I was diagnosed a year ago with PMR was on 20mg of prednisone and ended up losing all my top teeth side effect. I went off all medication for three months pain, stiffness, depression all came back with a vengeance. I am looking for other resources than prednisone to help alleviate the symptoms does anyone else have some suggestions?
Suffering with PMR: I was diagnosed a year ago with... - PMRGCAuk
Suffering with PMR
Written by
jevuki
To view profiles and participate in discussions please or .
Read more about...
50 Replies
•
Sorry, the only current effective medication for PMR is prednisolone (prednisone). There are some anti-inflammatory foods/diet which you can try which might help, but they won't manage the inflammation which is at the root of your problems. The Mediterranean diet is a classic example.
Painkillers or anti-inflammatory meds did not touch my pain and I think that is true for most patients. In any case, they all have side effects just as bad as Pred.
You do need to be aware that you have a higher risk of GCA when you are unmedicated as the inflammation builds up, so do keep it in mind.
They offered me Methotrexalate and I have declined since you can loose your hair
Methotrexate does cause some hair thinning for some people, but it is not like having chemo. I think you would really need to take steroids with the MX though, it is supposed to help you reduce the steroid dose faster.
I am not willing to loose my hair on top of the teeth I have to work and that would just put me over the edge
Hi
I can only add please reconsider Preds are not always the enemy sometimes it us.
I self diagnosed a year ago and have problems reducing but taking it slowly with advice from experts on this site.
Their are a few of us who are still managing to work but that in itself puts extra pressure on us.
I was at the stage I was unable to work could hardly get out of bed or care for myself 3 months of sick then the magic preds .
I still have bad days but have been back at work a year in November .
I for one never wish to go back to those dark days pre Preds .
Its your decision but I hope you will reconsider .
Rose
• in reply tojevuki
Jumping in with my experiences with methotrexate.... Nasty stuff my hair thinned but what was worse was the terrible hypoglycemic feeling of being sick and then eating to make it go away. I had been doing ok on losing weight with prednisone only but not with the methotrexate as I was so miserable.
All of my family n friends saw the difference once I had been off the methotrexate for a month.
We are all different but the studies I read shared there was no clinical evidence the Methotrexate did what was hoped.
So sorry about your loss of teeth. Ps my hair gre back thicker n a bit curly.
jevuki• in reply to
Thank you and yes our bodies are all different that is my biggest fear of Methotrexate if I lost my teeth on Pred then I would surely loose my hair on that. My doctor sadly agreed. I am back on Pred 10 mg a day and doing ok not great. The higher dose of 20mg really worked better. How do you like your curly hair?
• in reply tojevuki
Well I always wanted curly hair and I keep it short and it looks wavy not like tight curls. It is a lot thicker than it was.
When I got the moon face I wouldn't even leave my apt. And if I did I told everyone my face was due to Prednisone. It was not only embarrassing but also uncomfortable. Then I started to lose my hair and it freaked me out.
My face felt so tight with edema thankfully the edema has gone down and now I have chubby cheeks due to the weight gain. The moon face came on at 40 mgs and subsided at 30mgs.
I am now on 20 alternating with 17.5 on the dead slow method so far so good.
jevuki• in reply to
So glad for you I understand how this disease makes you feel so unacceptable.
I need to research the dead slow everyone refers to
thanks
No need to research it. Here it is on this site with all the relevant explanations:
I lost my hair from prednisones. I have some great wigs. Losing your teeth is not good but the alternative is not good either. If you are in the US they are using TCZ as a steroid sparing alternative. I was offered the drug and declined because of its side effects. I have GCA and have been on prednisone since July 2015. I'm living with the numerous side effects and down to 10 mg as of today. I also had PMR and was on prednisone for three years but lower doses. I think you have to bite the bullet and get well.
How awful for you. Can you give us a few more details about your PMR-pred journey? Were you on 20 mg the whole time and did you have any other side effects? When you started were you given advice how to avoid the side effect of bone thinning, like taking calcium, D3 (and a few other important supplements like magnesium and Vitamin K2)? Prednisone really is the only effective treatment for PMR, but there are different forms of it, which could be helpful, plus I understand there's another cortisone (hydrocortisone) treatment which can help but not as conveniently. There will be other, expert voices along in due course to offer more helpful advice.
