Not Treating at 2K Platelets

Hi everyone -
So I have had ITP for quite some time now and been through lots of treatments and lots of steroids. I dipped to 1K earlier this year and got on steroids and that didn't do much but we were looking for a longer term option (doc and I). Miraculously my platelets went up to 154K for the first time ever (I had taken some homeopathic remedies) the day I was scheduled for Rituxan but they gave me the Rituxan anyway and only saw the labs later. They then thought I was in a remission.

Platelets bounced around for the upcoming weeks and settled around 54K. I have been off all treatment for about 3 months now and was feeling great. I had symptoms this morning again and went to the lab and platelets are 1K or 2K, the repeat test said 2K. My doc had the nurse call me to let me know she didn't want to keep putting me on steroids especially if I don't have any active bleeding. She said to only go to the pharmacy and get steroids if I have bleeding that will not stop. This is a first for me. Anytime I dip low, I either get IVIG or Steroids but my hematologist wants me to consider Nplate as a long term solution and to watch and wait this time. I don't know how I feel at this point. She is very conservative but she goes more with my symptoms than the platelet count. I am really torn between taking steroids or just watching and waiting

I am not a bleeder but has anyone just watched and waited with a platelet count this low?

I wouldn't take steroids and I wouldn't wait and see either. Why aren't you considering the homeopathic remedies again? Living with counts that low is asking for major life altering troubles. It isn't a question of if but of when. I hope you realize there is no statistical difference between 1K and 2K.

I like conservative, but I have a problem with "only go to the pharmacy and get steroids if you have bleeding that will not stop". Huh? So you're bleeding from somewhere in your body for a period of time, it won't stop, and you make a trip to the pharmacy, still bleeding, and pick up the steroids. Then you go home and take them, still bleeding, and wait. Wait for what? Steroids don't stop bleeding instantly. Unstoppable bleeding should be an ER visit. What kind of advice is that?

You know your body better than anyone and waiting a day or two might be fine. If the symptoms increase (more bruises and petechiae), you should consider getting help. If you don't want to go that route, go back to the homeopathy method and hope for fast results.

I am preparing my homeopathic solution as I speak but it is hit or miss but has worked before. I am just beyond fustrated

garylouisville wrote: I wouldn't take steroids and I wouldn't wait and see either. Why aren't you considering the homeopathic remedies again? Living with counts that low is asking for major life altering troubles. It isn't a question of if but of when. I hope you realize there is no statistical difference between 1K and 2K.

I agree Sandy. It sounded strange

Sandi wrote: I like conservative, but I have a problem with "only go to the pharmacy and get steroids if you have bleeding that will not stop". Huh? So you're bleeding from somewhere in your body for a period of time, it won't stop, and you make a trip to the pharmacy, still bleeding, and pick up the steroids. Then you go home and take them, still bleeding, and wait. Wait for what? Steroids don't stop bleeding instantly. Unstoppable bleeding should be an ER visit. What kind of advice is that?

You know your body better than anyone and waiting a day or two might be fine. If the symptoms increase (more bruises and petechiae), you should consider getting help. If you don't want to go that route, go back to the homeopathy method and hope for fast results.

I'd do Nplate. Indeed I did do Nplate and got into remission after a while.

Obtaining steroids to have on hand in case of unstoppable bleeding is truly bizarre advice.

My counts were bouncing all around even with continuous steroid use. Each time they dipped below 20, the symptoms were worse than the time before.
I chose NPlate treatment, which I'm still taking. It works 80% of the time with no to very minimal side effects.
If homeopathy doesn't help this time, the NPlate would be a good option, IMO.

Ann, how quickly did you get into remission? What was your count history before? Any bizarre side effects?

Please can you let me know how the process with NPlate was for you? How long have you been on it?

midwest6708 wrote: Obtaining steroids to have on hand in case of unstoppable bleeding is truly bizarre advice.

My counts were bouncing all around even with continuous steroid use. Each time they dipped below 20, the symptoms were worse than the time before.
I chose NPlate treatment, which I'm still taking. It works 80% of the time with no to very minimal side effects.
If homeopathy doesn't help this time, the NPlate would be a good option, IMO.

