Is anyone taking MSM with their steroids as treatment for this condition? I ask for my Mum who is suffering so much trying to come off the steroids, now had this condition for nearly 2 years with steroid treatment. She's currently on a dose of 5 a day. I want to help her, and heard that MSM is a great natural remedy, but is it ok to take with steroids? Any experience anyone has that would help her decide would be appreciated.
Thank you, and hope you are all pain free today!! Bev
If your mum has only been on pred for 2 years then it is relatively early days - whatever doctors may try to tell patients, PMR is far more likely to last for about 4 to 6 years for at least half of us, a quarter may be lucky and get the 2 year version but are then at far higher risk of a relapse at some later date. The other quarter of us have it for far longer I'm afraid.
MSM is very unlikely to "cure" the cause of the PMR which is an underlying autoimmune disorder - a bit like RA but it doesn't cause any joint damage, just the muscular symptoms and stiffness. Until that autoimmune disorder burns out and goes into remission your mum is likely to need some pred to manage the inflammation that is the cause of the pain and stiffness.
If 5mg is doing the job then she is on a very low dose, there really is not much to worry about and most good rheumies would be happy at that. The body makes about 7.5mg of its own - it just means it will make a bit less to top it up so to speak. I have been on pred for nearly 7 years now, have recently had to go back up to 15mg from 5mg because of a flare - but I have no problems so I am lucky. I'd rather be on 5mg, but if I need more then so be it. I have a very good rheumy-trained GP who just says "You need what you need".
Is she OK on 5mg a day? Has she symptoms? What happens when she goes lower? Is it just increasing fatigue or do the PMR pain and stiffness return? And (not being rude or nosy) but how old is your mum? Because that can have some bearing.
May I ask what is MSM?
Methylsulfonylmethane is an organosulfur compound with the formula (CH₃)₂SO₂. It is also known by several other names including DMSO₂, methyl sulfone, and dimethyl sulfone
Interesting, I see it's good for Rosesea and GI upset. Might have to check in to this, ha, ha.
It occurs to me to add it should not be taken by anyone on blood thinners.
For those who don't know, it is an organic sulphur compound supplement which is claimed to reduce pain and inflammation. I'm sure I remember someone saying they'd tried it and it didn't help. There has been a small-scale trial of it in osteoarthritis patients where they said their pain and physical function were improved. It is thought it may have a pain-relief component by altering how nerves transmit pain signals.
But neither of those things is the problem in PMR.
Eileen, Nice & informative abswer. What sude-effecrs have you exoeriebced on long-term prednisone. Mine is the weight gain, moonface, moodiness, easily agitated, & woirst of all, high blood pressure. Recently my Rheumatologist reduced me by 1mg. every 2-weeks, trying to get me down to 10mg. from 15mg. After 1rst 2-weeks I'm getting a flare, stiffness, overall body pain/throbbing (?), & days of terrible fatigue & lack of energy.
Of course you are flaring - your disease activity hasn't reduced enough to get away with cutting the dose. First you have to clear out all the existing inflammation - that usually means about 6 weeks at the starting dose. Then you have to have enough to manage the inflammation that builds up every morning as the inflammatory substances are shed in the body in the early morning. That is far too fast a reduction - you need more than 2 weeks to know whether a new dose is enough. And you absolutely can't force a reduction if your body isn't ready - the symptoms come back. All the pred is doing is managing the symptoms and you need what you need. Eventually the autoimmune disorder may go into remission, it does for most people, and then you won't need pred. But that won't come to order. In the meantime it may calm down a bit and you will be able to manage with less pred - but for many people they have to wait months for a significant decrease in the activity.
I've had weight gain - but I also gained weight with untreated PMR due to inactivity and the weight then redistributed itself with pred. I gained a lot more with Medrol. But i have lost almost all of it. Many people have found that cutting carbs drastically helps avoid the weight gain and moonface in the first place and lose weight if they have put it on. I lost 36lbs doing that, slow but steady.
Mood swings and agitation are common but it does improve with time and then as you reduce the dose. I have raised BP but it is very well managed with medication - but it could also be due to the atrial fibrillation that was probably caused by the autoimmune part of the PMR.
Thanks Eileen, My docs have been playing with increses & decreases since last July when 1rst when diagnosed. Been as high as 40mg. & lowest has been 10mg. I seemed to be pretty steady & doing well on 15---20mg., for several months. So it was just my last appt. with my Rhuem. that he decided to try the gradual reduction of 1mg. ,every 2-weeks, to see if I could handle less. The goal was stop at 10mg., which had been the initial starting dose, that I did great on originally for about 2-3 months. And, yes I just started, last week, a low, low carb. diet, my fam. doc. swears by & a real advocate of low carb. diet Thanks
They've possibly got you into the yoyo situation which can make it more difficult to reduce afterwards. It may settle down - if they left you at a dose for a few months and then tried a SLOW reduction. But 1mg every 2 weeks is NOT slow! The reductions described in the replies part of this thread is slow:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
If you try to go too fast your body resents losing its pred fix - so this tries to fool it. It, or something similar, has worked for a lot of people on 3 different forums and this one is being used in a clinical study in the north of England.
