I just went to Cleveland clinic in January for a case review and saw Dr. Lichtin. He is an expert in ITP and has been doing research on it since the 90s. He was wonderful to work with.

Hi,
I am new here and I was trying to see if anyone has done genetic testing for the MTHFR Gene mutation?  I recently saw a study that indicated that they are finding a correlation with poor methylation and ITP.  Here is an article that I found.   www.sciencedirect.com/science/article/pii/S0037196313000450

I am homozygous for 677T/T  carrying two copies.  If you look at other symptoms involved in poor methylation there is a list of other complications.  I recently started taking supplements in the form of Lmethylfolate and I am feeling much better.  But, I have an upcoming appointment with my Hematologist.  I have two questions, has any of you been tested and did supplementing for MTHFR help you?

There is a low dose rituximab protocol which can drastically cut costs.
Here is a thread I started on it many years ago:
pdsa.org/discussion-group/7-treatment-general/27993-low-dose-rituximab-rituxan-research.html?start=0
And here's an update :
pdsa.org/discussion-group/7-treatment-general/27993-low-dose-rituximab-rituxan-research.html?start=120#71889
"Conclusion: Rituximab was effective and safe for adult patients with ITP. A low-dose rituximab regimen might be an effective alternative to the standard-dose regimen in ITP, as it showed similar CRR, ORR, and SRR at month 12 and was relatively safer with a lower cost."

Here's an update to 2023: "The 2023 ACR/EULAR APS classification criteria include an entry criterion of at least one positive antiphospholipid antibody (aPL) test within 3 years of identification of an aPL-associated clinical criterion, followed by additive weighted criteria (score range 1-7 points each) clustered into 6 clinical domains (macrovascular venous thromboembolism, macrovascular arterial thrombosis, microvascular, obstetric, cardiac valve, and hematologic) and 2 laboratory domains (lupus anticoagulant functional coagulation assays, and solid-phase enzyme-linked immunosorbent assays for IgG/IgM anticardiolipin and/or IgG/IgM anti-β2 -glycoprotein I antibodies). Patients accumulating at least 3 points each from the clinical and laboratory domains are classified as having APS."
pubmed.ncbi.nlm.nih.gov/37635643/

Beth
Alcohol has never made a difference to my platelet count. 

I wondered about Lexapro after reading about its possible effects on platelets. But trying to discontinue Lexapro was so unpleasant I resumed it quite quickly. After learning about symptoms I realised my itp goes way  further back than my Lexapro use, and with mycophenolate have controlled itp (so far ...) while continuing Lexapro. The drawback : both cause dry mouth/throat and I continually drink water and use medicinal chewing gum 

Hi everyone, thank you all so much for your kindness and great advice. It has really helped me to know that I'm not alone, and that you're all out there enjoying your lives despite having ITP! There's been a few points mentioned that I shall answer:

- My hematologist is definitely very good and I'm glad he's done the right thing in not medicating me. He has reiterated that unless I start to show any symptoms like unsual bleeding or bruising, he will not give me any medication. He said if I get below 50 then he might consider it but it will depend on my symptoms and general wellbeing. At the moment I'm only getting tested every three months so he's obviously not overly concerned.
- I know fatigue is a symptom and probably explains my love of naps! Having said that, I do have a very busy job that requires around 10 hours of work a day, so if I'm feeling tired it could well be because of that and in any case, I'm still able to function well so it's not a big problem.
- I had heard about tomatoes being bad for you, living in Spain means that I eat them quite a lot! I might cut them from my diet and let you know if it makes a difference.
- Does anybody know how much of an effect alcohol has on ITP? I haven't really looked into it in much depth and was wondering whether cutting it out would increase my count.

Again, thank you all so much for the advice and for welcoming me to the community! I have my next blood test in April and will let you know how I get on.

I have a teen newly diagnosed with ITP that was suggested to go back on antidepressants.  Previously was on Lexipro when diagnosed with ITP  so went off it. Does anyone have experience with ITP and taking antidepressants (which may actually lower platelet count) or know of a good doctor that is familiar with this subject?

My teen is newly diagnosed with ITP.  We can't seem to find a cause but there is speculation that it was either caused by a virus or from taking Lexipro (an antidepressant). So my teen went off antidepressants but  now is really suffering from anxiety/depression-maybe even more than before due to low platelets and Dr's thinking of putting him back on some kind of antidepressant. Can't seem to find any doctor or psychiatrist that have put patients with ITP on antidepressants as they are known to cause low platelets.  Does anyone have experience with putting their child on antidepressants or any other med for anxiety or depression.  Or know of a good doctor that has experience with this?

