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TOPIC: Started Promacta February 2017

Started Promacta February 2017 2 years 5 months ago #58778

  • mrsb04
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Thank you Sandi for doing that .
Count is 96 this week, so responded with in 4 days to the increased dose Hal.
Am continuing with steroid taper and promoted to fortnightly bloods, back to clinic in 6 weeks.

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Started Promacta February 2017 2 years 5 months ago #58782

  • Hal9000
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Oh my, from 12 to 96 in four days? What a pleasant surprise. How to explain? LOL, is it too much gardening, or too little?

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Started Promacta February 2017 2 years 4 months ago #58878

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Count 181 yesterday which scares me so put myself back to 25mg a day and continuing with steroid taper. Just messaged my consultant to inform her to which she replied "You can do my job Anne, good decision".

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Started Promacta February 2017 2 years 4 months ago #58883

  • momto3boys
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mrsb04 wrote: Count 181 yesterday which scares me so put myself back to 25mg a day and continuing with steroid taper. Just messaged my consultant to inform her to which she replied "You can do my job Anne, good decision".


Wooo, that's a big one. It's great that you are having such a nice response, but I'd be decreasing too. Good call. It's kinda funny how the high ones are just so much scarier than the low ones :lol:

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Started Promacta February 2017 2 years 4 months ago #58891

  • Margaret k
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After 3 weeks reducing to 75mg 5x week and 50mg 2x week my count has stayed stable around 105. If I am still stable next week may do another day at 50mg. I know my body doesn't like sudden changes and after experiencing really low counts I am content to be above 50. Consultant thinks it is safer for me to have some 'wriggle room' in case of a fall so I am happy to go slowly . Glad to say the cough seems to have gone, haven't had to use the nose spray for a week.Am at present enjoying a lovely week on holiday in Cornwall. Great to have been able to fly here from Scotland and leave the cold behind. Am going back to taking pills during the night this week in case later dinners affect absorption.

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Started Promacta February 2017 2 years 4 months ago #58892

  • Sandi
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Mrs. B - that's funny - "You can do my job". My Hemo got to that point with me too. If the 25 mg's doesn't do it, maybe you can try an alternate day dose.

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Started Promacta February 2017 2 years 4 months ago #58895

  • mrsb04
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Sandi
My thoughts exactly.
My current plan is
Maintain a count > 30 (as too fatigued and symptomatic if lower) by tweeking Promacta dose whilst continuing pred taper.
I want off the Pred more than anything. I need a minor op for a problem that has plagued me since my first pregnancy 36 years ago. It's been cancelled twice as counts too low but what is another few month's wait after all that time.
Anne

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Started Promacta February 2017 2 years 4 months ago #58896

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What count do you need for the surgery?
I was reading about all of the tapers on this thread. My Rheumatologist is expecting me to taper 1 mg a month after being on Prednisone since 2006. I've been on 15 mg's for years. I got down to 13 mg's, but have not gone any lower yet. I have too many stressful situations going on right now, not to mention that a taper causes more pain than I have now. Many days I'm tempted to take 50 mg's just to have some relief. She doesn't get it and it frustrates the hell out of me.

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Started Promacta February 2017 2 years 4 months ago #58898

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I need a platelet count of at least 50 for the surgery which I will be able to do tweeking Promacta dose when I'm ready.
I'm down to 6.5mg Pred a day.
The lowest I've ever managed to taper to so far is 3mg a day when I was N Plate but count crashed to 6 when that stopped working so Pred increased again to 20mg. In retrospect I wish I'd done Promacta instead of N Plate, I have much more control now.

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Started Promacta February 2017 2 years 4 months ago #58917

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Anne, you probably know this already, but if you are adrenal insufficient, and depending on the nature of your surgery, you may need extra prednisone to protect you from the added stress of surgery. You may want to discuss this with your doctor. Good luck with it.

