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01 Aug 2022 20:08
  • ImPatient
  • ImPatient
01 Aug 2022 20:03
  • ImPatient
  • ImPatient
Mrsb04 did your bowel actions stop when you quit Eltrombopag?
01 Aug 2022 19:59
  • ImPatient
  • ImPatient
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?
01 Aug 2022 19:47
  • ImPatient
  • ImPatient
I don't understand how the waiver would help you, if you can't take the classes you need... There were several people who wrote something about their experience with the tetanus vaccine. I got a booster when my ITP was pretty bad, but can't say for sure whether it got worse from it. And our experience isn't necessarily yours. I don't know if it's a problem to take MMR if you don't know whether you had it. I would want to know that.
01 Aug 2022 19:17
  • ImPatient
  • ImPatient
Did you ever try a much lower dose of cortisone, since your previous treatments seem to have been too much? Ask your doctor about it... Good luck!
01 Aug 2022 15:29
  • Bassmaster57
  • Bassmaster57
Hello everyone,
Has anyone had any treatments that worked " TOO WELL"?  I was diagnosed about 1 year ago.  After receiving 2nd Maderna vaccine my platelet count dropped to 15k about 30 days later. I was given Dex Pulse treatment for 4 days and my platelet count shot up to over 800... Hemo was very surprised at my response. Next treatment was IVIG, again platelets shot up to over 800 in 2 or three days. Next, Promacta 25 Mg per day. Platelets shot up to 1 million in just a few days. Stopped that immediately... Now trying Nplate tweeking doses. 2mcg /kg shot me over 1million again. Stopped that immediately. Last injection at 1.5 mcg/kg has not worked at all. Platelets down to 25 k today. checking again tomorrow. I have never had any bleeding problems, only petichae on my lower legs when under about 30k. Thank you in advance for any replies....   
01 Aug 2022 12:56
  • midwest6708
  • midwest6708
Congratulations!   Wishing you success from it.
01 Aug 2022 12:50
  • midwest6708
  • midwest6708
I get Nplate weekly but have been getting less than 1 mcg per kg for years.  I weigh 61kg and my dose is 40 mcgs.  My counts are rarely in the ideal 50 range.  They're generally between 60 and 100, which is okay with me.  When the counts begin moving above 100 with regularity, the dose gets dropped by 5 mcgs. Skipping doses makes them even more erratic and is unacceptable to me.
My point is, success can be had with doses of fractions of 1 mcg per kg.
01 Aug 2022 12:29
  • MelA
  • MelA
Why is it taking so long (days or weeks) for someone to be notified that they have a new message??
Thanks!
Melinda
01 Aug 2022 12:25
  • MelA
  • MelA
WAHOOOOOOOOO !!

I am so happy for you mrsb !!
01 Aug 2022 10:38
  • mrsb04
  • mrsb04
01 Aug 2022 07:42
  • Carducci7292
  • Carducci7292
Can I ask what your counts were before you started to stretch out the injections? Did you see a drop each time you lengthened the time between injections?
Thank you very n=much for responding.
01 Aug 2022 02:24
  • JJ
  • JJ
I did it like that. Did injections further and further apart up to about once every five weeks and then stopped altogether. My counts didn't drop low at that time but stabilised around 80. Counts did drop again a few years later and I did nplate for a few months and when my count went too high, I stopped again.
31 Jul 2022 13:22
  • Carducci7292
  • Carducci7292
I am finishing my third year on N Plate. I am extremely lucky in that for the the last two and one half years, my counts have been above 100,000 and 90% of the time above 140,000. During that time I have been receiving 1 mcg/kg. I have had 6 occasions when my counts were above 200,000 for two consecutive weeks and then fell below 200,000 the third week. In accordance with N Plate's parameters I would have reduced 1 mcg which in my case would have meant no injection. My hematologist and I have discussed going to a 1 mcg/kg injection every other week but were hesitant to do so during the pandemic. We are now discussing it again. I was wondering if anyone has experience or knows of someone who has had a similar situation and what happened when they spread out their injections from weekly to something longer? My hematologist said he had two patients whose counts dropped severely and then stabilized and came back up somewhat after doing so.
Thank you
30 Jul 2022 00:32
  • MelA
  • MelA
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!
29 Jul 2022 02:15
  • mrsb04
  • mrsb04
I'm afraid my beautiful boy is no longer with us. He had a wonderful 17 years. 
29 Jul 2022 00:36
  • MelA
  • MelA
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.
28 Jul 2022 16:25
  • ImPatient
  • ImPatient
Does anybody know if I could still have diarrhea because of Revolade, even though I quit taking it over a half year ago? It started with it and it's mentioned as a side effect but now it doesn't stop. I already had a colonoscopy and an endoscopy, plenty of allergy tests... during the endoscopy they discovered I have gastritis and gave me Pantoprazol, but they said it's not the reason for why I have diarrhea. I know this is not a forum for stomach and colon problems, but I thought it started with Revolade, so I wonder if anybody else has this experience? My counts are staying around 100-110 at the moment by the way, that's good...
28 Jul 2022 08:48
  • Luvmycat
  • Luvmycat
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!
28 Jul 2022 01:28
  • mrsb04
  • mrsb04
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. 
27 Jul 2022 16:48
  • Luvmycat
  • Luvmycat
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.
27 Jul 2022 16:08
  • MelA
  • MelA
I have no experience with these treatments, thankfully. 
Just curious if your husband has any symptom of low platelets with a 27k count?
27 Jul 2022 08:35
  • Luvmycat
  • Luvmycat
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.
22 Jul 2022 09:51
  • CindyL
  • CindyL
That's it, the BA2.
I think I only had a small fever with the first shot of Moderna.  All my other reactions have varied.  I'll probably have to go back to the Pfiezer if we need another booster.
21 Jul 2022 17:11
  • JJ
  • JJ
The latest Omicron is called Centaurus or BA2.75. The newest vaccine should cope with BA4 and 5 too which the original vaccines don't.

