Hubby (55) was just diagnosed with PMR that we suspect he's had for about two years. He'd like to try and work through it without taking prednisone since every post we read is about people trying to get off of it. Do you think it's possible to manage the pain with other means and methods long enough for the disease to run it's course? Are there risks involved that we should be aware of?We're thinking of things like CBD, serrapeptase, ibuprofen, hot showers, massage therapy, etc.
We're pretty sure his Dad had undiagnosed PMR for about three years while he was in his mid fifties and is now in his 80's and thriving.
Sorry if these seem like stupid questions... This is all very new territory for us and I appreciate your input and advice. Thank you.
The European experts will be along soon. There is no other option than prednisolone, and for most of us, there's no noticeable side effects. It takes a while to come off them, but with a slow and steady approach most will do so - in my case it took 3 years, until Covid triggered a relapse, so currently on a very small maintenance dose.
The real risk of trying to avoid Prednisolone is PMR's big brother (or sister if you prefer) GCA, which is a real prospect if PMR remains untreated. Then you are way past stiffness and pain, and at significant risk of loss of sight - plus the treatment is much higher dosage of Prednisolone...
Painkillers in general are a waste of space as far as PMR is concerned. Prednisone is a wonder drug as far as PMR pain relief is concerned. The real risk one could be taking by not taking steroids is blindness, as the chances of getting GCA goes up if you have PMR. In that case one would be mad not to take steroids. Personally steroids got me back into the land of the living. I could hardly move before I was diagnosed.
Hello, the pain with PMR is due to inflammation and the Pred is there as a broad spectrum anti inflammatory to dampen it down to avoid the issues already mentioned above. Toughing out the pain or seeing pain relief as the only goal simplifies it too much; the pain is signalling the runaway inflammation, you need to deal with that. The pain relief is a very happy by-product. Over the counter anti inflammatories like Ibuprofen are largely useless because they deal with only one small part of a range of processes that cause inflammation.
Currently, Pred is the only effective comprehensive safety net that will stop damage or incapacity. The reason people are trying to come off is that long term steroids are not good unless at very small doses. The idea is to reduce the dose to the lowest effective level, trying to reduce at the same speed as the autoimmune activity which will go eventually. Each person’s journey with this is different and it often isn’t helpful to look sideways to people who are having a terrible time or who sailed through. You have to pick your way through learning as much as possible; the FAQ’s will provide plenty of information. Also, kick off with a good low carb diet to avoid the weight gain and risk of diabetes often seen as inevitable with Pred but aren’t.
I'll just align myself with the comments from Piglette and SnazzyD. All medication, whether it's Ibuprofen, Asprin, Paracetamol come with possible side effects and possible long term problems. Prednisolone is no different and at the moment it is the only drug, in the UK, which keeps the inflammation, which causes PMR, under control. The important word is "possible". Many of those side effects can be mitigated or removed altogether with a change in behaviour and diet. Yes, there are a lot of posts about people wanting to get off Pred, there are also posts about how Pred has given people a life back and allowed the to lead a relatively normal life and with very few if any side effects from Pred. Nobody wants to take any medication if they don't need to,but you need to weigh up the benifits of taking a drug compared to the consequences of not taking it. GCA and going blind is a very definite possible consequence of not keeping the inflammation which causes PMR under control. Pred gave me life back and, so far, has given me no real problems, so for me personally, it's been a wonder drug and while it continues doing its job and I need it to keep the inflammation under control, I am in mo rush to get off it. PMR will come to an end when it is ready, not when I decide.
Firstly, I would definitely agree with everything that's already been said.
I was diagnosed almost 4yrs ago and like most of us here, desperately wanted to avoid steroids and find an alternative way to manage my PMR.
Again, like probably all of us here, I discovered that unfortunately there is currently no alternative treatment that will works as effectively as steroids.
Some of the 'interventions' you've mentioned may indeed help ease some of the symptoms, but not enough to bring about sufficient pain relief and they certainly won't be able to manage the raised inflammatory levels in the body, which, as already mentioned, could then lead to the more serious condition of GCA.
I've spoken in several previous posts how I now see the steroids as my ally in this fight against PMR, and not my enemy.
Yes.....steroids are a toxic medication but many of the most common side effects can be managed, minimised and in many cases prevented altogether. This does of course require some effort on our part, so strategies such as eating a healthy, low carb diet to keep weight gain to a minimum is probably one of the things that should possibly be at the top of your list.
If you can maintain a healthy weight then you're much less likely to develop some of the more common side effects such as steroid/weight-related diabetes, high blood pressure, etc.