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Started Promacta February 2017 2 years 4 months ago #58955

  • mrsb04
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Platelet count 59 on 25mg/day Promacta and 6.5mg/day Pred which I will be dropping to 6mg a day on Monday.

Rob thanks for that, I did discuss this with surgeon pre the op that was cancelled due to platelets crashing to 6 when Nplate decided to stop working. IV hydrocortisone was mentioned which I will explore more fully when I'm ready to go ahead with the surgery.
I'm realistic enough to realise I may never get off Pred completely after 3 solid years of the wretched things and may require a maintenance dose to support my battered adrenals. Anything less than 5mg/day should be covered by my biophosphonate therapy but I would like to get lower than that. I've made it down to 3mg/day before (very gentle taper) but never got the opportunity to go lower as too symptomatic from aforementioned platelet crash which resulted in going back up to 20mg/day.

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Started Promacta February 2017 2 years 4 months ago #58961

  • Hal9000
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Could you explain to me Anne? When one's counts crash while tapering/transitioning from steroids and to Promacta, seems like one would increase the Promacta dose rather than increase the steroid dose (to 20mg)? Then taper the Promacta dose if that eventually proved to be too much.

A totally unrelated question. You mentioned in a old thread about a fellow Fostamatinib trial patient had responded to the drug. Do you recall if that person responded well to steroids? Are you a strong or weak steroid responder?

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Started Promacta February 2017 2 years 4 months ago #58969

  • mrsb04
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Hal
This was pre promacta when the N plate stopped working. Steroids were increased as a rescue remedy to abate symptoms. It's very difficult to nurse with blood dripping from one's nose. I do respond to pred but only at a dose of 20mg/day or higher. I'm not prepared to stay on a dose this high for long periods which Is why I've tried so many different treatments over the last 3 years , unfortunately I've lost response to everything I've tried.
I'm hoping that Promacta will be the answer but only time will tell.

The other person on the trial was refractory to all treatments including splenectomy.

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Started Promacta February 2017 2 years 4 months ago #58973

  • Hal9000
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Ok. I see that my question was poor. Hopefully this one will be better.
If one has always taken steroids and NPlate concurrently, how does one know the difference between 1) NPlate loss of response, 2) the loss of steroid contribution in the response, when one tappers steroids? Seems like the only way to know is to increase the dose of NPlate when counts collapse. That is, go to max NPlate dose for a couple of weeks. Is the problem that IVIG is not available as a bridge to relieve symptoms in the interim?

You might recall that I've openly wondered in the past if you have antibodies to TPO. Since you haven't had IVIG in the past, and it's response is unknown, the question is intriguing to me. Would it be fair to say that (in the past) it takes a week or more for your counts to ramp up with a 20 plus mg dose of steroids? Or, do counts rise quickly at that dose level?

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Started Promacta February 2017 2 years 4 months ago #58980

  • mrsb04
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Hal
I had been on the same dose of Pred (3mg/day) for 2 months when the N plate stopped working. 20mg of pred took my count from 6 to 117 within 3 days and up to 293 within a week, which is frighteningly high for an ITP patient in my opinion.

I was never very happy taking N Plate. My counts swung about a lot.To me it seems more logical to take something daily rather than weekly to avoid peaks and troughs in counts. Plus dose manipulation is easier.

As for IVIg I want to save that option for absolute emergencies as it is not without risks.

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Started Promacta February 2017 2 years 4 months ago #58986

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Oh, 117 in 3 days sounds like a really nice steroid response. That would be like a full switch-off of platelet destruction.

You know, as I read through old comments, it seems as though those who respond well to Rituxan often had a previously strong steroid responses (GPIIb-IIIa antibodies). Maybe it is worth considering one day. While on Promacta too to avoid count crash symptoms.

