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TOPIC: Started Promacta February 2017

Started Promacta February 2017 1 year 3 months ago #63722

  • mrsb04
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I don't think so on 3mg a day. It's well below the physiological dose and I've had high CRPs when on 20mg a day

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Started Promacta February 2017 1 year 2 months ago #63986

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Count is 41 today. Looks like 50mg Eltrombopag daily is working, I have never been this stable.
Started my very gentle Pred taper with 3mg/3mg/2mg for a fortnight then dropped to 3mg/2mg.
Retrospectively starting a taper at the beginning of the World Cup may not have been my brightest idea. My stress levels rose as England progressed to well beyond my expectations. I nearly upped my dose again after the quarter finals but stuck with it, however I was so exhausted by the end of last week I've decided to stay on 3mg/2mg for another month to give my adrenals time to get over all the excitement.

NB :- for those concerned about the effect of alcohol on platelet counts, having spent most of the last month in pubs drinking copious amounts of ale whilst watching football matches I can assure you it has had no effect whatsoever on my platelet count (or my LFTs).

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Started Promacta February 2017 1 year 2 months ago #63991

  • Sandi
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:laugh: :laugh: :laugh: Amusing post!
Great news on the counts!

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Started Promacta February 2017 1 year 2 months ago #63993

  • Hal9000
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Ha. If your counts and LFT aren't being affected, you're definition of 'copious' must be different than mine. Maybe double your ale order and get back to us again on next check. Remember when it was December 31st on 1999? Do that !

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Started Promacta February 2017 1 year 2 months ago #63997

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Hal
The least I had during any one match was 3 pints. If England were involved it was probably more. I did a gallon the day we won our quarter final.

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Started Promacta February 2017 1 year 1 month ago #64220

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Count still holding, 41 again. Another tiny drop in Pred dose from tomorrow.

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Starting Promacta tonight. 1 year 1 month ago #64224

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Great you've found something that works without side effects! Thats what we are all looking for. How are you feeling with the pred taper- hows the energy level? Body and joint aches, fatigue, sleeping a lot is what I remember. Going to the gym would exhaust me so much that I felt weak and shakey. So for me exercise was too much, just had to be very gentle, go to bed early and takes naps when I could.
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Starting Promacta tonight. 1 year 1 month ago #64225

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Pred taper going remarkably well this time. Still get tired at times and have to rest but other than that no ill effects. Going very very slowly certainly helps.

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Starting Promacta tonight. 1 year 1 month ago #64226

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Glad you are doing well with the very slow taper. Prednisone is really awful stuff to get off of. Good news on your stable platelet counts! I had to laugh about your football posts-I get the same way about baseball.
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Started Promacta February 2017 1 year 1 month ago #64234

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Yahoo, very nice count. Wonderful that you are able to slowly drop your prednisone without triggering any crashes. We'll have that off the pred party for you yet!
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Started Promacta February 2017 1 year 1 month ago #64239

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Another 41?
Ok, with the exact same number your doctor may catch on to any cooking of the books. Be careful. I recommend making slight variations. Go down for awhile, then up for awhile.

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Started Promacta February 2017 1 year 1 month ago #64245

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Slight variations to what Hal?

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Started Promacta February 2017 1 year 1 month ago #64247

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I was just kidding Anne. If one is making up one's counts, by 'cooking the books', one should have variations in the count number so as not to look contrived.

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Started Promacta February 2017 1 year 1 month ago #64251

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Why on earth would someone be so stupid as to 'cook the books' ?
42,42,41,41 are my last 4 counts, doesn't indicate contrived to me it indicates stability after 4 years of trial and error with 6 different medications.

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Started Promacta February 2017 1 year 1 month ago #64274

  • Hal9000
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mrsb04 wrote: Why on earth would someone be so stupid as to 'cook the books' ?

How about an ego-maniac - for no other reason than to not look bad? Note that HAL9000 in the movie 2001 was just a machine with no ego. But then again, he killed the crew (they would interfere) so maybe he was an egomaniac ! !

42,42,41,41 are my last 4 counts, doesn't indicate contrived to me it indicates stability after 4 years of trail and error with 6 different medications.

It's like 'live and learn' with ITP, heh? Do you suppose you finally got to a low enough dose of Pred to not affect ITP?

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Started Promacta February 2017 1 year 1 month ago #64285

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I thinks so Hal. I'm well below the physiological dose so doubt it's having any affect on my counts now . Taking 3mg on Mondays and Thursdays and 2mg the rest of the days. This is lowest dose I've ever got down to . Will stay on it for another couple of weeks than go to 2mg a day for a while. I've got to take it slowly otherwise I'll be in a mess. My adrenals do not take kindly to anything other than tiny reductions.