I had a neighbor next door that was a dentist and also
owned a martial arts business. He swore by MSM for
his arthritis. He has since passed or I would ask his
opinion. Of course like most people he probably never
heard of PMR.....
Wouldn't it be nice if it wasn't the same word for rheumatoid and osteo-arthritis? They are totally different things - and when people say I have RA the person on the other end says "oh I have that and chondroitin or MSM has cured it". They probably did help - but they won't help RA. Or PMR...
Hard to believe that everyone doesn't know the difference
between RA and OA.......Tom never said it cured his OA,
just that it helped with the pain. And believe me....no one
was in better condition than that man. He was small but
in excellent shape. Unfortunately liver cancer came into
his life.
They just hear "arthritis", not the first syllable.
Liver cancer - not nice at all. But things are looking much better these days with both chemotherapy and surgery. My sister-in-law has pancreatic cancer and has been on chemo since early last summer. When she started there were liver metastases but they disappeared completely - the oncologist had to check the labels, he thought the scans were of different patients. The pancreatic tumour had improved tremendously too but after a 6 week gap in the treatments because of poor blood results I think but which coincided with Christmas the tumour has started to grow again so she's on to second line drugs now.
My brother just said to me - far too much cancer about altogether. But this morning in our local paper there is an article about an Innsbruck group that thinks it has identified one cause of colon cancer: a combination of a lack of a protein and the presence of a specific bacterium. Sounds as if it may be a bit like the helicobacter story for stomach ulcers. It might encourage pharma companies to start looking for antibiotics again - because we desperately need them.
This answer was amazing. I'm so new to this, and for people who are living with this for years, and still functioning well is very encouraging to me. Eileen you seem to have a lot of information, and I can't seem to find information. Is it trial and error? Every site I go into says the same thing, and even my doc seems uninformed. I won't see the Rheumy as you folks call them until the 19th. I've already been waiting 1 1/2 months. I got a diagnosis a month ago, and a prescription, and that's it So I'm very ill informed. I like to get current information about everything, and this seems elusive. Any suggestions?
Interesting. I was going to run right out and find it, but I'm allergic to sulfa drugs.
I did a lot of reading online 7 years ago when I had my first big flare - it had been just liveable with until then for 5 years. I had to find out what it was myself - my GP didn't manage! At that time there were quite a lot of medical papers to read that you could access without paying but some have disappeared behind paywalls since then. I also found sections of rheumatology textbooks online - I'm a medical scientist so the language isn't a problem for me and that makes a massive difference. I am also a Patient Research Partner with a medical groupion the north of England, that allows me to get hold of stuff that only medics normally have. Recently I had a hospital appointment with the Head of Medicine here - and his hobby is PMR/GCA and we sat there discussing PMR and associated things - and he printed out a load of fairly new papers for me to take away! I think he enjoyed having a patient in who could discuss it at the same level.
There is a limited amount of "current information" - things change a bit but not dramatically really unless suddenly there is a breakthrough in finding a different way of managing it - and there isn't a viable one yet.
This thread
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
starts with a post that has loads of links to support sites and reliable sources of information. PMRGCAUK northeast has a very good site with articles and medical links and stories from patients. The "Bristol paper" in the first post there is quite easy to read and aimed at GPs, written by one of the top UK doctors in PMR, he's retired I think now but is still involved with the research process. I'm also involved with the NE support site/groups and you learn from that. Much of the background comes from 40 years working in the healthcare system as a technologist, a degree in physiology, a husband who was a clinical scientist and having worked translating in the medical field. One daughter is a nurse, one a paramedic - even mealtime conversations were medical.
When you do this sort of thing every day for 7 years you learn a lot, and meet a lot of people with PMR/GCA and learn from their journeys too. Some of my internet friends have become real life friends - and I'm about to meet another lot in Canada when I'm there for a conference about rheumatology generally but as a PMR patient. Plus some more when we return to Canada for our summer holiday. 
I don't think it is the same but don't quote me.
Medical science has come a long way with cancer treatment
but have a long way to go.....My sister and her husband both
died of pancreatic cancer just 8 weeks apart. However he
was 87 and she was almost 80. It's all a crap shoot isn't it?
I was just like you.....couldn't find much info online and my doc
didn't tell me much and I had no idea what to ask. I don't
remember how I found this site but so glad I did. I even told
my doc how much I learned from others and their experiences
with PMR.