Started Promacta February 2017

I have no preference regarding needles just the person inserting it

After 18 months on Promacta , the last 4 being on 50 mgx2 and 75mg x5 , my count has risen to 139, despite my having a stinker of a cold for the past 4 weeks and consuming lots of paracetamol, decongestants and cough mixtures.. For the next 5 weeks I will be doing 50 mg 3x week and 75 mg 4x week.My hope is to eventually get a stable 100 count on 50 mg daily. I need the feeling of security that a count well above 50 gives , in case of any disasters.

Platelet count 46 yesterday on 25/25/50 Promacta.
Pred taper continuing gently, current daily average is 4.73mg.

mrsB~ yay! you are under 5mg on your pred taper! How are you feeling at 4.73? Slow and steady wins the day. As I've posted many times, I alternated doses to weave the new dose in. For my long slow taper I used 5mg, 2.5mg and 1mg tablets. I remember scratching tiny chunks off of the 1mg tablet just to lower the dose an immeasurable bit. haha We do get creative sometimes. I like your attitude with the doctor!! I don't doubt that you can get down to 3mg and maybe completely off of it. As you know, it just takes time for the body to adjust to each new dose. Its exciting to follow your progress- good luck!

Thank you Poseymint. I'm actually on 4.43mg/day now ,not 4.73 as I typed in last message. I'm feeling fine at the moment. Lets hope it continues. Roll on 3rd of December. So wish I hadn't had the cellulitis as it's pushed it all back 6 weeks but in the scale of things 6 weeks after over 3 years on the wretched things isn't too great a disaster.

Count now 33. Pred down to 4mg a day, don't think that has anything to do with it however as the wretched stuff only works above 20mg a day. More likely due to the fact that it is school holidays and, at the tender age of 60, looking after 2 grandchildren aged 4 & 6 for many more hours than I usually do as DiL is working double her normal hours due a staffing crisis.
I shall continue Pred taper and increase Eltrombopag to 25mg/50mg on alternate days instead of 50mg every 3rd day and repeat bloods in 10days.

Congrats on getting down to 4mg of Pred! You are well on your way with the taper. 33 isn't such a bad count, and hopefully as you get more rest and school resumes you will rebound. Sounding good with no crashes overall. Onward and downward with the Pred (and hopefully slightly upward with the counts!)

Yes, as momto3 says, 33 is a decent enough count. Could be kind of a normal fluctuation. Or like you said, lots of time spent with kids. Perhaps it will come back up next week. Hope so! My counts go into the 30s all the time like recently 25K 29K. I have no idea why. And when I'm thinking that the dose has lost its effectiveness, it goes up to 79 (last Tues). But I'm on Nplate so its a bit wild in its swings. I don't like changing my dose, I feel like my immune system is better if I stay on one dose. So, my agreement with the hemo is that if the counts are between 10- 100K then we leave the dose alone. Great you are down to 4mg pred!! Funny I remember now that my counts would dip when I tapered even .5mg. For me it wasn't that the low dose that caused the drop, it was the change of dose (I think?). Hard to say but seemed that the change in dose would drop my counts for a few days. Then they'd come back up. Oh the joys of tapering prednisone (not) Hope you are feeling okay.

Poseymint, I am thank you just tired but not exhausted.

As before 50mg/25mg on alternate days has sent my count up over a 100 again to 115. I shall reduce Eltrombopag back to 25/25/50. Any count above 30 is fine by me but don't like being lower as start to become symptomatic.

Pred was tapered to 4mg/4mg/3mg for a week prior to testing and now 4mg/3mg, next week to 3mg/3mg/4mg. I'm determined to get off the horrid stuff. Having cortisol levels checked on 1st September. Wont be completely accurate but as I'm taking less than half the physiological dose it will give an indication of my adrenal function, which, as I feel fine now my child caring responsibilities have reduced, I'm hoping is returning.

Back to clinic on 4th next month.

