My wife suffers from lupus which has caused near daily debilitating fatigue, as well as heart, skin, and kidney damage among other troubles. After rheumatologists produced no effective help I researched other options and came upon rapamycin.
After just one week of administration the results have been spectacular. It is startling to see her doing garden work for hours along with resuming all the activities of daily life. We are ecstatic. I was hopeful, but never in my wildest dreams did I dare hope for the full remission she experienced overnight.
Without much to go on, we decided on a loading dose for her of 2 mg of Biocon’s Rapacan (Thank you, Jagdish and everyone who recommended you here!) on Day One then a schedule of 1 mg three times a week. Our dosing regimen for her is nothing more than a shot in the dark, however.
Any experiences, anecdotes, or advice would be much appreciated!
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There are anecdotal reports of rapamycin having effect on autoimmune disorders. Like sarcoidosis. So why not on lupus?
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Hi, and welcome to the forums. Good to hear your wife is seeing some positive experiences with rapamycin for lupus.
I just searched through our archives (see the search feature at the top right corner of the page) for other’s experiences with Lupus, and it seems we’ve has many people come here with Lupus. See the full search results of our forums for “lupus” discussions here: Search results for 'lupus' - Rapamycin Longevity News
Here are some posts and threads:
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I’ve had subtle, but noticeable improvements with my fatigue. I have Crohn’s with chronic fatigue, and have a family history of people with Auto-immune diseases that trigger chronic fatigue (including Lupus).
The most obvious effect is when I go off rapa… the fatigue comes back with a vengeance.
I didn’t have any noticeable improvement at the lower doses, and didn’t feel the difference until I hit 10mg.
I used to use prednisone to stop the fatigue, but it has horrible side-effects, so I’ve done my best to stay clear of it as of the last few years.
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Did you manage to avoid needing other immunosuppressant medications with being on the higher dose rapamycin? Was it your experience that without the rapamycin, you’d have had flare-ups and required steroids or other immunomodulatory drugs?
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I’ve been doing high dose for nearly 3 years. During that time, I’ve had one Crohns flareup, and it was likely stress-induced (divorce). I did a course of corticosteroids, and stopped taking rapam for that month, then continued afterwards; no problems. Overall, my gut issues have been nearly non-existent since I started rapam. I just had my colonoscopy, and scored a ‘0’ on the Crohn’s scale, so basically a complete remission. I really haven’t had any gut pain, or any ‘accidents’. (Pretty amazing actually)
Before starting Rapam, I would get flare-ups 2-3 times a year. Since my Crohn’s isn’t severe, I’ve only been prescribed steroids, which usually do the job.
But when I’m measuring the day-to-day effectiveness of rapam… Im really referring to its effectiveness with fatigue… which is constant… and continues even when Im in remission.
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Very interesting, I like the dual use of medications like this - probably gaining longevity while simultaneously treating an autoimmune condition. I have a very high % of patients with Hashimotos … however most are not pushing their doses up … and it might be a reasonable additional reason to do so, as I suspect it will help … I’ll need to look at serial antibodies for those I convince to go with a bit higher dose.
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I would just add that I’m large (200 lb, 6’4") so that might affect the dosage.
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I usually monitor levels on those that I push the dose up on. So I have something objective to goal to.
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There’s one other thing I have to mention… and I may create a separate thread about this later. Since I started the 10mg (sometimes 12mg) weekly dose, I’ve found it becomes harder and harder to ‘take a break’. I’ve stopped using it 4 times… The first time wasn’t too bad… but it was early on… but the last 3 times… felt very similar to tapering off prednisone too quickly.
At around the 15th day I start to feel malaise, and it gets worse with each passing day, which is not a common occurrence. This actually just happened to me again, and I documented it well. With each passing day, the fatigue grows stronger, and I’m soon bed-bound… with a ‘phantom’ fever. The longest I’ve let this go was 10 days. And in all 3 situations… as soon as I re-start rapam… ‘poof’… everything goes away in about 6-12 hours. Again… eerily similar to prednisone tapering.
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Amazing stories.
FWIW LDN (low dose naltrexone) 5mg or so per night, is also a possible modulator of lesser auto-immune issues. I take both LDN/nightly and Rapa at the higher dose weekly. Not for auto immune but for lowering over all inflammation numbers and longer health-span.
