Sash, very sorry to hear of the difficulties you’ve been having and I hope you get well soon. While many people report doing blood tests every 3 to 6 months, i think your experience drives home the importance of doing regular blood testing and not just going on how you “feel”.
And, as @Agetron has mentioned, there does seem to be a significant minority of people that don’t respond well to rapamycin for whatever reason, and decide not to continue. In our poll it was in the 5% to 13% range of users, but its hard to drill down into the exact reason for people quitting rapamycin, was it due to some annoying but relatively minor side effect (like the canker sores, or small body rash), or something more significant like what you seem to be seeing; its hard to know, and I’m not sure we could tease that information out in a survey/poll because if people stop taking rapamycin they probably aren’t coming back to this website on a regular basis so we have a survivorship bias issue.
As you mentioned, we have to be very open eyed about taking rapamycin. We all want it to work for us the way its worked in mice. But we have to be careful, at an individual level, to be testing to see and make sure we aren’t in the small group of people for whom rapamycin doesn’t work well - and this is best done with regular blood testing.
Yes, my creatinine, urea and HbA1c were all elevated above the NHS normal range. I have another blood test on Monday following a 6 week wash out from rapamycin. I will report back when I get those results.
If my markers don’t improve after this vacation or, if they regress again next year on 5mg/wk, I will discontinue Rapamune. I have never taken any diabetes medications nor would I take any molecule that requires me to.
Yes, creatine levels vary so much I do not take the test seriously. I have taken 5 grams of creatine in my coffee daily for at least two decades and the results of the creatine tests varied wildly. Oddly it didn’t seem to have much effect on my eGFR which is always in the “Normal” range.
Bottom line: I don’t pay attention to the creatine tests. I am much more interested in the eGFR results.
As to eGFR if you drink a lot of water - as I did to make sure I was fully loaded drank all morning and just before for my blood draw the eGFR score was below average at 50. Indicating kidney problems
If you don’t drink any water - dehydrate at the time of draw - it is higher 70 or better. Excellent kidneys reading – But you risk the phlebotomist not finding the vein.
So much for accuracy. I have done both to test it. True
One of the difficulties with this is that creatine and creatinine are different molecules with very similar names and one is produced from the other. Normally eGFR is calculated from someone’s age potentially their ethnicity and the creatinine level.
I don’t have my creatine levels tested, but I do have my creatinine levels tested.
As far as drinking (mainly water) goes I would intend to drink particularly the night before, but to stop drinking perhaps 1-2 hours before the test so that I had maximised the excretion of creatinine by the time of the draw.
There is an interesting question as to what effect the vasodilation of acetate as a consequence of the metabolism of ethanol has on blood tests. I guess that it reduces the concentration of biomarkers. When I had a hot night (over 30C in the UK is hot) and vasopressin kicked in I saw an increase in the concentration of many biomarkers.
You are correct creatine and creatinine are often confused. My point is that my taking creatine may have increased the creatinine levels in my blood tests. That is why I do not pay too much attention to the creatinine blood test.
"Creatine can slightly raise levels of creatinine in your blood. Creatinine is commonly measured to diagnose kidney or liver conditions (14Trusted Source).
However, the fact that creatine raises creatinine levels does not mean that it is harming your liver or kidneys (15Trusted Source)."
Sash, imo it’s a good decision to give it a break. Once I also took a 4 mo break from it (it was a big risk for me taking into consideration my transplanted kidney). However, nothing bad happened. All my blood markers returned to normal. Then I restarted Rapa with a much smaller dose and 12 day break between the doses and it works pretty well. I believe that dose has to be small if taken long term. Good luck to you and be well!
I haven’t stopped (yet). I take my dose every Friday and so I think I’ll take a break from next Friday.
Voltaren (diclofenac) reduced the pain but it’s very unusual for me.
Have you looked into candida as being a cause for your joint issues? Immunosuppressants (rapamycin) can create an environment for candida to thrive and possibly cause candida arthritis.