Let me know how it goes with the test. I went to an Endo and was told that as long as I was on Prednisone, he couldn't test adrenal function since the results would only reflect the steroids. I wish I had some help or guidance getting my dose down...been on it for over 10 years (15 mg's). My Rheumatologist just expects me to go down 1 mg a month until I get to 7 mg's, then I can just continue that for life. I know I'll never get off of it. So far, I got down to 13 mg's, but that has taken a year. I try to do 13/12 on alternate days and hopefully can get down to 12 soon.

After going down to eltrombopag 75mg 4x and 50 mg 3x wk for past 6 weeks my count has gone up from 139 to 168 so I am now reversing the dosage to 50 mg 4 x wk and 75 mg 3 x. And this while suffering what appears to have been whooping cough. A far cry from the days 2 years ago when 50 mg daily could only get me to 10! To all those who are suffering a fall in counts - there may always be light at the end of the tunnel.

Sounds promising Margaret

magaret, best I can tell Promacta/Nplate seems to have an amazing curative/regulatory power for those with a poor or flat line IVIG response - which you apparently have.

mrsb, Cheers to No Steroids !

Margaret - High dose Vitamin C is a great treatment for whooping cough.

Thanks, I've now recovered. In the Uk at present there seems to be quite a high incidence of adult whooping cough such that it featured recently in a BBC chat show.. Although I was vaccinated as a child it appears that immunity wanes with age . Unfortunately by the time you find you have had it there is not much you can do about it ; it is most infectious before the cough appears, when you think you just have a cold.

Well, you should have lifetime immunity now. I'm glad you are better.

Following my bout of cellulitis back in May momto3boys wrote
It's tricky managing two medications, especially with a bump in the road like you had!
10th July I wrote
Saw Haemo today who told me to stay on 5mg a day & forget about taper. I shall be ignoring that advice and will recommence tapering at the end of this week at a slower rate. I know I can get down to 3mg as I've done it twice before.

I've just seen my haemo again. We get on well. We have a good patient/doctor relationship. She does me the courtesy of seeing me first thing in a morning before the clinic starts. As she says 'we don't get many staff perks.'

Current medication regime 25mg/25mg/50mg of Eltrombopag, 3mg/3mg/4mg Prednisolone.

The conversation went like this.
Anne you look tired
School holidays are finished, no more tearing around after 2 youngsters several times a week.
Or maybe because your platelet count has dropped to 23. You always say you get tired below a count of 30. Every time your count goes above 100 you drop your Eltrombopag dose, why?
I get panicky at the thought of too many big juicy platelets roaming around my system. I know what blood clots can do to people. A count of 50 is fine by me. Every time 50mg is involved on alternate days rather than the third day my count goes up quickly. I'm frightened it will continue to rise.
But you have never stayed on the dose long enough to find out if it will. Protocol is a count under 150 means no dose change. Please try not to panic. You are still on your steroid taper too.
I am, I plan to go to 3mg a day tomorrow if my cortisol levels are ok
They are, look, perfectly normal (shows me on screen).
Ooh good that means my adrenals have woken up.
It looks like it but I think the bout of cellulitis has upset the apple cart more than you realise. You a trying to juggle 2 different drug doses at the same time as getting over a very nasty infection. This is bound to take its toll. Maybe this is why you are tired. Your adrenals are working hard to hold their own. Plus your platelet count is all over the place.
(Turns to screen again and pulls up all the bloods I've just had done pre osteoporosis consult next month).
Neither of us is an osteo specialist but we can both see that all these levels are fine. Your osteoporosis treatment is preventing the steroids from further damaging your bones. I understand that you desperately want to get off steroids & I support that. I just feel that putting it on hold for a while will benefit you in the long run.It appears you need somewhere between 25 & 50 mg of Eltrombopag a day. I really would advise getting your Eltrombopag dose sorted and your count more stable before tapering Pred any lower.

