Looking to the collective wisdom of this site for some possible answers/advice or just comments. A few weeks ago I had DVT in my left calf with a blockage behind the knee and 2x further blockages in the calf veins. Having spoken to the DVT consultant it has been diagnosed as unprovoked DVT (I did not tell her I was on Rapamycin). I immediately stopped Rapamycin on the initial diagnosis but I am thinking of resuming as I cannot find any online links when Rapamycin is used for longevity purposes. Some background
I am 64 male active but about 4kg overweight . I ride a bike 5 days a week, do some gym weights and running 1 to 2 times a week and lots of walking.
I was taking 6mg Rapa with a shot of olive oil every Monday for approx 6 months
Rapa impact - I have noticed my teeth feel much cleaner for longer after brushing the only other impact was my blood pressure increased by a small amount. After monitoring my blood pressure and reading this site…thanks. I have started taking BP meds and it is now good. This is what I was taking when I had the DVT
Telmisarten - 80mg
Amlodipine - 2.5mg
Atorvastatin 20mg
Taladafil - 5mg
Aspirin - 75mg
Fish Oil -3000mg
(After the DVT I have 2 x 5mg Apixaban for 6 months)
Other possible reasons: I do have a family history of heart disease but the consultant decided against hereditary reason as no close relatives have had DVT below the age of 50.
On the day it happened I had more exercise than normal, so did a big run the day before and re-started mountain biking with for me a difficult long rocky downhill. I did not fall off but had a lot of pain and some bruising in the calf. Both a Dr and the consultant have dismissed this as a reason. Also had a blood test that was clear. So its a bit of a mystery. The consultant has advised 6 month on Apixaban and if DVT re-occurs after this then I will be on Apixaban for the rest of my life.
Has anyone had anything similar?
Apologies if this post is a bit long or lacks relevance, I really like this forum and enjoy reading all the practical help and open discussions
First off, sorry to hear about your DVT. I hope that you have the best path forward possible. I think it’s important to share that you take rapamycin - medical staff hear about people taking off-label medications all the time these days. LLM’s tell me that it’s possible that rapamycin contributed to this… though if you are dosing it how most people around here do, which is very conservative/low/infrequent, it’s also possible it had little (or nothing) to do with this.
There will be others with important details to share here. How do the rest of your health/cardiac metrics look?
That looks good to me. Other than checking your lipids as @relaxedmeatball suggests. Are you sure you are getting enough water daily, especially with your exercise program? Not getting enough water daily is a very common problem.
I seriously doubt rapamcyin is the cause.
DVT is serious so best wishes. (Correction from original post!)
In a similar vein (pun intended) I take nattokinase that has been looked at for the prevention of DVT on long flights, but with no regulatory approval or conculsive studies. Indeed the Memorial Sloan Kettering Cancer Center states that “Theoretically, nattokinase can cause an existing clot to dislodge, resulting in a stroke or embolus at a distant location. Patients with a history of deep vein thrombosis should avoid use of nattokinase.”
My high dose experimentation with natto tends to support this warning. I take 40K F.U. in enteric capsules at night when I use the bathroom and if I take aspirin around the same time my blood gets too thin, as judged by my nail cuticles that I’ve had a lifelong habit of picking at. Its not a perfect indicator, but I do get a sense of my blood thickness.
I take Natto when I fly, since flying is a DVT risk. I am heterozygous for Factor V Leiden and Factor II Prothombin which gives me, theoretically, a pretty high DVT risk (though my type O blood reduces that risk). I have never had a DVT. I am 78. I take French Maritime Pine bark extract and Vit E daily. (Have for at least 15 years.) I have taken Rapamycin 5 mg weekly for over a year now. Do you have some cites or insights about why Natto might be able to regress plaque build up?
The combo of French Maritime pine bark extract + Natto was studied around 20 years or so ago for prevention of DVTs on long flights. You can find the literature on this in google scholar. It was marketed as a pill at one point but I don’t think it is today. The lit will show dosages studied. I have not looked to see if this lit has been updated or revised though I should have.
“A combination of pycnogenol, an anticoagulant derived from French Maritime pine, and nattokinase, an enzyme from fermented soybeans, is proving effective for preventing deep vein thrombosis and leg edema during prolonged air travel.
Data from the ongoing LONFLIT-FLITE series of trials indicate that this proprietary combination of plant-based substances can reduce the incidence of deep and superficial thromboses as well as swelling of the lower extremities in high-risk individuals.”
Also Athletes may be at risk for deep vein thrombosis (DVT) due to factors like repetitive motions, dehydration, and immobilization from injuries. Other risks include long-distance travel, significant trauma, and underlying genetic clotting disorders. (AI response re athletes and DVT). The repetitive motion of cycling, plus your injury may well have played a role in your DVT. You might check your genetics for the two variants I mentioned as well—those and blood type are common risk factors.
Last tested lipids looked OK
Triglycerides 0.9 mmol/L
apoB 0.94g/L
Overall cholesterol is high 5.43mmol/l but its mainly (good) cholesterol HDL cholesterol ratio is 40.3%
My glucose response is not so good so have started Acarbose
Hba1c 38 mmol/mol
I do not have hsCRP in the blood results I got, will see if I can figure out if it has inflammation markers as the test does not separate them out. Overall the high levels I got in my blood test were
ApoA1 2.09
Cholestrol 5.43
Cortisol 564
LH 8.9
Mean cell volume 99.8fL
Red cell distribution 14.7%
SHBG 82nmol/L
Transferrin saturation 17.2%
The Dr response to all results was good and only worry about Cortisol & SHBG if feeling unwell
At the time I was making a concerted effort to drink more water and as I live in north of the UK hot days are pretty rare so do not think it was dehydration related
Personally I suspect the mechanical damage of the MTB downhill but the specialist only new of one similar but that was a continuous 24hr MTB challenge
I do not think it was due to Rapamycin so may just be a mystery, Apixoban seems to be a pretty good solution to the problem with the risk from a head concussion or major accident the downside.
