Just a quick note about myself first. I’m 51 years old (live in the US) and was diagnosed in late June (symptoms started in May). The Rheumatologist, still can’t put his finger on what it is I have.... he said it could be Lupus, Rheumatoid Arthritis or PMR. Ugh! But I’ve done a ton of research and my symptoms fit PMR to a T. On top of that, my Mom was diagnosed with it 8 years ago. I think because I’m “so young” being 51, he finds it hard to believe I have it??
I’ve gone from being a fit active runner and triathlete to a feeble old lady that can barely get dressed or get up from the toilet. Yes, I’m on Prednisone (15mg and tapering ever two weeks). I hate being on it!
In my research for different treatment/medication options, I came across this article.
What is the typical time length before PMR goes into remission?
My main pain is in my knees, groin and shoulders and neck. Some days it’s almost impossible to lift my legs. Does anyone else have pain in their knees?
I’m so happy to find this support group. I find this forum so helpful and supportive. It’s been a rather trying time for me and have shed a lot of tears. 😞 Any advice is always appreciated. 😊
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Actemra is not usually used for "just" pmr. We do have a few members on it for gca and one or two with other condition with pmr that will hopefully share there experience. Research after year one was that peoe were still on some pred as its not a substitute and it worked effectively in around 50% of cases. The research on how it may help after 2 years hasn't been published yet so compared to our knowledge of pred (50+years) it is limited. I am afraid pred is the best treatment as yet. You have to learn to be patient and understand your own pmr journey.
The variation in length of time to remission is such that you are asking how long is a piece of string I'm afraid. The median time for treatment with pred is 5.9 years. The pred is my friend and pmr the "enemy" that I have made peace with.
I hope you find your way through and get a dx. I didn't have knee pain... About the only thing that didn't hurt at first. The UK body NICE has shifted its advice on Dr's management of pmr to include the age 40yrs onwards. Good luck!
Firstly, 51 is not too young for PMR. I was 52 when I got it and I found it very hard to get a definitive diagnosis because of my age. More and more people in their 40’s and 50’s are being diagnosed now.
Next, I am concerned that you are still having quite a lot of symptoms and pain. You need to be on enough pred. to eliminate at least 70% of your symptoms. What was your starting dose and have you been comfortable at any other dose ?. You should never taper until you are mostly symptom free otherwise you will have a flare and have to increase the pred. until the inflammation is back under control. Studies have shown that PMR can last an average of 5.9 years, so you are in it for the long haul, I’m afraid.
There have been many discussions here about Toxilizumab- I think you can find them using it as a search word. Equally, Circumin has been much discussed. I find it helpful for my Osteoarthritis to some extent but it does nothing for my PMR.
Have you had a DEXA scan to check your bones? Most people are given Vitamin D and calcium to help the bones. We also find vitamin k2 helps with the absorption too.
I have learnt so much from reading and posting on here so keep in touch and ask anything you like- you are likely to get many replies!
I am so sorry that you are in so much pain and suffering without the reassurance of a firm diagnosis, especially when you have observed a close family member with the same disease. 51 is not too young for PMR, we have a number of people on this forum who are in their 40’s. Your symptoms do sound very familiar and knee pain can be involved. The pains are usually bilateral. The response to Prednisone is usually the clincher. Relief from pain and immobility is usually experienced within a few days of treatment.
Did you obtain at least 70% relief of your symptoms? If not, perhaps you could be tried on 20 mgs. This worked for me quite quickly and I have to say miraculously.
Tocilizumab/ Actemra remains a drug that has given us some hope, but as you say, cost is a real barrier. The drug also has significant side effects. It is often discussed on here if you do a search.Prednisone remains our most effective drug. Nobody wants to take steroids for a long time. The side effects are concerning but most can be counteracted with diet and lifestyle adjustments and regular eye examinations and other tests. You will find the forum useful in this regard.
The main supplements we require are Calcium, Vit D, Vit K and possibly Magnesium. People do talk positively about Tumeric. I try to incorporate it in cooking. It is important to protect your stomach when taking Pred. I have found live plain Greek yoghurt effective and better than Omeprazole which also has side effects. The average length of time for PMR is 5.9 years according to a Mayo Clinic study. Unfortunately a lot of misapprehensions exist around PMR, such as age and likely duration of the autoimmune disease . 2 years is still quoted and you could be very lucky, but it has to be said that most people who race off Pred have a relapse somewhere down the line. I am sorry if this is all pretty discouraging and a definitive diagnosis is by process of discounting other conditions. Please stick with us. There are very experienced people on this site who keep up with the latest research.
