NATIONAL SHORTAGE OF PLATELETS

There is a national shortage of PLATELETS! Found out about it at the infusion center, only emergencies can get them at this time. I've been trying to spread the word on this and already have some friends with appointments to donate. IF you have family members in good health please ask to donate.

US or Canada?

This is nationwide US.
www.10news.com/news/alert-san-diego-blood-bank-desperately-needs-donations

Barb, two down and two to go, yes ?

Yes! And yesterdays went great! I felt great after and today! Prednisone lowered to 50. Thanks for asking!

I asked at the hospital I work at, and no concern with a shortage in RI.

Yea, the first one seems to be a gating test for more. I have to ask how it is going, LOL, suspect I'll be going through Rituxin treatments in a few weeks myself. Are your counts still flat lining with the steroids?

They were 45 last week, after falling to 20, and increasing my Prednisone from 30 back up to 60. Were at 44 yesrterday.
I know some have had a hard time with the Rituxan, but luckily knock on wood, it's been good. Hopefully you will do well also. When do you start?

Nothing scheduled yet for Rituxin, will be starting IVIG monday. Need a rescue treatment first, as my response to steroids is poor too and counts are normally less than 20.

Yes, if mine was 19 instead of 20, I would have had the IVIG first, too.

Hal do they do a count before administering IVIg?

Melinda, pretty sure they will not do a draw before. It's at an infusion center, not a hospital, and draws have to be sent off. Results next day. LOL, are you looking for some spare platelets or something?

Barb, my doc had talked about Promacta or NPlate after IVIG. But the lure of remission with Rituxin is very enticing. So I mentioned Rituxin to her last week. She responded by saying it could re-activate Hepatitis. I pointed out that my blood test for Hepatitis A, B, & C were all negative. Maybe I am missing something here, I dunno. Thoughts?

Remissions are possible with TPO-RAs.

Here are the results of clinical trial NCT01143038 of Nplate in which 32% of 75 subjects achieved some form of remission.

clinicaltrials.gov/ct2/show/results/NCT01143038?sect=X80156#outcome2
Interventional Study in Adults With Immune Thrombocytopenia Purpura (ITP) Receiving Romiplostim

The journal abstract is here:

www.ncbi.nlm.nih.gov/pubmed/26537623
Remission and platelet responses with romiplostim in primary immune thrombocytopenia: final results from a phase 2 study.

Actually I had a good result the other day - 93k.

I think I'd want a count done before - if count good enough then wouldn't need the treatment.

I have never had Hepatitis, but he did test for it before I started the Rituxan.

Rob, thanks for that. Not seen before. I have seen studies where it appeared, on the surface of presented data, NPlate might be better than Promacta in terms of remissions. This clinical trial had some impressive remission numbers - better than I recall from Promacta.

I need to do more investigation. At this point I have hung my hat on Rituxin based on this PDSA post. Why? Because of the mutual itching condition that 'dru' and I seem to share.

www.pdsa.org/forum-sp-534/20-lupus/16244-tingling.html?limitstart=0#16396

LOL, where is 'evidence based medicine' when you need it.

Barb, IVIg was easy-peazy. Reacted more to the (same) premeds then the Ig itself.

So glad to hear! Yes, the pre meds can be difficult. Any idea when you will start Rituxan? Still the plan?

Barb, well with all the comments (WinRho) here need to double check the Rituxin route. If Rituxin fails (2 month wait?) then Promacta/Nplate. Nplate may be preferred (re Rob's post). Also, will have to pin down my Hema again about Rituxin next visit.

Is your Hema tapering steroids to zero, or to hold in 40s count range while waiting on a response to Rituxin?

No, I am tapering off of it from what he said at my last visit. On 50 now and starting 40 on Friday. Dropping 10 every week until 20, then....15, 10, 7.5, 5, 2.5...done. Things can always change, though. Sounds like NPlate would be next for me if need be.

