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  • MelA
08 Jun 2023 00:29
Replied by MelA on topic I have an announcement!
Janet that is fantastic!!!  Very happy for you!!
But - you must keep in touch with us :) 
  • Lman
09 Jun 2023 20:34 - 09 Jun 2023 20:36
Replied by Lman on topic I have an announcement!
That is so nice to hear!!
I had the same experience last year after I was hospitalized with a dose of 7 MCG/KG and a single-digit count (due to what was really a very minor cold). They pumped in everything (IVIG, Methyl pred, Platelet bags) + me going crazy with Nplate overshooting before hospitalization to hopelessly avoid that. That allowed me to reduce the dose a little bit after I was released. I believe in the miracle of shocks :)

I was wondering how long you were on Nplate and what was your dose reduction timeline.
  • GrouchoMarx
10 Jun 2023 03:03
Ceftriaxone to someone with ITP? was created by GrouchoMarx
Good morning all,
I am in a hospital curing what it seems is a bronconeumonia. Not sure of doctors here knows ITP patient can take any antibiotics. 

They started yesterday with Ceftriaxone.

Should I be concerned?
Many Thanks bros
  • GrouchoMarx
10 Jun 2023 03:05
Replied by GrouchoMarx on topic I have an announcement!
Will you be blessed indeed
  • Margaret
10 Jun 2023 03:32
Replied by Margaret on topic Ceftriaxone to someone with ITP?
Is this a form of cefalexin? I took a high dose of this for a UTI without problem (while taking prednisolone and mycophenolate for ITP)
  • GrouchoMarx
10 Jun 2023 03:33
Replied by GrouchoMarx on topic Ceftriaxone to someone with ITP?
No. It is an antibiotic to treat bacterial infections.
  • Margaret
10 Jun 2023 03:45
Replied by Margaret on topic Ceftriaxone to someone with ITP?
Well UTI is a bacterial infection. A quick look online suggests to me (disclaimer: I don't know much ...) that it's a later generation of the same antibiotic. But maybe someone here is better informed than me. Good luck with it, hope you feel better soon
  • GrouchoMarx
10 Jun 2023 03:57
Replied by GrouchoMarx on topic Ceftriaxone to someone with ITP?
Thank you :) 
  • GrouchoMarx
10 Jun 2023 08:58
From 139 to 300 due to neumonia was created by GrouchoMarx
Hi all,
I am on 50mg Promacta/Revolade and it keeps my counts to 139.
I got this infection bacterial in my lungs provoked or not by covid and the count jumped in 3 days to 300.
Is it something absolutely rare?

I disconntinued. 

Any comment is welcomed:)
Txs
  • Lman
10 Jun 2023 11:04
Replied by Lman on topic From 139 to 300 due to neumonia
the comment we've already been discussing, lol.

As ITP (or any other autoimmune disease) is possible to emerge/relapse/exacerbate after infection, the reverse is also possible. I recall several cases documented of recovering from ITP after contacting Hong Kong flu. I'm so sorry that you're in hospital and I hope you get out soon, with meaningful post discharge increase in counts ;)
  • GrouchoMarx
10 Jun 2023 13:45
Replied by GrouchoMarx on topic From 139 to 300 due to neumonia
Thank you
  • MelA
11 Jun 2023 00:13
Replied by MelA on topic Ceftriaxone to someone with ITP?
Do you have a hematologist?     Since you are concerned have you talked with him/her?

From the Mayo Clinic:
"Ceftriaxone belongs to the class of medicines known as cephalosporin antibiotics. "
  • GrouchoMarx
12 Jun 2023 03:25
Replied by GrouchoMarx on topic From 139 to 300 due to neumonia
Hi Lman
Today 443 and climbing. I never had more than 250 even without ITP.
When the climbing will stop? As soon as the process of infection is cured? I am having big time antibiotics.....
When too high is too high?

