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Does anyone with ITP drink alcohol?

Katsim
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12 years 6 months ago #31733 by Katsim

Does anyone with ITP drink alcohol? was created by Katsim

Not sure if this is the right place for this question but.....

I haven't had any alcohol since January. I have started a gluten free diet and have been de-stressing and today I've found out that for the first time since my diagnosis in December 2012 my count has stayed stable for 3 weeks! Admittedly it was after a small Ivig dose and I'm still on prednisolone BUT this hasn't happened before.

So I'd like to celebrate with a small tipple or two over the Easter weekend. But I'm also worried it might negatively affect my platelet count. Does anyone else have the odd drink? Is there anything I should steer clear of? Is anyone almost sure that alcohol does/doesn't affect their counts?

Oh, I should add that I know not to have tonic in anything and I've heard red wine isn't great either :-(

any thoughts/experiences?

Thanks all :-)

Lowest count 1. Highest count 207 (ivig) Indium scan showed predominantly splenic destruction. No meds currently, just seeing how things go.

"Life isn't about waiting for the storm to pass - it's about learning to dance in the rain".

2Jacks
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12 years 6 months ago #31734 by 2Jacks

Replied by 2Jacks on topic Does anyone with ITP drink alcohol?

Yes, just not excessively. If you enjoy a drink or two have it - life does not have to stop because of ITP.

Congrats on your stable counts!

The following user(s) said Thank You: Katsim

CindyAnn
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Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17

12 years 6 months ago #31737 by CindyAnn

Replied by CindyAnn on topic Does anyone with ITP drink alcohol?

All GOOD

things in moderation - the occasional drink or two does not interfere with my counts. Congrats on your counts!

Cindy Ann

The following user(s) said Thank You: Katsim

tamar
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12 years 6 months ago #31738 by tamar

Replied by tamar on topic Does anyone with ITP drink alcohol?

My hematologist encourages a glass of wine now and again.

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CindyL
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12 years 6 months ago #31739 by CindyL

Replied by CindyL on topic Does anyone with ITP drink alcohol?

I have a Bloody Mary every week and sometimes a rum/pepsi or even a glass of wine. My counts have never changed. Haven't been drunk since hubby's sister's wedding about 10 years ago.

The following user(s) said Thank You: Katsim

Katsim
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12 years 6 months ago #31740 by Katsim

Replied by Katsim on topic Does anyone with ITP drink alcohol?

Thanks for sharing your experiences! I feel reassured knowing other people have the occasional drink too.

I think i will have a glass of wine or two - now just have to break it to hubby that he'll have to crack open the really good stuff ;-)

12 years 6 months ago #31741 by

Replied by on topic Does anyone with ITP drink alcohol?

I don't drink any 'odd drinks'....they are pretty normal.

Never have liked the taste of alcohol in vodka, gin, whiskey, rum, and such...but I enjoy beer and wine. I drink a beer daily, 2-3 if I go out. At this time, it's usually a local double IPA; Bells Hopslam, CBC Creeper or CBC Bodhi, Breckenridge 471, Great Lakes Alchemy Hour, etc. A tad more potent than a BudLite I will admit. But I do try to keep the glass size under 32 ounces.
I've tried both 'not drinking' and 'situation normal' in the past 10 years and neither affected counts (for me) one way or the other.
Life doesn't come to a screeching halt when diagnosed with ITP.
.

KayL
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12 years 6 months ago #31773 by KayL

Replied by KayL on topic Does anyone with ITP drink alcohol?

None of my friends believe me but I'm pretty sure the lower my platelet count is the easier it is for me to get drunk.

College Me would have thought that was awesome. Adult Me not so much. Nobody wants to be That Girl out in public. :woohoo:

Dave
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Diagnosed October 18, 2011 Bloomington, IL

12 years 6 months ago #31855 by Dave

Replied by Dave on topic Does anyone with ITP drink alcohol?

Weirdjack,
I'm a big IPA fan and like the doubles too. Bells and Great Lakes are two of my favorite breweries and I like the Breckenridge beers I've tried too. I just tried Great Lakes Alchemy Hour last month and loved it.