The auto-immune folks might consider adding LDN. Probably though if you are here, you’ve heard of LDN a long time ago. I make my own from 50mg naltrexone pills from India. The water recipe is simple, googleable. 4 oz of water + 1 T more + 1 50mg naltrexone. Shake. Take 1T / night = 5mg. Precision not that important IMHO.
Best to all, curt
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Wow so happy for your wife…,and you! I’ve been on it for 3 months for Chronic Fatigue and so far no improvement.
Update: It has been 18 days since my wife has begun Rapamycin 1 mg every other day. I do not recognize this woman. On August 12 she was hurtling to her grave. Since August 13 she is bright, happy, and every day builds back more of the stamina that she had lost to lupus. She remains 100% symptom-free to this day. I thought I had seen it all, but this ghost of a woman asked to accompany me to the gym two days ago where she put in a hour of strength training and aerobics. Yes, she was plenty sore yesterday, but that is the normal aftermath for a healthy person exercising after years of decline. I’m a little choked up realizing that I just wrote a sentence about her using the words “normal” and “healthy”.
I have also been swayed by the findings of rapamycin researchers and have begun dosing, intending to get to a weekly dose of 6 mg. So far I cannot tell a difference, but after seeing what is happening in my wife, I have no doubts that good things are ahead for me, too.
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You have two more people rooting for you! Not sure if this story might help, but I have a friend who went 30 years suffering from chronic fatigue syndrome then found her way out of it. She started her comeback with a food sensitivity panel from everlywell and found she had high sensitivity to gluten and dairy products. She eliminated them and had a rapid and significant improvement in her CFS. I think she started taking butyric acid supplements at the same time. (Supposed to improve leaky guy syndrome) Deep brain stimulation and low dose narcan took her the rest of the way to her recovery. I haven’t talked with her for some time but she was still symptom-free a bit more than a year ago.
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KarlT
#15
@BannedWeapon How did you decide to go with every other day dosing? And have you tried weekly? Is a medical professional involved in any way? Are you checking blood tests?
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"…Deep brain stimulation and low dose narcan ,:
You probably meant Naltrexone rather than narcan, but just mentioning in case.
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I shot her an email. You are correct. When first prescribed she thought it was generic narcan because of the name similarity. Thank you for the correction! BTW, she is still doing well.
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Her PCP and rheumatologist are dead set against trying rapamycin. The rheumatologist was actually hostile to the idea. We get metabolic panels and cbc’s from the PCP routinely q6 months and will be using LabCorp for rapa troughs. The 1 mg qod was from a few anecdotes I have come across. We would have preferred 0.5 mg qd but have no access to that dosage. Her health had deteriorated to a point that survival seemed doubtful. We decided we had nothing to lose. Her cardiovascular status was abysmal. Bundle branch block. PAT at times. Frequently fainting if she tried to walk. Very low BPs despite treatment. I thought a fall would claim her one day if not her heart. I forget what her ejection fraction was. She would go from bradycardia to a rate in the 140s within seconds just laying in bed. HR and BP now stabilized. This morning she was 78 and regular, 114/72 and feeling fantastic still.
She has not tried weekly dosing but that is the schedule I am following. As long as she has these kind of results we are likely going to be reluctant to try a change. If she tolerates the med without significant adverse effects, that is, but we are very open to knowledgeable information and advice. Crossing our fingers.
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KarlT
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@BannedWeapon Thanks for sharing. I hope you keep us up to date. Her situation is obviously different than most of us here, and although it’s an n of 1 anecdotal experience, her response is remarkable and opens up a large variety of possible uses of Rapamycin.
Since her dose is so frequent, I would think she’d be at risk for side effects, but so far sounds like no real problems.
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eli
#20
Thanks for sharing; eccellent news. Based on this outcome I am seriously tempted to also try this dose every other day, as am always I need for more energy (remembering the days until my 30’s where I always had energy for anything, any time ) and since I suffer tiredness and sleepless nights after my ( current) 5 mg dose once a week or 10 days depending on the week and side effects …
Does she take it in morning? With food or any particular protocol ?thanks a lot and all the best !
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