I was on Nplate for 3 years but some others have got into remission far more quickly. Prior to Nplate I had counts of 1 and 2 regularly and had treated with many different treatmets (IVIG, prednisolone, WinRho, mycophenolate, azathioprine, dexamethasone). I had no side effects at all. I was able to self inject at home and found it a very easy option. I'm not afraid of low counts but I would always treat at a count of under 10 and will again if ever it was necessary.

That's really crazy a doctor would say that to someone with a count that low. That's an extremely dangerous way to live. Have you tried Promacta? I tried it years ago and went into a remission for a couple of years. I just tried it again and it didn't work this time. My count dips from high to 1K very quickly. I just finished 4 rounds of Rituxan so I'm still waiting to see if it worked...Does IVIG work for you? I would see if they could give you a treatment of that until you can figure out some better options. My doctor would never not treat at the low of a count. Maybe go for a 2nd opinion.

Wishing you all the best! Be careful.

Hi, yes all Doctors I have seen prior to moving here a year ago would never even let me go home with counts that low. I don't mind conservative docs but this is too conservative for me. I am taking the prednisone anyway and seeking a second opinion

DJM wrote: That's really crazy a doctor would say that to someone with a count that low. That's an extremely dangerous way to live. Have you tried Promacta? I tried it years ago and went into a remission for a couple of years. I just tried it again and it didn't work this time. My count dips from high to 1K very quickly. I just finished 4 rounds of Rituxan so I'm still waiting to see if it worked...Does IVIG work for you? I would see if they could give you a treatment of that until you can figure out some better options. My doctor would never not treat at the low of a count. Maybe go for a 2nd opinion.

Wishing you all the best! Be careful.

I was between 0-5 for 4 months and my treatments were Prednisone, IVIG, Dapsone, Cyclosporine, Dexamethasone, Rituximab along with Tranexamic Acid - all to no effect. I started on NPlate and after 5 weeks my count went to 33, then into the 100's and after another 4 months my immune system just suddenly returned to normal - next week I will have been in remission for 12 months. Needless to say I am a huge fan of NPlate but understand that we all react differently to it as can be seen from Ann and Janet's experiences.

I started on Nplate one year ago.

I've had a bumpy time of it. The recommended target count to maintain is around 50k. My count has been too high most of that time (between 100 and 800), and it dipped below 10k about 10 times. It was in the target zone only 5 times during the entire year.

With Sandi's encouragement, I took it on myself to consult an NPlate expert (which my MD is not) and discovered ways to achieve stability that we haven't been using... Mainly, to discontinue prednisone and never skip a shot for any reason, even though the prescribing info says to if the count goes above 400.

Won't know for sure what will happen until I can wean off the prednisone; but I'm confident NPlate will work more consistently when that happens.

Is it a pill or an injection or put under the skin? I think nplate and promacta may be different I always gotten them mixed up

Robert1959 wrote: I was between 0-5 for 4 months and my treatments were Prednisone, IVIG, Dapsone, Cyclosporine, Dexamethasone, Rituximab along with Tranexamic Acid - all to no effect. I started on NPlate and after 5 weeks my count went to 33, then into the 100's and after another 4 months my immune system just suddenly returned to normal - next week I will have been in remission for 12 months. Needless to say I am a huge fan of NPlate but understand that we all react differently to it as can be seen from Ann and Janet's experiences.

NPlate is an injection whereas Promacta is a pill. The quantity of NPlate is calculated on your weight in kilograms and the dose can be very small. For me a Level 1 dose was 1 microgram x 90kgs = 90 micrograms. A level 2 dose is 2 micrograms x 90kgs = 180 micrograms, etc, etc. If you then take the total micrograms and multiply it by 0.002 it gives you the injection volume in mls. So 180mgs x 0.002 = 0.36mls which is a tiny amount of amount of fluid. It is a very potent treatment and the maximum allowable dose is a Level 10. The most I had was a Level 8 dose but once it took effect I was reduced down to Level 2 and then would only have every few weeks as we juggled my counts.

Janet - you are really having a tough time of it. I finished tapering down off Prednisone halfway through my NPlate treatment but I am not sure if that had any effect. If you have reached 800 you will know how potent NPlate is - what caused you to reach this count? I was once given a Level 6 dose at 396 which in hindsight was too much as I hit 1,084 and stayed there for 2 weeks before dropping back to 400 without any issues.