Argh !!!

In my previous topic pdsa.org/forum-sp-534/6-general-itp-discussion/29363-i-m-coming-off-n-plate.html

a week ago I posted the following

"Next week I have a small surgical op planned so will take 150mcg as normal then I am to taper down over following 4 weeks as hopefully warding off a sudden crash in count.

I'm still on Prednisolone at 3mg daily. Consultant is happy stay on that dose & adopt a watch & wait policy".

Pre op clinic checked count on Tuesday it was 35. Haemo upped Pred to 10mg a day. Recheck yesterday was a count of 6.

Op cancelled and Pred increased to 20mg a day and back onto twice weekly bloods.

Oh my. :ohmy:

You didn't miss the (last) normal NPlate injection yet counts crashed?
If so, is that one of the possible behaviors of that drug after prolonged use?

Watch & wait commences.

Up to 117 today on 20mg Pred so back to 15mg tomorrow. No more N Plate for me, haemo thinks I've lost response.

I'm struggling to find any literature regarding this except Amgen acknowledging that a loss of response can occur. Think I'll ask Rob 16 if he can find anything as he seems to be a whizz at that sort of thing.

Sorry your procedure had to be cancelled for now. Hope your count stays good as you go down on the prednisone.

Hello Mrs B04,
After being on it for about 32months I seemed to lose my previously good response to eltrombopag in the summer of 2015. I could only get up to 10 on 50mg daily so my haemoglobin tried me on Romiplostin. I had little response to that too at max dose ,hovering in the low teens so we decided to try Rituximab. While on nothing in the run up to Rituximab I crashed to 1 . My gums were bleeding and I got a serious gum infection so as there was no quick response to the Rituximab I was put back on eltrombopag in Dec 2015 in the hope that it would get me above bleeding level,for me about 7 . I am not responsive to steroids. I am happy to say that on 75 mg daily of Eltrombopag my count steadily crept up to 27 in August.I am due another count next week and feel that I have not regressed as I have virtually no bruises and feel well. So do not give up hope ; it may be that as we get older we become less responsive to the TPOs but with perseverance it may still be possible to get to a level that allows normal functioning( except for operations of course). High dose eltrombopag has also corrected my very low white cell count and my low haemoglobin( just recently developed) saving me from infection and breathlessness.I know the long term outcome of a high dose is unknown as yet but who knows what the future holds for us at any time. After your op if you want to avoid horrible steroids give it a try if your haema agrees. I hope you improve soon.

mrsb04,

Sorry for the delay getting back to you. Ellen and I were caught up near Lumberton, NC in the aftermath of the hurricane, trying to get home to Atlanta following a beach vacation, unable to find gasoline due to flooding and the power grid being down.

Perhaps you can reconsider Promacta even though you have problems with the dietary restrictions, as well as complications with timing due to shift work. I just posted a relevant article on a separate thread, saying that some people develop antibodies to Nplate. The same problem does not appear to exist with Promacta.

In addition, I found another article indicating that switching between Nplate and Promacta is usually successful, and that if one has been effective for you, the other most likely will be, too.

www.haematologica.org/content/98/6/881.short
A Retrospective Pilot Evaluation Of Switching Thrombopoietic Receptor-Agonists In Immune Thrombocytopenia
"In 80% of the patients, the 2 thrombopoietic receptor-agonists achieved similar response patterns. Our results confirmed that switching from one thrombopoietic receptor-agonist to the other could be beneficial in clinical practice for patients with severe chronic immune thrombopenia who failed to respond or experienced adverse events to the first."

romiplostim eltrombopag "loss of response"

It now appears I'm hypersensitive to Prednisolone. Down to 15mg a day and count up to 293. Dose down to 10mg from the morning and yet another blood test. I can't win

Ready for a laugh?

Which is more probable? Hypersensitive to Prednisone, or, remission ?

Adjusting too quickly might cause a crash. Be careful there! Let us know!

Yes, Hal if it were me I'd be thinking yay! I'm in remission! Once I got a CBC paper print-out that said my platelets were 297. I was like YES! REMISSION!! Then a nurse comes hurrying over saying they gave me the wrong print-out. wah a very short-lived remission.

Regarding the losing response to Nplate- I've slowly been less responsive to Nplate. Been on it since 2014 when I was responsive to 3mcg per kg of body weight. Now I stay around 50K platelet count on 5mcg- 3mcg doesn't do anything.

But the TPOs can be unpredictable. In my experience it may appear that I've lost responsiveness but then the counts come back. Especially Promacta- its a very unpredictable drug for me. Ive been on it 4 different times and each time it behaved differently with different side effects.

The first time I started on 25mg but had no response so went to 50mg until my numbers began to climb too high, then dose was lowered back to 25mg. The third time I had zero response to 25mg. Fourth time I quickly got a response to 21K on 25mg- really didn't expect that. good luck mrsb

I'm not even daring to think I'm in remission..I've had counts shoot up before only for them to crash right back down to single figures within a week after reducing pred by as little as 0.5mg a day.

The most annoying part of this condition is the unpredictability aspect.

25 today..haemo says don't your counts fluctuate !!!!

My hematologist would not like the big swings like that.
I'm too lazy to go looking - reminds me [us] again what your symptoms are
with a lower count.

Melinda

I have no symptoms at all other than bruising until count drops below 30 when I get very cold, am tired and have waves of fatigue. I've only have oral blood blisters with a count lower than 12.

I am sick of trying different medications to keep my count up. I've had 4 different second line therapies in 2 years so as per my previous topic pdsa.org/forum-sp-534/6-general-itp-discussion/29363-i-m-coming-off-n-plate.html

Having had a long discussion with my GP (whose speciality sideline is orthopaedics) regarding my osteoporosis she wants me on a maximum of 5mg Pred a day. My plan now is to try to slowly taper to that dose and see what happens.

If I can keep my count above 10 I will be safe I'm sure, see www.bloodjournal.org/content/bloodjournal/121/24/4938.full.pdf?sso-checked=true so I will just have to wear extra clothes to keep me warm