Life after Fostamatinib trial

Well folks thank you all for your support but with a count of 31 yesterday I am now off the Fostamatinib trial being deemed unresponsive as per the protocol after failing to reach and stabilise at or above the target count of 50.

My mean average over the whole 16 weeks on the actual drug was 22 which was 3 lower than during the phase 2 trial when it was though I was on the placebo, so maybe I wasn't.

I am now having 2 weeks of nothing but prednisolone 5mg a day to make sure all Fostamatinib is out of my system before seeing consultant again to discuss future treatment options. Not looking forward to this as had to do the same pre trial to washout MMF. Platelets hit the deck resulting in 2 weeks of exhaustion and feeling frozen but c'est la vie.

Going to spend the next 2 weeks reading all I can about TPOs as it looks like that will be the next plan of action.

I am informed that the other person on the trial at my clinic is responding well. However it is interesting to note it failed the trials for rheumatoid arthritis. Maybe it's not what it is cracked up to be. I see it is now being trialled for IgA nephropathy too.

Anne

That's too bad. Sorry it didn't work fr you. Hopefully you will have more luck with the TPO's.

On another thread,

mrsb04 wrote: ... looks like I will be starting on the Promacta and tapering steroids journey very soon

Good luck, mrsb04. I know you have done your homework.

It is unfortunate that the Promacta dosing guidelines do not say enough about how to "fine tune" or titrate the dosing to the desired 50k platelet level. Worse, the guidelines say nothing about how to handle tapering off of prednisone or other platelet-supporting medications while titrating Promacta. Remember that platelets respond very slowly to changes in Promacta, but relatively quickly to prednisone changes.

If your platelets are already at a reasonably safe level, you might consider asking about starting at 25 mg Promacta, rather than the recommended 50 mg dose. As you know, there have been numerous cases here, where doses of 50 mg resulted in dangerously high platelet counts.

Titrating is still more art than science. EmilyK made a great contribution by reporting the details of her journey to stable platelet levels. I hope you will do so as well.

Thank you Rob

I have been following Emily's postings. I am very small framed so I will definitely discuss starting on a smaller dose but as I now have an enormous bruise on my arm after walking into a all last night I suspect platelets will be quite low.

I also think Promacta should be started at a lower dose. I guess they figure a 'load up' dose should be used but that has certainly caused problems for some.

Mrs. B,
Interesting that you talk about being small framed. I weigh about 110 and the first thing the doctor said when my numbers went so high was, hmmm, they don't talk about weight in the literature, but it makes sense that you might react differently if are a bit more petite. No idea if there is any truth to that. I actually called Glaxo and talked to a nurse about the dosing instructions and how, well, useless they really are. It basically says, if your platelets are too high stop and if they are too low, go up by 25mg. I found (and I am really new to Promacta), that staying steady for at least 2 weeks and making really small dosage changes have a big impact. I also talked to a doctor at Mass General who claimed he was part of the study on TPOs and he thought 12.5mg is so small as to make no difference--he never met me! I have only had 4 "steady" results, so take everything I say with a grain of salt. As everyone says, ITP is so unpredictable and seems to effect everyone so differently as do the treatments. Best of luck,
Emily

Well the last fortnight went almost exactly as planned. I did not plan on waking up with my first oral blood blister the other morning.

Whilst platelet count dropped (to 11) not only have I been researching the efficacy and safety of TPOs, I have also been frozen and exhausted and am covered in bruises.

Having been a nurse for 40 years I'm used to giving injections but have never thought I'd have to self administer.

That will all change in the morning. I have decided to opt for N Plate at this stage. Back to weekly bloods. Oh joy.

This might be the best thing for you right now. In time, you might be able to skip the weekly draws, I think Ann did. Hopefully you will get stabilized soon and will be able to relax a bit. For what it's worth, I think you're doing the right thing.

At least you are familiar with how to give injections. I had to learn how to self-inject MTX from YouTube! It actually wasn't bad at all except for the time I forgot to pinch the skin and injected straight in. :pinch:

Man I'm sorry nurse or no nurse I would not want to give myself injections! Here's hoping it works!

Count is 53 so stay on 50mcg of Romiplostim. Bloods again on Friday. Reduce Prednisolone dose by 1mg from tomorrow.

Count 78 on 100mcg of Romiplostim

Great! Hopefully you are on your way!

