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.
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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.
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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
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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
Still looking for the one I first encountered.
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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.
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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.
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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.
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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
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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.
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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.
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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)."
Unless you are using the Cystatin C test, however, the eGFR is dominated by the creatinine figure. Hence I would not rely on it.
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!
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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.
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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.
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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.
The biggest variation in creatinine i have seen arises from delays between the sample being taken and the test performed.
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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.
Anyone else have any experience they can share?
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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’.
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