I’ve had pmr now for about 2 3/4 years. I’m currently at 5 mil grams per day. I am noticing that I am getting the start of moon face . I’ve lots of pain in the shoulders and hips. I had 20 radiation treatments in July for prostrate cancer and I am on luperon injections every four months .
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Streetglide18
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It does go into remission for most people. The average duration is 5.9 years. It would be unusual to develop the moon face side effect at 5 mgs - a relatively side effect free dose. I wonder if your cancer treatment has compounded things?PMR feeds off stress and you have had more than your fair share. Wishing you a complete recovery! 🍀
Thanks The reason I say I see some affects or symptoms of moon face is that there seems to be fat deposits on the side of my chin. It’s hard on my vanity!!
Sometimes cutting your carbs will reduce the fat deposits that cause the typical appearance with pred. Very few people escape some degree of moonface but you can try to minimise it.
Not sure this will reassure you but I had a moon face not dissimilar in shape to PMRpro's avatar and yes it affected more than my vanity.I was told by the kind people on here that it would go eventually and it has,mostly. I have also lost 7kg weight with more to come so that also helps.Good luck though.
I hasten to add that my avatar is a generic one and does NOT in any way reflect the shape of my face!!! I admit it could be slimmer - but that is a life-long problem!!!!
I hope that you misunderstood my comment,if not then I have misunderstood your response. I didn't suggest that your avatar replicated the shape of your face .............. I did suggest that it replicated the shape of mine. Sorry.
Yes it does - I know loads of people who have successfully got off pred. However - only a very small number are off pred in the 2 years that doctors all too often talk about. Four to five years is much more common.
Is the hip and shoulder pain likely to be the PMR? If so you seem to have overshot the dose you need: you are never reducing relentlessly to zero, you are looking for the lowest dose that successfully manages the symptoms. There is no point in trying to manage on too low dose - all that will happen is the inflammation will build up again and you will be back to the start and need more pred again.
Thanks fir the quick reply. I had a flare in Aug after my shit of luperon, I went uo to 9 milgrams. And stayed ther fir about a month, I have reduced ti 5 milgrams now and like I mentioned before I’m still in. pain , at no time did I get myself pain free. Always just brought the pain ti a tolerable place .
Was it better at 9mg? Maybe you have what we often call the "add-ons" and they often respond better to targeted management with steroid injections and/or physio/therapeutic massage.
The pain was about the same as it is now . Sometimes in my shoulders it feels like the ligaments are rolling on my bones if yiu know what I mean . Good suggestion on the steroid injections I may try that. FYI. In the spring of 2020 I did go to Mexico and had some glucose injections in my shoulders back and hips and right hand. This took the pain away and it lasted until the fall of 2020. But because of Covid I have not been able to go back. Our doctors do not recognize this treatment.
Not glucose, but I have had needling done on my back muscles and it did a great job. Here in Germanic Italy they use lidocaine or just saline - it is called quaddling because of the little blisters the technique causes under the surface of the skin and it encourages the muscles below to relax. Hurt like hell - burns for a few seconds as they do it, but it is very effective and most patient ask for repeats despite the pain!
When I got this treatment, there was no pain to speak of. The pain in my right hand has not returned. The pain in my shoulders and the rest of my body went away within an hr of the treatment . The pain in my shoulders body all came back in about 6 months.
Often times the saline used has 9/10% benzyl alcohol preservatives. This actually acts as a local anesthetic. I’ve used this to numb the skin before putting in intravenous catheters.
It does for the majority of people, but invariably they don't hang around on here to tell the tale unfortunately.. if they did it might give those still going through PMR hope.
Plus as other have stated it can last a longer than doctors think and tell you, and maybe not helped by other health issues you have.
You will get there, but it may take longer than you wish.
I look at this forum every day even though my PMR has gone or is in remission or whatever the correct phrase is. I feel that, having benefitted hugely from the advice on here, that if I can give some advice and/or encouragement, then I should.
I was diagnosed in December 2017, started on 15mg of Pred, reduced carefully using a DSNS taper plan and reached Pred zero in April 2020. So, two and a half years with PMR and Pred and now over a year and a half without.
I realise that I am one of the lucky ones and got there sooner than most but it can and does happen - just give it time!
And I am half expecting it to 'rear it's ugly head again' but this time, I will be prepared...
I know some do, and yes your experience is appreciated, but an awful lot don’t.
I feel the same about “giving back”, the charity has no high street shops to volunteer in like so many larger charities, so I’m honoured to be a ‘volunteer’ on here.
Perhaps like alangg, I'm another "hanger on" ... who reads the posts but rarely puts up replies. Is it a male thing, I wonder? I'm over 2 years in, and down to 2mg, with only relatively slight aches in my shoulders (and occasional leg cramps, whether PMR or otherwise). I don't believe PMR has gone but I can cope ... not least thanks to the support provided by you and this site. Best wishes to all.
Again. ditto to DL's comment - but I think more contributions from our men might be helpful for male newcomers! I know some feel reticent because it often looks as if it is all women - even though it isn't apparent from user names. There was a conversation about that recently too!
