Coffee. . . Alcohol Have any Affect?

Good morning everyone:

I was wondering what information there was or if any of you that have ITP have had experience with your platelets rising or falling as a result of drinking/refraining from drinking coffee and/or alcohol?

I have given up coffee for about a month now, and my counts went from 5 in early November to 50 yesterday. The problem is, I can't say with any sort of certainty what caused this. I have not been on any treatment for a month now. But I have tried vitamins, gluten free, dairy free, no coffee. Anyone of these could have helped, or it could be that something else caused the increase in platelets and there is no correlation with the diet. I think it would be good to at least try some of these things. Try looking in the treatment resources section of this website if you haven't already. I've been trying to follow suggestions on the "food as a cure" page. Also, under the complementary treatment section, there are numerous supplements and vitamins listed. Many people swear by several of the supplements. I found this to be very frustrating and confusing until I realized that all of the supplements have one thing in common: high antioxidants. In my very uneducated an non-professional opinion, as long as you are taking something high in antioxidants, it has the potential to help, whether it is a very expensive supplement or just vitamin C, A, E, D etc.

i spoke with my haem the other day about the alcohol issue, my counts are good at 79 just now but she advised not to drink alcohol as if i fell , banged my head etc i am at a much higher risk of severe bleeding than someone who doesnt have ITP

From what I have discerned, it appears that any time our immune systems get "revved up" by something... be it a virus, or some foriegn "intruder" in our bodies, then it's going to "rev up" platelet destruction.

It follows then, by trying to eliminate things that potentially rev up the immune system we can potentially slow the rate of platelet destruction, enough so that our levels may still remain safe enough.

On the same note regarding alcohol. If we have a constant rate of normal destruction, and we decrease or slow our production, then our counts would theorectically drop as well.

I.e. For the sake of example if the body destroys 100 platelets per hour normally, and our bone marrow makes 90 platelets an hour normally... then if we drink alcohol which slows bone marrow production... we still remain at 100 platelets an hour being destroyed, but now we are only producing 85 platelets an hour because of the slowed down response to the alcohol?

(I guess with Alcohol, however, we'd have to see just how much it slows down the production in the bone marrow). Perhaps it's just negligible, or perhaps it is quantifiable enough to make a difference?)

...be it a virus, or some foriegn "intruder" in our bodies, then it's going to
"rev up" platelet destruction.

And when I had the flu aabout 8 years ago my count went up, 401,000. We are all very different.

I rarely drink but I'm not going to give up that occassional drink. And I will not give
up coffee.

I attribute drinking alcohol as being a significant factor to getting ITP. I had a stressful job as an aged care registered nurse, working evening shifts. I would come home late at night and have 2-3 glasses of wine to unwind. My energy levels gradually dropped as well as my ability to cope with stress. When diagnosed 5 months ago I had elevated liver enzymes gamma-gt, thrombocytopenia (70), leucopenia, and microcytic RBC,s. My GP suggested I have 'an allergy to alcohol'
I avoid the stuff like the plague these days but we are all different and there are people who can use alcohol beneficially. Alcohol however is a blood thinner and would need to be taken very cautiously with ITP. I gave up the alcohol pretty easily and don't miss it at all these days. There's some great health drinks with digestive enzymes - fermented grains/tastes a bit like beer that I like with meals. I also mix diluted cider vinegar with a probiotic which seems to improve the taste! Bit of a health nut these days.

Cheers, Sally

Melinda wrote:

...be it a virus, or some foriegn "intruder" in our bodies, then it's going to
"rev up" platelet destruction.

And when I had the flu aabout 8 years ago my count went up, 401,000. We are all very different.

I rarely drink but I'm not going to give up that occassional drink. And I will not give
up coffee.

I agree, I don't drink often at all, but if and when I feel like having the occasional drink, low platelets are not gonna stop me living and enjoying my life. If we are all that careful and over cautious and every little single thing might harm u, then we will miss out on the enjoyment part of life. I think we should all stop worrying so much and start enjoying ourselves. Life is too short, i think if like coffee and alcohol, drink it, just remember there are people worse off then us, at least we can still live with low platelets. Sorry I am in a positive mood today and it saddens me when people think they need to cut out or moderate everything in their lives cause they are scared it is gonna cause problems

My advice is simple: Everything in moderation.