Hello and welcome to the ‘50’club’, not as small a group as many docs seem to think. Yours need to read a few up to date guidelines. I do appreciate your upset having been hit with GCA at 54 when I was fit, working with a family and very busy life. The impression I get is that most people here were very active before these things hit; perhaps there is a clue there. For some reason the body starts attacking itself and the key is for that to stop which it does in its own time, a quick fix there isn’t. Pred sounds and can feel awful but many aspects can be well managed and it has so much research behind it making it a known quantity. Most people make peace with it because there is a direct link between their symptom control and taking it. It sounds like you haven’t had that opportunity because your taper may be way too fast or your start dose was too low to begin with as 15mg is the lowest starting dose. Tocz by all accounts isn’t the universal wonder drug with no strings attached; it is a powerful immunosuppressant with its own potential issues, so it doesn’t come for free so to speak, but for some it is a godsend mostly for GCA when Pred doesn’t cut it. At this point those people have usually been on repeatedly high doses like 40mg for protracted periods and the risk/benefit balance is going the wrong way. In the U.K. the decision making body about cost/effectiveness has thought it not yet conclusive enough to add PMR to the list. Yes, it feels bad to be on what feels like a high dose but it doesn’t stay there and once you get to well below 10mg the side effects really do drop off and to throw in a powerful immunosuppressant then seems counterproductive. It seems a shame that you are possibly being denied the ability to get to this stage due to rushing the reduction before your body is ready because in the end, it is that which calls the shots, not an ideal on paper.
There is NO other treatment for pmr or gca. Pred is it. People can take supplements and the like for some of the side effects of the pred and some work others dont but pred is the only "treatment" that works to reduce the inflammation caused by the pmr/gca. Pred is not the big bad drug most doctors make out and gives most of us our lives back.
I’m 52. My PMR started in April. Normal bloods. I too went from active person to shuffling about. My main pain was top of arms and shoulders. Couldn’t lift a mug. I’m not in that pain any more. But I ache. Low grade discomfort and get tired walking...my legs feel like they have sludge not blood running through them.
I do get down about it. I know my symptoms are fairly mild compared to many here. But my life has changed. I take comfort from knowing it is self limiting.
It’s a time when children and older relatives need me as well as fitting in work. Hard to know what to change. I’m not juggling it v well.
Best wishes to you.
I try to focus on the good things. But have stinking cold at moment so feeling a bit meh!
That feeling the legs are moving through sludge sounds familiar. Went through a stage like that when I simply couldn't move at the pace I was used to. It went away, unnoticed, in a few months.
Actemra hasn't been either trialed or approved for PMR - just for GCA. It is a biologic - and its potential adverse effects aren't significantly better than pred if you ask me! It is heavy duty medication and very expensive.
If you have so many problems dare I suggest that 15mg may not have been enough to start with? And that reducing every 2 weeks is not helping? I too was 51 when PMR started but I wasn't diagnosed until I was 56 - and even then the rheumy was desperate to make it anything but PMR, as if it was beneath him. I was given 15mg and in under 6 hours went from being unable to get up off the toilet without a struggle and crawling up the stairs on hands and knees and stomping down like a toddler, one step at a time to almost normal. After a few weeks it was even better.
I have had PMR for 15+ years, it certainly didn't go into remission in the first 5 years, I don't think it has done on the last 10 since I have been on pred. I am unusual - about 5% of patients have it for life but a study found that some 40% of patients still required some pred after 10 years, albeit at a low dose and it isn't clear if that was due to PMR or non-return of adrenal function, especially in older patients.
Pred is my friend, it gave me my life back after being almost housebound because I couldn't walk or even use public transport and had had to stop driving (wrongly diagnosed) for a few months. I was in constant pain, I struggled to do anything, even holding a mug of tea was difficult. I refuse to compromise on dose, I take what I need to manage symptoms well - but I have no identifiable long term adverse effects due to pred. No diabetes, weight fairly well under control, as well as the rest of my life, no loss of bone density above what would have been normal at my age, no sign of cataracts (I wish), I bruise a bit but I also require anticoagulant therapy, my skin is fine which I put down to never using soap on it! Most adverse effects of pred can be managed or avoided in the first place when you know how - advice abounds on this forum. Start by restricting your carbs - especially since you are not exercising as normal - but this isn't the end of the world. It took one member 18 months to get from a wheelchair to distance running again but he is currently here:
I was at a Meeting recently & the Prof talked about the past, the present & the future treatment of GCA & PMR
At this time some GCA patients are being trialled on Tocilizumab (TCZ) but only after other treatments have failed. The cost of TCZ & the associated risks mean it’s not available for everyone at this time in the U.K.
He did discuss the future of treatment of PMR & some research is being done into JAK Inhibitors but he was saying this is well in the future ie 10years.
I’m not wanting to disillusion you but at this time Pred is the only treatment available, things may be different in the USA with a view to TCZ but again it may be down to cost unfortunately.
