Confused and frightened

Hi all, my husband is newly diagnosed with ITP. Started a few weeks ago with platelets at 62, dropping by 10 each week until was 32 and hematologist put him on decadron 40mg a day for 4 days. Didn't help platelets now 27. Dr says can't give other meds by infusion because of other severe health issues. She ordered promacta but after insurance our copay is $2300. Per month.trying for a grant which would pay for 2 months but lady at specialist pharmacy says we probably make too much money, which isn't true, we're comfortable but are far from living lavishly. My husband other issues that make hard to treat are stage IV kidney failure, cardiac failure,severe mitral valve regurgitation, insulin dependent diabetes, primary pulmonary hypertension. There is more but not so life threatening. So what should we be doing. Thankfully splenectomy not an option as he's not a safe candidate for anesthesia. Thanks for listening, guess I need to vent.

Hello. I'm glad you found us. How old is your husband?

It's true that your husbands treatment options are limited, but there's no reason to panic yet. His counts are low, but not critically. How are his symptoms? Any bleeding or severe bruising?

Promacta can be expensive and that is a problem. There is another drug that is similar called N-Plate; maybe that one will have a lower co-pay. You could ask about that. IVIG is another possible option. It's usually temporary, but can work as a good rescue drug if counts go too low. It shouldn't interfere with his other health issues as far as I know.

It's possible that a medication he is on could be causing the low platelets. That happens sometimes.

Very few people die from ITP when it is monitored and controlled. It can take time for that to happen.

Thank you Sandi. Unfortunately can't do the ivig because the drug is diluted in a large volume of fluid which would be too much of an overload for kidney and heart. I'm going to ask about the Nplate this Wednesday at appt. Additionally when we see nephrologist and cardiologist I'm going to ask about all the many medications he's been taking for the past 10 years, several have the potential to decrease platelets and I wonder if all combined for a long period of time are having a cumulative effect. I'm really grateful I came across this site, it's helping me to try and process all this so I can ask better questions at doctors appointments. Thanks again.

Oops, my husband is 66. Had heart attack at age 43 then a quintruple bypass. Lots of issues, lots of drugs. And he never ever complains. Wish he would so we could catch problems at the start.

Yes, IVIG would be a problem. Sorry. It's best to focus on the symptoms rather than the counts. Also, ITP is sometimes temporary, so there is a chance that it could resolve.

Stick with us and read as much as you can. You'll learn fast.

Sirolimus is listed as an immunosuppressant drug preventing organ rejection after a kidney transplant.
It is also known as rapamycin, and also Rapamune. Off-label, it can be effective in treating immune cytopenias. It is not widely used for this purpose, but one patient on this site is using it.
pdsa.org/forum-sp-534/7-treatment-general/29096-need-input-on-a-drug.html#53812

Sirolimus is used to treat certain forms of kidney disease, so it MIGHT be safe for your husband to use, especially in case his platelets drop further. It could be worth asking his nephrologist.

www.ncbi.nlm.nih.gov/pubmed/16724087
Rapamycin and chronic kidney disease: beyond the inhibition of inflammation.
Abstract
Rapamycin, a potent inhibitor of the mammalian target of rapamycin (mTOR) protein kinase, is a well-known immunosuppressive agent. In this issue, Wu and colleagues report that rapamycin significantly attenuates renal interstitial fibrosis in obstructive nephropathy. Besides its inhibition of renal inflammation, rapamycin is able to block tubular epithelial-mesenchymal transition, thereby shedding new light on the mechanism of its antifibrotic actions.

www.bloodjournal.org/content/127/1/17
Sirolimus is effective in relapsed/refractory autoimmune cytopenias: results of a prospective multi-institutional trial
Key Points
Sirolimus monotherapy is a safe and effective steroid-sparing agent, improving autoimmune cytopenias in highly refractory patients.
Sirolimus is particularly active in ALPS and should be an early therapy option for patients who require chronic therapy.

Thank you so much, I'm adding it to my list of questions for the doctors.