Everyone is different, no two ITP cases are the same. I've tried not drinking alcohol and coffee over the years....didn't change anything as far as my ITP was concerned.
Oh sure, it was a little more difficult to get into the 'mood' for playing/singing Blues music in biker bars when I didn't have a beer on stage, but it didn't shift my platelet count at all.
ITP is just something I have, not who I am. At best, I've got a couple of decades left to kick around here, so I think I'll spend them enjoying what I enjoy...thank you very much.

I suppose both coffee and alcohol might have a marginal effect on platelets - but it can't be significant, otherwise my 12 year old son, who (as far as I know anyway) has never touched either would have a much better count than he does!

Ali

Perhaps some of you misunderstood the point of my posting. I am a young male, trying to begin a career and some may say in my "prime". I get hit with this ITP (as of today my platelets are at 1,000... yet no visible symptoms) and I was merely trying to think/hope that there is anything out there besides taking steroids and NOT being hooked to an IV 4 times a week.

I am aware there is that oral pill Promacta, which increases bone marrow production. However my reservations are stronger about putting drugs into my body like this at such a young age. If (hopefully) I live to be in my 50's and beyond, I do not want to have debilitating side effects from drugs I put in my body when I was in my 20's.

Hi, If you are not taking any treatments at present, then experimenting with diet and supplements and "normal" living might be worth exploring. I also have been at 1,000 for a few days here and there and have learned just to be careful on those days and pay attention to what I have eaten and/or stress level prior to the drop. From what I understand, platelets can vary by 30,000 in non-ITP people, so why not for us?

I also feel that when this first hits you (others can chime in here) the counts can bottom out more often. As you body adjusts, the low-low drops aren't as often and your body settles in. Dunno! Keeping a food/health/drug/count diary might be handy.

Theresa

(I also miss my wine but I'll imbibe at the holidays for sure!)

You made me think back to when I was first diagnosed. I was in my 30's and remember thinking how intrusive ITP was on my life. I had a perfectly good life...full time job, three kids, a full life to juggle and then comes this ITP to mess it all up. I made the decision to just keep life as normal as possible and not allow it to affect things. It can be difficult to add that to an already hectic life, but you can manage it.

I understand the reasons behind your treatment concerns, but you can probably avoid the IV's; I did, never had IVIG because I just said no. Doing a round or two of steroids probably won't cause much harm, but you don't want to be stuck in that loop over and over again. Most of the treatments have the potential to cause side effects, both short term and long term, so making the decision of what to do is important based on lifestyle. I made treatment decisions based on time and side effects. If it took too long, I didn't want it because I just didn't have time. I used to run to the doctors office and get Win-Rho during my lunch hour, then fly back to work.

Stopping coffee and alcohol surely can't hurt; a lot of people make diet changes when they are diagnosed and that is a step toward a healthier lifestyle, ITP or not. You can try your eliminations and see if they make a difference. Everyone responds in different ways. I think the responses you got so far though were just personal experiences had and many years of watching others here. Believe it or not, the same topics come up time and time again.

Finding a good way to manage ITP is difficult when you have treatment criteria to meet; they all have their pitfalls. I wish you luck - - keep us posted!

Sandi,

Thank you for you response. That is exactly the situation I am in currently. I want my "normal" life. I don't want to put foreign drugs in my body that are going to mess me up later down the road. At the same time, I have no "symptoms" visible (even right now as I have 1,000 platelets).

In your experience, how have the bone marrow stimulants worked for you? Do you see the side effects of such drugs right now?

Also, in your experience have you been exposed to this spontaneous bleeding risk just because your counts are low?

vpd,
If you search the discussion boards for nplate or promacta you will see reports of many experiences with bone marrow stimulants. Many folks here have used them. Some with major side effects, some with very few. Some with good results, some not. Lots of reports though.

