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10 May 2022 14:45
  • cboggs
  • cboggs
Hi.  A 2016 at Harvard University and Massachusetts General Hospital found that low-level laser light treatments helped raise the number of platelets in mice with thrombocytopenia. The researchers think this effect was because the light treatments increased the production of ATP, a chemical source of cellular energy, which resulted in reducing oxidative stress. Does anyone in this group know of any further research on this topic, or the existence of a clinical study examining whether this approach works in humans with ITP? 
08 May 2022 16:22
  • mrsb04
  • mrsb04
I flew from UK to Australia and back. I asked my haemo what count I could fly at and she replied above 1. It was 21 when I flew back. I had no problems. 
07 May 2022 20:52
  • ronjsteele1
  • ronjsteele1
www.maryjoaloi.com

email: health@maryjoaloi.com

She is a homeopath that is familiar with treating ITP.
06 May 2022 18:15
  • MelA
  • MelA
Very good to hear your daughter's count is still good raj - that is wonderful!   I am sorry you needed to cancel your trip but as you said there is always next year.   
06 May 2022 18:07
  • MelA
  • MelA
I was diagnosed April/May 1989 with a count of 11k & dropping - in July 1989 we moved to Tokyo and of course that was an airline flight,  I was on 60mg of prednisone & a low count (sorry can't tell you the # as I gave all my charts and notes to my new hematologist since he has lots of knowledge of ITP and he loves blood) - while overseas we flew to Hong Kong (and later moved there), Singapore, Beijing, Thailand, Cairo, Rome, London, Bermuda & more and back to the States a few times.  To be honest I never considered what my count was when I got on a plane - they let me move/fly to Tokyo shortly after diagnosis & on 60mg of pred so I never gave any other flights a thought.  I had no issues due to the long flights.   At that time no one was wearing masks on planes, but if I were to fly now I would be wearing a mask.

What does your hematologist have to say - have you talked to him/her about flying?

Good luck
06 May 2022 13:53
  • VVeenM
  • VVeenM
I plan on flying  to FL soon. Has anyone had any experience to share on this? If you’ve flown, what were your platelet counts and did you have any issues?. Right now mine are around 30,000. I’m a little concerned because of the cabin pressure.
05 May 2022 17:02
  • raj369459
  • raj369459
Update on this week's CBC count: My daughter's platelets went up to 282K this week. Spoke to hematologist and she said although her platelets are normal, it's safe for her not to travel and that too internationally because of Rituxan. For now we decided not to travel with her and would plan next year. Thank you for all your suggestions!
05 May 2022 09:32
  • CindyL
  • CindyL
I did Rituxan in 2011 and didn't have any issues with it.  I sailed through all 4 doses with flying colors.
Good luck to both of you!
05 May 2022 06:16
  • WSHELTON
  • WSHELTON
Thank you for your reply, sorry for your pain and good luck to you too.
05 May 2022 03:24
  • JJ
  • JJ
At the moment I do ritux every 12 weeks for lymphoma and have those side effects for a couple of weeks after each one. I am finding that it gets a bit worse each time! Good luck!
04 May 2022 16:22
  • WSHELTON
  • WSHELTON
Hello All
Had my first dose of a 4 week schedule of Rituximab and for 3 days I had Extreme pain from head to toe. Now 4 days out I'm weak and sore all over with headache. I'm afraid to continue with the next dose. Any feedback on your side effects and how you handled I would appreciate 
02 May 2022 18:07
  • VVeenM
  • VVeenM
I take mine at 4 pm now and that seems to work. I tried bedtime but we eat at sometimes 7 and I was having to stay up til 11 pm to take it. Now I take my multivitamin in the am, have a bowl of cereal in the morning and yogurt at lunch around 11:30, so my pill is 4 hours after. Then it’s at least least 2 hours before my dinner too. We can’t cut out all dairy. Thanks for responding!
30 Apr 2022 14:46
  • mrsb04
  • mrsb04
I take my Eltrombopag last thing at night as I get into bed. I avoid calcium foods for the preceding 4 hours (or thereabouts). There is absolutely no way I could get up and not eat for 2 hours.
30 Apr 2022 00:05
  • MelA
  • MelA
 Let us know what her count is next week - sure hope it is up at a real good count!!
29 Apr 2022 07:22
  • chalcomb1117
  • chalcomb1117
Tabetha,
I don't get on here often and just saw your question.  I have had ITP for 12 years now and my counts swung wildly for the first several years.  Had to finally start meds 3 years ago and I'm currently on 50 mg of Promacta, and like you, had the crazy side effects.  However, about 8 months ago I started taking (in addition to the Promacta)  Papaya Leaf 400 mg and then ended up on 800 mg per day.  It took a while, but my counts have been stable (above 100) for about 4 months.  It makes me feel so much better, minimal aches and muscle pain, and only a bit of sinus issues.  I am hoping to decrease my Promacta even further to 25mg in the near future.  I hope this helps or at least is an encouragement.
28 Apr 2022 23:43
  • raj369459
  • raj369459
Yes, I have asked these questions to the hematologist and she said if the platelets are stable for 2 weeks, then we can consider. But I still need to ask her regarding the Rituxan infusions (last week was the 4th dose and the last one) and the implications it can have to tackle Covid infection or other viral diseases. Her next blood work is next Tuesday. Hope the platelets stay in normal range. Thank you!
28 Apr 2022 16:22
  • Hope and Faith
  • Hope and Faith
28 Apr 2022 14:25
  • MelA
  • MelA
As I mentioned in your same post up in the adult section - 
They make nose hair scissors and "razors" that are battery run.

