1. < Polymyalgia Rheumatica (PMR)

PMR pain management with medical cannabis

Posted by menetski4 @menetski4, Apr 19 9:02am

Has anyone used medical cannabis for pain management/ treatment for PMR? Has it helped you taper Prednisone? Do you use it on a regular basis or just as needed for pain? What form of cannabis do you use? Do you use a combination of cannabis and CBD?

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

jacquianddan | @jacquianddan | Jun 8 12:39am

I'm in my late 70's and was perfectly healthy until Nov 1, 2014 I woke up with rheumatoid arthritis. Literally! Have been on a myriad of drugs, in and out of flare ups ever since. In Jan 2022 a massive flare up put me in hospital where a PET scan diagnosed PMR. Nothing prepared me for this level of debilitation. Muscle weakness and pain have curtailed my daily 4k walk, something I've done for 35 years. At present I'm taking methotrexate, prednisone, duloxatine and lyrica. With minimal relief. Have been researching CBD oil and PEA. Was interested to read the comments on CBD. Is anyone taking PEA and if so with any relief?

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jun 8 7:33am
In reply to @jacquianddan "I'm in my late 70's and was perfectly healthy until Nov 1, 2014 I woke up..." + (show)
@jacquianddan

I'm in my late 70's and was perfectly healthy until Nov 1, 2014 I woke up with rheumatoid arthritis. Literally! Have been on a myriad of drugs, in and out of flare ups ever since. In Jan 2022 a massive flare up put me in hospital where a PET scan diagnosed PMR. Nothing prepared me for this level of debilitation. Muscle weakness and pain have curtailed my daily 4k walk, something I've done for 35 years. At present I'm taking methotrexate, prednisone, duloxatine and lyrica. With minimal relief. Have been researching CBD oil and PEA. Was interested to read the comments on CBD. Is anyone taking PEA and if so with any relief?

Jump to this post

Hello @jacquianddan, Welcome to Connect. I haven't had rheumatoid arthritis but I have had PMR twice and am happy it's been in remission for the past six years. My mother had RA and I can remember how painful it was for her since there wasn't a lot of medications to help for her.

There is a discussion on PEA if you want to learn what others have shared.
-- Palmitoylethanolamide (PEA) supplement: Success with Pain & Sleep?:
https://connect.mayoclinic.org/discussion/pea-supplement/
You might also find this discussion started by @dadcue helpful:
-- "Evolution" of Seronegative RA into PMR: https://connect.mayoclinic.org/discussion/evolution-of-seronegative-ra-into-pmr/

Hoping you find some answers...

REPLY
1 reply
DadCue | @dadcue | Jun 8 8:05am
In reply to @jacquianddan "I'm in my late 70's and was perfectly healthy until Nov 1, 2014 I woke up..." + (show)
@jacquianddan

I'm in my late 70's and was perfectly healthy until Nov 1, 2014 I woke up with rheumatoid arthritis. Literally! Have been on a myriad of drugs, in and out of flare ups ever since. In Jan 2022 a massive flare up put me in hospital where a PET scan diagnosed PMR. Nothing prepared me for this level of debilitation. Muscle weakness and pain have curtailed my daily 4k walk, something I've done for 35 years. At present I'm taking methotrexate, prednisone, duloxatine and lyrica. With minimal relief. Have been researching CBD oil and PEA. Was interested to read the comments on CBD. Is anyone taking PEA and if so with any relief?

Jump to this post

"At present I'm taking methotrexate, prednisone, duloxatine and lyrica. With minimal relief."

I remember taking all those medications but not all of them at the same time. I probably relied on prednisone too much because I took very high doses of prednisone for a very long time.

I can only imagine what PMR on top of RA is like.

I had PMR on top of reactive arthritis (ReA) so I imagine the combination of PMR and RA is not good.

I don't have any experience with CBD oil and PEA. Now I only do a monthly infusion of a biologic called Actemra (tocilizumab). I don't seem to need prednisone anymore or any other pain medications except maybe Tylenol (acetaminophen) once in a while.

Have you ever tried a biologic to treat RA? There are many biologics suitable for RA.

There aren't too many biologics for PMR but that is beginning to change. There is one biologic called Kevzara (sarilumab) that is FDA approved for both RA and PMR.
https://rheumatology.org/patients/sarilumab-kevzara

REPLY
1 reply
thereselefever | @thereselefever | Jun 8 9:22am
In reply to @nigelf "I was diagnosed with PMR in 2017. I started on prednizone and then went to methotrexate...." + (show)
@nigelf

