Worse and worse

4 today. Dammit. Watchful waiting's been a bust, watching while I bounce between essentially zero and 20. Waiting on the hematology team to give me something else, some sort of actual PLAN. I can't just stay in the hospital forever but I am near about terrified to go home, 2+ hours from any help, and see if I bleed out in front of my husband. This is NO life. Is it time for Mayo? I thought I had time, that I could maybe figure out at the conference in July, but that seems like asking a lot of my sick body. Crap. Crap.

Thanks for listening.

They want to try MMF 1st (micofenolate mofetil), then when that fails CellCept, and when that fails fostanatinib which is off label but "promising". Want to start today so I have some research to do. Is anyone familiar with the genetic protein testing? A friend suggested I do it, a company called Alphagenomics.com. Doc thinks it's quack science in this case due to no known genetic markers for ITP but I'm interested in learning more. NOT a fan of being the Guinea pig here.

m.youtube.com/watch?v=DBJ5SswU8tI

A video of Dr. Bussell talking about fostamatinib. I feel like I have a new lease on life- love me some Dr. B!!! And it turns out MMF IS CellCept, so what they called 2 different options, isn't. That's OK, I've made my decision and for the first time since I got here, I expect to go home again NOT in a box. Hallelujah, something that doesn't suck a root!! Whoooo hoooo!!! I have never been so scared and discouraged as I've been here, you can't imagine my relief! (You probably can.). Insert sh*t eating grin here!!

Glad you are feeling more relieved. Hope your counts are getting better. It is scary when they are so low. It happened to me as well, 0-4 count covered with petichia and bruises, blood blisters. I felt like it would never end. You will get through this!

Good luck, Lib, but CellCept can take a while to work if it's going to.

Man oh man, I'm really fearful of CellCept. The thought of taking it at all scares me, let alone for any extended amount of time. What do you mean by "awhile"? Weeks, months? Come on, FDA! I want to try Fostamatinib!

Weeks or months. I took it for Lupus for a few months. I quit because I was constantly getting sick and couldn't kick it.

No guarantee Fostamatinib will work never did a thing for my platelets. A co patient had a reasonable count for a year but then relapsed. No signs of it being licenced for ITP here in the UK.

It failed rheumatoid arthritis trails & is now being trialled for IGa nephropathy.

Darlin', there ARE no guarantees, period. But I have to have some hope so I'm choosing to see fostamatinib as working for me, because EVERYTHING else has been an epic fail and CellCept is purely terrifying to me. How long did you take it? I'm assuming you participated in a study? Was it a double blind or do you know for sure you weren't on a placebo? What other meds have either worked or failed for you?

Hi Lib

I hope Fostamatinib works for you. The trial was Double Blind Randomised Control (See below)
Here is a chronological list of treatments I have taken.

High dose steroids
These work, however that is NEVER going to happen again.
The side effects of both high dose and subsequent dose reductions are horrendous; mentally, emotionally and physically, some of them long term.
Dose reduction is a very long bumpy road as one gently teases one's adrenal glands from their long hibernation.

Azathioprine aka Imuran
Didn't work at low dose.
Side effects of medium dose on my digestive tract and zero effect on my platelet count put a stop to that.

Mycophenolate Mofetil aka Cell Cept or MMF
Didn't work even on maximum dose.
Never felt so depressed in my entire life.

Fostamatinib trial
Double blind for first 13 weeks. Failed that therefore, as per protocol, it was assumed I was on a placebo and was moved onto the Open Label trial up to week 26. Failed that too.
This marked the end of my participation in the trial. Candidates who responded and were side effects free were offered the the option to continue post trial. Who in their right mind wouldn't?

Romiplostim aka NPlate
Worked reasonably well for a year to suddenly stop working. Counts swung all over the place. The boxes took over my fridge when I'd picked a new batch up.

Medium dose of steroids
4 months with an average count of 16.

Eltrombopag aka Promacta
15 months so far and no plans by me to look for a different treatment.

Down to 3mg of Pred a day and feel the best I've felt since this ITP lark kicked off 4 years ago.
I refuse point blank to part with my spleen.
If Eltrombopag decides to stop playing the game I'll be mightily brassed off and probably opt to try a mab therapy. Being drug free is my dearest wish but I can't get my count up enough to be symptom free without the wretched things.

Anne

Oh, I think that's the first time I've heard you comment that Imuran didn't work for you because of lack of counts Anne. I thought it hadn't worked for you because of major side/adverse effects. Makes me wonder if row 2b, and not row 1, is at work with those failed immunosuppresent drugs.
Further, if Fostamatinib doesn't work for row 2, that would suggest it works for row 4 folks.

I think that's the first time I've heard you comment that Imuran didn't work for you because of lack of counts Anne.
I have several times Hal, just searched my posts using Azathioprine as keyword.
I've looked at your table again but haven't a clue where I would fit into it.
I've never had IVIg and my indium scan showed splenic destruction if that's any help

Anne

Ok. Perhaps I was thinking of someone else as far as side effects are concerned. I had forgotten about the Indium test too. That test result would explain row 1 as the case here, written in my notes.

Right. Without a IVIG response it becomes a guessing process of elimination.

I was doing some youtube searches on Fostamatinib. Did you know that they are studying it for Nephropathy too?
www.youtube.com/watch?v=CIEgDaGoj2I

Hal
I do,
18 Jun 2017 16:30
mrsb04 replied the topic:Protalex Inc. researching new and unique ITP and RA treatment.
Protalex Inc. researching new and unique ITP and RA treatment.
Category: Newly Diagnosed & Frequently Asked Questions

Sounds a bit like Fostamatinib.
Failed for Rheumatoid Arthritis, 18% response rate for ITP, now being trialled for IgA Nephropathy & Haemolytic Anaemia

A drug has been invented by Rigel which will help something but as yet they do not know what!!!

I'll have to say. The words 'renal' and 'nephropathy' didn't really enter my vocabulary/lexicon until my Hema put 'chronic kidney disease' on my paper work a few months ago. Slowly picking it up.

What the heck is with this 'SYK' immune pathway that Fostamatinib is supposed to affect, or block. With it only affecting 18%, sounds like they don't understand what is going on with the remaining 82% of platelet destruction cases.

Blocking IgA is interesting though. Makes me wonder if the drug would block the Celiac IgA response to gluten similarly. Ha, maybe I can talk my Hema into a low dose Promacta and Fostamatinib alternating combination next year.

IgA is for gut immune response. The digestive track side effects of Fostamatinib makes more sense now.

Lib, if your following this. So does 'compassionate' use of Fostamatinib mean they will only give it to folks that have already taken it during the trial ?