I'm now on 3½mgs of prednisolone daily but it's taken me 4yrs for the inflammation caused by my PMR to allow this to happen. The reduction must be slow & steady, otherwise you risk suffering a flare of the condition and having to increase the dose again.
When you're first diagnosed with PMR, it can feel quite overwhelming and scary, but there's lots of reliable and well-informed information here (make sure you take a look at the FAQ's section where you'll find an abundance of advice and help) and many very knowledgeable people to answer any questions you may have.
Educate yourself as much as possible, but only through reliable & legitimate sources such as here. (there's also lots of 'misinformation' out there too!) The more you know about your condition, the better equipped you'll be to manage your own individual needs.
Frankly - no. I had PMR undiagnosed for 5 years before being offered a 6 week course of pred to get me through a business trip to the USA. Within 6 hours of taking the first 15mg I was able to move normally, walking downstairs like an adult instead of a toddler stomping down one step at a time, and walked back up carrying a mug of tea instead of putting it on the highest step I could reach and crawling up on hands and knees.
Of course you hear about people trying to get off pred - you start at a higher dose than you need and then taper to find the lowest effective dose. To do that isn't easy, there is no fixed dose and you have to work out what YOU need to manage YOUR PMR. As long as the underlying autoimmune cause is active you will need pred - there is no fixed duration of the disease. Some doctors will try to tell you 2 years - in which case, wouldn't I and, indeed, your husband, have been over it? If we could use it like ibuprofen no-one would be trying to taper - but there are long lasting and unpleasant adverse effects from taking ibuprofen - it isn't Smarties/M&Ms either.
Those of us who were not diagnosed in a timely manner have often had long and hard journeys - and believe me, there is no other option for pain management, There will be people on this forum who have tried ALL that list at some point and there have been many posts asking the same over the last 10 years. No-one reported success.
If you look at the list of related posts there are at least 10 threads listed there. I wrote my story here:
Serrapeptase is probably a waste of money and there are a few posts about it. CBD may help for other aspects - it won't help with the inflammation of PMR and there are many posts about it. Hot showers work while you are in the shower. Massage MAY have a role but it won't cure and a daily massage is a bit pricey. For some it makes things worse - for me it is a valuable part of managing the myofascial pain syndrome part of PMR and over the years I have spent a LOT of money on massage, Bowen therapy, gym memberships to access more reasonably priced aquafit and Pilates classes. As I say in my post - they kept me upright and relatively mobile by using them every day but they never took the pain away and required a couple of hours at least every day to achieve that. As soon as the option was removed - I was wrongly stopped driving and without a car I could get nowhere, especially the gym - very little had changed from before.
as everyone has explained so brilliantly...prednisone is the ONLY treatment. But when he starts the pred there are things he can do to prevent some of the side effects. Cut carbs out (then no weight gain), cut sugar out (so no risk of diabetes), check eyes once a year for cataracts etc, perhaps reduce salt and keep legs on foot stool when sitting (less chance of fluid retention). Otherwise, celebrate the magic effect of steroids ...no pain and the return of mobility (but keep the return to mobility gentle)
I would say be very careful of avoiding pred which could trigger GCA this is not somewhere you want to be. If you for get that it and dont take pred you could loose your eye sight.
I started with PMR in May 2021 (unknowingly). I suffered (or thought I was suffering) throughout that summer, using Ibuprofen and Tylenol trying to aleve what I thought was just neck/shoulder/back pain. Then in August 2021 after my second Covid vax, woke up one morning unable to even move my right arm, hand, neck, shoulders. The PMR had hit the fan and the real suffering began.
Went to GP who diagnosed me with "old age" and was completely debilitated by November 2021 when I insisted that I get blood work to see if it was Rheumatoid Arthritis. The CRP inflammation marker was at 42. Called GP (he had missed the CRP on the report) and just before he retired, he urgently referred me to a Neurologist here in Nova Scotia. Neuro immediately put me on 20 mg. of Prednisone and within 2-3 days, all pain was managed. Was finally referred to a Rheumatologist in May 2022 who is the "let's get down to 1 mg. as fast as we can" type of Rheumy. I tried and got down to 11 mg. Had a relapse after a long bout with the flu. Went up to 14 mg. A few weeks ago, head, jaw, neck, back pain began and I also began a new course of Prednisone at 60 mg for GCA. Had an inconclusive biospy done. Went back to the same Rheumy who immediately decided it was time to start reducing the Pred. because, after all, the biopsy was inconclusive (which it would be after being on Pred for over a year). The 60 mg. worked, initially. She reduced me to 50 mg. after just 2 weeks. All pain returned. Now back at 60 mg. and there is still some pain after about 5 days, but I'm positive this will level off. Ibuprofen will not touch the pain of PMR. I also have a sciatic nerve issue at this time, which Ibuprofen/Tylenol do help, but it's very, very hard on the stomach. Without Prednisone a year ago, I would have been completely debilitated, because my buttocks, upper thighs were involved at that time. If you want actual quality of life, Prednisone is the answer. Side effects and all. PMR is not the only autoimmune disease (which it is) which requires Prednisone. Get that inflammation under control before it morphs into GCA. It may not ever, but do you want to risk eyesight, hearing loss, stroke, heart issues?
