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Promacta questions 5 months 3 weeks ago #72163

  • tabetha7
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  • Diagnosed with ITP in 2020; In remission from aplastic anemia and pnh (how lucky can one girl be? - lol ); I teach special education in a private Christian school; I have been in the education field in one way or another for over 25 years.
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Hi!  I am currently taking 75 mg Promacta and am going down to 50 mg on my dosage.  I have read how people titrate down by taking 75 mg three to four times a week and 50 the other days and then after a while taking more of the 75 mg away until it is only 50 mg dosage.  My hematologist said that it is not necessary to do this.  I was wondering if people who have lowered their dosage could please share with me your experiences.  Also, I have had a lot of fatigue and muscle/joint pain, as well as some nausea.  Has anyone else experienced the muscle and joint pain and did it ever go away? Did lowering your dosage help?  I am hoping that it will go away when I get my dosage down to 50 mg, or it will at least be a lesser amount of it to deal with each day.
Thank you for any input that you can give me.

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Promacta questions 5 months 3 weeks ago #72164

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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Do whatever you feel happiest doing. Your haematologist should be advising not dictating. 
My  experience with Eltrombopag is the higher the dose the worse the side effects are. 

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Promacta questions 5 months 3 weeks ago #72165

  • tabetha7
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  • Diagnosed with ITP in 2020; In remission from aplastic anemia and pnh (how lucky can one girl be? - lol ); I teach special education in a private Christian school; I have been in the education field in one way or another for over 25 years.
  • Posts: 6
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Thank you, mrsb04!  I see that you have been in healthcare for quite some time.  In your experience, what ways have you seen Promacta dosages decreased? I am afraid if I just go straight to 50 mg all the time that I will have a big drop in my counts, but I would like to get the dosage down as quick as I can to get rid of these side effects.

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Promacta questions 5 months 3 weeks ago #72166

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
  • Posts: 1992
  • Karma: 7
  • Thank you received: 570
tabetha7
As a nurse I've seen many different tapers of many different medications but  the only experience I have of Eltrombopag  is my own. I went from 50mg to alternating 50mg with 25mg then 25mg x2 days followed by 50mg on the third day. However after a  virus induced relapse I went back up to 50mg a day then ended up on 75mg a day a couple of years ago.
Joint pains, very poor sleep pattern and iron deficiency anaemia were the worst side effects. 

After my 2nd Covid jab (Pfizer) last summer  my count dropped to 14 and would not come back up so I stopped Eltrombopag and  against my better judgement went back onto Romiplostim (N Plate) . The side effects of that are awful too in my case. It stopped working after my 3rd dose of Pfizer with a count of 6  so I want back onto Eltrombopag started at 25mg  just before last Christmas and within a month was back on 75mg. Joint pains are back as is appalling sleep pattern. Taking iron supplements from the day I went back on it. 
 I've had my 4th Pfizer today. Have bloods booked for next Friday then  seeing  haematologist on 28th.
 Quite frankly I do not care what my count is I will be informing her I will not stay on 75mg/day any longer. 
When it gets to the stage that the side effects are worse than the condition being treated then the treatment reduces/stops is my new mantra and I'm sticking to it.

Gone are the days when doctors were 'god'. Over here in the UK our ITP Association  has produced a shared care decision tool kit.
I've copied a section for you  (see below). I've also sent you a private message which you should be able to access at  top right of the grey area 


What is shared decision making?
Shared decision making is when clinicians and patients work together in collaboration, putting people at the centre of decisions about their own treatment and care.
Shared decision making also supports people to develop the knowledge, skills, and confidence they need to manage and make informed decisions about their own health and health care.
Why shared decision making matters
For care to be enabling, the relationship between clinicians and patients needs to be a partnership rather than just the health care professional directing.When patients and clinicians make decisions together 
Both the clinician and patient understand what is important to the other
Patients feel empowered to make informed choices and their treatment and care plan takes account of their perspective
Health and other care professionals can tailor the care or treatment to the needs of the individual