Oddly I had a high temperature after the last vaccination which is the first time I've had any reaction. The blood test done at the same time showed that I had no B cells at all so made no antibodies but maybe something else was happening.
21 Jul 2022 10:09
  • CindyL
  • CindyL
This was my fourth.  And I hear we have new variants forming, so I have no doubt we'll be getting another shot.
I'd be willing to get a yearly booster if I need to.
We've already had the Omicrom.  Not sure what the new one is.  Have you had any reactions to your shots, JJ?
20 Jul 2022 19:08
  • JJ
  • JJ
In the UK we are going to get another covid vaccination in September or so. This time it is likely we will all get a Moderna updated for Omicron, so I'm told. It'll be my sixth! Fed up with them now.  
19 Jul 2022 09:40
  • CindyL
  • CindyL
I totally agree with you Mel!  This is going to be around for a very long time!
We received a notice from the landlord about still wearing masks in the common areas.  Yesterday, Steven had to go down to his office and thanked the LL for the notice.  Not that it really makes a difference, we would still be wearing our masks anyway.  We wear them in the stores or anyplace there are a lot of people.  People just don't care anymore.
Both of Cathy's kids had mild cases of it., but she and hubby both got away without it.
I couldn't wait to get my first shot so I could go see my mother in the nursing home.  I don't understand how your friend refuses to get vaccinated, especially since she takes care of her mother.
I hope your son, grandson and niece are all feeling better!  Steven says he has no doubt that we'll probably get it.  We'll just try to avoid it as best as possible.
19 Jul 2022 00:27
  • MelA
  • MelA
My son was just a couple days shy of getting his 2nd booster when he came down with symptoms - he got it from his son who was just shy of getting his 1st injection as his age group finally was approved.  Interesting our young grandson was over his in 3 days and thankfully not real sick - our son had it not too good, high fever etc.    My fully vaccinated niece got it from her son who is fully vaccinated, her daughter fully vaccinated got it too.  The fully vaccinated husband of a friend just tested positive.  A friend who I haven't seen for quite a while because she refused to get vaccinated has it - what I don't get is she has a mother who is demented and she is there taking care of her and wouldn't get vaccinated knowing her mother is high risk, haven't heard yet if mother got it.    Just telling you all this because I think we will be having covid vaccines for a long time to come :(       

Nope, I wouldn't get another Moderna again - you have had 2 reactions to it.  

I haven't been on the computer till now so haven't seen the photos yet - it is late so I'll look tomorrow.   
18 Jul 2022 09:41
  • CindyL
  • CindyL
Nope, no reaction like this.  The first Moderna dose made me sick for a couple of days.  The ER triage nurse called it "localized reaction" and that it's normal.  He did suggest I not get Moderna again and take Tylenol.  According to the nurse who gave us our shots said as far as she knows, these will be the last ones.  Yeah, right!  With more variants coming out, I'm sure our government will suggest another booster.  I wouldn't mind if I had to get it once a year like the flu shot if it will keep me safe.
Steven's shot came out of the same bottle as mine and had no reaction.  I will say, the redness is almost gone and the heat isn't as bad.  Today makes day 5 and the arm is still a bit sore.
Pictures will be posted later this afternoon.  Enjoy them!  We went to the nature park.  Cathy actually bought a book on hiking in New Brunswick and has a few trails picked out for us.
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