Never once did she mention the fact that she had advised holding at 5mg a day of pred & I'd ignored her.
I cannot argue with her logic. So the new plan is 3 months of Prednisolone at 3mg a day and try to stabilise my Eltrombopag dose. To take 25mg/50mg for 2 weeks, then a count done. If it is below 150 stay on that dose repeat bloods and go back to clinic in 4 weeks for the results. Try not to panic at counts >100.
It's only a little set back in the grand scheme of things.

Ouch, hanging and not continuing the taper would be a hard pill for me to swallow. Probably smart to wait, there may be benefit to slowing down things a bit, but I don't know that I'd be willing to wait 3 months to continue going down! I'm probably just a bad patient that way, good for you for taking it in stride.

Regarding stability on the eltrombopag, I guess it depends on what they consider "stable." My current doctor said that there will be crashes with infections and that really doesn't affect what I should do with dosing. If you have things (infections, blips, outlier counts) happen, you don't want the doctor to say, "oh, look at these fluctuations. You aren't stable yet." You know your doctor better and hopefully she will evaluate stability in the bigger picture. Honestly, despite my last few labs (90 something, 40 something, 90 something, 52) bopping up and down, that is more "stable" than I've been thus far. I don't think I'm ever going to just float in a +/- range of 20k. Some people achieve that kind of rigid stability, but I don't see it for me based on my count history. Maybe it depends on the ratio of production issues to destruction issues in any one given patient. Who knows.

Like you, I'm terrified of counts too high and just won't be able to sit still if my counts climb close to 150. That's just me and my personality. I wouldn't be able to live normally thinking of my count so high and imagining a nefarious clot approaching my lungs at any time! I'm too dramatic Hopefully you can see if you can stomach counts a little bit above 100 for the sake of dose stability.

Good luck! Fingers crossed for your taper to resume sooner rather than later!

I wish I had your doctor, MrsB. My Rheumatologist decided last year that she wanted me to get off of 15 mg's and get down to 7 or 10 permanently. I agreed and began a very slow taper. I am down to 12.5 which I thought was good. She had been prescribing 5 mg's and 1 mg doses every month. I was taking it slow since I've been on steroids since 2006.

She up and went on maternity leave and I called to have my script refilled. When I went to pick it up, they would only refill the 5 mg's at one pill per day. I was like WTH! My pharmacist who is basically a friend said that she called about it and they said, "Oh she should be off of that by now". Really? I went through that bottle in 8 days. I called my GP and made an appointment, figuring that I could talk to her and get someone to listen to me about the proper way to taper that drug. She agreed that I was right, but said that she would not take over tapering that drug for me. She's just not comfortable with that. I don't see what the problem is here. I am trying to do it safely and I can do it myself, but I do need someone on the same page. She agreed to give me a refill though until I can talk to someone at the Rheumatologist's office. They should have called and discussed it with me before only refilling the 5 mg's per day. They can't just make that decision based on where they think I should be with the taper! Idiots!

Mom
We sound very alike in our attitudes. Yes 3 months is a bitter pill to swallow but I've been on the wretched things for 38 months so in the grand scheme of things it's not disastrously bad. A count of anywhere between 30 ( too symptomatic below that) & 120 will do me. I know it'll drop at the slightest hint of an infection be it viral or bacterial but always comes up again afterwards.

I have ITP and also on promacta. I'm on 50 mg. This is my 3rd month now. I curious is promacta working for you?

mrsb, can they prescribe 25mg+12.5mg (=37.5) for one day, then alternate 37.5 and 25 (=31.25 avg per day)? Seems like that would make for a more level dose per day. Let me explain.

When I tried 50/skip/skip (=16.6mg avg per day) counts went nonlinear/unpredictable with a count of 56.
When I tried 25/25/skip (=16.6mg avg per day) count stayed linear/predictable with a count of 91.

When you do 50/25/25 (=33.3mg avg per day) the two days of 25 may be causing the problem.

