Search Results (Searched for: )

  • Leo marvin
06 Jun 2024 21:25
Replied by Leo marvin on topic Promacta treatment
diagnosed 7 years ago,  treated with steroids 4 times, 8 rounds of retux,  counts ranging from 125 to a low of 7…. nothing worked for me,  started promacta 60 days ago, counts now 350-400.  zero side effects,  

been quite a journey with minor bleeding, exhausted all the time, last 2 rituxan treatments encountered a major allergic reaction including trip to the emergency ward straight from the infusion center…. after 6 successful rounds.  i’ve had 3 marrow biopsies, all negative.

recently discovered i have kidney liaisons… probably cancer… 7 in total, docs won’t biopsy them to avoid spreading cancer.

my advice to anyone facing these tough decisions….  Go to mayo clinic,  they deal with this tough stuff every day.

gods speed and live your life like today’s your last chance,  tell your family you love them
  • JandS
10 Jun 2024 10:34
Horrible itchy rash! was created by JandS
Hi! My husband was diagnosed with ITP 3 years ago. It's been the usual roller-coaster ride, but with the help of a fine hematologist, he's doing all right-- BUT for the last few months, he's had an itchy rash that won't quit. It's pretty much everywhere, tho it moves around. Our hemo and derma MDs have consulted, and are baffled. They thought it might have been from the rituximab infusions 6 months ago, but have pretty much ruled that out. Skin biopsies are inconclusive. They think it's eczema/dermatitis-- but nothing helps, not even steroid shots, Dupixent, anti-itch creams, etc.

It's kind of a misery. We're wondering if anyone else has had this situation...? And we'll appreciate any suggestions about dealing with it!

We're happy to be part of this group. It's wonderful.
  • MelA
11 Jun 2024 23:58
Replied by MelA on topic Horrible itchy rash!
Hi! I have not heard of anyone having an itchy rash due to ITP. Could this be a type of contact dermatitis? Have you changed laundry detergents or fabric softener or laundry booster? I'm sure the dermatologist has already asked you that.

I hope you can find an answer and get that itchy rash gone, that must be miserable for your husband! Keep us posted!!
  • WTow47CLondCty
12 Jun 2024 14:28
IVIG and Rituximab was created by WTow47CLondCty
Just read an article on the National Library of Medicine in which you start out on IVIG then add Rituximab which is tapered off over a 6 mos. period ending with just a once a mos. regimen of IVIG.  Wondered if any body has tried this and what there success rate was.  I have tried about every thing with minimal success.  Either what I try works for a while and then fails or I have a bad reaction.  I tried Promacta and had a bad reaction.  Also tried Win Rho and ended up in the hospital twice.  N-Plate worked for the longest but than gradually petered out.
Any ideas.
  • mrsb04
13 Jun 2024 03:39
Replied by mrsb04 on topic IVIG and Rituximab
I'd be interested to see the article can you post a link?
Have you tried Avatrombopag?
  • WTow47CLondCty
13 Jun 2024 08:17 - 13 Jun 2024 08:18
Replied by WTow47CLondCty on topic IVIG and Rituximab
Here is the article
Yes we tried Doptolet and followed the manufactures dosage regime.  The highest my platelets got were 32000
  • JandS
13 Jun 2024 16:30
Replied by JandS on topic Horrible itchy rash!
Hi, MelA-- and thank you for your response. We've changed pretty much all of our soaps, etc. and it hasn't made a difference. We appreciate your empathy, though-- it helps! Best, JandS
  • MelA
14 Jun 2024 00:00 - 15 Jun 2024 00:03
Replied by MelA on topic IVIG and Rituximab
WTow I would be interested in what happened with WinRho that put you in the hospital twice!!   I had one IV of WinRho about 22 years ago after a tetanus booster sent my count to the gutter - that one IV brought my count to a decent level and basically a steady count (not in the normal range but a good count).  I had no problem with WinRho - it was given as a slow drip IV not a push.

Thank you in advance !  
  • WTow47CLondCty
14 Jun 2024 06:45 - 14 Jun 2024 06:47
Replied by WTow47CLondCty on topic IVIG and Rituximab
The WinRho first caused me tot have the chills, then a fever of 102.2 and severe kidney pain (I have Polycsytic Kidney disease and am on dialysis) and weakness to the point that I could hardly walk. The dialysis center sent to the hospital. Not much was done other than observation.
About 3 weeks later I tried a weaker dose of Win Rho and I had negative results again including severe kidney pain that resulted in ruptured kidney cysts, hematuria and my HgB dropped to 6.6
  • Lul92
14 Jun 2024 13:49
On/off ITP was created by Lul92
Hi everyone 
my son was diagnosed with itp last month. He had a fever and cough few weeks before he was diagnosed. He also had nose bleeds 1-2 weeks before his diagnosis. His count was 15K. 

Today and just 1 month after diagnosis his count is 150K … he didn’t receive any treatment.

But the thing is that I’m almost sure that he also had itp several months ago. When he started having nasal bleeds (9 moths ago). The nasal bleeds always happened after flu symptoms. 