I think I'm just about there!! Two years and 5 months and I just dropped to zero pred 3 weeks ago. I do feel slightly less agile-like stiffness at the moment but I often get that after a dose drop and then it goes away. We'll see. But either way I felt like I turned a corner in the summer. Suddenly I had a load more energy and at the end of October I undertook a 6 day gravel bike tour, every day covering over 50km, including around 1000m climbing, through the Scottish hills. I was chuffed to bits. There is hope 😊
Hi. I am in remission from PMR. Had symptoms for 5 years. It was hard on the really low doses when I felt no pain to know if it had "gone". I took 0.5 mg for a few weeks before putting the tablets away in February 2020......I still have some as a security blanket but I think they will be out of date.Try a course of Mindfulness. I was prescribed the book ' Mindfulness for Health' by my GP. It is about acceptance and learning to enjoy the life you have, not the one you want. It helped me.
I am another in remission from PMR. Male aged 71. Diagnosed March 2019. Reduced dose of pred from 15mg initially and eventually really slowly from 3mg onwards. Finally off steroids from July 2021 by which point I had been on 0.5mg every other day for a few weeks. I still regularly visit the forum which has been an invaluable source of information and support. I will continue to stay "lurking" but appreciating you all!
Hi, it’s great to hear from people who have ‘come out the other side’. It gives me hope that one day I’ll join them although only I’m only 16 months in and struggling at present.
Thank you for asking. I upped my pred from 8mg to 10mg for 4 weeks and after that felt the PMR was much better. Because I was on the higher dose for that long I’m now on a slow taper alternating 10mg and 9.5 for 3 weeks. I’ll then do 9.5 until after the new year as I’m flying to the US to be with my son and family for Christmas (unless Omicron has other ideas!). I’ve complicated issues by tripping and stumbling into a wall 10 days ago. I put my arm out to break my fall and in doing so twisted and wrenched my shoulder. The pain got progressively worse to the point where I couldn’t sleep when laying flat. I contacted 111 last Thursday and ended up in A&E having an X-ray. No bones broken but they think I have soft tissue injury and the X-ray revealed osteoarthritis in my elbow joint. I feel I’m improving slowly but now I have to ask myself whether it’s PMR, osteoarthritis or the fall.
I do have a question. How can you tell whether you are on too much Pred. to control the daily PMR inflammation? Does it harm you to be on more Pred. than your body needs?
I would say that it’s a combination of all three ….and the after effects of the fall is likely to make the PMR flare….does that make sense? I found lower doses of Pred allowed my OA pain to come to the fore.
To be honest in your situation I would be putting the tapering on hold until well after Christmas and your trip to US…..your recent mishap, the travelling and Christmas will all be stressful (some of it nice, but still stress) so don’t push your body too much.
As for too much Pred, don’t think that’s likely at the levels you are talking about….if you were in the 30s or 40s long term then maybe there would be issues, but below 10, better to be on a little too much than not enough.
Just concentrate on now, and then think about reducing come the new year. …and hope you get to see your son.
I have had PMR 20 plus years, GCA 12 plus. My issue with the long term of the disease is that I was misdiagnosed for many years. If caught early the disease has a better chance of going into remission. I have also had issue with stress and anxiety. A low dose of BuSpar helped me tremendously. I am also a cancer survivor. The one thing that helped me more than anything with pred side effects was a low sodium diet. I have been on pred for over 10 years. I am now on Actemra, a biologic. Actemra has allowed me to get down to 5mg. of prednisone. My father in law had radiation treatments for his prostate cancer. He had a swollen face also. He survived, you will also. He lived 10 more years after treatment, eventually passing at age 90 from something completely different. Take care.
It s been a little frustrating because two and a half years ago I was a productive person and now I am unable to work, and I’m low on energy. Thanks again for the encouraging words. It’s just frustrating sometimes. I’m looking forward to when it will pass. I would really like to enjoy this retirement thing. Hahah
I'm in a similar position to you. I was diagnosed with PMR 12 months ago and started at 20mg pred, 6 months later I was diagnosed with prostate cancer and had radiotherapy treatment which thankfully was successful. I'm now down to 9.5mg and tapering using DL's schedule, slow tapering appears to be the secret. I've developed moon face and a fatty neck but that's the least of my worries, fatigue is a major issue in my life which I hope eventually disappears. To answer your earlier question "does PMR ever go away" my brother who is now 94 had PMR in his early 80's and has fully recovered and is completely off pred and is leading a "normal" life for a 94 year old, doing his own shopping and housework having recently lost his wife. I find this forum a great source of support and guidance and thank the ladies for the time and effort they put in to replying to us males who are in the minority here.
Statistically a lesser number. It's also that the women are more likely to be open and up front with the issues they face however embarrasing they seem. We men are more prone to sidestep or not discuss certain issues so openly. I don't subscribe to this so maybe unusual, but I think on this forum it is important to be as open as possible so we get honest answers to the issues that affect us on a daily and changing basis.
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