I was diagnosed with PMR in 2017. I started on prednizone and then went to methotrexate. The pmr pain disappeared but I weaned off the drugs as fast as I could because of the side effects. I live in Canada and cannabis is totally legal here. I am presently 67 years old and have not used cannabis since my 20's. I started to research the benefits of cbd for pain and inflammation. The info I was reading convinced me to try using cbd to control the inflammation which was causing the pain. I tried different types of cbd and have had success with it. CBD oil is not cheap so i started to look for a cheaper way of doing this. About 4 years ago I started making my own cbd oil using cbd isolate mixed with mct oil. It seems to have worked for me and is a cheaper way of doing it. CBD isolate does not contain any THC so you do not get any kind of buzz from it. The product is made from the hemp plantwhich does not produce thc as does the cannabis plant. since my initial diagnoses of pmr in 2017 I have not had any issues with pmr symptoms. 7 years pmr free, until now. I have just had a pmr flare up. Thats why im looking on this site for info. Something triggered this flare up and I have no idea what did it. Doctor prescribed 50mg of prednizone for 7 days and see where I'm at then. I took the first pill 10 hours ago and feel like a new person already. I know its a high dose but I plan this to be very short term and wean off it quickly and resume my cbd regiment. Hopefully it works for me as it did last time. I've found that cbd is something that you have to commit to and take it daily for a long period to feel the benefits. My experience is 5 to 6 weeks. it needs to build up in your system. sounds like a long time to see if something is going to work for you but I have not experienced a single side effect from using it for the last 7 years. I go to the doctor on a regular basis and go through all the normal tests. Other than arthritis and this freakin pmr I have no other health issues, so far. I guess once you have pmr you'll always have pmr. It hides and once in a while something makes it rear its ugly head and attack. I just thought I would post my experience with pmr and cannabis (hemp). Its not for everyone but I feel it has worked for me. If big pharma wanted people to get better cannabis would be legal everywhere.

Jump to this post

Thank you for all of this information. I have been on prednisone and actemra for almost a year and still experience pain. I am trying to get off of the prednisone as it is beginning to make me gain weight, even though I am eating the same diet.

I have wanted to try CBD, but there is no one around that has any kind of knowledge about how much to use, where is the best place to purchase it, is a tincture or an edible, or a drink, or an oil better? It is frustrating. So I do appreciate your input. I am going to do some more exploration.

REPLY
rosemargaret | @rosemargaret | Jun 8 12:35pm
In reply to @nigelf "I was diagnosed with PMR in 2017. I started on prednizone and then went to methotrexate...." + (show)
@nigelf

I was diagnosed with PMR in 2017. I started on prednizone and then went to methotrexate. The pmr pain disappeared but I weaned off the drugs as fast as I could because of the side effects. I live in Canada and cannabis is totally legal here. I am presently 67 years old and have not used cannabis since my 20's. I started to research the benefits of cbd for pain and inflammation. The info I was reading convinced me to try using cbd to control the inflammation which was causing the pain. I tried different types of cbd and have had success with it. CBD oil is not cheap so i started to look for a cheaper way of doing this. About 4 years ago I started making my own cbd oil using cbd isolate mixed with mct oil. It seems to have worked for me and is a cheaper way of doing it. CBD isolate does not contain any THC so you do not get any kind of buzz from it. The product is made from the hemp plantwhich does not produce thc as does the cannabis plant. since my initial diagnoses of pmr in 2017 I have not had any issues with pmr symptoms. 7 years pmr free, until now. I have just had a pmr flare up. Thats why im looking on this site for info. Something triggered this flare up and I have no idea what did it. Doctor prescribed 50mg of prednizone for 7 days and see where I'm at then. I took the first pill 10 hours ago and feel like a new person already. I know its a high dose but I plan this to be very short term and wean off it quickly and resume my cbd regiment. Hopefully it works for me as it did last time. I've found that cbd is something that you have to commit to and take it daily for a long period to feel the benefits. My experience is 5 to 6 weeks. it needs to build up in your system. sounds like a long time to see if something is going to work for you but I have not experienced a single side effect from using it for the last 7 years. I go to the doctor on a regular basis and go through all the normal tests. Other than arthritis and this freakin pmr I have no other health issues, so far. I guess once you have pmr you'll always have pmr. It hides and once in a while something makes it rear its ugly head and attack. I just thought I would post my experience with pmr and cannabis (hemp). Its not for everyone but I feel it has worked for me. If big pharma wanted people to get better cannabis would be legal everywhere.

Jump to this post

My children are suggesting that I try cannabis but I have such a sensitive stomach and get nausea easily that I am afraid to try. I also would not try it without speaking to my doctor first.

REPLY
2 replies
menetski4 | @menetski4 | Jun 8 5:16pm
In reply to @rosemargaret "My children are suggesting that I try cannabis but I have such a sensitive stomach and..." + (show)
@rosemargaret

My children are suggesting that I try cannabis but I have such a sensitive stomach and get nausea easily that I am afraid to try. I also would not try it without speaking to my doctor first.

Jump to this post

You can try THC with CBD gummies and let them dissolve in your mouth so that it doesn’t affect your digestive system. Add some CBN if you need better sleep. I often find myself up around 3am and just a half of a gummy can help me get back to sleep for the rest of the night.
You can also just try straight CBD gummies on a regular basis to see if that helps with pain. I don’t think we truly know all the mechanisms of cannabis but it has helped many. Everyone’s different but it’s worth a try.

