I take Sirolimus at a lower dose (tablet, 1 mg/week) and have noticed the metallic taste as well. It’s not very strong and goes away in a day or so after taking the tablet so might be dose dependent. I know someone else taking it and they don’t experience this so it does depend on the individual. Interestingly, I also experienced it taking Paxlovid for covid recently but the taste was much stronger with that medication.
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Chad, welcome to the site. Thanks for posting. For most of the long-time rapamycin users who have never seen anything like this, the “metalic taste” sounds completely bizarre. Let us know if you see it changing as you modify or increase your doses.
How long have you been taking rapamycin and how’s it going?
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I’ve only been taking it for two weeks so far so too early to say. At the dose I’m currently taking it’s mild so I probably wouldn’t have noticed it if I hadn’t experienced the same effect but much stronger with the Paxlovid.
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Quick update… after the third dose I didn’t notice the metallic taste. Maybe it only happens along with certain foods or fades over time.
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Glad to have found this thread. Day 3 after a higher dose of Rapa, and this evening seemingly out of nowhere I tasted - what I thought was - a decent amount of blood in my mouth. I quickly searched a mirror and proper light, but I noticed nothing out of the ordinary in my mouth. I never experienced this before.
I wonder what/why some members may experience this? I also take 10mg of Empagliflozin every day.
Could DKA be a potential risk when taking higher doses of Rapa that we know of?
Everolimus, an mTOR inhibitor, has received approval for used in hormone receptor positive advanced breast cancer treated with nonsteroidal aromatase inhibitors by FDA. This report presents a case of a 49-year-old woman being treated with everolimus and aromasin for advanced breast cancer who developed diabetic ketoacidosis and acute pancreatitis. The incidence and management of diabetic ketoacidosis and acute pancreatitis are discussed. Careful monitoring of blood glucose and lipid levels and dose adjustments of everolimus together with glucose-lowering and lipid-lowering therapy can allow patients to continue this medication. Increasing indications for use of mTOR inhibitors, the common and serious side effects must be cognized by prescribing clinicians
https://www.graphyonline.com/archives/archivedownload.php?pid=IJCCS-126
Although abnormal blood glucose levels are observed in more than 50% of patients treated with Everolimus, hyperglycemia exceeding 500 mg/dL is not common and there have been no reports of Everolimus-induced acute hyperglycemic crisis conditions. Here, a novel case of Everolimus-associated diabetic ketoacidosis (DKA) in a patient with RCC is reported. (Korean J Med 2014;86:761-765)
I’m confused… you mention the above “symptom” but then you veer off to talk about DKA (which seems completely unrelated)… I’ve read a lot of rapamycin and rapalog studies and these two case reports are the first reports I’ve seen of DKA associated with them.
Is there some sort of connection that I’m missing between the metallic taste, the blood taste in your mouth and DKA?
DKA Signs and Symptoms
DKA usually develops slowly. Early symptoms include:
- Being very thirsty.
- Urinating a lot more than usual.
If untreated, more severe symptoms can appear quickly, such as:
- Fast, deep breathing.
- Dry skin and mouth.
- Flushed face.
- Fruity-smelling breath.
- Headache.
- Muscle stiffness or aches.
- Being very tired.
- Nausea and vomiting.
- Stomach pain.
Sometimes DKA is the first sign of diabetes in people who haven’t yet been diagnosed.
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A metallic (or bloodlike) taste in the mouth is listed as symptom of DKA.
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Ah - it seems it (metallic taste) has many different causes - and many medications cause it:
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Thanks you are definitely right and I may be overly worried.
Since DKA can be a (rare but very serious) side-effect of SGLT2-inhibitors, admittedly it has been on my mind. Perhaps also given my lowish weight. Some research points out longterm Rapamycin treatment increases total ketones. Add the fact I take rather high doses - which may affect BG levels which I should really start testing more consistently again, and I’m wondering if the sum of factor may create a situation with an increased risk for DKA/KA - but I may be wrong?
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I am still taking 10mg of Empagliglozin/Jardience twice every day. I started taking it several months before I started taking acarbose.
It seemed to have no detectable effect on my fasting glucose and minimal effect on my peak blood glucose levels after eating.
On the other hand, acarbose has a big effect on my peak glucose levels.
I am not knocking Empagliglozin/Jardience, but it seems to do nothing for me.
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Thanks, DS. I followed the threads about SGLT2-inhibtors, and read about your and other’s experience there. It is certainly good and important to know about this. I’d want to try out acarbose, but unfortunately I don’t have access to it where I live. I was able to get Empagliflozin. If I do travel I may try to get acarbose, but I prefer to have longterm access to it.
I’m also a little bit concerned about the bloating people describe. I’ve had some issues with bloating in the past, and since I’m thin it was pretty noticeable. Not sure if I want to get the ‘are you pregnant’-questions again.
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Hello everyone,
I’ve been taking 3mg/day caplets of Rapamune (Sirolimus) for the last 13 months.
I’ve had some acne but not much so it was ok.
However, I’ve been experiencing tasting problems since the last 2 months. I no longer taste salt and everything taste really weird. I think I taste some metal too, like you do, but I dont really know how metal is supposed to taste.
I was wondering if you have problems tasting salty meals too.
Is there a way to stop this side-effect?
Thanks!
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3mg a day!
Treatment for?
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You made me doubt but I double-checked and yes it’s 1mg caplets and I take 3 everything morning.
I have a « malformation veineuse » in french so I guess it’s something like « venous malformation » or « hemangioma ».
I didn’t know I was taking a lot compared to some of you.
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Thats a very high dose, typically used for organ transplant patients.
See our dosung write up here What is the Rapamycin Dose / Dosage for Anti-Aging or Longevity?
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Also i strongly recommend you learn as much as you can about rapamycin if you are going to continue to take such a high dose Rapamycin Frequently Asked Questions (FAQ)
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You’re right, my doctor told me it is typically used for organ transplant patient but studies showed it has effects on cancer tumors too so my health problem is similar to those cancers.
After 8 months, the malformation (tumor) went from 5cm to 4 cm approx.
My doctor is an emminent immunologist so I guess (Hope) he knows what he’s doing
Are you all taking Rapamycin as organ transplant patients?
Thanks for your answers
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Most members on this forum that take rapamycin off label, are taking it for possible health extension/life extension.
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OK - all good. I was just concerned that you were taking rapamycin at high dosing without any doctor supervision. Yes - there is good data to show rapamycin has positive effects on some tumors and cancers.
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