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Hesitation about discontinuing treatment

  • Margaret
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1 year 2 months ago #73434 by Margaret
I was diagnosed with itp last year but now that I know the symptoms I realise I have had it for a very long time, undiagnosed and untreated. I took prednisolone for some weeks early this year while also starting mycophenolate, tapering off the prednisolone as the mycophenolate kicked in. I've never had a count as low as some of you, my lowest recorded in a test was 12. But with the treatment I've been well into the healthy zone for months. The haemotologist now wants to wean me off the mycophenolate. After the first reduction (from 2g to 1.5) my count dropped from 156 to 94, but staying on 1.5g it recovered to 125. Now I'm down to 1g mycophenolate (500mg twice daily), and he wants me off it in about 6 months. I'm happy to reduce it but I'm concerned about discontinuing completely, because it took so long to take effect. Anyone have relevant experience?

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1 year 2 months ago - 1 year 2 months ago #73435 by MelA
Never heard of mycophenolate so looked it up - not sure I'd want it, but......  It said used for refractory ITP, was that a 1st line treatment for you?

Nothing wrong with a count of 94

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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  • Margaret
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1 year 2 months ago #73436 by Margaret
Replied by Margaret on topic Hesitation about discontinuing treatment
Thank you, yes, first treatment after/with the prednisolone. Maybe mycophenolate is a regional label? I'm in Australia.
 I agree, 94 is fine, it was the drop that bothered me.

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1 year 2 months ago #73439 by MelA
Margaret since you mentioned mycophenolate could be a regional label I searched again and found the brand names are CellCept and Myfortic.  I am minutely familiar with CellCept.  Not sure it is used as a 1st line treatment here.  Have you researched the drug?

Maybe the drop in count was due to decreasing the dose too quickly, but a .5 decrease doesn't seem a lot - but again, I don't know that much about CellCept.     What did  your hematologist say about the drop?

(Australia is where I have always wanted to visit - know I'd fall in love with it)

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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  • Margaret
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1 year 1 month ago #73441 by Margaret
Replied by Margaret on topic Hesitation about discontinuing treatment
Thanks Mel. I've read a bit about it, and the haemotologist's concern is the long-term effects. He's keeping an eye on the count, but because there was some increase without a change to the dose he's confident to further reduce it, and review after 3 months. Which I'm ok with. My hesitation is about weaning right off it. If I have a significant drop later and have to start from scratch, it's such a long process till it takes effect. I really don't want to do steroids again. But I guess ultimately that's what itp means - monitor and medicate as needed. I'm lucky that I responded well to this treatment.
   Australia would love it if you visit! At the moment the northern bit is washing away tho ...
   
    

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  • 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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1 year 1 month ago - 1 year 1 month ago #73443 by mrsb04
Replied by mrsb04 on topic Hesitation about discontinuing treatment
Over here in the UK medications  dispensed by the NHS are prescribed by their generic names. It really annoys me that other countries use brand names and completely rip off patients. My current prescription  is Avatrombopag 20 mg tabs:- 1 tablet/day and Prednisolone 2mg/day. That would cost a maximum of £19.30 a month, (24.3US$, 36.09 Aus $).
If supplied 2 months worth of meds then that would  reduce by 50% a month. The maximum anyone would pay is £111.60  (141.24US$, 208.68Aus$) a year because one can buy an annual  pre payment card. I am over 60 so get all my meds free any way. 
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1 year 1 month ago #73446 by Margaret
Replied by Margaret on topic Hesitation about discontinuing treatment
Somewhat similar here. Prescriptions are a standard price, I think $15 (AU) but for me as a pensioner $7.50. But I reached the "safety net" limit of $260 for pensioners, so for the last few months they have been free, until the end of the year

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