Hi. I'm a dog lover, a marathoner and a triathlete. Did my last triathlon at 70 and marathon at 55 so I do KNOW how you are feeling. It is a SHOCK and I am sure at 51 I would have been out of my mind. Good for you for looking at all the possibilities. I think you will find prednisone is the best. Here are my thoughts. You might have to start a little higher. Maybe 20mg. then reduce monthly by 2.5 to 15mg. then by 1mg. to 10 and then you will be a pro. Get a Dexa scan for your bones so you have a base line. Do not take any bone meds. get the book Your Bones by Lisa Pizzorna and take calcium k2-7 and D3. I stopped running because of a hip replacement but I am tap dancing and they say that is the BEST thing for your bones. But if you can, keep on running but take it EASY! and swim swim swim. I would think Tumeric is good. I did it awhile but I wasn't consistent. I found that giving up sugar alcohol etc helped a lot just because I wanted to be as healthy as possible. There is a good Smoothie. from a doctor (real doc) who swears by her vegan diet and green smoothies. I did it for about 6 months and felt wonderful and LOST the weight one gains from prednisone. I fell off that wagon but am back on having gained back some, not all the weight.. I just FEEL better doing it.. it is called The Smoothie Shred. Her name is Dr. Brook Gardner. But whatever you do... I would say cut out the salt and sugar. think of Prednisone as your friend (I used to think the HILLS were my friends so I could run up them without going crazy every time I came to one. ANYWAY mostly stay on this forum. Listen to PMR pro (although there might come a time she might scold you. haha PMR pro!!! ) she knows what she is talking about . And HeronNS and Sheffield Jane and Dorset Lady and so many others who will come with great advice. I am down to 3mg. I could easily be at 2mg I think but am traveling so taking it slower... It is 2 years this month. I feel good. My thick thick hair is thinner my skin (which became soft and lovely at first with prednisone) is back to its usual rough state with the lower dose and my attitude is still HOPE! Good luck. SORRY THIS IS SO LONG!!!
Others have covered most of the concerns you had. I will talk about triathlon and steroids. Although I had 15 years on you when I was hit with PMR, I can appreciate what you are going through. I was training for triathlon when all of a sudden I was completely immobilized I needed help to even get out of bed. Turning in bed required all my strength.
After PMR was diagnosed, it took almost a week for prednisone to kick in. Because you were in training and because ( I am guessing like me) you may have thought that you have overdone your training, you may have gone to a doctor later then you would normally. Accumulated inflammation needs to be cleared or pain will persist. Usually starting dose is 15-25mg for 4-6 weeks. Pain should be gone in a week or so, unless the dose you are on is too low. Size does matter and if you are tall and muscular, you may need more then 15mg. After pain is under control, you would start steroids reduction gradually, never more then 10% of the dose you are on.
The sooner you have PMR symptoms under control the sooner you can start your exercise. Being fit before PMR is a huge advantage for recovery, so dont waste too much time. At first you would start slow and most of the exercise will be in the "recovery" zone (which actually helps PMR pain and stiffness). You will be back in shape within 6months to a year, as long as you don't spend too much time looking for alternate treatment ( there is really none) and steroids are not as bad as they have reputation. I was back to my previous time (condition) in about a year.
Rarely people have all adverse effect on steroids. You may have some, but it is impossible to know in advance. Each one of them can be treated either with diet or other remedies. Main complain here is weight gain, which can be corrected by reducing carbs in the diet, but if you go back to training, you won't have to worry about diet.
Don't be afraid to ask questions, someone will have the answer here in forums.
Great answer. Haven't dared to try and train... maybe I will..albeit slowly..but it would be lovely to do another tri this summer. Maybe a sprint will be long enough! Inspiring!
You should, low level of training is actually beneficial for PMR patients. I am still active, but not because of training for triathlon per say, it is to keep my sanity. Exercise is the best stress release for me and it feels good too afterwards.
As you know the problem is convincing people who participate in recreational exercise to just take a beat to listen to what's happening with their body. That they can keep exercising, but perhaps adjust intensity and length of session in line with a new normal. Everyone's new normal is a different distance from tbeir old normal. So you have to work out where the line falls.
At the other end of the spectrum.... Some of us have difficulty building up tolerance to exercise.... Or better put activity. Because we were not recreational athletes, or have fatigue that impacts us more, or have more than pmrgca like OA or other conditions, we have to find a new normal too. Building extra intensity into daily activities.... Going to the fridge 3 times for the ingredients instead of once, filling plastic bottles with increasing water levels as light weights etc. For some, getting out of bed is an achievement, getting showered a breath taking activity, getting dressed requiring a sit down. All these daily tasks being difficult is as frustrating for the participant as not being able to hike or run 5k is for an amateur athlete. Move if you can but don't get frustrated if you are slower, more tired, or take longer to recover. We all have to make some adjustments to our daily lives. 🌻
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