Nothing seems to be working

I was diagnosed with ITP and CLL in September 2016. I was admitted to the hospital with a platelet count of 6. I was given IVIG and prednisone injections in the hospital for a week with no change in the country. Since then I have taken prednisone 60 mg for two weeks then a 4 week treatment of Rituxan. Next a 30 day treatment with 50mg Promacta and have just started 75mg Promacta. My Dr has ordered N plate injections to start in two weeks. After all this the highest my platelet count has been is the 6 that I was admitted with in September. My platlets count is always 3,4, or 5. Has anybody else had a similar experience?
Thanks,
Brian

Wow, that's a lot of treatments in a short time! Rituxan can take a while to work. For me, I did it in 2011 and it put my counts up right away. Haven't done the Promacta or the NPlate. I think the doctor is pushing too many treatments on you. He (or she) should be giving the Rituxan time. I'm sure someone else will chime in. Do you have bleeding symptoms if you don't treat?

Good luck!

I was told that the Rituxan can take up to 12 weeks to see if it is going to be effective.

Goodness what cocktail, how will the effectiveness of the rituximab be known if also being supplemented by other therapies?
I would be sorely inclined to ask for a second opinion

Completely agree with all these good replies. You are going to need to do some of your own research. I find that most doctors do not know much about ITP and we have to do our own research to help them out.

CindyL wrote: Wow, that's a lot of treatments in a short time! Rituxan can take a while to work. For me, I did it in 2011 and it put my counts up right away. Haven't done the Promacta or the NPlate. I think the doctor is pushing too many treatments on you. He (or she) should be giving the Rituxan time. I'm sure someone else will chime in. Do you have bleeding symptoms if you don't treat?

Good luck!

Trouble is - a relatively new patient presenting with counts in single figures - IVIG the usual rescue remedey not working - the haemotologist has got to try something/everything to get the patient to safe levels.

On a lighter note - just because Promacta failed does not mean Nplate won't work - they work slightly differently.

I am suprised the Haemotologist has not tried some of the stronger immunosuppresants like Azathioprine or MMF.

There are others here like myself where nothing appears to work - so don't lose heart.

Bholm,

I note that you were given prednisone in the hospital -- but it didn't help your counts -- and now you are taking 60 mg per day of prednisone. It is possible that you are one of the rare people who lack the enzyme to convert prednisone into prednisolone, which is the active form. If this is so, then taking prednisolone instead of prednisone might make a big difference. IF you are now taking 60mg prednisone without the awful side effects -- increased appetite, jitteriness, difficulty sleeping -- you might ask your doctor about switching.

This topic was previously discussed here:
pdsa.org/forum-sp-534/7-treatment-general/29345-unresponsive-to-prednisone.html
There is a link to a journal article that might be helpful in explaining this to your hematolgist.

Brian, is it possible that CLL is preventing platelets being produced ? If so, seems like neither steroids or IVIG will do much. Hoping Promacta/Nplate works well, soon...

I think it may well be related to the CLL here is an abstract with a link to full article

www.bloodjournal.org/content/111/3/1110.long?sso-checked=true

Impact of immune thrombocytopenia on the clinical course of chronic lymphocytic leukaemia.

Visco C1, Ruggeri M, Laura Evangelista M, Stasi R, Zanotti R, Giaretta I, Ambrosetti A, Madeo D, Pizzolo G, Rodeghiero F.
Author information
Abstract
The prevalence, clinical characteristics, and prognostic significance of immune thrombocytopenia (IT) in patients with chronic lymphocytic leukemia (CLL) have not been clearly determined. To clarify this, we retrospectively analyzed 1278 consecutive newly diagnosed patients with CLL. Criteria for IT diagnosis included the following: rapid (< 2 weeks) and severe fall (half of the initial level and below 100 x 10(9)/L) in platelet count; normal or augmented megakaryocytes in bone marrow; no or limited (not palpable) splenomegaly; no cytotoxic treatment in the preceding month. Sixty-four patients (5%) were diagnosed with IT. The median time to IT from CLL diagnosis was 13 months (range, 0-81 months), and median platelet count at IT diagnosis was 14 x 10(9)/L (range, 1-71 x 10(9)/L). Fifty-six of the 64 patients (87%) received treatment for IT. The probability of responding to treatment for IT was significantly higher for patients receiving chemotherapy with or without steroids than for patients treated with intravenous immunoglobulins with or without steroids (P = .01). The development of IT was significantly associated with unmutated IgVh, a positive direct antiglobulin test, and the occurrence of autoimmune hemolytic anemia. Patients with CLL and IT had poorer survival than other patients with CLL (5-year overall survival 64% vs 82%, P < .001), and this effect was independent from common clinical prognostic variables.

Just what I was about to say. Having CLL in addition to ITP is a much different scenario than just having ITP. None of us here have any experience with CLL, therefore, it is impossible to give suggestions.

I hope you can get your counts up soon!

Thanks for all your input. just to clarify, I am not on all these medications simultaneously, presently I am just taking 75 mg Promacta. I go in for a CBC next Thursday and since neither my doctor or me think the 75 mg dose will show any improvement based on the fact hat 30 days of 50 mg moved my count from 5 to 4, he has already ordered N plate treatment to start on Thursday. I also believe the CLL / ITP tag team has a lot to do with the lack of progress. I will probably be getting another bone marrow biopsy in the near future, we will see if that can provide any answers.
Thanks again to everybody

Good luck. Maybe you will have luck with the increased dose of Promacta. I've seen it happen.