Also some members have experience spontaneous bleeds at low counts. A minority of us, sure, but not zero. There is a current thread about brain bleeds you can check out.

The risk is also from injuries, not just spontaneous bleeds - you could get a head bump and have a serious bleed.

We have members here who have lived for years with counts below 10. Usually this is not their choice but rather because no treatments work - but sometimes people have chosen to avoid the drugs and live with the low counts.

It's a matter of weighing the risks. Those weights are personal. Everybody wants their normal life back.

Educate yourself on every option, and keep close track of what is going on with your body!

Have you considered WinRho (if you are rh+)? It seems in some ways to be the 'mildest' of treatments for most people, if any of these treatments could be called mild.
Erica

WinRho.

I am not sure what rh+ means? Is that a blood type of issue?

Also, what is the difference between WinRho and NPlate or Promacta? Are they all not bone marrow stimulants?

No WinRho is not a bone marrow stimulant. You have to be RH Positive to use it. It does something like coat the red blood cells with something that makes the spleen attack them instead of platelets. Some people understandably have anemia as a result and can't use it, others do great with WinRho, others, no effect. Some on this board have used WinRho for years, it lasts anywhere from a few weeks to a few months with each treatment which is less than an hour. You need to look on the PDSA treatment page and read up on these options, and be your own patient advocate with your doctor. You may need to suggest things to your doctor - frustrating yes but you are the one in the best position to manage your options at this point.
Erica

I've never used the TPO's, they are relatively new and I've been in remission since they became available. There are many others who can help you out with that question.

My counts have been as low as 3. I wasn't comfortable being that low, above 15 or so I was okay. I had petechiae, although they really weren't that bad for a count that low. I've also had purpura which was much worse. Very large, purple spots all over me. I've had the huge, black bruises too, but never really had any bleeding. I did treat below 10 or 15, above that I just monitored. I was diagnosed in 1998, btw.

Prednisone has been my main treatment. As I said, I tried Win-Rho about 6 times, but it had no affect. Side effects were mild. I tried Danazol and Dapsone and had to stop both before they could do anything due to side effects. I also tried Rituxan, because I was out of options at the time and absolutely had it with steroids. I'd say that Rituxan has been the most successful treatment, but I paid a price with a bad side effect. It gave me ITP remission, but triggered another problem that is worse. My experience is very, very rare.

I am on Prednisone permanently and have been for 6 years. Before that, I was off and on high doses quite a few times. It hasn't caused any damage yet, but I know that will catch up with me eventually. I'll worry about that then.

I know you want your normal life. Everyone does. My daughter is your age and was diagnosed with Graves Disease three years ago. I hate what she goes through with fatigue and blood pressure meds and heart monitoring. It's not fair. There are so many things that can go wrong with the body but the best advice I ever got was: It's manageable. It takes time to let that sink in and really understand what that means. The first reaction is "well, I don't want to have to manage it"! But you find that you do somehow weave ITP into daily life and you get through the days the best you can. It gets easier in time and eventually, it's no longer the focus of your days, it's just another part of life. You can still keep your goals and dreams and plug through. And, there is always the chance of remission. It's not as uncommon as you think.

Thank you both for your responses. I will have to do some research on it and potentially suggest it to my doctor if Prednisone does not work. (The Prednisone worked once before so I imagine it will do so again). Also the Decadron 4 day pulse worked to get me from 12,000 to 152,000. But I obvously crashed down to 1,000 right now.

I guess I should be thankful that I have a doctor that does not spaz out and jump to treatments and splenectomy so quickly. Certainly other doctors may have put me in the hospital today and infused me with stuff.

I also don't believe removing the spleen is worth it because as some people have said, ITP just comes back even with the spleen removed.

I think that is the anger of this situation. I can expect having medical problems as I get older, but not at age 27. Not in the prime of my life and trying to balance a career, potentially have a family, etc... it's a hard pill for my wife to swallow as well.

Speaking of families, has there been any link found regarding inheretence or genetic links to passing down ITP?

vp I know someone who was diagnosed with cancer at the age of 20 years old - there are no guarantees in life.

