Having recently been diagnosed with low risk ET (low risk of clotting, JAK2/CALR neg, platelet count around 740), my hematologist prescribed 1 x 75mg Aspirin per day with quarterly blood tests.
I am notoriously bad with medication and will generally always experience the worst of any listed side effects PLUS some additional ones for good measure. I am on the lowest dose of Indapamide for my BP and this is about the only medication I can actually tolerate. So I started doing my research on alternatives to Aspirin and found the following:
In addition to a Paleo diet / a little dark chocolate / Rosemary,Thyme,Tarragon,Garlic, Tumeric / Pound of Salmon per week / Exercise and Stress Management - they recommend 100mg daily of a supplement called Pycnogenol (Pine Bark extract)
It is stated that Pycnogenol (who names this stuff!) is as effective as aspirin and reduces platelet aggregation without the risk of bleeding. In addition to this it has many other uses which would benefit me with all my weird and strange ailments and some garden variety ones as well. Here's a link from examine.com
Welcome to this forum. I was diagnosed with ET JAK+ last year, following a minor stroke, which luckily had only a fleeting effect. Because I was treated in the stroke clinic, they put me on clopidogrel as a platelet disaggregator. Like you I have a very poor track record as regards drug side effects and I try to avoid taking any pharmacological products. Up to now I have avoided taking hydroxycarbamide for this reason, although this is against the advice of my haematologist and I may have to reconsider this if my platelets increase (current range of 600- 748). However I have not had any problems with clopidogrel, so you might like to look at that. As regards pycnogenol, I have used it on long haul flights to reduce swollen ankles and thrombosis risk and it has seemed to help for me. I have a friend with whom I do long distance walking (15+ miles a day), she has some form of chronic venous insufficiency and develops red rashes on her legs when walking long distances and she has found that taking pycnogenol has vastly improved this condition. Hope this helps.
Hi Kimhock, intrigued by your comments, as I too (with ET and count 727 few weeks ago) also react incredibly badly to every single drug, even getting severe headaches with aspirin and was really trying to find an alternative. So will try Pycnogenol (what a name - much prefer 'Pine Bark Extract'!). Do let us know how you get on. And am also very impressed with your other mentions of dark chocolate, tumeric, etc. Many thanks and feel most grateful for your helpful posting. Tinkerbell13
Hmm interesting to say the least. Looking forward to hearing your experience on this.
HI Kimhock I was really interested in your research. I like Tinkerbell keen to take alternative's. I am on aspirin 100mg daily. The long term effects don't look great. I already have hearing loss and tinnitus. I have never been keen to start aspirin for that reason.
I have ET diagnosed in 2015!! Caused by stress I reckon? My opinion of course? I will do my own research into these products.
tessa46 its good to hear your feedback and experience with pycnogenol and gives me that extra bit of confidence to take it
My bottle has just arrived now and I am about to take the first one. I am making a note of BP and weight as well as a list of all my current symptoms and will do a trial for the next few months to see what/if any changes there are. I will post weekly reports here as well for those of you that are interested.
