctor prefers treatment.

Any thought or suggestions?

It's always best to try to go without treatment if possible. You can get a few counts done before making any decisions on whether to treat or not. Your body, your decision. If you are comfortable with counts in the 30's or 40's. hold off on treating until counts get to a level that you are not comfortable with. That's my 2 cents.

Sandi. Thank you so much for your thoughtful suggestion. That is exactly what I wanted to hear. I am very surprised how my body has been adjusted with low counts. Promacta gave me few side effects (joint problem and also blurred vision) but it may have raised my low to this safe level. I will be restarting gluten free as the gluten free was able to raise my counts by about 20 before (when I was in 70 to 90 range, the effect was not worth of the pain of not being able to eat bread). But now, if I can get the count up to 60, that will be my wow moment. I am so thankful that I could get this second opinion and support from you. I will keep posted.

Forever21, your story reminds me a lot of user 'jayinchicago' except you respond to Promacta. He too is very sensitive to the TPO agonists. Also like you, seems to be limited to / stuck at a partial remission count. The good part is his counts can stay close to his partial remission count for many weeks without Nplate treatment. The bad part is that he continues to need treatment. On the other hand, others like 'emilyk' seem to maintain a partial remission count without any treatment for years at a time.

Sounds to me like it would be worth it to see if you can maintain counts for a few weeks, or a few years, without treatment.

It will be really interesting to see if you can double that count by going gluten free.

I certainly wouldn't treat if I could hold my count above 30.

Another vote for no treatment. If you don't have symptoms, I would definitely not treat. It doesn't sound like you are sky diving or doing anything particularly high risk for which you need a higher count. Anything above 30 is safe for normal daily living.

I currently treat with promacta, and have also found that the medication makes me less "symptomatic," even at lower counts. With my treatment I usually end up with counts around 40, and don't increase my dosage because that is definitely good enough. For me the name of the game is to do the absolute minimum possible intervention and treatment to achieve the lowest end of safe counts.

Congratulations on being able to get off of Promacta and maintain a safe number, that is fabulous

Thank you all for the unanimous vote. I could not have made this decision without your support.

Glad we could help. Good luck and let us know how it goes!

I surely will!! Thanks.

I agree with everyone. If I could hold counts above 20 I would not treat- 30 would be even better! My two hematologists in the San Francisco area also will "watch and wait" when counts are above 30 with no symptoms.

It would be great to know why some people have symptoms and some do not. Also what Promacta is doing to reduce bleeding symptoms. I feel lucky that I don't usually have anything much for symptoms- today count is 16 with zero symptoms. I'm on weekly Nplate. I take Vit C 1000mg plus some B vits and D. I don't know if it helps strengthen blood vessels but I've heard that it does. Recently heard it again from wound care doctor/nurses at a hospital in our area. They advised Vit C for healing.

Thank you for sharing the information, posymint. It makes me feel so comfortable with my decision. Relieved. Feeling positive will be extra helpful. I have been loaded with Vit C lately (minimum 2 grams each day and go up to 5 grams if I sense something coming in). No wonder why I do not show any symptoms. I am planning to add extra mega dose of probiotics together with prebiotic fibers on top of going gluten free diet.. I cannot wait to get the lab work done Jan 26. Thank you all.

Yesterday’s count was 26. Disappointed. I did everything I could on natural remedies (gluten free, mega dose of probiotics...). Might be too short to show any impact. However, I wanted to wait for another week before starting another long journey with Nplate. If counts go down below 20 next week, I will go ahead with Nplate. A month ago, my insurance company approved 3 Nplate shots in the infusion room at the hospital and then they will start sending a home care nurse to my house for the shot. I guess the cost of using infusion room was the factor in this new idea. Ummmmm.... how will this go? I can go to the hospital for blood and come back home and wait for a nurse? I asked if I can get a shot in primary care clinic (less charge to insurance?) or even self injection. No to self injection idea but they are checking on the possibility of getting the shot at the doctors office instead of infusion room.

Shame about the no self injection. Standard practice in the UK as far as I'm aware . Certainly is where I live.

Yeah I don't know why they won't allow that already. It would surely keep costs down.