Hal
I think you may well be on the right track. I'm going to stick to the plan the next 4 weeks till I go back to clinic and am going to ask if the 12.5mg tablets are available in the UK . They haven't been mentioned at all by my haemo so if they are I bet they are expensive, which will not bode well for our ailing NHS. They are however mentioned in the British National Formulary as being imported from the USA with no indicative price available . I note that in the USA there is a paediatric liquid available which to me would be a brilliant way of dose adjusting but it does not appear to be available over here.

I have e mailed the company who manufactures the UK brand asking about the feasibility of cutting tabs in half.

Apantoj1
It would appear to be working I just need to find the correct dose.

Sandi
I am rendered speechless. Idiots indeed

mrsb04 wrote: Mom
We sound very alike in our attitudes. Yes 3 months is a bitter pill to swallow but I've been on the wretched things for 38 months so in the grand scheme of things it's not disastrously bad. A count of anywhere between 30 ( too symptomatic below that) & 120 will do me. I know it'll drop at the slightest hint of an infection be it viral or bacterial but always comes up again afterwards.

True, definitely 3 months compared to 38 months is not significant overall. The little pause can give your adrenal glands more time to fluff up and get used to working a bit harder than they have been. Probably a good thing

I'm the same on my range of comfort. Above 120 and I'll panic and below 30 makes my monthly bleeds unsustainable. May your next counts be in the golden range!

Sandi wrote: I wish I had your doctor, MrsB. My Rheumatologist decided last year that she wanted me to get off of 15 mg's and get down to 7 or 10 permanently. I agreed and began a very slow taper. I am down to 12.5 which I thought was good. She had been prescribing 5 mg's and 1 mg doses every month. I was taking it slow since I've been on steroids since 2006.

She up and went on maternity leave and I called to have my script refilled. When I went to pick it up, they would only refill the 5 mg's at one pill per day. I was like WTH! My pharmacist who is basically a friend said that she called about it and they said, "Oh she should be off of that by now". Really? I went through that bottle in 8 days. I called my GP and made an appointment, figuring that I could talk to her and get someone to listen to me about the proper way to taper that drug. She agreed that I was right, but said that she would not take over tapering that drug for me. She's just not comfortable with that. I don't see what the problem is here. I am trying to do it safely and I can do it myself, but I do need someone on the same page. She agreed to give me a refill though until I can talk to someone at the Rheumatologist's office. They should have called and discussed it with me before only refilling the 5 mg's per day. They can't just make that decision based on where they think I should be with the taper! Idiots!

Yikes! I can't believe they arbitrarily hacked your dose down without discussing how the taper was going. That many years on steroids is going to need a looooooooooong sloooooooooow taper. Getting down to 12.5 sounds like you are making good progress. Hang in there and I hope they get your script sorted out.

I hope promacta will work for you. I'm thinking of an option of slpennectomy. I've had ITP for more than 20 years. I'm afraid I'm running out of treatment option. I'm currently on promacta @ 50mg a day. Today I have petechia and blood blister which are signs of bleeding. It scares me every time I have symptoms.
I recall my hema told that if promacta won't work, splenectomy will be an only option. I'm not so sure if this is the route to take. Thank you for sharing your story

Sandi,
As for the Prednisone dose - I had my hemo write an order for 200 ea 10mg, 5mg, and 1mg and paid for it without going thru insurance (cost was $125 and insurance did not have the option of saying no) I agreed to only take it as my hemo prescribes and do not have to keep going back to the pharmacy. I would ask your rhumy to see if she/he would do that for you.

A couple of years ago I did the same with 20mg, 10mg, 5mg and 1mg - I don't remember the cost sorry.

Last week, during a discussion regarding dosing, in a reply to Hal9000 I wrote I have e mailed the company who manufactures the UK brand asking about the feasibility of cutting tabs in half..
Today I received the following reply

"Thank you for your enquiry regarding Revolade® (eltrombopag), specifically whether the tablets can be cut in half.
Revolade tablets should be swallowed whole, with some water. The tablets should not be cut or split in half."

So what's the plan? Split the tablets and lie to the nurse, errr ahhh I mean, lie to the consultant that it is ok to do?