Hi Kim, thank you for posting, it was were interesting reading. At the moment I'm trying to slowly change my diet. I look forward to your updates, and wish you luck 😀
I have now been taking Pycnogenol since the 6th, I did not take a dose yesterday as I had a 13 hour round trip to London for an interview. So in total I have taken 5 tablets (500mg). I am keeping a record of everything to see what/if there are any overall changes. I will not know their effect on my platelets until my next blood test which is in April - 3 months is a fair amount of time to assess if there is any benefit at all. I am not taking anything other than Indapamide (BP) and the Pycnogenol. You cannot take Pycnogenol if you are already on a blood thinner as you stand the risk of bleeding incidents, I have therefore not taken any Aspirin at all. Here are my findings so far (early days, but due to the few improvements I have already noticed, thought it was worth the report back):
*Disclaimer - I am testing this theory as my situation is one where I can do so without too much risk, everyone is different and I wouldn't advise anyone to take this course of action without first consulting with your doctor*
Pycnogenol Assessment
6 Jan 2016
Symptoms prior to taking Pycnogenol:
1. Controlled BP (Indapamide 1.25mg daily) - average 120/80, take BP reading prior to starting on these tabs - since 15 May 2014
2. Cervical Spondylosis - frequent pain and discomfort in neck / limited range of motion- since late 2014
3. Peri Menopausal - occasional hot flashes, irregular periods, mood changes and bloating around due date - last period 19/10/2016 - since August 2014
4. Tinnitus in both ears, more predominant in left ear - since July 2014
5. Essential Thrombocythemia - diagnosed 21 December 2016 (platelet issues since 2006)
6. Eye sight getting worse
7. Stuffy nose most days
8. Pressure behind eyes
9. Regular headaches / pressure in head
10. Occasional twitchy nerve right side cheek bone
11. Tingling in extremities
12. Slow to weight loss
13. Fatigue
14. Sleeping problems - get around 4 - 5 hours a night
15. Restrictive feeling in throat
16. Skin in bad shape / gets red very quickly
17. Left arm swells just above elbow
18. Chest tightness
19. Slight burning sensation lower left abdomen
20. Osteoarthritis left knee, limited range of motion, some pain and swelling
21. Slight swelling lower left leg
22. Severe swelling under knee and lower right leg / some pain on occasion
23. Middle toe on right foot - no sensation on back of toe / nerve bundle on toe gets sore when walking
24. Occasional anxiety - reduced from severe anxiety experienced between 2014 - 2016
25. Overall lethargy
26. Hunger
COMMENTS:
6/1
Took first tablet at around 2:30pm
100mg
By 6pm noticed that my tinnitus was almost non existent and some feeling has returned to the 'dead' toe on my right foot. Have had no feeling at all in this toe since December 2015. Something to do with increased blood flow perhaps?
12/1
Have taken 5 tabs this far
- missed 11th due to trip to London
Test a Theory - Indapamide (BP meds) - one day on, one day off as opposed to daily
Do daily BP readings with home monitor for 4 days and review results
*Skin looks healthier overall / face hardly red at all
*Toes and feet look pinker
*Twitch in cheek bone has gone
*Travel activates anxiety - did a 13 hour round trip to London yesterday for an interview, barely any anxiety at all
and I had to catch 3 different trains to get there - one at Waterloo where I had never been before lol!!
*Overall feeling better, more focus, less stressed
*Haven't had a headache in days
*Slept 8 straight hours last night (could be due to trip to London yesterday)
*Appears tingling extremities less than usual
I will definitely carry on and report back weekly.
My desired outcomes are:
1. Able to wean off Indapamide
2. Pycnogenol will have the same effects on my platelets as Aspirin without the associated side effects
3. A reduction in many of my symptoms would be an added bonus.
Please note also that in conjunction with this test I have completely changed my diet, exercising more regularly (walking and exercise bike due to restrictions - neck and knee) and also drinking 1.5litres of water per day.
Started taking Pycnogenol a week ago. Due to an ulcer I had to look for an alternative for aspirin, I was having severe pain just under my rib cage and one occasion I was rushed to hospital by ambulance thinking I was taking another heart attack. Aspirin was the only medication I was taking regularly, I refused statins at the very start after stent inserted, beta blockers all that I took was the blood thiner treatment. I give up the Areplex after one year and now I have given up the Aspirin therapy and taking Pycnogenol in it's place. So far so good and have not had any pains in my abdomen since. Skin looks healthier too and generally feeling better. I believe this stuff is amazing. examine.com/supplements/pyc...
marcus911 - I hope you are still enjoying the positive benefits of Pycnogenol
It's been a while since I've posted - getting my new business off the ground has absorbed a fair amount of my time!