REPLY
jacquianddan | @jacquianddan | Jun 8 5:42pm
In reply to @johnbishop "Hello @jacquianddan, Welcome to Connect. I haven't had rheumatoid arthritis but I have had PMR twice..." + (show)
@johnbishop

Hello @jacquianddan, Welcome to Connect. I haven't had rheumatoid arthritis but I have had PMR twice and am happy it's been in remission for the past six years. My mother had RA and I can remember how painful it was for her since there wasn't a lot of medications to help for her.

There is a discussion on PEA if you want to learn what others have shared.
-- Palmitoylethanolamide (PEA) supplement: Success with Pain & Sleep?:
https://connect.mayoclinic.org/discussion/pea-supplement/
You might also find this discussion started by @dadcue helpful:
-- "Evolution" of Seronegative RA into PMR: https://connect.mayoclinic.org/discussion/evolution-of-seronegative-ra-into-pmr/

Hoping you find some answers...

Jump to this post

Thanks for the info..

REPLY
jacquianddan | @jacquianddan | Jun 8 6:22pm
In reply to @dadcue ""At present I'm taking methotrexate, prednisone, duloxatine and lyrica. With minimal relief." I remember taking all..." + (show)
@dadcue

"At present I'm taking methotrexate, prednisone, duloxatine and lyrica. With minimal relief."

I remember taking all those medications but not all of them at the same time. I probably relied on prednisone too much because I took very high doses of prednisone for a very long time.

I can only imagine what PMR on top of RA is like.

I had PMR on top of reactive arthritis (ReA) so I imagine the combination of PMR and RA is not good.

I don't have any experience with CBD oil and PEA. Now I only do a monthly infusion of a biologic called Actemra (tocilizumab). I don't seem to need prednisone anymore or any other pain medications except maybe Tylenol (acetaminophen) once in a while.

Have you ever tried a biologic to treat RA? There are many biologics suitable for RA.

There aren't too many biologics for PMR but that is beginning to change. There is one biologic called Kevzara (sarilumab) that is FDA approved for both RA and PMR.
https://rheumatology.org/patients/sarilumab-kevzara

Jump to this post

Forgot to mention I'm on Rinvoq (upadacitinib as hemihydrate) 15 mg which seems to have my RA well controlled. PMA isn't mentioned as one of the conditions it is recommended for. Haven't heard of Kevzara but it could be marketed under a different name in Australia. Have been through all the other biologicals, one of which left me with peripheral neuropathy.
Rinvoq is a Janus kinase (JAK) inhibitor. Works inside cells to block certain signals thought to cause inflammation.

REPLY
1 reply
DadCue | @dadcue | Jun 8 8:53pm
In reply to @jacquianddan "Forgot to mention I'm on Rinvoq (upadacitinib as hemihydrate) 15 mg which seems to have my..." + (show)
@jacquianddan

Forgot to mention I'm on Rinvoq (upadacitinib as hemihydrate) 15 mg which seems to have my RA well controlled. PMA isn't mentioned as one of the conditions it is recommended for. Haven't heard of Kevzara but it could be marketed under a different name in Australia. Have been through all the other biologicals, one of which left me with peripheral neuropathy.
Rinvoq is a Janus kinase (JAK) inhibitor. Works inside cells to block certain signals thought to cause inflammation.

Jump to this post

Welcome to the forum. My rheumatologist would say you have a complicated set of conditions. I bet you have a lot of information to share.
-------------------------------------------------------------------
Let's see if I get this right ...

Rinvoq and Methotrexate for RA ---- Prednisone for PMR ---Duloxetine and Lyrica for neuropathic pain.

How many TNF inhibitors have you tried??
--------------------------------------------------------------------
Along with Reactive arthritis, uveitis, and PMR--- I was also diagnosed with trigeminal neuralgia. I'm familiar with nerve pain. Somehow I developed peripheral neuropathy too but mine was called idiopathic.

What works for one thing doesn't work well for the other thing. That was the problem I had except Prednisone worked "reasonably well" for everything if my dose was high enough.

Humira didn't work for PMR but it should have worked for reactive arthritis and uveitis.

Everything changed after I had several surgeries. I was then switched to Actemra (tocilizumab) and was able to discontinue Prednisone along with almost all my other medications that were primarily treating Prednisone side effects. It still took me more than a year to taper off prednisone because of adrenal insufficiency caused by long term Prednisone use.

Actemra (tocilizumab) is an IL-6 inhibitor --- the FDA approved it first for RA and later for other conditions and GCA a few years ago.

Kevzara (sarilumab) is also an IL-6 inhibitor --- also FDA approved for RA and recently approved for PMR
https://www.drugs.com/tips/kevzara-patient-tips#:~:text=Kevzara%20is%20a%20brand%20(trade,a%20protein%20called%20interleukin%2D6.

REPLY
floridalinda | @floridalinda | Jun 9 9:35am

I use a topical body balm which is a mix of THC and CBD. Helps with arm and shoulder and neck pain—a lot. Not quite as effective on leg and hip pain but better than Tylenol.

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