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Started Promacta February 2017 2 years 4 months ago #58992

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Yes it is a good response but with osteoporosis I cannot stay on high dose steroids. Not that anyone would want to as they have so many side effects

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Started Promacta February 2017 2 years 3 months ago #59188

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Count 168 after 2 weeks of 25mg/50mg Promacta and 6mg Pred. Too high for my liking so dropping to 25mg a day Promacta and 6mg/5mg Pred. Consultant said "oh just go straight down to 5mg Pred, you'll be fine" I will of course ignore her advice and follow my GP's tapering regime.

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Started Promacta February 2017 2 years 3 months ago #59194

  • Hal9000
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I emailed your consultant and asked her to say that. Hope you don't mind. :P

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Started Promacta February 2017 2 years 3 months ago #59390

  • mrsb04
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12 days ago I sustained a minuscule scratch to my shin & within 24 hours had horrendous cellulitis from my toes to above my knee, a week on Doxycycline & off sick. I hate steroids !!!
Had dropped to 25mg/day of Eltrombopag but knew count had dropped as covered in bruises within 48hours so upped 25mg/25mg/50mg with Pred on 5.5mg a day.
Fortunately all healed now and went back to work on Sunday night sending bloods to lab as soon as I got there. Count was was 61 which is exactly where I want it to be but of course have no idea if this is a true reflection due to the above.
Have dropped Pred to 5mg a day from yesterday but undecided what to do with Eltrombopag dose.

I have tried unsuccessfully to upload a photo of my leg

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Started Promacta February 2017 2 years 3 months ago #59395

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mrsb04 wrote: 12 days ago I sustained a minuscule scratch to my shin & within 24 hours had horrendous cellulitis from my toes to above my knee, a week on Doxycycline & off sick. I hate steroids !!!
Had dropped to 25mg/day of Eltrombopag but knew count had dropped as covered in bruises within 48hours so upped 25mg/25mg/50mg with Pred on 5.5mg a day.
Fortunately all healed now and went back to work on Sunday night sending bloods to lab as soon as I got there. Count was was 61 which is exactly where I want it to be but of course have no idea if this is a true reflection due to the above.
Have dropped Pred to 5mg a day from yesterday but undecided what to do with Eltrombopag dose.

I have tried unsuccessfully to upload a photo of my leg


Anne, that sounds pretty miserable! The count of 61 sounds pretty good though, so hopefully you can just go back on your steroid taper as scheduled and maybe keep the Eltrombopag constant for now until the next count. It's tricky managing two medications, especially with a bump in the road like you had!

My youngest son is prone to bouts of cellulitis from just about anything, it's really awful. Mosquito bite, boom, cellulitis. He scratched a little too aggressively, boom, cellulitis. We used to run to the pediatrician every time, but now we just draw a circle around the red, hot area (to see if they expand) and give him Benadryl. Luckily that seems to take care of most of them for the moment. Maybe we'll get lucky and they will decrease as he ages.

Hope you are feeling better overall and back into your normal routines!

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Started Promacta February 2017 2 years 3 months ago #59396

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My Hema wanted me get off Prednisone no ifs ends or buts.
So I bit the bullet got off and yes I did suffer some nasty headaches but my life is back to normal. NPlate has very minimal affect on my life except for the cost.
If you are having good response to Eltromopag keep it the same then get off prednisone with slow tapering then reevaluate your options.

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Started Promacta February 2017 2 years 3 months ago #59398

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jayinchicago wrote: My Hema wanted me get off Prednisone no ifs ends or buts.
So I bit the bullet got off and yes I did suffer some nasty headaches but my life is back to normal. NPlate has very minimal affect on my life except for the cost.
If you are having good response to Eltromopag keep it the same then get off prednisone with slow tapering then reevaluate your options.