Hello Beth
Welcome, I agree with Mel and Cindy. 
Absolutely spot on not treating a count of 70.  Over here in the UK nowadays a new patient with a count above 30 is very rarely treated.  A watch and wait approach is employed.
Guideline  for  long term patients  with low counts is to treat with the lowest dose of medication to maintain a count of 30.  
Some people (and some doctors)  tend to get very hung up on counts whereas it is the symptoms ie bleeding that are the problem.
I have tried many medications over the 10 years I have had ITP some have worked ,some haven't and some I refused to  continue taking as the side effects are worse than having ITP. 

I have made no changes to my diet  or my lifestyle other than not drinking Tonic Water as that is known to lower platelet count in some people. Rarely I think but as I am unable to keep my count in double figures without medication I do not touch it, and put orange juice in my gin instead. I eat lots of tomatoes. 

Regarding viruses and infection that will be a wait and see, everyone is different. Bacterial infections have no effect on my count but a virus will usually drop my count quite alarmingly but a 3 day course of high steroids usually brings it back up.  

Fatigue too  is individual. It's a case of pacing oneself and listening to your body, I gave  up worrying about it years ago. I rule my life, my ITP does not. I have to say I rarely notice it  since I  retired and when working on the NHS front line I used to manage 12 hour shifts with a count of 2 without too much of a problem. I have to say I never did 2 consecutive days I always had at least 1 day off between shifts. 

Hopefully  you will maintain your present count. Please let us know how you get on. 

Hi, Beth, welcome!  One thing to remember is we are all different.  I agree with Mel about your doctor not treating at 70.  Mine didn't treat me unless I was under 30.  The lowest I've been is 7.  I didn't change my diet unless it was something on the no-no list that I didn't like! 
Please keep us updated on how you are doing!
We shouldn't eat tomatoes???  Oh, no!  I love fried tomato sandwiches!  And we eat a lot of pasta with tomato sauce.

Welcome Beth!   First off I was diagnosed ITP in the spring of 1989 with a count of 11k and dropping - back then the treatments were prednisone or splenectomy and I opted for prednisone.  The future from there?  Well, a couple of months later while on 60mg of pred daily we moved to Tokyo where I had a wonderful hematologist, then to Hong Kong where I knew more than my hematologist   It was scary but couldn't pass up the chance of our family moving overseas.  The only thing I stopped doing was skiing - decided that was probably a good idea.  I just live my life really just as I always have - my count is lower than the normal low but a decent - I do ask my hematologist about things, like I was advised not to take a multi-vitamin with E in it, when I had knee replacement and was on a baby aspirin to prevent clots he tested my platelet count every 2 weeks, things like that. Years ago when I got the flu believe it or not my count went up to 401k!   I did read on this site that tomatoes weren't good for us, well ever since then I have craved tomatoes how is that for being nuts!  I have a great hematologist who loves blood and knows a lot about ITP.

I will say good for your hematologist not treating at 70k!!  Sounds like you are in good hands!  How often is he/she recommending that you test?  Of course you are overwhelmed, I'd never heard of a platelet until ITP so there was a mystery about all of this - you will come to terms with this - guess the best advice is read all you can at legit sites and keep positive!

PS - Spain, lucky you!!

Hi everyone! I'm new to this group and writing to you all from sunny Spain! I was diagnosed with ITP a couple of months ago and for now have been told I don't need any medication or intervention (my latest count is at 70,000). Otherwise, my general health is excellent and day-to-day I have no problems, except for occasionally feeling fatigued or having nausea. I'm lucky enough to have an excellent hematology department in my local hospital and they are not concerned about my levels for now, but sometimes I worry about what the future holds, and would really appreciate any advice about diet, exercise and general lifestyle tips that you guys have found work for you. What can I do to help keep my levels up? What will happen if I get some kind of virus or infection? It's so much new information that I feel a bit overwhelmed so it would be great to have some support from this lovely community!

Cathy and I are heading out this afternoon for our walk!
Pics should be up tomorrow!

We're just not comfortable around crowds yet.  Which is going to prove interesting.  I turn 65 in July, and I want to go to one of our local restaurants for my birthday.  They have these felt moose ears you can wear on your b'day.  Of course, I don't even know if they still do that because of Covid!  I'll have to look into it.
I'm glad you don't have Covid.  We'd never know if we had it since between the two of us, we have all they symptoms.  And have had long before it was a thing!
We've only been out once this year.  It's that time of year where we go by the weather.  Haven't checked to see what this weekend is looking like.  Hopefully we'll get out!
Hope the cough goes away and you aren't so tired soon!

You are so smart Cindy (and Steven) for wearing your masks - just can't be too cautious!!   It was twice I forgot my mask at the grocery store, dumb mistake and I paid for it.  Still coughing and still tired.   I need to ask my doctor about the RSV immunization - guess it won't bother our platelets.  