I've taken the Pycnogenol for a little over a month now and continue to enjoy small improvements to my overall health. After how I was feeling, small improvements are certainly worth their weight in gold.
Blood pressure is now an almost constant 114/74.
Skin looks amazing - always a bonus when you are 47 lol!!
The swelling in my leg that nobody could explain has started reducing - I am ever hopeful that it will eventually disappear and I can go back to wearing my normal size jeans again.
Tinnitus rears its nasty self only when I'm anxious now - after 3 constant years I feel like I've almost got my life back.
Pain from the osteo in my knee is also greatly improved - I can now manage 7.5km walks on the Moors without too much difficulty - I was a little silly last time and climbed up and down a few hills, knee was swollen for a few days after that - so I shall not attempt it again.
I do still get quite tired at around 1pm and haven't managed to give up my afternoon naps yet.
As yet I still do not know if it has had any effects on my platelet count (the entire reason for starting them in the first place) my next haem appointment is only in April - so fingers crossed there.
Overall though I do feel healthier and more positive about life, glad I found them and hope they continue to work their magic.
Hi Kimhock. Glad to hear that you are finding benefits from the Pycnogenol. Before I looked into the Pycnogenol I was having serious pains in my back and chest and had to get an ambulance one day as I thought that I was taking another heart attack. My pulse and BP was raised more than normal, dry mouth and felt sick. I got to the A&E and was checked over. All was good and it was not my heart. As I suspected the doctor said that it may be an ulcer brought on by taking aspirin. I have been on the Pycnogenol now for around 6 weeks and have had no pains like that since.. I think the ulcer has either reduced or gone. I do feel better and I hope that the Pycnogenol keeps doing its magic. Keep us informed as to your platelet results please. Many thanks.
Just come across this post as I am too interested in coming off aspirin which I am taking for secondary prevention for 2 stents in my rca. Interested to hear you came off aspirin. Did you have to an ween yourself of it? How did you test the efficacy of pyco and ensure the platelet aggregation is within the expected levels for secondary prevention ? What dosage are you taking? What brand? How you don't mind the questions but really excited to hear that pyco maybe a viable option
Ravi1000, in addition to aspirin alternatives you should familiarize yourself with proteolytic enzymes to control stent blockage from fibrin or other organic substances. Also vitamin C is important to strengthen skin and blood vessels to prevent bleeding. Another aspirin alternative to research is magnesium, it prevents platelets from sticking together. Always discuss supplements with your health professional before use.
Please consider liposomal curcumin as it increases absorption and avoids blocking iron and other minerals in the gut that non-liposomal curcumin and turmeric are known to do. Also search on "krispin magnesium" for suggested daily magnesium and "nothing boring about boron" for it's benefits.
I've been on the pycnogenol now since January this year, I take 1 x 100mg tablet per day after breakfast.
At last check with my hematologist (June) my platelets were down from 880 000 to 756 000 - so my visits to the hospital are now four months apart instead of three. I have no idea whether the pycnogenol has helped with the stickiness of my platelets, the hematologist says only a BMB could tell - I'm certainly not volunteering for one at this stage lol!!
I totally went off my blood pressure meds in April and my bp averages out now at 118/73.
I have added a multivitamin to my regime - centrum women 50+ as they are designed with us peri menopausal ladies in mind.
Tinnitus remains a non issue - flares up only if I get stressed but is nothing like it was.
Swellings have all gone - I suspect the bp meds played a role in causing the swelling in the first place
My fatigue only plagues me occasionally - I have more energy and memory recall now and have actually started a course of study with the AAT.
Skin continues to look amazing and I have also totally cut sugar out of my diet.
All in all, I am feeling much better than I did a year ago and worlds different to what I felt three years ago.
I look at it from the perspective that I have a good 13 years left (hopefully) before they put me on hydroxy (apparently they will do that when I get to 60), so I intend to get to 60 in the best possible shape I can.
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