I don’t know how long medical students study the immune system. Whatever it is it’s not long enough. When I asked my previous Dr about PMR and GCA he said they’re different diseases. But if you read what the knowledge people on this forum have to say about uncontrolled inflammation causing PMR symptoms leading to GCA you’d gladly and thankfully take Pred. In essence I’m saying treat PMR with steroids and by so doing reduce the risk of GCA, but be alert to the symptoms of GCA before it affects your eyesight.
Hi sorry to hear of your husbands PMR, it’s a frightening diagnosis but once you begin to read patient experiences you will begin to understand the Prednisolone dance we do. I can’t live my life without it so I am grateful for it. I have tapered from 20 mg to 3 mg over the course of 2 years. I also tried pain killers like Celebrex and others that just upset my gut and made me feel dull and dopy, they don’t work. As I tapered I tried acupuncture and it helped me sometimes. Changes in the weather really affect me too, I have less pain when I am warm. Massage didn’t work, changes in diet helped me but didn’t cure me. Supplements help me. Magnesium, vitamin D, CO-Q10 and collagen. PMR is a serious thing to have because of the risk of GCA and it requires serious drug therapy just like other inflammatory diseases. I thought I was dying with bone cancer so I was actually relieved to get this diagnosis. I am so glad you found this site so early, it is awesome, do read everything on this site and keep asking questions. There is so much knowledge and experience here and compassionate people who want to help.
I would love to tell you he can tough it out and be done with it but that didn’t happen for me. It’s exhausting trying to put up with pain. I believe I had it coming and going for a couple of years before it really smashed me. Doctors told me it was old age, menopause, misaligned hips, shoulder strains etc it didn’t go away by itself when it was untreated in my case it just got worse. When I finally ceased up I thought I had bone cancer and was so relieved it wasn’t that. I was 58. Prednisone has a bad reputation but so far the only issue I have is some weight gain which is now beginning to reduce as I reduce the dosage and I am more active. I am feeling great at the moment.
Hi, I’m not treating my PMR with steroids. All I can say is that heat, cold, warm baths, oramorph, extended release morphine and Buprenorphine patches hardly touch it. I understand that this is because we are dealing with pain and stiffness from inflammation which is why the strong pain killers don’t help. They only way to deal with the inflammation and in turn, the pain and stiffness is with steroids. However, if I had the money or private health insurance (UK), I could’ve been given the biologic drug, Tocilimumab. I guess this PMR thing is all relative. For me, even though my PMR often leaves me bedbound, needing help to dress and shower, the steroids were even worse but in very different ways. All the best to you both.
If it is any consolation - even had you had private insurance, you wouldn't have got TCZ for long! Your renewal of the policy would have been extortionate, they don't cover chronic conditions and make it almost impossible to afford.
well, take my comments for whatever you think they are worth. My sister was just diagnosed about 3 months ago. After watching the horror of my life on prednisone, she has refused pred. She tackled cleaning up her body, and fighting the inflammation naturally. She has taken products for all aspects of her system especially for stomach and intestinal cleaning and strengthening. She takes about four products for her entire system and is serious about her diet. She has gone from barely able to get out of bed to being very healthy and active. She has her achey mornings, but she says if this is as bad as it gets then she is fine without the pred. She can handle some morning stiffness and achyness She is aware to keep on the lookout for GCA.
Also massage and chiropractic care is in the mix.
This took her a lot of time, study and money to accomplish. I am very impressed by what she has accomplished.
Not everyone can do this, cost alone would stop most.
Perhaps you could start a new post with a summary of what your sister does? It would be interesting to know about. Probably not suitable for most people for all the reason above, but I wonder if it might help for people who have got to low levels of pred.
I did not use prednisone. My PMR started about 2 years ago. I used yoga type stretching, low dose meloxicam and acetaminophen to get through. It was not easy. There were times when I thought about using the pred. Luckily I did not have a job and so there was no pressure to be physical except for taking care of my pets. The worst of my symptoms lasted about 9 or 10 months. I kept the faith that it would get better after reading that PMR usually lasted 2 to 5 years. I still experience stiffness and aches, but hardly any pain. I also developed effusion in my left knee and some crepitus in my shoulders, but the doc says these are not related to the PMR.
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