Has anyone tried something like this- I mean itp only when sick and spontaneous remission?
  • mrsb04
14 Jun 2024 15:27
Replied by mrsb04 on topic IVIG and Rituximab
WTow  Thanks for the link. How long were you taking Avatrombopag for? 
  • MelA
15 Jun 2024 00:02
Replied by MelA on topic IVIG and Rituximab
Wtow I am so sorry that happened to  you, and after that happened I'm even more sorry that your hematologist decided to try a smaller dose - bless you!!
  • MelA
15 Jun 2024 23:58
Replied by MelA on topic On/off ITP
Hi Lul92,
I would post this up in the Adult section in General ITP Discussion - more people will see it there!
Good luck to your son, I hope he continues to have a good platelet count!
  • WTow47CLondCty
17 Jun 2024 10:29 - 17 Jun 2024 10:29
Replied by WTow47CLondCty on topic IVIG and Rituximab
I took Doptolet for about 2 1/2 months. For a while it seemed like it was working and then it stopped
  • WTow47CLondCty
17 Jun 2024 10:35
ITP and ESRD was created by WTow47CLondCty
Does anyone have ITP AND End Stage Renal Disease and is on Hemodialysis.  I have Polycystic Kidney Disease which caused my kidneys to fail and as a result I am on Hemodialysis.  I also have been diagnosed with ITP with no successful treatments so far.  I am wondering if the ESRD has more to do with my problem with low platelets than the ITP.  Maybe I don't have ITP ?????
  • mrsb04
18 Jun 2024 02:39
Replied by mrsb04 on topic IVIG and Rituximab
Did you have multiple different doses in that time?
  • mrsb04
18 Jun 2024 02:44 - 18 Jun 2024 02:49
Replied by mrsb04 on topic ITP and ESRD
I was a renal nurse for many years.
Haemodialysis itself does not lower platelets but if you are being anti coagulated with Heparin during your treatments you may well have developed HIT, (Heparin Induced Thrombocytopenia). In which case you will need to try something like Lepirudin instead of Heparin.
  • WTow47CLondCty
18 Jun 2024 12:13
Replied by WTow47CLondCty on topic IVIG and Rituximab
I followed the dosage recommendations from manufacturer which were different over the time I took Doptolet
  • mrsb04
18 Jun 2024 15:14 - 19 Jun 2024 01:33
Replied by mrsb04 on topic IVIG and Rituximab
Did you regularly change doses or give it a few weeks at each dose ? I only ask as my dose kept getting changed and my count was all over the place. Then a consultant pharmacist suggested I stay on the same dose for about 3 months to see what happened and my count levelled out.  

Do you have Heparin on dialysis?
  • WTow47CLondCty
19 Jun 2024 06:36
Replied by WTow47CLondCty on topic IVIG and Rituximab
No Heparin
Again, I followed what the Doptolet manufacturer said. You started out taking Doptolet on a stagerd regimen and the worked up to an every day routine
  • mrsb04
19 Jun 2024 07:33
Replied by mrsb04 on topic IVIG and Rituximab
So you did all 6 stages in 2.5 months. 
  • WTow47CLondCty
19 Jun 2024 11:28 - 19 Jun 2024 11:43
Replied by WTow47CLondCty on topic IVIG and Rituximab
If you go to this website    and download the PDF and look under sections 2.1 and 2.2 you will see the prescribing info.  That is what I followed
  • mrsb04
19 Jun 2024 16:29
Replied by mrsb04 on topic IVIG and Rituximab
I am fully aware of the dosing regime. I have been on it for over a year. I was  just wondering if your protocol was different to over here in the  UK. It appears it is the same but I was puzzled as you said it took you less than 12 weeks to reach stage 6. 
  • WTow47CLondCty
19 Jun 2024 17:48
Replied by WTow47CLondCty on topic IVIG and Rituximab
I'll try this agian: According to Tabke 2 ;IF PLATELETS ARE LESS THAN 50 AFTER AT LEAST 2 WEEKS INCREASE THE DOSE LEVEL PER TABLE 3.  Wait 2 weeks to assess the effects of each regimes.
At no time did my platelet level get any where near 50.
1 st 2wks took 20mg per day
2nd 2wks took 20mg 2 x wk for 2 wks
3rd  2wks took 20mg 3 x wk for 2 wks
4th 2wks took 40mg 3 x 20mg 4 x wk for the same 2 wks
5th 2 wks took 40 mg daily for 2wks

Actually Doptolet says: Discontinuation: Discontinue DOPTELET if the platelet count does not increase to greater than or equal to
50×109 /L after 4 weeks of dosing at the maximum dose of 40 mg once daily.

The highest reading I got was 36 one week and then it went back into the 20's.  Just no signs of working
  • Liwen
19 Jun 2024 22:58
An anxious mom was created by Liwen
Hi, everyone

My son is 18 years old, he was recently diagnosed ITP. His platelet count dropped to 16 in a month but he didn't have symptoms.
Does anyone have any recommendations for a great ITP doctor near Pennington, Princeton or Lawrenceville NJ?
  • MelA
20 Jun 2024 00:04
Replied by MelA on topic ITP and ESRD
Thank you mrsb - I was hoping you would see this thread since you are/were a renal nurse!
  • mrsb04
20 Jun 2024 16:50
Replied by mrsb04 on topic IVIG and Rituximab
That's a 5 stage protocol starting at stage 4 then going back to stage 2. As you appear intolerant of my questions I will not communicate with you any more. I hope you get sorted out.
  • Margaret
20 Jun 2024 18:35
Replied by Margaret on topic IVIG and Rituximab
Well said, mrsb
  • MelA
21 Jun 2024 00:31
Replied by MelA on topic IVIG and Rituximab
I'm sorry mrsb - I figured with your background someone with renal problems would be happy to have your knowledge & experience passed on to them.       I appreciate you and I don't have renal problems!.
  • swijung
24 Jun 2024 08:18
Replied by swijung on topic hair loss
I also facing the same problem.
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