The importance of shared decision making mechanisms in ITP management and careFor ITP patients:
The care and support you receive should consider your needs and preferences
You have the right to be involved in discussion and make decisions about your treatment and care, together with a healthcare professional
You should feel empowered to clarify issues relating to your treatment and care with health care professionals
Your circumstances may change, so it is important that your treatment plan is continuously reviewed and a joint decision is taken on the future approach

   
The following user(s) said Thank You: delta809

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Promacta questions 5 months 3 weeks ago #72167

  • tabetha7
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  • Diagnosed with ITP in 2020; In remission from aplastic anemia and pnh (how lucky can one girl be? - lol ); I teach special education in a private Christian school; I have been in the education field in one way or another for over 25 years.
  • Posts: 6
  • Thank you received: 0
Hi, mrsb04!
Thank you so much for sharing your experience with me. Everything you shared is very helpful. I am so sorry you are dealing with so many side effects. I understand how you feel about stopping when the side effects get worse than disease itself. I will be praying that your hematologist works with you in reducing the dosage or finding something else to try.  Thank you again for sharing all of the information with me. 

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Promacta questions 5 months 3 weeks ago #72168

  • tabetha7
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  • Diagnosed with ITP in 2020; In remission from aplastic anemia and pnh (how lucky can one girl be? - lol ); I teach special education in a private Christian school; I have been in the education field in one way or another for over 25 years.
  • Posts: 6
  • Thank you received: 0
mrsb04,
I can’t seem to get back to your private message - I am still learning this site and I am not the most tech savvy person there is. Lol. Do you know where I need to look to find the message? I saw it and opened it but then went to read your response and I can’t find it again. 

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Promacta questions 5 months 3 weeks ago #72169

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
  • Posts: 1992
  • Karma: 7
  • Thank you received: 570
tabetha

Click on your name at top left where it says 'Welcome'. That will take you to your profile where you can access your messages and go to your in box. 

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Promacta questions 5 months 18 hours ago #72209

  • Margaret k
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Hello tabetha, i haven't posted for ages but my positive story of reducing from 7x75mg eltrombopag to my current 5x25mg is one of  very gradual reductions over 6 years.
In 2012 I responded well but in 2015  I gradually lost respose on 50mg.
After trying rituximab and romiplostin to  no avail , as a last ditch attempt I went on 75mg7x a week and thankfully my count began to rise. Since then I have gradually dropped the dose and the days. My count last week was 167 on 6x25mg so I am now on 5x25mg with a check in 3 months.
I have had no significant side effects until now except like Mrs B low ferriten so I take an iron supplement. However lately I have found that the pill seems to stick in my oesophagus and gives me indigestion.As i also have some acid reflux i think I better get that investigated. It may not be the fault of eltrombopag.

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Promacta questions 5 months 18 hours ago #72210

  • Margaret k
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Also Tabetha I only reduced my dose by 25mg a week every 6 weeks or so. I think sudden reductions cause crashes.

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Promacta questions 4 months 4 weeks ago #72214

  • poseymint
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Tabetha- What are your platelet counts? My thoughts are if your counts are above 100 closer to 200 then you might want to drop your dose down to 50mg all at once. If your counts are lower, below 100 then taper down from 75 to 50. Just a thought. You do whatever you feel is right and safe for you. Perhaps 50mg 4x a week and then get your counts checked?

I have been on Promacta four times over the years, my counts were very steady around 50k when I was on it. I stopped each time due to side effects (cognitive issues like memory lapses). Several times I lowered the dose from 50mg to 25mg. I didn't taper, I just dropped the dose down like your doctor suggested. For me, it was fine to do it that way. My counts slowly went down but not too far. When I quit taking Promacta, I always just stopped I didn't taper. Again my counts drifted down over a period of a couple weeks. thats my experience, yours could be different. good luck!