I take supplements even before the PMR D3, Magnesium, E, Fishoil, CQ10 I also have phalessimia which just complicates the PMR. No warning of the teeth issue, I get them cleaned regularly 4 times a year my dentist was shocked within three months all the damage. Yes I was fluctuating between 20 mg and 10 mg. Tried to reduce but pain was ever present. I am a working professional and so you can imagine my horror at the dentist. I have now 50% bone loss in my jaw
Yes other symptoms depression, anxiety, insomnia weight gain and always, always hot!
I had all of those due to PMR in the 5 years I had no pred. It isn't a simple equation I'm afraid. Even on pred you don't get 100% pain-free for most people - but it's an awful lot better than no pred IMHO and I think I know what I'm talking about there since I have the t-shirt.
How awful for you, I am so sorry. Did you have a Dexascan for bone density when you started the steroids?
PMRproAmbassador
Pred is the only way to manage PMR at present - and it isn't going to change in the foreseeable future (unless you are seriously rich and can afford to try tocilizumab at £17k per year as that does seem to do something about kicking it into at least temporary remission. It also has some potentially jolly side effects. Ordinary painkillers do next to nothing - and also have potentially fatal side effects with regular and longterm use.
I had PMR for 5 years without pred and sort of managed by major lifestyle changes - if I couldn't drive or be driven there, I couldn't go. I struggled out of bed in the morning, got into a swimsuit before my muscles cooled down and fell into the car and headed for my gym where the pool was warm. The best days were when the aquaaerobics class was at 9.15am. I worked freelance so was able to choose my working hours and we were well enough off to afford the gym membership and a car - I couldn't go anywhere by public transport.
I was always in pain, I gained a lot of weight because of immobility and I was desperately lonely and depressed - I couldn't do things with other people so became isolated. Immobility is also a major risk factor for osteoporosis.
You are probably at a higher risk of developing GCA without pred, longterm the unmanaged inflammation is a predisposer to some forms of cancer and to cardiovascular disease. If you develop GCA you will have a stark choice because if you are in the UK you have the choice of taking pred or risking going blind. Again - unless you are rich and can afford tocilizumab which does appear to work in GCA and is available to some people in the USA if they can sort out funding. It isn't normally covered by insurance as it is still off-label use although some insurers will cover it if you have it done in hospital.
If you won't try methotrexate I'm afraid there is little else anyone here can suggest. You can try antiinflammatory foods and supplements. But in the 7 years I have been working alongside the charity on 3 different forums I have met no-one who has managed it successfully without pred.
And if you feel putting up with the pain is better than maybe needing a wig (IF you do lose your hair which is not common at the doses used in PMR) and risking loss of vision then I wish you all the best. But it is something I couldn't have dreamt of doing for the 12 years I have had PMR. That first 5 years was hell on earth.
This is a terrible struggle trying to get thru the day maintaining a job, household, husband children etc. Loosing the teeth was devastating I still have not recovered from it. Losing my hair is so out of the question at this time. I am on 10Mg pred per day and looking to wean asap I still have aches etc but am tolerating it. I will look into the natural suggestions folks have made on this forum it cannot hurt if something works it will be better than Pred. Thank you for your input I appreciate it from everyone
Please read the response I made to HeronNS (I hope you can find it as I have no idea whether it will be above or below this post!). To go with that - were you on any other medications besides pred?
But here you mention the demands you obviously feel you must fulfil - job, household, husband, children etc. Never mind the etc, I struggled doing that as a perfectly healthy young woman. Something you probably will have to learn to accept is that you are no longer a perfectly healthy woman - never mind your age. One of the key aspects of managing PMR and its associated fatigue with or without pred or any other medication is pacing and there is a thread here
healthunlocked.com/pmrgcauk...
with some links to a couple of very useful resources - the second is particularly good.
If you force yourself to do physical things that are too much for your poor inflamed body then you will feel even worse, and that applies whether you are on medication for the PMR or not. With pred at least the blood supply to your muscles is better than when the (probable) vasculitis due to the underlying autoimmune disorder is not being dealt with.
With the best will in the world, you cannot do this on your own - and if the job is so important then the husband and children need to step up to the plate and do their share. If you physically can't manage your household in general - then you have to consider seeking paid help to take over that aspect. You have to come to terms with one very significant aspect: you have a new normal. What you could manage to do pre-PMR is no long applicable.
All of us here have been there - we aren't singing from the same hymn sheet for no good reason. Others have also had to face up to the disappointing reality that they are no longer able to do their job as they did before. Some have sought alternatives, some have cut their hours, some have retired far earlier than they wished to. Others have accepted the medication that makes them just about able to continue with their careers and the side effects that came with it.
There is no easy way around PMR - but believe me, it is a pussy cat compared with the other forms of vasculitis out there!
