Years ago after a period of major stress, I was diagnosed with autoimmune arthritis. (And shortly thereafter with a second disease). I basically became very strict with my (already healthy) diet, exercise, supplements, etc. Probably up to extremes, trying to target inflammatory pathways with a rigorous lifestyle. And ultimately with good effects it seemed, as symptoms abated. Up to the extent that I functioned normally and didn’t experience any symptoms anymore. Up to the extent also that rheumatologists didn’t see need to treat me anymore. For 3 years.
In the weeks after I started taking Rapamycin, one finger joint started swelling up. In fact I posted pictures in another forum where it was suggested the Rapamycin did in fact seem to bring up arthritic symptoms for me. I guess I so badly wanted the Rapamycin to improve my overall health further (and hopefully lifespan) that I did not want to contemplate that suggestion, and did not take this suggestion serious enough. But now, 9 months in, symptoms have become increasingly worse - and they seem to worsen in the period after dosing Rapamycin. Up to the point that the past period joints are hurting quite badly and I’m worried about additional damage. I’ve just had blood work done to see if anything changed in my hs-CRP levels among others (that I had been able to keep very low the past years). As well as to check my Hba1c-levels, lipid values etc.
But I did read the research about Rapa and osteoarthritis a while ago already (I posted the study below). And I’m starting to wonder whether I should take the decision I have not wanted to take - to stop taking Rapamycin. I am aware there are also studies that suggest Rapamycin may help with autoimmune diseases. But for me I feel I may have to accept that the opposite seems to be true and that I may be causing myself harm.
I’m wondering if anyone recognises these concerns I express at all. If so, did symptoms abate again when you stopped taking Rapamycin and how long did it take? I’m worried, since it took me quite a while to push back the autoimmune arthritis years ago, with irreversible damage taking place meanwhile. I’m not sure if I could accomplish the same again, and it could take months before I can see a rheumatologist - and then possibly months to years before medication may have any effects.
I am aware this study I posted below focused on osteoarthritis rather than autoimmune arthritis. I’m also aware that there are also studies suggesting Rapamycin may have positive effects on some autoimmune diseases - rheumatoid arthritis being amongst it. But clearly I’m not experiencing that. So has anyone with arthritis been using Rapamycin, and what was your experience?
Well, first results are coming in of my blood test. Hba1c-levels up quite a bit compared to pre-Rapa. Albeit I exercise almost every day for an hour. I guess the Empagliflozin I take every day may not be doing a lot.
Leucocytes at 4 x 10 9/L, clearly lower than they were pre-Rapa. And this blood test was taken two weeks after my last dose of Rapa.
CRP quite good, but ESR-levels are raised. LDL still as low as it used to be, the same for tryglicerides, but my high HDL levels decreased quite a bit. Liver values less optimal than they were pre-Rapa. Not sure what to make out of all this.
Creatinine also significantly higher post-Rapa - how much do creatinine levels generally fluctuate? My creatinine levels increased with 20% compared to my pre-Rapa blood test. Urea levels increased considerably. My kidney function seems affected quite a bit.
The trend seems the opposite of what I had hoped for, basically. My creatinine and urea levels were very low prior to taking Rapa.
Interesting. I was diagnosed with severe arthritis in one of my hips so this is something to keep tabs on. I’ve felt leg pains for almost two years on and off assuming it was soft tissue damages only to finally go to the doctor and see my left hip bone on bone. That being said, it may have been a placebo effect, but I’ve felt less pain since being on rapa over the last 6 months.
I’m so sorry to hear that. That must have been a very stressful event. Did you get hip surgery? Can I ask how the damage to the hip cartilage was diagnosed: through an MRI? My right hip is also one of the areas that used to bother me years ago - and again as of recently. That is besides other areas that already sustained damage at the time, but I never had an MRI of the hip. Did you get treatment for the arthritis, and do you happen to suffer from a variant of spondyloarthritis?
Hmmm… my arthritis in my thumb joints gone and lower back pain also gone - despite heavy workouts using grip and pressure on back and legs every other day (my workout protocol). I am fairly confident that rapamycin has reduce my joint issues… finger joints very reduced from before rapa dosing. Even almost got rid of my varicose veins. Sorry to hear your are not getting the same benefits - but we are all different phenotypes. We age differently and rapamycin addresses each person’s aging - somewhat unique to them.
I am sorry to hear that you are not receiving more benefits from rapamycin.
Unfortunately, we have no way of really telling whether or not rapamycin is helping or exacerbating your condition. It is always possible that you would presently be worse off without the rapamycin. Perhaps taking time off of taking rapamycin will tell.
Personally, I am fortunate to be virtually pain-free from age-related arthritis. Rapamycin has definitely helped. The only arthritic pain I have is in my hands immediately after doing exercises that require strong grip strength.
