TOPIC: Started Promacta February 2017

Here goes with treatment number 6. Maybe my ITP will respond to this one.
Baseline platelet count on 10mg Prednisolone a day = 11.

Must remember to take my AdcalD3 at tea time not bed time

Best of luck with Promacta. You've surely been mentioning it for awhile.

Looking over some older posts. Noticed that you've tried Azathioprine and MMF (and even Fostamatininb). When you took these were you also on high or low dose steroids? Did steroids, once upon a time, keep counts up?

Good luck with it! I'm sure you'll get in the swing of the schedule in no time. Keep us posted

Remember the build up might be slow and you may need more than 50mg daily to progress. Don't let anyone try to take you off after 4 weeks if you are slow to get going. After 13 months on 75 mg I have gradually increased from 3 to 90. Consultant is reluctant to decrease dose in case I crash again. Says he won' t drop it unless I get to 150.

Margaret

Thank you for that. She has started me on 25mg a day. I questioned it but she said I have such a tiny frame she wants to see if I have a response to that dose which makes sense I suppose. Weekly bloods then back to clinic in 4 weeks.

Hal
Steroid doses ranging between 45mg to 3mg since July 2014. Initially I responded well to steroids but seem to need over 20mg to retain a decent platelet count with no other treatment i.e. a count in the 20s, which is no good for someone with osteoporosis plus the side effects are horrendous. When on the Fostamatininb trail for I had to stay on the same dose for 7 months and had got down to 5mg a day as my bones are protected by Alendronic Acid at that level. I'd got down to 3mg a day on NPlate when that stopped working.

Best of luck!

Thank you Emily. How are your counts these days ?

On december 30 they were at 52000 which is fantastic! I had been off all medication since may, i think, then I panicked after a nose bleed, 3 days back on 12.5 of promacta and then i stopped again. Not sure when I will get tested again. Thanks for asking.

That is good news Emily..there's hope for me yet

Always hope!

Day 15 on Eltrombopag 25mg a day. Count was 36 last week so dropped Prednisone to 9mg/day. Just got my results from this morning's FBC & my platelets have reached the dizzy height of 63. I will be dropping the Pred down another 1mg/day from tomorrow.

That's great news Mrs b .I hope you manage to wind down the prednisone without ill effects .

Good for you! I'm so happy to hear this!

Such great news, mrsb! 63 is a wonderful count- and 25mg is a low dose. I'm very happy for you! Are you having any side effects? They tend to go away with time. I know you are going to love being off of prednisone! yay! It takes time to taper as you know, but so nice being free of it. When I have tapered, I start to feel really good around 2.5mg and lower. I get a lovely calmness and sense of well-being. I have been off pred for one year. I haven't had a bone density test yet. My hemo said to wait because there can be a rebound effect- whatever I may have lost in bone while on pred, may come back.
Take care and enjoy those good numbers!

From 11 to 63 without starting on 50 mg dose. Sounds like a great start mrsb.

(Kefir) Cheers to an end of steroids !

Poseymint...

I've lost my appetite a bit but other than that nothing of note. Steroid taper will take ages as I don't cope with it well but there is light the end of the tunnel. The lowest I've ever got down to is 3mg a day but am optimistic. However my GP fears I may have permanent adrenal insufficiency and may end up staying on a very small dose , only time will tell.
I've been referred to a specialist in metabolic osteoporosis I'm seeing him in 3 weeks. No doubt I will end up having a repeat bone density scan to ascertain how much more damage the Pred has done. Will report back once I've seen him.
Anne

mrsb04 wrote: Day 15 on Eltrombopag 25mg a day. Count was 36 last week so dropped Prednisone to 9mg/day. Just got my results from this morning's FBC & my platelets have reached the dizzy height of 63. I will be dropping the Pred down another 1mg/day from tomorrow.

*high five* Awesome news Anne! I'm so glad to hear that this is working well for you so far... and on only 25mg too! Hopefully as you taper things will stay good. Keep updating us as you go along.

Latest update here..

pdsa.org/discussion-group/7-treatment-general/29600-eltrombopag-rollercoaster.html#58484

mrsb- yes, let us know about the bone density. I'd be very interested.
Great the counts came back up! I've seen that with myself. If I just stay with the same dose when the counts drop, they often come back the next week.