I cut back on drinking when I was diagnosed and stayed pretty sober throughout my Prednisone taper. I still drank a few beers sometimes, but never got drunk. My counts were actually higher after drinking in moderation the previous few days than when not drinking at all the previous few days. All counts were within the normal range. When I got off Prednisone and my count held in the normal range, I got drunk a few times. I have a few times since then as well and my counts have still held. I would not drink on a really low count because alcohol can negatively effect platelet function, but it seems to have no effect on my platelet count.

Mark
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12 years 6 months ago #31864 by Mark

Replied by Mark on topic Does anyone with ITP drink alcohol?

One thing maybe to be aware of is that the quinine in tonic water and bitters can reduce platelet count. So if you're concerned, I would not have a gin and tonic...

Ann
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12 years 6 months ago #31869 by Ann

Replied by Ann on topic Does anyone with ITP drink alcohol?

Mark, you've hit on my favourite subject.. quinine. Only people who have a very rare quinine induced thrombocytopenia need to avoid it. In those people the count will immediately plummet and will also immediately recover on cessation of taking the quinine. So really we need not worry. Besides that my favourite drink is gin and tonic.

The following user(s) said Thank You: Mark

Mark
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12 years 6 months ago #31870 by Mark

Replied by Mark on topic Does anyone with ITP drink alcohol?

Ann - thanks for the clarification!

karenr
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Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.

12 years 6 months ago #31897 by karenr

Replied by karenr on topic Does anyone with ITP drink alcohol?

One advantage for me of not drinking is that I am quite reliant on acetominophen (as are some of us who need mild pain relief and can't take NSAIDs). Tylenol and alcohol both can have an adverse effect on the liver.

dappykatz
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8 years 5 months ago #59072 by dappykatz

Replied by dappykatz on topic Does anyone with ITP drink alcohol?

Hi Guys...I'm new to this...was diagnosed with ITP last December....My numbers were 91 ....but the next two tests were 104.....Question I was a glass of wine a day person. And sometimes a whisky..My Hemotologist said....confine that....I've been confining it to one or two on the weekend . And I've held steady at 103 and 104 ..But sometimes if I have a tense day, I want to have a cocktail...or like this week I a couple of events...I just sipped a little...I'm just curious how some of you handle this...particularly is you emjoy a drink/ glass of wine or a whisky...Because I get uptight and worry about the drink that I just had or might want to have...can you guys give me some perspective. Thanks / barry

mrsb04
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ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

8 years 5 months ago #59075 by mrsb04

Replied by mrsb04 on topic Does anyone with ITP drink alcohol?

Alcohol has never made any difference to my counts

CindyL
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8 years 5 months ago #59077 by CindyL

Replied by CindyL on topic Does anyone with ITP drink alcohol?

Mine either.

anon
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8 years 4 months ago #59098 by anon

Replied by anon on topic Does anyone with ITP drink alcohol?

At the ITP patients' conference in London, UK on Saturday all the doctors on the panel agreed that there is no reason at all to stop drinking alcohol with ITP. The doctors were from the UK, America and Canada.

Kelirae24
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I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004

8 years 4 months ago #59419 by Kelirae24

Replied by Kelirae24 on topic Does anyone with ITP drink alcohol?

I was diagnosed at 17 so I've had itp for 14 years now and I get very low with no treatment 0-5 right now I'm on nplate but when I was 21 I drank a lot and my numbers never seemed to show a difference I have a beer a night just to unwind and I usually have a few cocktails on one weekend night and it never seems to influence my counts I stopped drinking once for a couple months just to see if there was a change but there wasn't.....phew lol

jayinchicago
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8 years 4 months ago - 8 years 4 months ago #59431 by jayinchicago

Replied by jayinchicago on topic Does anyone with ITP drink alcohol?

Alcohol has definitely is a factor on ITP.
If somebody drinks alcohol and if it affects Thrombopoetin production then its results are permanent.
stopping alcohol for couple months or for a week will not reverse that.
Thrombopoetin is produced in the liver which is where alcohol is synthesized.

mrsb04
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ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

8 years 4 months ago - 8 years 4 months ago #59433 by mrsb04

Replied by mrsb04 on topic Does anyone with ITP drink alcohol?

Jay
Please can you direct me to an evidence base for "Alcohol has definitely is a factor on ITP.
If somebody drinks alcohol and if it affects Thrombopoetin production then its results are permanent" ?

jayinchicago
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8 years 4 months ago #59439 by jayinchicago

Replied by jayinchicago on topic Does anyone with ITP drink alcohol?