About half way down Hydration. He talks about how being dehydrated affects your blood markers.
My son in law got a high creatinine and was all worried about it and I sent him this article, which I remembered reading and it turns out he thought coffee and all that was hydration, which it is the opposite. Anyway after drinking a lot of water he got rechecked and all was just fine.
My daughter is vegan and I always worry about it. I know, I know, opinions vary on this. “The Vegetarian Myth” was a fantastic book. I disagreed with the author about many important points throughout, still loved it. She’s a man hater who believes conventional farming is destroying the earth. I have 5 kids and use chemicals like she uses vegetables. Still loved the book, and kinda like her.
The Drive had a podcast with Don Layman about protein needs. Great one. Your liver enzymes are turning over all the time. You need a certain mix of amino acids. You may understand this way better than me, but getting them all from veg may be more challenging than you think.
My osteoarthritis which was pretty bad, went away with Rapa.
Thanks, I appreciate your input. And I’m glad to hear you are seeing good results. The same goes for Agetron: glad you are doing well on Rapa, and your pictures also show.
I drink a lot each day - not just coffee. My creatinine, eGFR- urea and BUN-levels used to be great. Prior to Rapa they were the same levels as they had been when I was in my teens. I have years worth of blood values. It is only after starting Rapa that they changed so drastically - and clearly not in a good way.
The same for my liver values; they had been at the same levels they were when I was in my teens. They significantly changed since starting Rapa.
Raised ESR-levels, Hba1c-levels that went up considerably: my blood work is telling. And if we don’t rely on blood work: on what can we rely?
I’m also wondering how many members are regularly getting blood work done? Rapadmin concluded based on a forum poll that most people don’t see changes in their blood glucose levels; but how many members do regularly measure their blood glucose levels? For example I did not check the box in that poll that my glucose levels changed for the worse - but they certainly did.
Prior to starting Rapa I jokingly stated to someone on another forum that I was worried about potential changes in my blood work that at that time had looked fantastic - and here I am.
As to the arthritis, it was so bad the past week that my GP also wants me to consult with a rheumatologist. I have enough pictures for it to show, but frankly I’m so down at the moment, I’m not in the mood to upload pictures here. I had a sleepless night over these blood test results. My joints typically swell up more in the weeks after dosing. It is up to the extent that I’m experiencing pain when typing, among other things. So indeed, I’m concerned and hoping that things will return to the status quo prior to starting Rapa.
I know Lara mentioned Rapa had in the past affected her creatinine-levels - and that she had to be very precise with dosing. And Basil also saw her blood work change in unfavourable ways 3 months after starting Rapa, albeit based on what she posted: not up to the extent that I’m currently seeing. I had seen blood values of a man that had been on Rapa for years (posting on another forum) and his creatinine-levels and eGFR-levels didn’t look good for his age group - but he was much older than I am and admittedly I’m not sure what his levels looked like prior to starting Rapa.
Another member here stated his HRV-levels changed for the worse, and he continued taking Rapa, but would not have accepted such changes in HRV-levels from any other drug. I feel I may have been biased the past period since taking Rapa, hoping for positive results, without running proper blood tests. There seems to be a bit of a positive confirmation bias surrounding Rapa - which imho is not necessarily a good thing when taking such a serious drug.
For now I will drop the Rapa and get another round of blood work in a month to see what is happening.
I have just had an arthritic nodule appear (index finger; left hand) about 3 weeks ago. Quite painful.
I’ve been taking Sirolimus for about 10 months, but only 2mg/week.
I have taken 3mg per day of boron because of the evidence that it prevents arthritis. I am of the view that arthritis is one of those things partially if not completely caused by cells not producing the full range of proteins, but I would also look at boron.
I think the inhibition of mTOR probably has both negative and positive effects.
When it comes to creatinine levels the effects of exercise and I would also think water consumption need to be taken into account as well as any time for the sample to metabolise since being taken and tested.
I intend experimenting a bit with water and exercise to see if I can control the variation in creatinine, but it does seem to vary a lot.
For now I will drop the Rapa and get another round of blood work in a month to see what is happening.
Sounds like a plan. You know. it seems we all see or feel or read about such amazing benefits from rapamycin - it is easy to forget that 95% of users have no issues ( I am one of that number). But 5% can’t do rapamycin - due to phenotype, genetic make-up or whatever - it just doesn’t work in this 5% group. And, that really sucks.
So no surpise that a lot of us are trying to figure out how to keep a person, like you going, us knowing it will be better in the long run.
But… I had to pause and re-evaluate - just maybe not. That 5% is a real number of people and a lot of people that can’t do it. So, take care of you and hoping the best on your long-life journey.