Hal9000,

I did not mean to say Nplate alone produces remissions. Promacta produces remissions as well, as shown in the study below. The data for the Nplate and Promacta studies cannot be compared to each other (different sampling, etc.) but both showed a significant rate of remission.

www.bloodjournal.org/content/124/21/1465
Successful Discontinuation of Eltrombopag after Complete Remission in Patients with Primary Immune Thrombocytopenia
Conclusion: Platelet response following eltrombopag cessation may be sustained in nearly half of adult patients with primary ITP after CR with eltrombopag. However, reliable markers for predicting which patients will have this response are lacking.

Thanks for the Promacta study Rob. Seems you've really got how to search for ITP articles/studies down pat.

I do realize both Promacta and Nplate produce remissions. A previous article I had read was about TPOs in general and didn't separate the two drugs. Perhaps a 'retrospective study' of both drugs could get to the bottom of it in terms of a remission with a uniform definition of that term.

Melinda, nice count.

I think with IVIG treatments alone I don't think it is possible to achieve anything more than one's normal max count (no antibody destruction of platelets). If one is taking TPOs (Promacta / Nplate) then one can get excessively high counts.

Barb111 ..be very careful with your taper..Read up on adrenal insufficiency and HPA suppression. A fast taper is NOT good believe me. My consultant told me I'd be fine. I wasn't. There are quite a few posts on the site about this Rob 16 kindly posted this after I asked about it

pdsa.org/forum-sp-534/7-treatment-general/29130-steroid-tapering-secondary-adrenal-insufficiency.html#54152


These are UK guidelines

Gradual withdrawal should be considered for people who received more than 40 mg prednisolone daily for more than 1 week.

•The problem has resolved and treatment has been given for only a few weeks. Reduce by 2.5 mg every 3–4 days, down to 7.5 mg per day, then reduce more slowly, for example by 2.5 mg every week, fortnight, or month.

•There is uncertainty about disease resolution and/or therapy has been given for many weeks. Reduce by 2.5 mg every fortnight or month down to 7.5 mg per day, then reduce by 1 mg every month.

•Symptoms of the disease are likely to recur on withdrawal Reduce by 1 mg every month.

Sorry to harp on but wouldn't want anyone to go through what I did.
Anne xx

Thank you, Anne i appreciate the input.
I have already tapered once from 60 to 30 by 10 a week without difficulty and hope so again. I will discuss with my hemonc again on Friday. I started the Prednisone about 1 month ago.
Barb

Let me confuse you two further. Some people have a difficult time getting stable counts with N-Plate. They get the injection, counts jump to say 75k, then by the time the next injection is due, counts are back down. That up and down freaks some people out. It also freaks some doctors out, and they raise the dose. Counts end up too high so they skip an injection and the patient crashes. This can occur quite a few times until someone wises up (usually the patient) and suggests something to change the situation. It can be done successfully if the doctor is experienced with N-Plate and the patient is patient.

Promacta has a better track record with count stability as long as the doctor does not chase counts by constantly raising and lowering the dosage based on the count of the day. It can take time to stabilize.

The problem with both of those drugs is that you do not want counts to be normal. Counts should be around 50k, give or take a few.

Barb111 wrote: Thank you, Anne i appreciate the input.
I have already tapered once from 60 to 30 by 10 a week without difficulty and hope so again. I will discuss with my hemonc again on Friday. I started the Prednisone about 1 month ago.
Barb

It is more important to go slow the lower the dose gets, especially below 10 mg's. The adrenals produce about 7.5 mg's of cortisol per day and they need replacement until they kick up production on their own. Steroids cause the adrenals to stop producing cortisol.

I will definitely talk to doctor more about going slow as the mgs. go down. I know he said under 10, we'd go slow. I will ask hime if the 2.5 per week drop may be too much and see if we should do 1mg drops. Just will be happy to be off, no matter how long it takes!
Barb

I didn't go slow my first time on Prednisone. I didn't know any better and the doctor took it down fast. I did feel horrible though....so weak and exhausted that I could barely function. I pushed through it at work but it was one heck of a ride that lasted about two months.