Just do a quick google search of the following term and you will see countless articles show up-
alcohol thrombopoietin thrombocytopenia

gut.bmj.com/content/44/5/754

www.dovepress.com/the-pathophysiology-of-thrombocytopenia-in-chronic-liver-disease-peer-reviewed-article-HMER

www.ncbi.nlm.nih.gov/pubmed/18433919

mrsb04
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ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

8 years 4 months ago - 8 years 4 months ago #59441 by mrsb04

Replied by mrsb04 on topic Does anyone with ITP drink alcohol?

I googled last night & came up with countless articles that all refer to people with liver disease/alcoholism .This is why I asked for your evidence base. I have neither & was interested to see if you'd come up with anything else as alcohol has never affected my counts. I gave up alcohol for 4 months when I was diagnosed and never had a count above 46.

Kelirae24
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I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004

8 years 4 months ago #59444 by Kelirae24

Replied by Kelirae24 on topic Does anyone with ITP drink alcohol?

I was diagnosed at 17 so I didn't drink I got itp after I got mono so that's why I say alcohol doesn't effect my counts

karenr
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Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.

8 years 4 months ago #59460 by karenr

Replied by karenr on topic Does anyone with ITP drink alcohol?

Because ITP means I cannot rely on NSAIDs for pain relief (as I did before diagnosis), I take a lot of Tylenol. I don't tolerate opiates, so Tylenol is very important for me--I relied on it after major surgery. The amount of Tylenol I have taken at times is safe only because I don't drink alcohol.

jayinchicago
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8 years 4 months ago #59466 by jayinchicago

Replied by jayinchicago on topic Does anyone with ITP drink alcohol?

Hi Keli\Mrsb,

What Iam just saying is there are some subsection of ITP patients for whom alcohol is a factor.

The problem is you dont know definitively whether you are part of the subgroup or not.

Plus like ITP antibody tests Liver tests for cirrhosis are not 100% positive either. Many people who are not diagnosed do still have partial liver disease.

So my advice is stay away why do you want this additional headache.

Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

8 years 4 months ago #59468 by Sandi

Replied by Sandi on topic Does anyone with ITP drink alcohol?

Alcohol has always been known to inhibit platelet production. It's been in the literature for years. I'm sure the amount of alcohol makes a difference. This is one article:

The diagnosis of primary ITP is one of exclusion. Both non-immune causes of thrombocytopenia and secondary immune thrombocytopenia must be considered. Non-immune causes of thrombocytopenia include exposure to drugs or toxins that suppress platelet production (alcohol, chemotherapeutic agents), splenic sequestration of platelets, primary bone marrow disorders, prior radiation exposure (therapeutic or incidental), and inherited thrombocytopenias.
www.ncbi.nlm.nih.gov/pmc/articles/PMC3672858/

Hal9000
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Give me all your platelets and nobody gets hurt

8 years 4 months ago #59477 by Hal9000

Replied by Hal9000 on topic Does anyone with ITP drink alcohol?

karenr, I have been studying individual PDSA forum stories and putting them into groups based on drug responses. I notice that your drug responses seem to put you into the same category as 'Ann' and 'EmilyK'. Further, your counts like theirs, don't fluctuate much when only taking steroids - which reinforces the notion that you are in that group.

The important part that I wanted to mention is that Ann achieved remission using NPlate and EmilyK achieved remission using Promacta. I know you are doing well with steroids alone but it may be worth it to try either of these because of the possible remission.

Just wanted to mention. Best of luck to you...

ITP Types and Treatments by HAL

Margaret k
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8 years 4 months ago #59480 by Margaret k

Replied by Margaret k on topic Does anyone with ITP drink alcohol?

Neither alcohol nor Tylenol- paracetamol in the Uk- make any difference to my count. I take paracetamol often for sciatica. No one,not even the completely healthy,should take more that 8 500mg paracetamol tablets a day anyway, that is the max safe daily dose as it can damage the liver otherwise. If you are worried about liver function you could get a liver function blood test done every 3 months or so when you get a platelet count done .It only involves filling another vial of blood for the lab (and maybe a cost in the USA.)

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