Bell's Palsy and PMR | Arthritis Information

I'm about to turn 64 years old and for my birthday I want my smile back.

I've had PMR for over 4 years and I'm finally down to 2mg of pednisone a day. The pain is still evident along with the stiffness, but I'm hopeful I can stay at this new lower dosage. It has been a long haul and this board has been so helpful on my most difficult days.

I was diagnosed with Bell's Palsy two years ago and the treatment given to me was prednisone. I told the doctor I was already on prednisone for my PMR and he prescribed a short taper (starting at a higher dosage) which I did. It didn't seem to help my facial paralysis, but my PMR loved it!

After one year, my left facial paralysis slowly started to improve, but after this second year I still have't regained my normal facial expressions. It has been very difficult because my smile and facial expressions were always so cheerful.

Has anyone on this board had Bell's Palsy and if so, was your PMR affected? I'm wondering how I could get Bell's Palsy when I was already on prednisone for PMR. If anyone has had experience with PMR AND Bell's Palsy please let me know how you did/are doing.

PMR has been bad enough. It was almost impossible to teach my 3rd grade students and I had to retire 2 years early. The fatigue and pain was overwhelming. Now this aparent permanent disruption of facial expression on my left side has me completely at a loss.

Thanks for any advice or thoughts. I appreciate this board and have learned so much from all of you. Hope your holidays are bright and hopeful with good wishes for a Great New Year free of PMR!

Hi Marsha,

The reason you were able to get the Bell's Palsy whilst on pred is because the BP is caused by a viral infection of the trigeminal nerve - one of the nerves which controls the facial muscles - and the pred doesn't stop the infection. The nerve swells because of the infection and gets pinched in a narrow bony tunnel it passes through at one point - much as is the case with carpal tunnel syndrome in the arm and fingers or if you have a slipped disc which traps a nerve in your back. The reason pred is given is to reduce this swelling and try to reduce the damage done to the nerve. The modern recommended treatment actually also includes an anti-viral drug and both the pred and the antiviral should be given within 7 days of the onset of the paralysis. If you had been on a much higher dose of pred at the time maybe the swelling of the nerve wouldn't have been as bad and less damage would have been done but it isn't really possible to know.

Bell's Palsy is, like PMR, what is called "a diagnosis of exclusion", i.e. everything else it might be is considered and when they have been ruled out, you say "in that case it must be...". 85% or so of BP cases resolve within 6 months or so - nerve damage is difficult for the body to repair and if too much damage has been done, I'm afraid the function may never come back properly and it certainly can take a long time. In any case of this sort (arm, back etc), the longer the nerve has been compressed the longer the damage will take to repair. It sounds as if the dose of steroids you were given didn't achieve the desired effect of reducing the swelling and a fair bit of damage was done to it, hence it took a year before any improvement happened.

It must be so discouraging for you having both these chronic ailments affecting you at the same time - you do have my sympathy. However - you could deal with part of it by deciding to accept that you need to take a slightly higher dose of the steroids and feel better with regard to the PMR at least. If you have pain and stiffness the dose for the PMR is not doing its job. I have read your original post and I know you have seen the UK support site - do you also read the PMR forum on the UK patient experience site? We have had long discussions about getting off steroids and have generally come to the conclusion that there is no virtue in trying to get of steroids just for the sake of doing so. Other people have noticed there is a sort of barrier at getting down from 10mg/day and then again at about 3mg. The steroids don't cure the PMR, they manage it, and if you have pain and stiffness it isn't being managed!

Research has been done which shows that the population of patients with PMR can be roughly sub-divided into 3 groups. About 25% will get off steroids within 6 to 12 months but seem to be at risk of a relapse later. Some 50% will be on steroids for about 2 years or so but will eventually get off them and are less likely to have a relapse. The rest may be on steroids for years before getting off them, some may remain on a low dose (5mg or just below) for many years, possibly for the rest of their life. At about 7-10mg the dose is said to be "physiological", i.e. the amount the body would make naturally. Some experts think there is a possibility that in some patients (these ones who need years of a low dose) their HPA axis (this is the hypothalamus, pituitary and adrenal glands all working together to control many things including your thyroid, blood sugar control and so on) isn't working properly so their pred represents a replacement therapy - like thyroxine is used for an underactive thyroid. Some doctors in the north of England have found that patients with fibromyalgia and/or chronic fatigue syndrome respond well to a low dose of thyroxine even though their blood values are apparently normal. PMR may be similar - no-one knows yet.

One thing is certain, though - the doctors who try to tell you that PMR "burns out" after a couple of years are wrong. I have had it for at least 6 years and probably longer - I was also under 50 when it started, another misconception is that you have to be over 55-60. It took more than 5 years of me complaining to doctors that there was something wrong before it got a name - my blood values were never abnormal, but 15mg of pred dealt with a lot of the symptoms in 6 hours! And I am not alone in these experiences as you would see on the UK site.

If you were to return to 5mg a day - would you be pretty much pain-free? If so - why not consider doing that and accept a better quality of life in return for taking the pred at a dose that is unlikely to do harm to you? It may not help the BP - but you would have one less thing making you unhappy. At this level you are unlikely to have many side-effect issues and with regard to osteoporosis, I was told by a consultant rheumatologist in the UK recently that most of the bone density loss occurs in the first 3 months of taking steroids.

Anyway - do have a virtual hug

best wishes,

MrsE

Thank you for your encouragement and words of advice and information. Both my rheumy and my internist said I was 'hammered' with PMR and BP as both maladies have been slow to improve.

Your suggestion to slightly increase my prednisone is a good one and that is what I will do. At least I can manage ONE thing and reduce the stiffness and pain and be more comfortable.

I will look on the site and read the patient experiences with PMR.

I haven't given up hope about my smile, but I realize that realistically I may have my lopsided smile for years to come. I'd better make the best of it and do all I can do to keep it pliable.

I've been to a facial retraining specialist and worked with her for a few months. She said that my facial nerves had taken a different route in healing so that my left side is affected when I try to smile, eat, or speak.

As with all of you, I wonder what triggers PMR or even the virus in Bell's Palsy to invade a person. My doctors have said there is no cause known on what triggers PMR or even why the virus attacks in BP, and they can only treat the symptoms.

I'll try to keep moving forward with a smile, lopsided as it is, and just be happy to be able to continue with my Tai Chi classes. They help my PMR. Thank goodness for prednisone which allows me to continue my activities with reduced pain and stiffness.

Thanks again Mrs. E for the information. It was VERY helpful.

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