I don't know if you have read the treatment section or if anyone has suggested it to you:
www.pdsa.org/treatments.html
There you can click on Conventional Treatments or Complimentary Treatments.

Making positive health choices doesn't need to be a stressor. I find it empowering and helps to alleviate anxiety.
Enjoy, :laugh: Sally

Like Melinda said, there are no guarantees in life. It is hard to accept having a medical issue, but life can be normal with ITP. Honest. Not always easy, but normal nevertheless. My daughter is 25 and may not be able to have children because of her Graves. We were just talking about it last night. She's on medication that can cause birth defects and cannot stop taking it. If she wants to have a child, she will have to plan it carefully and go through some major changes with meds and carefully monitor her thyroid levels. It won't be an easy road.

There are people everywhere with medical issues, please know that you're not alone. There are treatments that can cause remission and if you want your life back, you may have to bite the bullet and go for them. Tough decisions in life, I know.

The problem I see is how far do you go ? How much do you give up ? If you give up drinking coffee and alcohol then surely you've got to stop drinking tea as tea contains caffeine.
No more soda's then as they contain all sorts of toxins. So then your left with water but do you have tap water or only bottled water ? Or do you boil your water and drink it once it's cooled down.
How about food ? No fats, no sugars, how about carbs ??? Where was that piece of fish I just ate caught? Were there toxins in the water ??? Where were the vegetables grown and what insecticides were used in the growing process? I could go on and on but I think you get the point. You could obsess all day long about what you should or shouldn't avoid.
The only thing for certain is that it'll lead to a dull life. No more eating or drinking out. Eating bland meals etc. etc.
I'm not willing to let ITP ruin my social life especially when no-one can say with any certainty that certain foods and drinks have any effect on your platelet count.
Everything in moderation.

I agree, the important thing is not to stress and to enjoy life. However, making positive health choices should ultimately increase our appreciation of life.
I can't agree that eating healthy means eating dull or not eating out. I guess that's one of the few health advantages of living in the center of a relatively wealthy city - access to lots of healthy organic food and choices of places to eat.
However, I feel the shift in awareness of health issues is making it easier for most people to eat healthy, unprocessed, and even organic food. More power to it I say!
Sally

Thank you all for your insightful responses.

I am in complete agreement when I say that life (especially platelet counts) should not be a ball and chain in how we approach and live our lives. If one likes to indulge in coffee or alcohol, so be it.

The problem here seems to be risk vs. reward. As my reading has indicated, having ONLY ITP (low platelet count) and no other serious medical problems, can probably be left alone and merely monitored. So long as you are aware of the risks, and so long as there are no outward visible signs or symptoms (easy bruising, blood blisters in mouth, etc...) then we can all just go about our days functioning on lower platelet counts.

Currently... I have under 1,000 platelets on Friday. I've been on Prednisone now (60 mg) for 4 days. I'm hoping my counts have gone up, and after the tapering occurs, perhaps they will remain high for awhile.

Best wishes and a sincere platelet prayer to you

I hope they have gone up too. Keep us posted!

You know what is funny... today sort of feels like a "Christmas Day". Have any of you felt this way before.

It's 9:25 am right now and I had a CBC drawn this morning. I am ANXIOUSLY awaiting the call from the doctor's office to let me know what my platelet count is. It's so bittersweet right now though. I know that one call can make or break a day.

I guess since my last count was 1,000 on Friday, I have nowhere to go but UP... and since I'm taking 60 mg of Prednisone since Friday, I would suspect them to increase.

It's just like waiting for a gift though... I have hopes, but I don't want to get them to high or else I will be let down and crushed.

Do any of you feel this way?

I feel that way too. I had IVIG Monday and Tuesday and am having a blood count done on Friday, so I am anxiously awaiting Friday to have it done and see if the IVIG has worked.

Update:

So Christmas arrived . . . My platelets were at 48,000 today after taking 4 days of 60 mg of Prednisone.

I'm going down to 50 mg now.