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Weight gain during ITP treatment 9 months 3 weeks ago #70687

  • ImPatient
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So I'm currently lowering my Promacta dose, only 2 x 25 mg per week, that's good... so far.
I had more before, and before that I had NPlate, Prednisone, Dexamethasone.
I gained about 20kg/45lbs and it seems like it won't stop. Not sure if it's because of the medication or ITP or something else, but it seemed to start at the same time as my platelets were getting too low.
Has anybody had a similar experience?
I stopped eating after 3pm and walk at least 2 hours a day (I'm in too much pain to work out). I know I can't keep this up, I need to eat more, but I don't want to become more overweight and have an additional health issue...

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Weight gain during ITP treatment 9 months 3 weeks ago #70689

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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That is a big weight gain have you had your thyroid checked out?
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Weight gain during ITP treatment 9 months 3 weeks ago #70692

  • ImPatient
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Hi Mrsb04- thanks for the suggestion. Yeah thyroid is fine. Doctors don't know either- yet. I'm 5'4/1,64m only so 185 lbs/84 kg is a bit much, especially if it keeps increasing. I did have a lot of water in my legs, sometimes I could barely see my ankles, but I doubt that the water makes up all of the 20kg. Less water now that I'm lowering my meds & no weight loss anyway.

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Weight gain during ITP treatment 9 months 3 weeks ago #70694

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Have you had hormonal levels checked. I had a very early menopause ( it started at 38). I went up 2 dress sizes very very quickly.
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Weight gain during ITP treatment 9 months 2 weeks ago #70701

  • MelA
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If your legs and feet are swelling - what about your kidneys? If they are dumping protein that causes feet/ankle swelling and so weight gain
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Weight gain during ITP treatment 9 months 2 weeks ago #70707

  • ImPatient
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Mrsb04, I'm not sure what was tested. The gynacologist recently checked if I was still fertile, and said yes, but that maybe doesn't mean that there are no changes in hormones? I'm 40, turning 41 next month, so it is possible... I'll be at the hematologist's on Monday, I'll ask if he can check.

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Weight gain during ITP treatment 9 months 2 weeks ago #70708

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MelA thanks, I'll mention that to the hematologist too. I don't know why he keeps writing slight swelling, there is a LOT of swelling, but it might also be fat. But I have really thick bumps in places where I usually don't gain weight and it feels more like water. Well... Monday I'll see him.

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Weight gain during ITP treatment 9 months 1 week ago #70747

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Mrs & Mel- Kidneys and hormones are ok. Doctor says platelet count was 144 on Monday. If it stays like this a couple more weeks (because I lowered to 2 x 25mg per week) I can take even less. I wrote to Novartis by the way, because I really want to move back to the States as soon as that is a bit more convenient. I just keep getting referred to other places to find out whether it would be covered and how long- if I already know what my insurance is etc. I don't want to move though, if I don't know whether I will get my meds if I need them. I read the info on the website too, but I don't really understand it- f.e. what does maximum savings of 15000$ mean... Promacta costs 5000-15000 a month in the US doesn't it....

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Weight gain during ITP treatment 9 months 1 week ago #70750

  • MelA
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Well that is good news on kidneys and hormones Im - sorry I can't help you with Promacta, I know nothing about it.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Weight gain during ITP treatment 9 months 1 week ago #70758

  • ImPatient
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Thanks, no problem I'll find a solution somehow.

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Weight gain during ITP treatment 9 months 1 week ago #70760

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Interesting that quite a few American sites list weight gain as a side effect where as none of the European ones I have looked at do. In fact UK medicines sites state appetite suppression & weight loss as common side effects. My weight is stable and has been for a long time

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Weight gain during ITP treatment 9 months 1 week ago #70764

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Mrsb04- That is interesting. I'm not sure where I read it anymore, but indeed I was aware that weight loss is mentioned often here. My hematologists always seem quite sceptical as to what side effects I really have anyway and how much so. I mean they didn't directly say it in this case, but when someone suggests I should just work out more after I say I'm barely eating, and I'm doing what I can... um... Well, maybe I can lower the dose even more or quit taking it entirely this year, and then we'll see.

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Weight gain during ITP treatment 9 months 1 week ago #70767

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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: 1901
  • Karma: 7
  • Thank you received: 546
ImPatient
Or change to someone who takes your concerns seriously.

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