I have been getting “heat rash” tinea versicolor since around the time I went on rapa break. And recently feel my knuckles are stiff in the morning. I have had tinea before but never the joint pain.
A few years ago I did a 3 day cleanse/fast which cured my tinea. I’m going to do that again Jan 1 before starting back on rapamycin.
Sash, you might want to have Cystatin C checked as an alternative to creatinine based eGFR. Like others here, my creatinine based eGFR has been highly variable over the last decade although always in range. And it was that way before I ever started rapamycin. As much as 30 points up and down and back up. However, Cystatin C remains more consistent with little variation.
Creatinine based eGFR becomes more reliable the lower the value is. Once it falls below 60 into the CKD range the actual value becomes more reliable.
There’s also a urine test you can have done called uACR (albumin/creatinine ratio, urine).
In most states you can order these tests yourself online, too.
I found out that the creatine I’ve been taking is causing my joint pain. I started getting muscle cramps too.
I read that creatine hcl doesn’t cause these issues. I have been taking creatine monohydrate.
Sorry, I took a break of a few weeks given the stress I experienced over the autoimmune arthritis that after years of absence seemed to have come back in full force again. I stopped taking Rapa 5 (or 6?) weeks ago. I can say that my joint issues luckily are much, much better again. I say this with a great relief, as I was very concerned given the damage I had sustained years ago when the autoimmune arthritis was still very active.
I will add pictures that show what the joint of my right middle finger would look like each time in the weeks after dosing Rapa. And what it looks like now - it is not yet where it is supposed to be, but much of the swelling resolved. I also included a picture of my left hand for comparison. Indeed I also experienced dermal issues the past period. (I was diagnosed with psoriatic arthritis years ago, albeit the incidence of dermal issues was very minimal at the time).
The quite bothersome pain in my wrists, feet, hip that returned the past months: everything largely resolved. I haven’t done new blood work yet, but I plan to do so within a week. As several components of my blood work had such rigorous changes compared to my blood work of the past years, that I want to see if my blood values ‘recovered’ again also.
I really wanted Rapa to work, and I still want it to work for me. But I’m highly hesitant to start again after this experience. I can’t risk further permanent joint/tissue damage - not in addition to the damage that I sustained years ago before I was able to get the autoimmune arthritis ‘under control’.
Thanks all, for the thoughtful and helpful responses.
This is an interesting suggestion, Patrick. Thanks. Admittedly I had never heard of ‘candida arthritis’. I can say however that I had experienced a fungal infection also while taking Rapa.
At the same time the symptoms I experienced the past months affected quite a lot of joints - and in the same ways as I experienced at the time my autoimmune arthritis was still very active years ago. That autoimmune arthritis at the time resulted in permanent damage to some nerves/tissues/joints. So, combined with the quite rigorous changes in my blood work Rapa seemed to bring up, I’m inclined to think Rapa for me seems to provoke these autoimmune symptoms again.
Hi Sash,
I’m currently reading An Elegant Defence by Matt Richtel. Its the story of the discovery of immunology from the very beginnings up to the modern day and the explanation for autoimmunity is the fact that our immune systems are designed to be constantly on the go, so in this “sanitised” world we live in, they over react to the smallest thing.
Now layer in Rapamycin, which damps down the immune system and for transplant patients keeps it damped down, however, in our case, I think of it as like a form of exercise where we hit it hard and then it comes back stronger.
Now I wonder in your case if you have an incredibly strong immune system, that when taking Rapa you are training to become too strong again. Maybe over the course of the next 3, 6, 9 or how ever many years in the future, your immune system’s ageing will have weakened it to the extent that a bit of “training exercise” by way of re-starting Rapa will take it back up to 100% and not beyond that causes your autoimmune response.
I suggest you read An Elegant Defence as it will give you a good understanding of what is going on with your immune system and given it is partially written through the lens of 4 real life stories, it is in fact a super read and somewhat of a “page-turner”! Maybe you will even find some answers to your unique situation.
There is some evidence that Nigella is helpful in recovery from Covid. I believe medcram recommends it. This paper discusses the eight clinical trials to date.