And thank you Mrs B for the info on how doctors/patients are now sharing decisions. I love that, its so important and empowering. Things are changing for the better. My doctor's notes are now being posted to the patient portal so we can read what is written about us right away after a visit. I really appreciate the transparency although sometimes my impression of what was said was different from what the doctor remembered. hah I try to not take what is written too seriously and just am glad I get to see the notes. example: One doctor wrote that I had psoriasis and another doctor wrote I had "weird tingling in my feet" what? I have never had either of those problems!
The following user(s) said Thank You: mrsb04

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Promacta questions 4 months 4 weeks ago #72215

  • mrsb04
  • Away
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
  • Posts: 1992
  • Karma: 7
  • Thank you received: 570
Hi poseymint

We too have access to our records. I agree with you, I sometimes read things and think 'no'. I  have a note book I make a point of using at every appointment I have so I have a contemporaneous record to refer to. It's come in handy more than once over the years.

Tabetha did you manage to read that PM I sent you?

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Promacta questions 4 months 3 weeks ago #72228

  • tabetha7
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  • Diagnosed with ITP in 2020; In remission from aplastic anemia and pnh (how lucky can one girl be? - lol ); I teach special education in a private Christian school; I have been in the education field in one way or another for over 25 years.
  • Posts: 6
  • Thank you received: 0
Thank you, Margaret K, for your response.  I am currently doing 75 mg every other day and 50 mg on the other days - down from 75 mg seven days per week.  My doctor said that I did not need to taper; however, after reading so many stories on this site, I felt it best to taper.  I go back later this month for CBC, so I guess I will see how it is going at that point.  If I have to go back to 75 mg everyday, I will try your technique of tapering more slowly.  I don't think I can stand 75 mg seven days a week for an extended period as the fatigue and joint/muscle aches are such an issue.  Thank you again for your input.

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Promacta questions 4 months 3 weeks ago #72229

  • tabetha7
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  • Diagnosed with ITP in 2020; In remission from aplastic anemia and pnh (how lucky can one girl be? - lol ); I teach special education in a private Christian school; I have been in the education field in one way or another for over 25 years.
  • Posts: 6
  • Thank you received: 0
Hi, poseymint!
My last count was 122 up from 89 the previous month.  I am currently trying 75 mg every other day and 50 mg on the other days to see how that goes.  I go back later this month for CBC and I guess I will see how things are going then.  I am praying that they remain stable or at least drop only minimally.  My doctor said that there was no need to taper, but I have read so many stories of counts crashing that it scared me and I thought I had better take it fairly slow.  The 75 mg per day has been a bear as far as side effects for me - major fatigue and joint/muscle pain (sometimes so bad that it was difficult to move around).  Thank you for sharing your experience with me. I am so sorry that you had the memory lapse issues - I am sure that was scary.

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Promacta questions 4 months 3 weeks ago #72247

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
  • Posts: 1992
  • Karma: 7
  • Thank you received: 570
Tabetha 

I have just emailed you the document 

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Promacta questions 3 months 1 week ago #72340

  • chalcomb1117
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Tabetha,
I don't get on here often and just saw your question.  I have had ITP for 12 years now and my counts swung wildly for the first several years.  Had to finally start meds 3 years ago and I'm currently on 50 mg of Promacta, and like you, had the crazy side effects.  However, about 8 months ago I started taking (in addition to the Promacta)  Papaya Leaf 400 mg and then ended up on 800 mg per day.  It took a while, but my counts have been stable (above 100) for about 4 months.  It makes me feel so much better, minimal aches and muscle pain, and only a bit of sinus issues.  I am hoping to decrease my Promacta even further to 25mg in the near future.  I hope this helps or at least is an encouragement.

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Promacta questions 2 months 2 days ago #72401

  • Margaret k
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After dropping from 6x25mg to 5x25mg  3 months ago my  count went down from 167 to 125 so i'm staying on 5x25 for the present . I'm happy with that as at my age of 75 you never know when you might need your platelets. I've had 3 surgeries in the last 4 years. 
20mg of omeprazole every other day has relieved my reflux.

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