Has anybody used lions mane for PMR?

Posted by spiritguided1 @spiritguided1, Aug 23 11:29am

I am considering trying lions mane to help my PMR. All conventional medicine has failed and I am reaching out for an alternative. Does anybody have any advice?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@spiritguided1, I think I would discuss the supplement with my doctor before trying it. I did a search and didn't see anyone on Connect mention it's use to help with PMR and I saw this warning on WebMD. Although it doesn't specifically mention PMR it does mention other autoimmune conditions and could make the symptoms worse, just my non medical opinion though which is why I would check with my doctor first.

"Auto-immune diseases such as multiple sclerosis (MS), lupus (systemic lupus erythematosus, SLE), rheumatoid arthritis (RA), pemphigus vulgaris (a skin condition), and others: Lion's mane mushroom might cause the immune system to become more active, and this could increase the symptoms of auto-immune diseases. If you have one of these conditions, it's best to avoid using lion's mane mushroom."
-- Lion's Mane Mushroom - Uses, Side Effects, and More:
https://www.webmd.com/vitamins/ai/ingredientmono-1536/lions-mane-mushroom#precautions
Do you mind sharing which medications you have tried that have failed to help your PMR?

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Profile picture for John, Volunteer Mentor @johnbishop

@spiritguided1, I think I would discuss the supplement with my doctor before trying it. I did a search and didn't see anyone on Connect mention it's use to help with PMR and I saw this warning on WebMD. Although it doesn't specifically mention PMR it does mention other autoimmune conditions and could make the symptoms worse, just my non medical opinion though which is why I would check with my doctor first.

"Auto-immune diseases such as multiple sclerosis (MS), lupus (systemic lupus erythematosus, SLE), rheumatoid arthritis (RA), pemphigus vulgaris (a skin condition), and others: Lion's mane mushroom might cause the immune system to become more active, and this could increase the symptoms of auto-immune diseases. If you have one of these conditions, it's best to avoid using lion's mane mushroom."
-- Lion's Mane Mushroom - Uses, Side Effects, and More:
https://www.webmd.com/vitamins/ai/ingredientmono-1536/lions-mane-mushroom#precautions
Do you mind sharing which medications you have tried that have failed to help your PMR?

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Thank you so much. It was recommended to me by a friend I think I will refrain from taking it. So hard when prednisone and methatrexate not worked. Side effects worse than disease. I appreciate your research.

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Profile picture for spiritguided1 @spiritguided1

Thank you so much. It was recommended to me by a friend I think I will refrain from taking it. So hard when prednisone and methatrexate not worked. Side effects worse than disease. I appreciate your research.

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Sorry the prednisone and methotrexate has not worked for you. @dadcue has mentioned Actemra helped him in another discussion here:
-- Anyone tried Actemra (Tocilizumab) to treat PMR? FDA approved for GCA:
https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/
Wondering if that might be something to discuss with your rheumatologist or doctor?

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Profile picture for spiritguided1 @spiritguided1

Thank you so much. It was recommended to me by a friend I think I will refrain from taking it. So hard when prednisone and methatrexate not worked. Side effects worse than disease. I appreciate your research.

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What other conventional DMARDs have you tried? Methotrexate (MTX) is probably used most often but there are others. Leflunomide sometimes works of PMR. Other options: Azathioprine and hydroxychloroquine have been investigated for PMR, but have shown limited or inconsistent efficacy.

If no conventional DMARD works it might be time to try a biologic DMARD for PMR. Biologic DMARDs offer an alternative or adjunct therapy that can lead to better disease control and a more manageable treatment regimen by allowing for reduced steroid use.

The thread about Actemra was originally posted when there weren't any biologics to treat PMR. I'm a big fan of Actemra (tocilizumab) because it works well for me. I was on Prednisone for 12 years with countless relapses no matter how I tapered Prednisone. A year of Actemra allowed me to taper off Prednisone and I have stayed off Prednisone for the better part of the past 5 years.
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The link below discusses biologic DMARDs for patients with treatment-resistant PMR or for patients who have difficulty using prednisone for PMR.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11422537/
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Kevzara (sarilumab) is currently the only biologic that is FDA approved for PMR in the United States. The FDA granted approval in March 2023.

If your doctor is willing to try biologics that are FDA approved for GCA then there are other options. I love the information in the following link because it suggests the outlook for treating PMR and GCA is getting brighter.
https://www.healio.com/news/rheumatology/20250220/tsunami-of-effortbrings-biologics-to-the-forefront-in-giant-cell-arteritis-pmr

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Thank you for your support. For me sadly it was a flu jab last October which instigated my PMR. 10 months of yet more drugs and horrific side effects leaves me depressed and demoralised. Like everyone with PMR it became life limiting almost over night. I just wish that there was a natural way of putting it to sleep. It would appear it doesnt go away on its own after time. I will go back to the rheumatologist and hopefully get the inner strength to persevere with it. I also had a dextramethazone injection. Appears steroids are useless for me. Once again thank you.

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Profile picture for spiritguided1 @spiritguided1

Thank you for your support. For me sadly it was a flu jab last October which instigated my PMR. 10 months of yet more drugs and horrific side effects leaves me depressed and demoralised. Like everyone with PMR it became life limiting almost over night. I just wish that there was a natural way of putting it to sleep. It would appear it doesnt go away on its own after time. I will go back to the rheumatologist and hopefully get the inner strength to persevere with it. I also had a dextramethazone injection. Appears steroids are useless for me. Once again thank you.

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I am in a very similar situation to yourself. Flu jab 2 years ago triggered the PMR virtually overnight. After 18 months had very bad side effects from methotrexate. PMR is self-limiting and will eventually go any for nearly everybody, but the issue is that no one knows how long in will last for any individual. Doctors do tend to be very optimistic when they quote 2 years or less to their patients.

If the steroids have been useless so far have you investigated what dosage is needed in more detail. It could be that you need a higher dose. That - like the time PMR can last - can be a very individual thing. Sometimes 15 mg daily isn't high enough initially and no progress can be made at that dose. Soem people like myself readily needed to start out at a much higher dose to crush the inflammation before any relief could be had and it was only after that that tapering could be considered. But if steroids - even at a higher than usual dose - don't work then the doctor would normally considered whether the PMR diagnosis was accurate.

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Thank you for taking time to respond to me. I began steroids at 20 mg but became really crazy erratic and suicidal so they stopped the medication but they gave me a steroid injection much to my puzzlement. None of them worked. They did nothing too lower CRP or reduce the pain When the weather changed in the spring. I noticed a significant change. I was able to move with more ease but still in pain. I was on the methotrexate for 12 weeks which did nothing for it again. The CRP remained unchanged. CRP began at 49 and then dropped to 29 persistently over the summer months. I insisted upon a scan because I questioned the diagnosis and the rheumatologist simply says it confirms this but won’t give me any other information of the results of the scans. It is mainly in my feet and my hands and my arms and my clavicles matching on either side of my body. I am dreading the winter months and the possibility of it becoming worse. In hot weather it is very painful and it is when it’s cold. A very puzzling disease I am wondering whether to go along the homeopathic route, but its a very expensive route and I know nothing about homeopathy. Our rheumatology department is absolutely flooded with cases of PMR yet I have never heard of it before my diagnosis! I do wish you all the best. I read many blogs where steroids have worked and I feel so jealous!! I also suffer with terrible insomnia and have done for many years. This can’t help. I lie awake for hours at night very painful tossing and turning and too much time to think and feel sorry for one self. I wish you all the best with your treatment and I wish the same for everybody on this site, it seems like a strange fluke of nature.

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