Thanks Powe for your response, the specialist decided against hereditary factors as she said it would normally show up before the age of 40
Good to hear Natto works for you, I like to eat adventurous food but natto was an adventure too far for me
Over the years I have done many long haul flights and always took aspirin and made sure I do as many leg exercise’s as possible and never got a problem. That’s why this recent DVT is so strange as it seemed the most unlikely scenario. Possibly as you mention it could be due to resting my leg after the injury with elevated leg and ice pack
I just take Natto in pills. I discovered my genetic DVT risk when I had my whole genome decoded. The specialist I spoke with was unaccustomed to such incidental findings, though this was some years ago. Normally you are only tested for these specific variants if you have a strong DVT history in your family or if you are unexpectedly young to have a DVT. So I suspect that the logic of saying if it is genetic it will appear early is not as strong a relationship as a clinician would think—it is partly an artifact of who is tested and when. There are a number of articles about the circumstances that create risks for athletes—so I would not discard this explanation. Of course, it is all generally multivariate. Reading the lit did suggest that most people at modest risk can meaningfully reduce risk, at least until very old age. Eg. Avoid deep sea diving; take meds on long flights; maybe don’t live at high altitudes, if female don’t take certain meds, discuss risk with your doctors before surgery to get correct meds, etc.
MD here. Thanks for sharing this info. I highly doubt the rapa had anything to do with your unprovoked DVT.
Why are you taking aspirin 75mg?
I totally disagree regarding your docs comment on genetic risk factors. If unprovoked, then there should be a search for possible reasons/risk factors. I have seen many pts with DVT’s or worse in their adult and late adult life and when worked up, found to have genetic risk factors.
Risk factors put one at risk and then some event/condition turns that risk into an event.
Covid recently? Injury recently? Decreased activity? So many possible reasons. But knowing there may be risk factors, lets you intervent to prevent recurrences in the future.
I was taking Aspirin prior to the event (my family has a history of heart/stroke issues). I stopped taking it when I started on the Apixaban
I tend to agree with you on the genetic risk factors but suspect this is a money issue as I am in UK and diagnosis was under the NHS, it seems they have a very simple treatment for the likes of me.
Diagnosed DVT = 2 weeks 4 x 5mg Apixaban followed by 3 months (provoked) or 6 months (unprovoked) 2 x 5mg. After the 6 months if you have a re-occurrence then you have Apixaban for the rest of your life.
In the event of genetic risk factors in your pts what would you typically advise?
Worth looking into Nattokinase for circulation issue. Sinclair takes from what I have read. Solid research on effectiveness of natto for arteriosclerosis issues Worth a research effort.
Hi Stephen_King,
DIdn’t realize you were in the UK. My practice is entirely focused on patients with chronic complex illnesses such as Long Covid, ME/CFS and the underlying pathologies like POTS, MCAS, EDS. So if I find genetic risk factors for coagulopathy I will usually consider some preventive intervention, eg aspirin as a minimum plus counseling. If they have had an unprovoked clot would consider more aggressive treatment depending on the situation. Your family history would certainly play into that decision making. Good luck and stay well.
I have question. Did your doc start you at 20 mg statin. Does he k ow of 5 or 10 mg would get you a good cholesterol number? Many people get good numbers by taking statins just a couple times a week. The point being is that you are subjected to more possible statin aide affects at 20 mg when a lesser amount might work.
Steve, I was interested in your post primarily because we are taking very similar medications. I am older than you- 75- and have been taking 15 mg of compounded Rapamycin every week for over a year, soon to begin taking the straight equivalent of 3 mg Sirolymus because I have obtained those from India. Much, much more cost effective… But otherwise for decades I have taken daily doses of 12.5 mg of atenolol, 10 mg of atorvastatin, 2 mg of amlodipine, 3000 mg of fish oil and 81mg of aspirin. I exercise every weekday. I have noticed since I started on the Rapamycin I am much less likely to get tired and light headed after outdoor exertion…Phil
I take your point but the NHS does not look to reduce or change statins unless you have adverse effects.
It might be best for me to experiment myself, I pay for a private blood test once a year so I might try a reduction to 10mg this year so I can make a direct comparison year on year
I forgot to add that I also have 3g of Creatine daily and Ashwagandha before sleep.
Good to hear your positive experience of Rapamycin, the only clear benefit I have noticed is my teeth feel cleaner.
I have just started again on 6mg Sirolimus 1 x weekly with Olive oil. My thinking is that even if it has an adverse impact for me wrt DVT then I am on blood thinners. The bigger decision for me will be should I continue with Rapamycin after my 6 months of blood thinner has finished
Cheers
Steve
Steve, I am not on a blood thinner and have experienced no side effects to taking Rapamycin for over a year. I take care of our son and DIL’s house in SW Florida while they are at their cabin near Lake Superior in the summer. In the summer of '24- before I started taking Rapamycin weekly I would really get tired and even lightheaded on occasion, and had to alternate weeks between mowing the front and back yards. This summer I never got that feeling, even tho the average temps were exactly the same down her- brutal… So I believe the Rapamycin has had a very positive effect on my stamina…
so do not think it was dehydration related