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Recent experiences with these meds... 2 months 3 days ago #72506

  • Luvmycat
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Would like to read about any experiences (good & bad) with Lysteda, eltrombopag, avatrombopag. My husband's new hematologist recommended that he think about these drugs. His platelets yesterday were 27,000 and are very rarely above 30.

He has had ITP for over 20 years due to Benzene exposure. He never treats unless he has to have some type of a procedure, then he treats with dexamethasone and ivig. I told him that I would research these drugs then we would talk about it. The choice is totally his. I haven't even checked with the insurance company yet so that could answer for him right there if there isn't decent coverage.

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Recent experiences with these meds... 2 months 2 days ago #72507

  • MelA
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I have no experience with these treatments, thankfully. 
Just curious if your husband has any symptom of low platelets with a 27k count?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Recent experiences with these meds... 2 months 2 days ago #72508

  • Luvmycat
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No, he has no symptoms at all. If not for bloodwork, we'd never know it. He does not get petechia.  The only thing I can say is that if he cuts himself, he bleeds a little more then the average person and he has hem'roids that spring a leak occasionally.

He is 3 yrs overdue for his colonoscopy sooooo the dr is going to admit him for the prep. I feel much better about that. (He will have IvIg and dexamethasone prior to that as well.) I'd be terrified if he did the prep at home and started bleeding!

Maybe a little TMI but, hey, we're all struggling with this in one way or another.

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Recent experiences with these meds... 2 months 2 days ago #72509

  • 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: 2021
  • Karma: 7
  • Thank you received: 575
What a lovely cat.

If your husband  doesn't have any symptoms why treat, (unless of course he is over 60 when treatment may be needed)?
Treating the count not the patient is against current guidelines  pdsa.org/images/InternationalConsensusReport2019.pdf  

Has Dex been tried without IVIg? It may be sufficient without IVIg.
It takes many many donations to produce one vial of IVIg so if not needed why give it?

Eltrombopag has dietary restrictions.I have been on it twice, the first time for 3 years the second time for 6 months  but lost response both times. It  depleted my ferritin so I required iron supplements,  is also caused insomnia and  frequent bowel actions up to 7-8 times day, 
I have no experience of the other 2 medications. 

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Recent experiences with these meds... 2 months 2 days ago #72510

  • Luvmycat
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He is over 60.

He only takes treatment when he has to have any type of procedure such as dental work, a colonoscopy, or anything that involves cutting of the skin no matter how minor. No doctor would touch him with a platelet count of 27k.  So, that's when he does the IVIG and dexa. He hasn't had that for years. After that, within days he's back to his "normal" low counts.

I would describe the new hema as "clinical." The other hema that left, never mentioned any of these drugs to us. We only saw him once a year. As you said, I believe he treated the patient, not the count unlike this new doctor.  But this new dr is concerned about the bleeding hem'roids which scares me a little too.

But having said that, he wasn't forceful about these drugs. He told us to look into them and it was ultimately my husband's decision.  We both agreed that this is a case where the "cure" is worse than the disease so we're out. I told him I'd post on here to get any feedback about the drugs but the research I've done so far has been enough.

My kitty is 15 yrs old. Yours is lovely as well. Heck, all cats are lovely!

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Recent experiences with these meds... 2 months 1 day ago #72512

  • MelA
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I was just smiling at the beautiful cats the 3 of us have/had!
Mine is a female red/orange tabby which I understand is sort of rare - we called her Killian, The Queen of Everything & even the vet & techs called her The Queen.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Recent experiences with these meds... 2 months 1 day ago #72513

  • 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: 2021
  • Karma: 7
  • Thank you received: 575
I'm afraid my beautiful boy is no longer with us. He had a wonderful 17 years. 

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Recent experiences with these meds... 2 months 12 hours ago #72514

  • MelA
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Same with the Queen of Everything, she had 12 wonderful years - when she was about 3 Killian was diagnosed with chronic kidney disease, she did have a long happy life thanks to sub-Q fluids, she has been gone now for 12 years and is still missed terribly!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Recent experiences with these meds... 1 month 4 weeks ago #72526

  • ImPatient
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Sorry no cat here, my experience with Eltrombopag: Only thing that was stable for me (tried Dexa, Pred, NPlate), but diarrhea, bone pain, joint pain, I could barely walk or sit straight for a long time, hair stopped growing on my upper body, hormone problems etc. My hema first didn't believe me, because apparently other patients of his didn't have the same experience. Later he wanted me to switch to Ava but I didn't need anything anymore. And it takes a couple weeks to work, so for medical treatments only maybe not ideal?

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Recent experiences with these meds... 1 month 4 weeks ago #72527

  • ImPatient
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Mrsb04 did your bowel actions stop when you quit Eltrombopag?

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Recent experiences with these meds... 1 month 3 weeks ago #72537

  • 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: 2021
  • Karma: 7
  • Thank you received: 575
ImPatient 
Yes I returned to my normal pattern. 
The following user(s) said Thank You: ImPatient

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Recent experiences with these meds... 1 month 3 weeks ago #72538

  • Luvmycat
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Thanks for all the replies.  I believe that some doctors try to gloss over any side effects. When I asked the new hema about side effects, the ONLY thing he said was that the one had to be taken with a meal containing calcium.  Did he not think that we were going to do the research?  In my personal opinion, sometimes I think that getting the 'numbers up' is a feather in the doctor's cap but the patient is not fully considered. The list of side effects of these drugs is a mile long. It irritates me that these were not even mentioned or discussed with us.

The other thing I read about is the frequent bloodwork getting the dosage correct. My husband's veins are already tough as leather because his original hema many years ago wanted bloodwork every 2 weeks. This went on for a few years until she wanted to do some exotic test every time he had an office visit....24 hr urine catch...things like that. What does that have to do with ITP?  There was nothing else in his bloodwork that would warrant any other tests. ITP is ITP.

No real info in this post...just venting...or maybe blogging!

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Recent experiences with these meds... 1 month 3 weeks ago #72541

  • MelA
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Luvmycat you may vent any time you want, we don't mind - it is nice to know others going through the same thing, not to mention it IS frustrating!!   
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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