I need to go find my favorite photographers page, it's been a while since I was sick

Hope you feel better now, Mel!
The other day when Steven and I were at the store, I did notice more {not by much, mind you} people wearing masks.  Usually it's just us.   Even my sister doesn't wear one in the stores now.
As soon as the RSV vaccine is approved here in Canada, Steven and I will be getting it!  Or doc wanted to give it to us when we got our flue shots, but it wasn't approved.
I have an appointment at the hospital tomorrow and I will be wearing my mask.

I started the New Year off wrong, got sick - cursing myself for forgetting to wear a mask to the grocery store a couple of times.   Thankfully not covid or rsv - but a nasty bug that is going around.  Still coughing but coughs take a while to go away.

Wishing everyone a happy & healthy 2024!!

Hello everyone, Is anyone's pharmacy having trouble getting Nplate? I found it was working well for me now they have trouble getting it. Any suggestions on what I can do. My hemo is aware and we have a back up plan - regular IVIG !

I make coconut milk because I'm allergic to cow's milk and don't want to get my immune system grumpy.  I don't have an intense allergy so I am able to consume it in a pinch if there is nothing else available but I do make an effort not to consume my allergy foods.  I drink 1/4 c of coconut milk with a cara cara orange, 1 c cantelope and a frozen banana daily.  If I don't have time to make the milk as its a two hour sit and wait then I buy a can of coconut milk and dilute it with water to lower the fat content.  My smoothies are so good and yes, i get platelets from this not sure if it's the folate, calcium in orange or just plain old vitamin c.  My smoothie does smell like a baby aspirin LOL.

Hi,
I had a Pulmonary Embolism detected in Feb 2022 due to a change in medication which resulted me to get hospitalized and I am still taking blood thinners, however, no influence of clothing for this.

Hi,
I was diagnosed with ITP in Nov 2021 and later I was provided with different medication regimes. I had the platelets under control starting Jan 2023 however towards the end of 2023 the platelet count again went down with a limited explanation maybe due to the use of antiinflammatory drugs. I want to understand if there is any kind of literature/sources available that provides a list of allowed Anti-inflammatory drugs that can be administered, and also, to add the list of supplements that may influence platelet reduction.

Hi Clarissa,
Just checking in to see how you are doing. I hope cured!
Best,
Cindy1

Hi,
I am just cheking in.
How are you doing?
Cindy1

Hi Vancouver40,
Wondering if you tried the Parastroy and if it helped your ITP? I hope so!
I hope you are doing well!

Cindy1

Yes. Cured from 6 months of crashing platelets in 2017 when I needed IVIG, Promacta, Steriods, etc. every 7-10 days. I was cured after I took a parasite destroying medicine called Parastroy. (I think it was for 4 weeks) Any similar Parasite destroying homeopathic from a vitamin store would work too.  I also got 2 Rife treatments (but maybe the Parastroy alone cured me) and started a variety of other homeopathics to clear and rebalance my system from the mess it was in. It did take several more months of titrating prednisone slowly down so my body would not have a rebound platelet crashing issue.  Prior to keeping some low dose prednisone (which I slowly titrated down) in my system after the IVIG and decadron wore off, I did find that my body was on  a viscous platelet crashing cycle.
Sorry I am just responding to your question. I have been off the website for a while. I hope this helps. Please let me know if you have any other questions.
I hope you are doing well.
Cindy1

Mel, I can't explain it.  I only know that for most of my treatment time on NPlate, my insurance has been charged for an entire vial for each injection, even though I hadn't received all of it.  That's no longer the case.  The drug company now has to absorb the difference,  which strongly suggests to me how wildly overpriced the stuff must be that they can still glean a profit from what is actually being used.

I don't get why an insurer would balk at self-injection.  It would save them money, wouldn't it?  The pay my MD's practice for giving shots, but they surely wouldn't pay me!

Margaret, thanks for that information.  Good to know!

Even the expiry date seems like a marketing thing. My GP told me dry medications do not lose their effectiveness with time. Different with wet stuff. I subsequently Google Scholared it and concluded he was right - no research has found deterioration in dry medications if properly stored

 Janet, why in the heck would a company be compensated for an unused portion of an injectable drug??  Good heavens - patients don't get compensated for pills that are past the expiration date and can't be taken.  Oh my!

mrsb I know someone who was to self-inject a drug for osteoporosis - went to doctor to get instructed on how and then found out insurance wouldn't allow that and would have to go in for the procedure all the time.  The person even has an RN family member who offered to inject, nope can't do.   Self-injecting would have been minimal cost, having to go in would have been very expensive so went back on the pills.