Thanks so much for your helpful feedback. So you also saw significant changes in creatinine, urea, eGFR- values as well as liver function? Have you taken blood tests again after you stopped taking Rapa, to see if everything went back to baseline again after a while?
And concerning blood glucose and HbA1c-levels: did you combine Rapa with Metformin, a SGLT2-inhibitor or acarbose? Even with Empagliflozin and an hour of daily exercise, while taking Rapa my Hba1C-levels had still increased considerably.
I definitely agree with you. I will first see if things will go back to baseline before I’d dare to consider taking Rapa again. And if they do, I may, perhaps/potentially, somewhere in the future try a very small/conservative dose - and not without regular testing to see what my blood work is doing. Albeit at this point I’m hesitant to try this out again and first want my kidney values to recover.
I would also not dare to use Rapa anymore without adding both Metformin and Acarbose.
Thanks so much @Agetron. I can’t deny I also really want(ed) Rapa to work for me. Admittedly it was also the reason that (besides getting hormone levels tested) I kept postponing getting more extensive blood work done. With the symptoms I was experiencing, I had some concerns about my upcoming blood work, but at the same time I didn’t feel ready to give up on Rapa, because of the often mentioned benefits.
Thanks, I didn’t know about this. Is there any publication where I can read more about this?
Oh my - I have seen this several times - I am thinking it was Dr. Mikhail Blogsklonny. But, let me go back to my early articles. It always stood out in my mind - even when I went to my GP to discuss going on rapmycin - me hoping I was not in the 5% group once I started.
More soon. And, anyone else who has seen this - feel free to chime in!
Sorry to hear that. I had an arthritis nodule appear also (middle finger, right hand), as well as swelling in some joints. Is the nodule going away for you after you stop dosing, or not?
@Agetron Thanks Agetron, that tells me I should have paid better attention, because I missed out on that. You’d think Kaeberlein may have discussed this also and/or Dr. Green? Since they are dealing with quite a few people/patients taking Rapa.
Thank you so much, but please don’t spend too much time on it. Indeed: I’m sure someone will chime in about this research that you are referring to.
Thank you, John. I had taken a low dose boron supplement for years also - since I restricted my caloric intake mildly, it was one of several supplements I took to try to maintain bone density. (Besides vitamin K2, strontium etc). I still ended up with autoimmune arthritis though.
You are right. But the thing is, for years I had low creatinine levels - my values were at the lowest points of the typical range in each separate blood test. It was not different in March this year, at the time of my last blood test prior to starting Rapa. And back then I also exercised quite a bit.
Now all of a sudden my creatinine levels are 20% higher, besides significant changes in urea, eGFR-levels, Hba1C-levels, etc. Something changed drastically when I compare these blood test results, to all the blood test results of the past years. I never had such a change in my blood work before, and I don’t know of any other potential cause than the fact I started taking Rapamycin.
I accept Rapamycin could be the cause, but using a different lab with a postal service could have the same effect.
My creatinine figures have tended to improve (ie reduce) this year, but there is a lot of variation within a theme.
Here are this year’s figures to show what has happened: 77 73 80 82 82 94 89 118 110 85.64 122 77.7 92 74.37 68.53 86 74.34 66.41 87 85 90 76 78.92 73.13 67.83 72.58 61.82 64.36 80 73.43 83 93 76.38 88 77
(figures in micromoles per litre)
a) I have been building muscle (quite a bit) and increasing exercise (not so much)
b) The figures show a tendency to improve creatinine clearance, but a lot of variation when although I do vary my protocols it should not have that much impact on GFR. Some of the values are from the same sample eg: 73.43 83 93
Not the article I was looking for … but one of research and rapamycin on lungs confirming a 5% problem. Lung function response and side effects to rapamycin for lymphangioleiomyomatosis: a prospective national cohort study
Side effects of rapamycin
Due to follow-up schedules, intercurrent illness and travel issues to the LAM centre, 11 subjects had some missing values for rapamycin levels or side effects, and these subjects were excluded from the side effect profile analysis. Most individuals experienced side effects, which required a dose reduction in 25% of cases, although all continued with treatment. The most common side effects were apthous ulcers, nausea, acne, oedema and menstrual irregularities (table 2). Within the first month of therapy, apthous ulcers, nausea and diarrhoea were most common. These fell from 59%, 32% and 24% after 1 month to 15%, 7% and 2%, respectively, after 1 year of therapy (figure 2A). The incidence of acne, oedema and menstrual irregularities tended to increase over the first year of therapy from 7%, 5% and 0%, respectively, at 1 month to 17%, 12% and 7% of individuals, respectively, at 12 months. By the end of the observation period (mean treatment duration of 35.8 months), the prevalence of all side effects was 5% or less in all those treated. Pneumonitis was not observed at any time.
Link: https://thorax.bmj.com/content/73/4/369#block-system-main