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Started Promacta February 2017 11 months 2 weeks ago #64841

  • mrsb04
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Platelet count up to 65 on 50mg Eltrombopag daily.
Down to 2mg a day of Pred 3 weeks ago and feel worn out. Such a tiny drop from previous regime (3mg on Mondays and Thursdays and 2mg the other 5 days). Haemo suggests staying on 2mg daily for 2 months before attempting a further reduction. Which I'll do as need to keep my adrenals happy.
I had my early morning cortisol levels checked a year ago and they were spot on (508 nmol/L = 18.41 µg/dL). At that stage of my taper I was taking 3mg/3mg/4mg.
GP did warn me at the outset of this ITP lark that if I stayed on high doses too long I may suffer from irreparable adrenal damage and would end up on a life long maintenance dose.
Fingers crossed it's just my system adapting to the fact that our UK heatwave is finally over and winter is on the horizon.

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Started Promacta February 2017 11 months 2 weeks ago #64845

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I wish your GP was my doctor. My Rheumatologist is assuring me that I will have no problems getting off of Prednisone quickly after 12 years on it.

I went to an Endo years ago to have the ACTH done and he said that he couldn't do the test while I was on steroids. We only have two Endos around here and they both stink.
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Started Promacta February 2017 11 months 2 weeks ago #64856

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I bet your Rheumatologist has never taken Pred.
Unfortunately she is not my GP anymore, much to my bitter disappointment, she recently retired.
My new one, although very young, will be ok I think. I've only met him twice but he seems genuine and honest.
The first time I saw him he said "please tell me you are not here about ITP I know nothing about it". I went about a hip problem and after an extremely thorough examination and x ray said “I have no idea why is wrong with your hip so lets get you off to a physio who will no doubt work it out within 5 minutes.”
It actually took her about half an hour but I'm almost cured following her plan and advice.

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Started Promacta February 2017 11 months 2 weeks ago #64866

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What was wrong with your hip? I have hip problems too but haven't looked into it since my experience is to be passed around like a hot potato for two years, then end up with no answers anyway.

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Started Promacta February 2017 11 months 2 weeks ago #64883

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Piriformis syndrome.

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Started Promacta February 2017 10 months 3 weeks ago #65084

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Count now 96. Am starting to get twitchy. I don't want it any higher.

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Started Promacta February 2017 10 months 3 weeks ago #65088

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Hooray for promacta working! Interesting how we all have our comfortable numbers.

96 for me is too low. I like it when my platelets are in the high 100s.

At what number do you start feeling symptoms of ITP?

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Started Promacta February 2017 10 months 3 weeks ago #65089

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Asymptomatic apart from accidental bruises around 30. Once below that start to feel cold. Below 20 tired with unexplained bruises, below 10 blood blisters in mouth. I'm happy with a count 50 -80. The thought of big, juicy immature platelets circulating my body makes me uneasy.

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Started Promacta February 2017 10 months 2 weeks ago #65094

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Have had a very stressful summer . Hysterectomy in June for early ca,successful.
Broken humerus in sept very painful, kidney and ureter out in October for incidentally found on CT scan different ca! Despite all that and disturbed routines re eating, sleeping and taking pills ,on 4x50 mg and 3x25 mg eltrombopag count has rocketed from 175 prior to my last operation 3 weeks ago to 224 today . So I will be coming down further this week. Maybe normality in something is possible after this nightmare year.

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Started Promacta February 2017 10 months 2 weeks ago #65098

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Looks like your medicine is working! Good news finally. I wish you well and my prayers are with you.
Allie2
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Started Promacta February 2017 10 months 2 weeks ago #65101

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What an awful summer for you Margaret. I hope you are well on the way to recovery now. Good luck with dropping your eltrombopag dose.

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Started Promacta February 2017 9 months 3 weeks ago #65285

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Count still in the 90s on 50mg Eltrombopag & 2mg Pred daily.
Over the last month I've been losing my appetite which isn't ideal for someone with a PMH of anorexia. I've also been struggling to sleep.
Good chat with haemo this morning. Upshot drop Eltrombopag to 25mg/50mg alternate days & stay on 2mg Pred.

I asked about 12.5 mg tablets as think taking same dose daily more sensible because my counts have never been as stable on alternating doses.
Needless to say they are not available despite the UK Electronic Medicines Compendium recommending 12.5mg tablets when reducing doses and the British National Formulary includes them.

I previously e mailed Novartis to ask if I could cut tablets in half because Eltrombopag has a long half life so even if I didn't cut the tablets exactly in half I'd still be getting 75mg over 2 days.
The reply was reply no. I have just emailed them again asking the rationale for film coating the tablets. I await their response with bated breath says she sarcastically.

An interesting note aside NICE (National Institute for Clinical Excellence) has changed its stance on splenectomies this month. Previously it used to say 'has had a splenectomy or where a splenectomy is contraindicated " but now states "authorisations for both romiplostim and eltrombopag have been extended to include patients who have not had splenectomy".

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Started Promacta February 2017 9 months 3 weeks ago #65289

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No reply from Novartis yet..poor customer service

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Started Promacta February 2017 9 months 3 weeks ago #65292

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mrsb04 wrote: An interesting note aside NICE (National Institute for Clinical Excellence) has changed its stance splenectomies this month previously it used to say 'has had a splenectomy or where a splenectomy is contraindicated " but now states "authorisations for both romiplostim and eltrombopag have been extended to include patients who have not had splenectomy".


That is GREAT!

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