How long have you been on prednisone? I was on it a long time, over a year maybe 2 years and they came back. Hope you get yours back! when I was tapering I had fatigue and achy joints- I had to sleep a lot to get through it. I couldn't over-work or stay up late. Stress and work pressure really made me tired. I tried to exercise at the gym but my muscles felt so weak and shakey after riding the bicycle- I had to be gentle on myself and take it easy. I knew I was getting my adrenals back when I could go all day without taking a nap. good luck!

I've been on Prednisolone for nearly 3 years. The first time I tried tapering I did what I was told by haemo consultant and felt absolutely dreadful ending up at GPs in a right mess. She was lovely and designed a very gentle taper plan for me that worked and got me down to 5mg a day for the fostamatinib trial. I then had to stay on that dose for the whole 6 months.
When N Plate failed without any warning in October I was down to 3mg a day but with a count of 6 straight back up to 20mg a day.

The main problem is that with a compromised immune system due to steroids and 4 small grand children who are busy building up their own immune systems I'm exposed to so many germs. Every time I get the slightest sniffle my platelets crash to single figures and Pred is upped to get them to a 'safe' level. Got back down to 12mg by Christmas when full of cold again with a count of 2 & blood dripping from my nose so back up to 20mg for a week. Since when I have been gradually reducing again, on 10mg a day when I started Eltrombopag. I shall now continue at a maximum of 0.5 mg a week drop as I know I can't do it any quicker than that once I'm below 10mg a day. .
.

I tapered even slower than 0.5mg per week because I alternated days to weave the new dose in. Example: 3mg for a week, then alternating days with 2.5mg for a week. Then 2.5mg for a week. Sometimes I even stayed on a dose for longer than a week if I felt too tired to lower it.
After I got completely off pred I was sensitive to stress for quite a while, 3-6mos. Just as in the article that Rob posted about adrenal insufficiency. If I stayed up too late or worked long hours I would really feel it! It would be hard to recover. Also emotional stress made me tired. BUT overall I felt so much better! Just so much calmer, relaxed and easy-going. that was nice. Plus so great to lose the weight that I had gained and lose the moon face, double chin. I had so much fat around my neck I think it was giving me sleep apnea- ugh. I am sleeping and breathing much better since off pred.
I hope you can get completely off prednisone! I have the feeling that you will if all goes well with the Promacta. best of luck

mrsb04 wrote: Day 15 on Eltrombopag 25mg a day. Count was 36 last week so dropped Prednisone to 9mg/day. Just got my results from this morning's FBC & my platelets have reached the dizzy height of 63. I will be dropping the Pred down another 1mg/day from tomorrow.

Woohoo! Your body is showing a great response to the Promacta! Keep us posted.

Good luck!
I've had ITP for 24 years. Been on several types of treatments.
I will be starting promacta too after my body isn't responding to Retuxan & Prednisone anymore. I'm hopeful it will with promacta .

Title seems a bit aged now as this is week 6 but will continue with updates on here.
Still on 25mg Eltrombopag a day and count is holding in the 30s. 38 today.
The prednisolone taper will continue but very gently. Experience dictates that coming off steroids is thoroughly unpleasant unless taken slowly. I'm down to 7mg from 10mg six weeks ago and so far have only had slight withdrawal symptoms. Overdid it in the garden on Sunday and paid the price for the next 4 days, spending more time horizontal than vertical due to fatigue and muscle aches.

Not much to report regarding consult with metabolic specialist as I cannot have a repeat Dexa scan before October. So carrying on with current osteoporosis treatment until then. He was not very pleased that I hadn't been started on bone protection treatment when I started on Pred.

Platelets down to 12, Promacta up to 50mg a day. Repeat bloods Friday, clinic appointment Monday.

Phooey Anne, sorry to hear about the drop. Hopefully the count is just an outlier and you won't be joining me on the Promacta roller coaster. 50mg is certainly not a bad dose and you'll have to see what sort of a response you get. I hope your Friday bloodwork goes better!

Good luck, Anne! Keep us updated. You might be able to edit your title.

Repeat on Friday? That almost sounds like punishment. Wasn't it there idea to start at 25 mg?

Don't know how you do at 12, I would have been tempted to tell them 'it takes two weeks for a dose adjustment to take affect, how about we recheck then'

Hal, ITP clinic only runs on a Monday, I have to fit appointments round my shift pattern, protocol is bloods on the Friday before clinic plus I need more tablets which are only available from the hospital.

Sandi, tried to change title but didn't work

As you can see, I changed it for you. Like I said, I don't know how your screen looks but the way to change it is to go to the very first post you wrote in this topic and find edit, then highlight and retype the title. That's what I did but I'm not sure if you have that option.