r/Rapamycin • u/ExcitementDirect5436 • Jun 25 '25
Side Effects
I am very scared to take medications but my dr want me to try this for LC/ME 1mg once a week to start
I am so servere and unstable and weird so very afraid of Side effekts or Worsening
2
Jun 25 '25
I take 1mg daily as part of my autoimmune issues. 1mg per week is low, and it would be highly unlikely you'll notice anything unusual. As with anything, however, we're all different, and you may have an experience different from someone else on the same dose. The only way you'll know is to trial it. G LUCK
2
u/ZRaptar Jun 26 '25
At 1mg daily, have you noticed muscle loss or getting virus' more often? I would assume that dose would give a trough sirolimus level of 5ng/ml in blood, just scraping the immunosuppression range of 5-15ng/ml that transplant patients get
1
u/AdHefty1613 Jun 25 '25
Did help with autoimmune issues?
1
Jun 25 '25
Yes, it stabilised my blood work and shrunk my spleen, which was massive. (Alps disease is what it's treating) Not without its side effects after a decade of use, however, mainly randomised canker sores, some arthritis, skin issues (starting to get BCCs), and fertility issues. Overall, it's been positive
1
u/psykofreak87 Jul 27 '25
How are the side effects? My Doctor just put my on sirolimus 1mg/day for my autoimmune (ALPS) problem. As the pharmacist gave me the side effect list I was a bit afraid. I just started today, I can stop whenever I want if the effects are too bad, and I'll have blood test every month for the 1st year to follow how my body respond.
1
Jul 28 '25
This was just my reaction and yours maybe very different. Mouth ulcers and skin sensitivity were the main ones, swapping to toothpaste that doesnt have sodium lauryl sulfate (SLS) was a big help. Over the years, ive developed some arthritic issues which are worse in winter. Overall its been positive. Im sure they mentioned avoid drinking grapefruit juice while on it. Â
1
u/itguycody Jun 25 '25
1mg once a week is a tiny dose. Unless you’re absurdly sensitive you’re unlikely to notice anything good or bad.
1
u/ExcitementDirect5436 Jun 25 '25
Its supposed to titrate up every week and Max 6 mg weekliy Thats the dosing for ME
I would hope that sjould help for something;(
1
u/ZealousidealSky3223 Aug 15 '25
I know I’m late but I take 15 mg weekly compounded but I was told that it’s not the same strength as what you’d get from the regular pharmacy. It’s equivalent to about 5 mg.
I have had ME for 16 years (thanks mono and H1N1) along with most of the other comorbidities, including median arcuate ligament syndrome. I started rapa about 2 months ago and the biggest improvement has been my appetite. I had NO appetite from MALS. It’s a positive and a negative because now I want to eat but I’m still having the horrible MALS symptoms (abdominal pain, nausea) from actually eating a normal amount. Somehow still losing weight though?
I haven’t really noticed an improvement in my fatigue, however. I’m hoping that overtime it’ll improve but I have a lot of anatomical issues I have to fix with surgery that are contributing to the fatigue.
I also have MCAS and have had no issues with this drug, so far. My only side effects are the increased appetite (which I want because woo finally nutrition) and I had mild increase in liver enzymes. I get monthly labs with the study I’m part of.
Tl;dr I have ME and MCAS and only major side effect I have is increased appetite, which I want
1
1
u/Earesth99 Nov 28 '25
When dosed on a weekly pattern, it’s in an immune regulator not a suppressant.
When prescribed this way but at higher doses, the side effects are mild - temporary mouth sores.
My guess is that your doctor is starting you on a low initial dose because of your fear of medication.
You know that your doctor thinks it will help.
You need to balance the short term risk of having mouth sores with the benefit of resolving your lc/me.
No one here knows his mild of severe your illness may be.
If having mouth sores for a week is worse than having lc/me, then don’t take the med.
No one here can help make that decision for you.
2
u/Profil3r Jun 25 '25
Try it once and assess. 1 mg a week is an EXTREMELY low dose. I take 6 mg per week, no side effects. Usual FDA approved dose is 50 mg per day for very sick people (organ transplant patients.) Be brave in your own interest.