(PS - I see the other response is below!!!!)
Dear PMRpro
Your wisdom, insight and trusted technical experience / knowledge in these things never ceases to impress me. Also, how you communicate the more complicated 'medical stuff' in plain English. You put many GPs (and possibly some Specialists) into the shade in terms of giving reliable information and support both to PMR 'Veterans' and 'Rookies' alike.
Keep up the great work!
MB 
Hi - I agree with every thing said - and as others have mentioned, untreated you may then develop GCA - which necessitates an even a higher dose of steroids and unless you want blindness or other nasties there is no real alternative. This is what happened to me, un-diagnosed PMR for 3 years and then eventually GCA developed. (also diagnosed for a further 2 years)
I have hated every single steroid tables taken and moaned often on this site .... the side effects have been grim.........but the alternative to not taking them is worse. And Yes, this is life changing to most and even if we try to ignore it ..... want to ignore it and hope it will go away on its own, unfortunately it doesn't .
I have been offered methotrexate in addition to the steroids, currently I am declining but will see how I progress.
Best wishes
DorsetLadyPMRGCAuk volunteer
Hi jevuki,
Although most has already been said, I'm not going to reiterate that, but I am going to add my personal experience -,which may make you reconsider your stance.
I had undiagnosed PMR, so no choice as to whether to take Pred or not. Not knowing what it was, or the implications, I took OTC painkillers in copious amounts, no relief.
Eventually, after about 18 months still untreated my right eye became blurred starting at the bottom of the eye, and over 4 days travelled to affect complete eye. GP, on 3rd day could find no apparent reason, so left me with no choice but to go to the hospital the following day, for GCA to be diagnosed.
The most chilling words I have ever heard were then uttered by Ophthamologist - "well, we know what it is and unfortunately you have irrevocably lost sight in that eye - hopefully we can save the other one, but we can't be sure for another two weeks". Two weeks have never gone by so slowly!
I consider myself lucky to have got to hospital in time, many don't!
There is no guarantee that your PMR will develop into GCA, but why put yourself at risk when there is a viable, albeit not particularly nice, solution.
After Pred your hair will grow back, your eyesight won't!
To those who fixed on jevuki's hair woes, I think more to the point was her devastating dental issues. What would you suggest to help with that? Is it possible that prednisone was only an innocent bystander in that calamity and it was something else, or a combination of things? I have only heard of dental issues in relation to osteoporosis drugs.
"Use of corticosteroids, such as prednisone, and antiepileptic drugs, can lead to the loss of bone that supports your teeth. Bisphosphonates, drugs used to treat osteoporosis, can sometimes cause a rare condition called osteonecrosis of the jawbone, which results in destruction of the jawbone. Symptoms include painful, swollen gums or jaw, loose teeth, jaw numbness, a heavy feeling in the jaw, fluid in the gums and jaw, and exposed bone."
I have to say I was surprised it happened so quickly but maybe not:
ncbi.nlm.nih.gov/pmc/articl...
although they do say they found no direct link between pred and periodontal status. What surprises me most is that the hygienist didn't spot anything going on - which they should have, especially in so many visits.
"Generally speaking, dentists rely on dental hygienists to identify areas of the mouth where periodontal disease is problematic. Presently, the only reliable way to detect bone loss is through conducting a periodontal probing/recording. Hygienists have the primary responsibility for probing, yet many offices have hundreds of patient charts with no up-to-date probing chart for active patients.
The standard of care for periodontal charting is one full-mouth probing/recording at a minimum of once per year for every adult patient. The hygienist can fulfill this obligation more efficiently with assistance from another auxiliary who records the numbers as the hygienist calls them out. Periodontal Screening & Recording (PSR) is a screening method for periodontal disease and is not considered to be a comprehensive probing."
which I took from this article:
rdhmag.com/articles/print/v...
My cousin has also potentially devastating periodontal disease due to poor monitoring of dental pockets (no pred involved) - and she wasn't even told about it. She is in the process of suing the dental practice who didn't get it right. That at least will pay for the very expensive remedial work being tried by a specialist in London in the hope of stopping the progress.
Nothing can bring the teeth back - that is a given so I think that may be why people have fixed on the hair issue.