Thanks 
  • mrsb04
12 Jun 2023 06:19
Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
I only took Avatrombopag 20mg twice between the previous blood test and last Friday's.
Just got the result, count is 165 so am staying on twice a week and begin gradually tapering off  pred. Weekly FBC tests (CBC I think you call it  across the pond)  to continue for a while with monthly renal and liver function and CRP tests. 
  • CindyL
12 Jun 2023 09:03
Replied by CindyL on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
That's a good count for most of us, but I know you aren't comfortable that high.  I hope all other functions are normal and stay that way.  Good luck tapering the pred!
  • mrsb04
12 Jun 2023 12:28
Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
Cindy I had a telephone consult this morning my target is going to be about 80
  • Lman
12 Jun 2023 14:58 - 12 Jun 2023 18:33
Scented products to use with ITP? was created by Lman
Hi,
Now it is summer and I sit in a small office and I tend to sweat a lot, I was wondering what kind of deodorant/sprays/perfumes/clonge/antiperspirant are safe to use for those with ITP. As clearly people with autoimmune diseases should stay away from such products, but in my case, it seems needed.
I am not sure if it is better to apply the product on my skin or cloth. I think if it is something I can apply to my cloth that would be better for someone with an autoimmune disease.
Any advice or experience is appreciated since I have to order them soon to counter the summer odor.
  • mrsb04
13 Jun 2023 04:02
Replied by mrsb04 on topic Scented products to use with ITP?
How about an aluminium free deodorant?
  • CindyL
13 Jun 2023 08:24
Replied by CindyL on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
80 is a good number.  Good luck!
  • Lman
13 Jun 2023 18:59
Replied by Lman on topic Scented products to use with ITP?
Thanks mrsb.
I ended up buying a deodorant without aluminum and paraben.
Also, I asked my doctor. He said that "Clognes and perfumes are most likely to get an allergic reaction. The other categories are tested to lessen that likelihood."

I have to use this for 3 days a week for summer when I work in the office.
  • Lman
13 Jun 2023 19:01
Replied by Lman on topic From 139 to 300 due to neumonia
Wow, that is a perfect sign! I hope you can have a dose reduction after the infection fades.
  • amberyard
13 Jun 2023 22:29
Replied by amberyard on topic Blood Thinners
I've been on blood thinners since the beginning of the year for a blood clot in my jugular. The blood thinners actually have helped stabilize my platelets. 
  • MelA
14 Jun 2023 00:04
Replied by MelA on topic Scented products to use with ITP?
Lman I'm curious as to what you got the info that:
"deodorant/sprays/perfumes/clonge/antiperspirant ... As clearly people with autoimmune diseases should stay away from such products,..."

I'm an ITPer from way back and I have never been told not to use any of those!!

Thanks
  • MelA
14 Jun 2023 00:08
Replied by MelA on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
I know you aren't too comfy with the 165 mrsb - I sure hope the pred taper goes smoothly and your count can settle about 80k (that is such a nice number), my thoughts are with you!!
  • Lman
16 Jun 2023 19:05
Replied by Lman on topic Scented products to use with ITP?
Hi MeiA!

My statement is inaccurate as I don't have much science to back it up. I personally try to stay away from such products as I know a lot of chemicals can interfere with or exacerbate autoimmune diseases.

But these are some resources I looked into to buy a deodorant:
www.ncbi.nlm.nih.gov/pmc/articles/PMC1314959/
www.abc4.com/gtu/gtu-sponsor/common-products-to-avoid-for-an-autoimmune-disease/

Also as my doctor mentioned, some of them are known to be problematic.

I hope my answer has been helpful.
  • mrsb04
18 Jun 2023 16:19
Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
This week's count is  92. 
  • CindyL
19 Jun 2023 08:59
Replied by CindyL on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
That's a good comfortable number, mrsb.  How's the pred taper going?
  • MelA
20 Jun 2023 00:16
Replied by MelA on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
Now that's a nice number mrsb!!   Yes, how is the prednisone taper going?
  • mrsb04
20 Jun 2023 07:51
Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
Thank you both. I am taking it very, very slowly with the taper 3mg/3mg/2mg for a fortnight,  so far so good. Then will go to 3mg/2mg for a fortnight. If still ok will do 2mg daily for at least 2 weeks before another drop. 

Consultant rang yesterday and suggested I  up  Ava  to 3 times a week. Her point being if I contact a virus my count will plummet so I need a safety net.  
I  can see her point but declined for 3 reasons. Firstly I feel less tired on 2 a week, secondly count of 92 was on Friday morning when I hadn't had any Ava since Tuesday evening and finally the protocol for treating ITP is to maintain a count ≥50 on the lowest possible dose. 
I did say that if count went down with this Friday's count we could discuss a slight change of dose. 
  • CindyL
20 Jun 2023 09:38
Replied by CindyL on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
It sounds like your consultant is reasonable and willing to listen to you.  That's always good.
I'm curious.  Is your consultant a doctor?  Or is he/she what we call a nurse practitioner here?
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