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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
22 Apr 2022 13:22
  • joanne6705
  • joanne6705
Yes, My hema is in touch with the surgeon.  I'm starting prednisone and lots of blood test prior to the date to see how it's going.  The hema will taper during my recovery which sounds good.  I was reaching out because who better to ask than the folks who have my disease and might have some experience with how to successfully deal with surgery.  I'm going to try to stay for the first night.  Not wild about having my body rearranged and then sent home.  My hema tells me blood vessels heal within the first 24 hours so it seems reasonable to keep someone overnight who has a blood disorder.  Thanks for your kind words.  This is a very lonely disease and hard to cope with emotionally at times.  
21 Apr 2022 13:13
  • MelA
  • MelA
joanne I'm so sorry you are having to go through this - of course I'd be concerned too.  Can't you talk to your hematologist about this - about what will be done in order to bring your count up to the 80k required for the surgery and what to do after??  Is your hematologist in touch with your surgeon??   I wouldn't be happy with an ED telling me not to come in unless I'm about to pass out - what if I'm alone, do I drive in when I'm about to pass out?  That just doesn't make sense.  

Good luck to you - keep us posted.
20 Apr 2022 18:13
  • ecoclayton
  • ecoclayton
The first Moderna vaccine did nothing to my platelets. My platelets tanked after my 2nd Moderna Vaccine.  Went from high 70's to low 20's.  Then I got Covid and my platelets shot back up to the 70's and slowly dropped again.  Makes no sense just like ITP
20 Apr 2022 18:09
  • delta809
  • delta809
Seems there is potentially a correlation between branched-chain amino acid and increase in platelet count.

See research study:
pubmed.ncbi.nlm.nih.gov/26857535/
20 Apr 2022 16:36
  • Vancouver40
  • Vancouver40

Hi Vancouver, I was wondering if the pedialyte is still working for you in keeping your platelets up? 

Thank you for your question. When my platelets begin to decrease, I do continue to have pedialyte. I'll drink one 1 litre bottle throughout the day, taking sips as directed on the bottle. My platelet crashes have been less frequent which is good news.. My last episode was November 2021 and prior to that it had been a year a half before, July 2020. I believe the Pedialyte beverage of electrolytes help as I did see improved platelet counts right after consuming one litre of Pedialyte (unflavored ideally). I'd like to also add that with this, I do add several other supplements that also seem to help during these decreases. This includes monolaurin (three times a day with a meal), daily Probiotic (Renew Life -100 billion), a protein shake with greens daily (Vega Brand), Vitamin D3-K2 supplement daily (3000-5000 IUs) and I'll add Zinc too (25-50 mcg). I also drink Goats Milk and grass fed plain yogurt (2%), as well as Beef/Chicken livers and Beef bone broth during the time my platelets begin to start crashing. If possible, I'll also take days off from work to rest and sleep. This also seems to help. As a result, I've been able to increase platelets naturally several times this past year when they were on the way down towards a crash (Under 150K and consistently going down test after test). I also do blood tests regularly to see where I'm at with my platelet count and I keep a journal for recording my meals, activities, sleep, etc. This helps in seeing what might help and acts as a reference for the future. I also avoid Bee Propolis, Honey and other anticoagulants in my diet. I've also started eating limes in my diet for natural Vitamin C and apples, corn for increased fibre. My diet has definitely changed tremendously since my ITP started in July 2016 and I believe this has helped very much. Getting sunshine regularly has also been a priority and I've added being outside more for extended periods into my day for natural Vitamin D. Wishing you well and strong healthy platelets!
20 Apr 2022 12:34
  • Peach
  • Peach
Hi Vancouver, I was wondering if the pedialyte is still working for you in keeping your platelets up? 
20 Apr 2022 12:16
  • joanne6705
  • joanne6705
Having a hysterectomy next month because of heavy bleeding.  I am going the larscopic route and was surprised at how quickly they have you leave the hospital (same day?).  My concern is post op bleeding that starts suddenly and now im 50 minutes from the hospital.  Is there any med I can ask my hema to put it me on to keep my platelets in a high range for recovery?  I took dex for 4 days platelets shot up to 173 which i haven't seen in twenty years.  The following weekly check in i was at 41.  I need 80 to get through this surgery and figure the dex should help with this but what about afterwards?  Just looking for any info anyone has.  Not sure how many dex things you can do in a row, etc.  I am one scared person to do this but I don't have a life otherwise.  Always home in case the vicious bleeding starts.  It takes 7 plus hours to stop it using 4 birth control pills feet up, sick to stomach, not fun.  Cancer doctor says im not likely to get any relief with menopause because my episodes don't seem to follow a cycle.  Regular gyno said no to surgery, and referred me to a cancer gyno doctor after repeated failures of the birth control. The emergency dept said i had to come when i'm about to pass out not sooner, but my gyno said when the heavy bleeding starts I need to go to the emergency room because my platelets flux and she has no way of knowing where I'm at.  Talk about confusing and not knowing what to do while being scared of your own body. THANK YOU for any input/success with this.
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