Need advice

[light]

Hello to all my MPN's.

Last year in September I had a heart attack and had angioplasty and had three stints put in. I was also put on medication for heart and one of them is Clopidogrel. I am also on 75mg Aspirin and 135 mc Pegulated Interferon every three weeks. The reason for heart attack was not blood cloth but the narrowing of arteries.

Now I have a problem with blood traces in my gut and have to have CT a colonoscopy. It is confirmed by my cardio doctor that a combination of Aspirin and Clopidogrel causing this bleed in my gut.

Did any of MPN'd had that experience and if they have to change from

Aspirin to some other kinder med and what that was? As to Clopidogrel, I am stopping it in September.

Wishing you well

[yippinurse]

I have PV with Jak2 positive and two years ago I had a heart attack with three stents placed. They put me on blood thinners on top of my baby aspirin and I was bruising everywhere. We have to be careful because as much as we can clot we can also bleed. Unfortunately most cardiologist don't know anything about MPN diseases. Make sure your cardiologist consults with your hematologist. Once you're off the cardiac meds you should return to normal.

[light in reply to yippinurse]

Thank you so much for sharing your experience with me. Me too bruise very easy and they stay for a long time. I do use a mix of Francensence and almond oil to help bruises to heal.

Wishing you well

[beetle]

I had GI bleed when taking clopidogrel. I hope you get sorted soon

[light in reply to beetle]

Thank you I hope so too. I am stoping Clopidogrel in September and I hope that it did not do much damage to my gut. Today I went for CT pneumocolon and it was very tough including the process of preparation for the scan. Exhausting!

Wishing you well

[beetle in reply to light]

It’s not pleasant is it! Glad you have it behind you now and that the results are not scary

[socrates_8]

Hey light...

Aspirin, that is NOT, 'Enteric - coated' is known to cause all sorts of bleeding problems.

Hence, First check if yours is Enteric Coated or not?

Best wishes

Steve

(Sydney)

[light in reply to socrates_8]

Thank you so much for sharing this. While ago I spoke to my pharmacist and he reassured me that there is no much difference between Aspirin coated or not. I will speak to my Heam next week.

Wishing you well

[socrates_8 in reply to light]

Well there was in my case... & once I switched things were a whole lot better...

Steve

[light in reply to socrates_8]

It appears that there is a difference in my case too and I will talk to my Heam and G

P too so they can change for coated one.

[Janus2mutant in reply to socrates_8]

Hi Socrates that is unfortunately not proven even though I was told the same: “Enteric aspirin, sometimes called safety aspirin, is coated so that it doesn't dissolve in the stomach but instead dissolves in the small intestine. This quality prevents stomach upset. But the coating doesn't protect against the bleeding and ulceration that can occur after frequent aspirin use.”

It is shown that plavix and aspirin taken together can cause GI bleeds. When you are high risk like a lot of us on this forum and already had a heart attack you have no choice. That is why I want to know what else can be done vs just not taking the meds. Has anyone stumbled upon a natural remedy to help alter a GI bleed if one occurs. Does anyone take brilliante and aspirin with no issues? Just curious...

[socrates_8 in reply to Janus2mutant]

Interesting all the same...

As it made a huge difference in my case...

Best wishes

Steve

PS. I have had x 2 TIAs but no cardio' or heart problems to date etc... (?)

[Janus2mutant in reply to socrates_8]

hopefully you found what works and you do not get another TIA or cardiac issues. I am a triathlete and never had cardio or heart issues. Within the last few years I feel my body has been attacking itself inside from my constant superficial venous thrombosis occurring in my legs to heavy fatigue and then the 3 weeks of heart burn that turned out to be a heart attack (LAD was 99% blocked). I thought I was just not getting enough rest or had a virus I couldn’t shake. I went to the doctor had an ekg, was sent to a cardiologist then was cleared and sent home. Three days later I went into cardiac arrest. This being said, I research everything because the doctors can only help so much..

[socrates_8 in reply to Janus2mutant]

Wow... !!!

You are making me think here...

I am or rather have become an endurance athlete myself cycling very long distances. Until very recently averaging circa 300-400kms pw...

However, I do suffer from bad anaemia, even though my bloods would really only suggest that it was a milder case, yet more lately than ever... I just feel so oxygen deprived and unable to find the required energy I need to complete even my usual smaller rides of 50-60kms...?

My BP is always quite good these days 118/68 however, (60yo), I never have much energy in reserve... It is always a real struggle for me to complete my rides and now I am cramping so much earlier than I used to... ???

Maybe I need to have some other tests run too?

My kidneys & liver are showing some signs of stress...

I am Post ET / MF Intermediate 1 w/ ASXL1+ (CALR+ Type2) w/ (acquired?) VWS Type 2...

I will let you know what I uncover after my Friday next GP appointment etc...

What is your name?

Best wishes

Steve

(Sydney)

[Janus2mutant in reply to socrates_8]

Hi Steve my name is Lee. I too have been suffering with the anemia making me lightheaded and weak. I also have a 2 year old and 5 year old who I play with as much as possible, but it’s tough. I workout everyday I try and cycle but I keep it easy. I goal myself to 7 miles and keep the speed around 12-14mph. Some days I can’t finish but I know I got out and did it so it makes me feel complete. I also got the Apple Watch to make and stick with good goals. This helps my mind keep on track to complete the rings! Sometimes on really bad days I have to smoke marijuana which believe it or not gives me enough energy (or numbness) to complete my workout and sometimes to add more in. Probably because it is taking away a lot of the side effects I have been ignoring or fighting to have a QOL.

[light]

Thank you all for your kind replays and for sharing with me your experiences.

God bless you all

[MCurlygirl]

I cannot take aspirin of ANY kind because it causes almost immediate stomach pain. I had an aspirin-induced ulcer many years ago..... My hemo has me on Cilastozl instead..... I have to take it with milk of it also makes my tum hurt.

[light]

So sorry to hear that. Can they change it to something else?

Wishing you well

[Janus2mutant]

Hi Light,

I too had a heart attack in August which I ended up with 1 stent (so far). I think I have been having a similar issue with Clopidogrel and my low dose aspirin. I was diagnosed after the heart attack with PV but my bone marrow biopsy is showing both ET and PV. I was intolerant to Hydroxuria from the beginning I felt everyday I was being poisoned until I couldn’t take it anymore and demanded a new drug or to go the natural route. The hematologists I guess felt bad for me and prescribed Jakafi. I have been feeling great minus the side effects I believe I am having from the plavix (clopidogrel) and aspirin. No pain or vomiting but..I’ll stop here. Problem is I was told Jakafi is toxic on the stomach as well. My cardiologist told me he is having me stop plavix in August, which sounds wonderful but then I have to ask will it be ok for my stent? Problem is I don’t think the doctors really know outside what the pharma companies are teaching them. We have such a complex disorder which makes our diagnosis and treatment so difficult. Our disorders have to be from over accumulation of stress. Two years before my heart attack I lost my father to Alzheimer’s, since then I haven’t been the same and my ability to cope with stress had diminished. Stress, I believe, is linked to most disorders especially ours.