It might help if you only post your question in 1 section - adult section is the one where you probably
would get more answers.

What is your platelet count?
28 Apr 2022 14:21
  • MelA
  • MelA
Personally I'd ask my daughter's hematologist the questions!  He/She would have those answers for you.
 
Since she just finished her 4th infusion of Rituximab was that her last one?
When is her next blood work?   Her count was really good last week, hope it stays up!
28 Apr 2022 13:37
  • MelA
  • MelA
Aren't they nose hair scissors and battery run nose hair "razors".

Good luck!
27 Apr 2022 17:44
  • RR01
  • RR01
Hello raj ,
Sorry that your daughter is going thru this tough time . Rituximab by itself makes one more prone to infections and I would suggest if you can should postpone the travel. She is already going thru a lot at this young age , why risk anything more. Just my thought . I don't have any experience with Rituximab but I did IvIG and dint have any sustained result with that , Dr. suggested Rituxan but I said no. I havent gotten my booster yet because of my low numbers . I have been postponing my travel to India as well .
27 Apr 2022 12:40
  • raj369459
  • raj369459
Hi All,
My 12 year old daughter was diagnosed with Chronic ITP in Jan 2020 and since then her platelet counts have been a roller-coaster ride. She received 1st Covid vaccine (Pfizer) in Jan 2022 and her platelets nosedived from 100K to 2,000 and were never in double digits since then. Currently, her hematologist is giving her Rituximab and she just finished her 4th dose. Last week her platelets went up to 277K.
We need to travel to India next month and not sure the risks involved with Rituximab and Covid 19. Since she is not eligible for 2nd dose of Covid vaccine (given adverse reaction to 1st dose in Jan 2022), is it safe to travel with her? If yes, what are the precautions to take while travelling apart of usual medications such as Promacta, Sirolimus etc?
Thank you for your advice!
27 Apr 2022 02:44
  • delta809
  • delta809
I take Promacta when I awake in the morning and avoid eating anything for two hours. After that, I generally eat normally including foods high in calcium.
26 Apr 2022 14:53
  • Hope and Faith
  • Hope and Faith
Hi Everyone,
Any advise on how to handle long,thick nose hair.  Hair is popping out of nostrils and has become very visible. 
So confused with platelets being low....

Thank you for reading and replying...
In graditude
26 Apr 2022 14:49
  • Hope and Faith
  • Hope and Faith
Hi Everyone,
Any advise on how to handle long,thick nose hair.  Hair is popping out of nostrils and has become very visible. 
So confused with platelets being low....

Thank you for reading and replying...
In graditude.
24 Apr 2022 16:35
  • MelA
  • MelA
I had a hematologist who told me he had never had a patient go into remission using IVIg.    

Personally I wouldn't want to do IVIg all the time - it's a blood product and my ITP began very shortly after receiving a gamma globulin injection.  It is believed it was the injection that triggered my ITP.     Now if IVIg was the only thing that kept my platelets at a livable number then that would be a different story.  There was a delightful older woman here some years back and IVIg, a certain brand, was the only treatment that worked for her, never cured her though.  
24 Apr 2022 11:46
  • sohail009
  • sohail009
Hi,

Just like prednisone, IVIG also seems a patchwork or bandaid. I am wondering if anyone ever had any experience that after IVIG they are cured and no further treatment is required?

Thanks.
24 Apr 2022 11:43
  • sohail009
  • sohail009
Hi, 
I am looking for a Homeopath or Naturopath for my daughter. Any suggestion/recommendation? 

Thanks.
22 Apr 2022 15:35
  • MelA
  • MelA
joanne I'm glad that you called ITP a blood disorder and not "my disease" again - we aren't diseased :) we have a blood disorder.   And to be honest with you any disorder/disease is lonely unless you have someone in the same boat to talk to - it is good to have this group to discuss things with!   I'm also glad your hematologist & surgeon are communicating, that is really good - so many don't have their hematologist in communication with their other specialists.  It sounds like things are going as they should. 

The only surgery I've had since diagnosis in 1989 has been 2 total knee replacements, basal joint surgery on each thumb, a tumor removal, surgery on a tooth root thanks to an instrument breaking off inside it when having a root canal. 

Keep positive and I pray all goes well for you !
22 Apr 2022 15:16
  • Eli
  • Eli
Wow! Thank you for this. It's so amazing to connect with another mom in a similar (nearly identical, it sounds like) situation. And congratulations on bringing a new baby I to your family :)

At 4 months in, we are starting to reach a point where we feel confident enough to forgo some of the blood draws. She hit her head last week so took a short course of steroids and that bumped her up for about days. But right now we're at that scary point where its Friday and last time we checked (tues) she was at 5...we're just going to try to roll with it and be careful. I tried taking your advice to just serve beets here and there but I keep cooking them and then forgetting them haha. And I think ill take a look at the papaya leaf extract. We actually eat papaya pretty frequently.
 
If anything, this strangely benign/terrifying syndrome keeps me constantly aware of how much I love my daughter and of how greatful I am for her health. I hope that our kids continue to thrive, with or without ITP!

And I'd love to hear about anything that you've learned about itp, or just lend an ear to your experience. I hope you and your family are well,

-eliza
Category: Newly Diagnosed
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