Jay, if you will read back in her thread, you will see that Anne is working on a prednisone taper to do just that. She's had enough steroids too :)
I think October is when she'll be free after the long, slow decrease (following a protocol for a very slow taper). Anne, you should have a party when you finally get off of them!
The following user(s) said Thank You: mrsb04

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Started Promacta February 2017 2 years 3 months ago #59401

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Mom
I think I may well be going out and buying several bottles champagne if I finally get off them. My dearest friends are owed a party for all the support they have given me over the last 3 years.
I'm currently dropping 0.5mg a fortnight. So far I haven't had any disastrous withdrawal effects this time just minor ones. About 3 days after dose drop I'm very tired, anorexic and muscles ache for about the next 4 days then I feel OK so I'm cautiously optimistic. I know if I take it very gently I can get to 3mg so the final push will be the telling factor.
Going see my GP next week for a steroid tapering update discussion. She has warned me I may never get off them completely but after what I've just been through I'm fervently hoping my adrenals wake up fully.

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Started Promacta February 2017 2 years 3 months ago #59402

  • Hal9000
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A 25/25/50 for ~10 days brought you out of a crash? That's amazing!
Is the Doxycycline responsible for the crash?
So what are you thinking at this point? Continue the 25/25/50 until counts climb up to say 80, or, go back to 25 with the 61 count now under your belt?

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Started Promacta February 2017 2 years 3 months ago #59404

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Hal
Possibly be Doxycycline although medicines.org.uk state the likelihood as Rare ≥ 1/10000 to < 1/1000 and uptodate doesn't mention it at a all in it's drug induced ITP section.
Any hint of a viral infection & my count crashes. I had a tooth abscess a couple of years ago , my count crashed then too so I feel it's more likely to be the bacterial infection itself.

When ever 50mg Eltrombopag is involved my count shoots up during the second week of taking it. I'm thinking of possibly 25/25/25/50 or even that followed by 25/25/50. It's just going to be a juggling act to find the optimum dose.

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Started Promacta February 2017 2 years 2 months ago #59710

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Count holding in the 60s on 25/25/50. I'm aiming for taking 50mg twice a week so I can have set days when I take the dose rather than having to keep a sheet at the side of the bed reminding me what dose to take each day.
The champagne will have to go on hold for the planned steroid stoppage unfortunately.
After seeing GP to update her on steroid taper, by which time I was down to 5mg a day and planning to drop another 0.5mg a day, she suggested putting it on hold for a couple of weeks following my bout of cellulitis which I duly did, then dropped it to 4.5mg.
Within 48 hours I'd started getting tired, then came muscle and joint pains & no appetite & postural hypotension. . I tried to persevere but after 10 days of feeling like death warmed up I put myself back up to 5mg a day. 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.
Incidentally GP told me if I get another infection of any sort to take 20mg a day for 3 days and go straight back to previous dose. In fact she suggests that if I ever do get off the wretched things I do that in future for at least for the first year I'm off them.

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Started Promacta February 2017 2 years 2 months ago #59713

  • Hal9000
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Wow, that is such a small change making such a big difference in symptoms. I'm hoping for the best.

Yea, I've been using a calendar to keep track of a 3 day cycle too. Don't have the variety of pills yet to try 4/3, 3/4, or 2/5 splits. I am wondering if the 4/3 split and a 3/4 split may not be a measurable/significant difference. I wonder if the day of the week of a count test will make a bigger difference. Perhaps Monday being the highest for the week on a 4/3 split and Monday being the lowest for the week on a 3/4 split. Then on the 2/5 split, the day of week of test may make an even bigger difference. Ack! Probably over thinking it too much...

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Started Promacta February 2017 2 years 2 months ago #59716

  • mrsb04
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Hal
An interesting theory but I have my bloods done randomly depending on my shifts & which colleague is going to bleed me; I'm very picky about who I let shove needles into my veins.

Regarding the steroid withdrawal symptoms, Let this be a lesson for anyone else undergoing steroid taper.
Retrospectively I should have upped my pred for a quick bolus dose. If I'd been having a G.A for surgery or Sepsis I would have been given IV Hydrocortisone cover. It never entered my head that the cellulitis could have affected my taper as the antibiotics kicked in so quickly.
We live and learn

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Started Promacta February 2017 2 years 2 months ago #59719

  • Hal9000
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About the venal punctures. Is a butterfly needle preferred?

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