Interesting. Usually I can find info about stuff when I check the internet but this particular side effect doesn't seem to get much attention. I've had a lot more tooth pain than before, which apparently is caused by receding gums, an issue which was not a problem for me before pred (always told I had a very young mouth). I'd thought it was an indirect effect caused by the potential for pred to thin the bones and felt it improved very quickly after both reducing initial pred dose and taking more effective calcium supplements although it certainly hasn't gone away completely. Another thing to highlight on the (so-far non-existent where I live) handout I think all new PMR/GCA patients could benefit from. BTW dentist's only suggestion for relief was for me to rub gums with toothpaste for sensitive teeth!
I have been told that it is possible not common I just happen to have the right ying and yang and my body reacted in that manner. I am very angry, disappointed and now trying to deal with the dentures which take six months to fit properly. They hurt move constantly (because gums are shrinking) and eating is a disaster. So on top of pain, being dead tired yes I am extremely sensitive to taking a chemical that will damage me further. My son is getting married on 9/30 and I am taking 10mg a day so I can at least be somewhat functional at his wedding but since I started all I can do is cry
Oh Jevuki, what a lot you have on your plate right now. It is hard for you to be able to rejoice in your son's happiness, but I do hope that by the time the day comes you are feeling well enough to enjoy the day. And even happy events create stress as we all know. As for the weepiness, I think even those people with a lot of support and the best possible outcomes from the medication are more emotional . At least, I think something happens to us which makes emotions bubble to the surface much more easily. I think I've always been an emotional, dare we say sensitive, soul, and since pred I find I really have to shield myself from worrying or disturbing news, ideas, events - not simple in the world as it is. The best thing I've done for myself is simply being able to go for walks near where I live, being very lucky to live where I can enjoy fresh sea air, and even a short trail through a scrap of woods. (I live near the edge of a city harbour.) Just being able to immerse oneself, even for a few minutes, in contemplation of nature is very healing. 💕
Thank you Heron this disease makes us so very alone. No one can really understand especially family when they look at you and you appear normal but inside you are a disaster. I have asked my son to fix up my bike and I will try to ride 1/2 a day to start. I am thinking that may help
If you like bicycling that would be a great start, but remember, don't overdo it. I took up Nordic walking a few months ago and my third day out I went for a really long walk, no problem. Next day I was shattered and understood why the instructor had told us to start with fifteen minutes a day about three times a week. A few months down the road and I'm perfectly fine and love the exercise!
Hi Jivuki,were you seeing a hygienist 4 times a year before pred or since you've been taking it?
Hi jivuki, I was in so much pain for 5mths couldn't wait to be put on steroids, then regretted it even though all pain had gone with steroids but put 3st on in 3mths big round face hump back, when I started reducing the pain came back with a vengeance,now I have been put on Leflunomide as well as 5 mg steroids, I'm afraid now I think I would rather have thinning hair than all that pain while trying to lead a normal life, you are the same person on the inside, doesn't matter what other people think about weight gain or thinning hair, you will not be happy with all that pain everyday, I have been there in that place where you struggle everyday so tired you have to sleep, so much better now, so please be careful and really think about taking steroids because if you loose your eye sight where will you be then, hope you can make the right choice. Val
Hi jivuki, how devastating for you to have lost your teeth- I can only imagine what that must be like, especially to have PMR on top of that.
I just wanted to add my experience of Methotrexate- I was put on it quite early on as I couldn't reduce the Pred. with out having a flare. My hair did get significantly thinner initially but then it grew back curly which required a tutorial from a hairdresser as it was so different from my thin lanky hair! Then it became the best thing that had happened in this horrible journey!! The Mtx. did nothing for me by the way and then Leflunamide did nothing either. Over the last few months, my hair has had another fall out, probably due to the Pred. or PMR but it is now not very curly at all and I am sad about that- it is another loss in a whole load of losses this nasty syndrome has resulted in.
None of the options for us is good they all have negatives and it has to be your decision- perhaps it feels too early for you to be OK wth Pred. Losing a lot of teeth is a major loss and you are probably grieving for all that it means. Have you considered counselling for support and to have a safe space to express how you are feeling which is perfectly understandable considering what you have been through?
Hi Jevuki, so sorry that you are in a dark place right now. With this condition it is often a choice between the devil and the deep blue sea. This is the first time I have heard of tooth loss associated with Prednisolone. You are not on the bone density drug Alendronic Acid are you? That's the one they keep pushing at me and I associate with jaw problems etc.
I was depressed before Prednisolone and now think that apart from life events, the relentless pain and fatigue contributed to it. It lifted as soon as Prednisolone kicked in. Reducing now, my fear is it might return but at least I will know where it's coming from so won't feel the guilt.
I have crowns in my front teeth that look better than my old front teeth, even compared to when I was young and beautiful. Horribly expensive but as it was medically induced with you I wonder if the NHS will pay?