That is good news Mrsb04 and on such a small dose. I hope that you are not getting any side effects.

Hi, Mrsb04. This is Sue. I am also on Nplate. I think we started it almost at the same time. I got my third shot last Friday. My count last Friday was 40,000 (<--37,000 <--14,000). My lowest was 10,000. I am staying on 1 mcg/Kg, the starting dose, until the count starts dropping. It would be interesting to compare our response side by side.

My background-- I am a 52 year young (smile) very fit, and healthy lady.

The only side effect from the Nplate is the very heaviness in my legs and severe fatigues. The first week was the worst. The level of side effects on the third week is about 70% of the first week. It is very bearable. Just yarning every minutes.

I am not on any other medication. I tried prednisone for few days a month ago but realized that I could not function on the steroid so stopped. I was lucky to have the steroid stop so early that it would be easier for me to figure out what works for my platelets.

My main goal is to keep my counts above 30K for next 6 months with the lowest possible dose.

Wish us good luck!!

Hi Sue,
The only side effect I've had so far is mild muscle pains in my thighs when walking. I was so fatigued when I started it I wouldn't be able to class it as a side effect. It's going to take at least 4 months for me to wean off prednisolone because I've been on it so long so may be a while before I can find my optimum Nplate dose but lets see how our numbers progress. Anne x

Count stable at 70, steroids down another mg a day from today. Hoping count stays put

Perfect! I'm happy for you!

Yay!

That's brilliant, you must be so pleased. How is the self-injecting going?

Mrs B this is the best news! What a fantastic response and kicking the steroids into touch as well.

I started on 50mgc/kg of N plate with a count of 11.

After the first dose my count was 53 so my prednisolone taper started and count dropped to 24 after going down by 1mg/day.

Since then it has held between 62-76 on 100mcg/kg. . Pred down to 3mg/day last week. Count is now 52 so staying on same dose.

Another count on Friday and see consultant next Monday.

Once I am off pred all together I fully intend to tinker to find the lowest possible dose to keep count as near to 50 as possible.

Anne

Sorry Ann only just noticed your question. No problems injecting my self except. Thanks for asking
Anne x

Still on same dose of N plate with count holding in the 50s. Steroid reduction progressing very slowly.

Thanks for the update.

That's great! I'm happy for you!

On 100mcg N Plate I managed to keep a count of between 52-90 & down to alternating days of 2mg/3mg prednisolone.
Then all went haywire due to a stinking cold which consultant thinks was brought on by continuing and increasing pressures & stress at work. (Being an NHS front line nurse is not a bundle of laughs these days.)

Platelets crashed so prednisolone back up to 5mg/day.

Occupational health physician decided that job stress affecting me as unable to get count back up over 45. She asked GP sign me off work for 4 weeks and supported me in a transfer to a more structured and predictable working environment.

Have now done 5 shifts in new job & increased N Plate to 150mcg a fortnight ago.
Blood taken this morning & count is 118.

Prednisolone tapering will re- commence tomorrow morning.

Here's to the new job working out. Getting off Pred and keeping numbers where they are!

Thank you Winnifred

Bother...despite thoroughly enjoying new job with very little stress my count was 30 yesterday after tapering steroids to 3mg/day.

Back up to 5 mg daily, weekly bloods and see consultant again in 3 weeks. Yesterday she was muttering about long term N plate not looking promising so time to start reading up on Promacta again to refresh my memory.

Just a theory:

5 mg per day of prednisone is less than the corresponding amount of cortisol your body would normally be producing on its own. As you slowly taper at and below 5 mg per day of prednisone, your adrenal glands should be taking over by producing a compensating amount of cortisol. If tapering prednisone is causing your platelets to drop, it seems to me your adrenals are not kicking in: either you are tapering too quickly, or your adrenals are just not up to the job, i.e., adrenal insufficiency. 5 mg/day of prednisone is the usual starting dose for treating adrenal insufficiency!

When you taper below 5 mg, do you have any symptoms of adrenal insufficiency?
www.niddk.nih.gov/health-information/health-topics/endocrine/adrenal-insufficiency-addisons-disease/Pages/fact-sheet.aspx#symptoms

Are you experiencing symptoms from the 5 mg prednisone? If not, I don't see the harm in staying on it long term, or implementing an extremely slow taper.