I hope things look brighter soon. You've landed in a safe harbour on this website - lots of wisdom.🌹
Thank you no I was not on any other drugs. My top teeth were all bridges and crowns and of course you don't have a solid seal. The dentist and doctor explained that the pred creates dry mouth and that creates decay since your natural saliva is what protects your teeth. Needless to say it broke down rapidly from March to June. The hygienist was in fact tracking my pockets etc all was fine in March when I went in June all hell broke loose.
I can relate to the depression it is awful. Both my doctors were quite upset with the tooth loss and have explained that it is not often but does happen Pred can reduce your bones in particular the Jaw area ):
I am amazed at all the support and valuable advice on this site. I have had PMR now since April this year. It's not easy is it? Lost my husband in a car accident August 2015 and then the PMR appeared out of nowhere. Fortunately I had a good GP and she was on it.
I am now on 10mg of pred. and then reducing by 1mg per month and no its a hard journey 'cos most people have never heard of it. But my reason for writing is to thank all of you as it really, really helps when you're in this illness and there are others who understand.
I'm not in a good place as I am quite depressed, and am seeing my Doc for a review.
So bless you all and my heartfelt thanks for a good healthy (what's left) of this year.
Judy
67gpbzoo,
Saddened to hear your story. PMR often appears, not out of nowhere but out of pain and shock and trauma. It's as if your whole body is howling in anguish. Make it your mission to cosset and look after yourself. Plenty of rest and sleeps, good wholesome food, little manageable treats. Tell yourself the worst has already happened, you're wounded but not dead and you will get through this thing. Onward and upward.
In my experience the pain of a shocking bereavement is almost specific for our symptoms. Bless you and keep in touch about your journey.🌻
Inspiring words thank you! My son keeps saying Mom we are not quitters just focus and push on! I feel like I am in my own army against this beast.
Thank you so much for you very encouraging words and yes the worst has happened and its a day by day situation. I will take your wisdom - thank you and bless you. x
Again I must say how wonderful you people are, the love and support on this forum is amazing. Hugs to all! ❤
DorsetLadyPMRGCAuk volunteer
Just a thought about your teeth. Don't necesarily blame the Pred. I have a friend, slightly older than the majority on here, but with no problem with her teeth until about a month ago when she went for her 6monthly check-up. She was horrified to be told that virtually all her bottom teeth would have to be removed, one done that day. When she questioned why things had happened so suddenly, she was asked if she'd been under any stress recently. Her answer was yes (recently lost her husband) - the dentist said, 'well that's what caused it - stress'.
From your various responses it sounds as if you have been under a lot of stress for at least a year, maybe longer, and that you certainly need some profession help with that
. I know it won't give you your teeth back, but it may help you come to terms with the illness that you have and the way your life has been turned upside down. As PMRpro says, the most difficult thing sometimes is to come to terms with how much your life has changed, but the sooner you are able to do that, with whatever help you need, the sooner you will be in control again. At the moment PMR is controlling you and your thoughts, don't let it. With a little bit of help, you can become strong again - mentally and physically.
I wish you well.
Thank you
jevuki
I was diagnosed with RA and given methotrexate but in truth it was PMR which I have now been diagnosed with. I had a 10 year remission in between. It took about 2 years and the pain lasted about 6 months. At the worst of it I worked from home typing with my pinkies. I didn't lose enough hair to be obvious and it grew back. I encourage you to take the Prednisone which relieves pain and inflammation better than mix. You need to get stress relief too with the work load. No one else can see how badly you feel. I have a friend with full blown RA for many years and this year a serious infection took all her teeth. So sorry for your loss.
Not what you're looking for?
You may also like...
Adrenal testing with PMR
Hello all. Can adrenal tests be done while on Prednisone? I have heard different answers in the...
Walking with PMR
I have PMR and have been taking 15 mg of Prednisone. All was going well for 3 weeks and started...
PMR Relapse with low inflamation tests
About 6 weeks ago, after experiencing more than 3 weeks of early morning stiffness and finally...
Coping with PMR & fatigue
I am 59 years old and was diagnosed with PMR 4 1/2 years ago. My pain started in my lower legs....
73 year old women with PMR
I have been diagnosed with PMR over a year ago. The dr put me on prednisone but suggested I see a...
Related Posts
Living with PMR with no prednisone
Recently diagnosed with PMR
PMR flare or just PMR?
PMRModeration team
Fran_BensonPartner
SophieMBPartner
