Contributors' Brief Histories

Hi I'm new to this site and am very excited to find you. Aim a 78 year old female living in Canada and have been frustrated because I have not been able to get any answers from the medical profession at all. In July of last year I started to get spasms in the back of my thuggee - my hamstrings. I would get them a in the evening while watching TV. They were very strong. Later I started to get the same spasms on the outside of my shin mostly when in bed. Then the thigh spasms would occur at any time when I moved my leg laterally or when using one foot to take my shoes off. Sometime later I started to get a lot of pain in my shoulders and had difficulty with my range of motion. After that I could not move in bed at all. During the day the pain would subside but I had no power at all in my thighs and could barely lift my lag enough to get into my car, I also had difficulty getting up or down stairs and getting up from a sitting position. My GP offered no suggestions as to what was the problem. I asked to see a rheumatologist which took 4 months as his office indicated it "was not urgent". When I did see him he ordered more blood tests and suggested I see a hematologist as he suspected I might have lesions on my bones - he had ordered a full body Xray. I had another blood test and eventually the report from the hematologist was OK. Again I waited to hear from the rheumatologist and finally called - saw him he said the only treatment was prednasone which I did not want because of the side effects - cataracts etc. In the meantime things had changed I no longer had the muscular spasms could get up and down with no problems and apart from the pain in my left shoulder felt not too bad my general exhaustion had eased. He said if it my condition was improving it was not PMR, gave me a cortisone snot in my shoulder and said "comeback in three months"! 3 weeks later the spasms seem to be starting again and I am also getting odd little pains in my head and eyes (I am terrified it may be GCA). I know this has been long winded but I am extremely frustrated, I feel no one has listened to the progression of this condition to determine what it might be. Any suggestions would be welcome. By the way I do have an autoimmune disease - I have hypothyroidism.

Thanks

Anne

Hi Anne and welcome to our happy band! I know you'd rather have needed to be here though!

I'm not sure what you want us to say - your rheumy offered a diagnosis and a solution. You rejected it. Prednisone is the only option for managing PMR that is too bad to live with - that is the bald truth I'm afraid. I had PMR for 5 years and managed OK, not brilliantly but it wasn't too bad. Then 5 year ago it hit like a 10 ton truck - without pred I was immobile and couldn't walk more than a few hundred metres, and that in constant pain. Pred was like a miracle.

Did that cortisone shot help? That is often the way PMR is diagnosed - a shot is given for something specific like your shoulder pain and the patient realises it helped other symptoms. PMR is treated with moderate to low dose pred and the side effects are nothing like what they are at a high dose such is needed for GCA to prevent loss of vision. You start at 15mg but reduce to find the lowest dose that controls the symptoms - that varies from person to person but may be well under 10mg. Five years on I'm on 5mg and feel great. I put on weight with one form of pred - I've lost it all with the current version. But the first weight I put on was because of being unable to do anything. And that is also the biggest risk factor for osteoporosis. There are over 80 documented side effects of pred. No one gets them all and many get very few or even none. The only way is to try and see.

Untreated PMR is more likely to progress to GCA - 1 in 6 patients with PMR get it anyway. If you get GCA there is no choice - side effects or not you have to take high dose pred to avoid going blind - and if you go blind, that is it, no going back. If you already have one autoimmune disorder then another is more likely than if you hadn't already got one.

The rheumy is wrong about "if it is getting better it's not PMR" - mine came and went to some extent, it never went away totally but I'd have good periods and bad ones. Weather made a difference and so did how much I had been doing recently. It can even go into remission on its own - all symptoms fade. But they can come back.

You say you are frustrated but it's a bit like the Jew who prayed every Friday to win the lottery. One day he really lost his temper with God and asked why he still hadn't won despite doing everything right. Then he heard a voice: "That's all very well - but until you buy a ticket I can't do anything!"

Your doctor made a suggestion and offered the only solution to that. Until you take the pred you won't know if what you have is pred-responsive polymyalgic syndrome - what we usually call PMR.

Pred may be unpleasant - only you can decide whether what pred does to you is better than what your illness does to you. Pred is NOT the enemy - it may be the way to a relatively pain-free and decent quality of life.

This may sound harsh - but I've told you how it is I'm afraid. The ball is in your court.

Hello Anne and a welcome from me too.

I also am hypothyroid and take 150 mg thyroxine a day.

From 2009 - 2012 I had PMR. It was a day of celebration when I finally weaned myself off steroids and last year I managed to lose the 35lbs I had put on and was thrilled to be back in my clothes.

A few weeks ago, the symptoms returned. I stuck my head in the sand and refused to acknowledge that PMR had hit me again. I was pretty angry and determined not to take Prednisolone again with the consequent (for me) weight gain and possible side effects.

I spent hours researching alternative treatments and was keen to try anti-inflammatories and painkillers. It didn't work and to have anything like a normal life, I had to take steroids. I have just reduced from 20 - 15 mg per day.

For me, the bottom line is living as normal a life as possible and avoiding as much as possible GCA. I m fond of both my eyes!

With PMR, we all end up with a choice between the devil and the deep blue sea and neither is appealing.

Every word Eileen has said should make you think very carefully about which way you jump. Did I want to throw away 3, 4, 5 years of my life? Er . . . . no.

Let us know what you decide to do.

All the best,

Tilly

Thank you ladies. I don't know if I mentioned I was taking large doses of vitamin C. I am a great believer in it. I use it to shorten the length of colds etc. When I wrote on this site I had run out of it and hadn't had any for several days. Since taking it again and actually increasing my dose most of my symptoms have subsided again. I also have found I get relief from the discomfort by taking Tylenol with a muscle relaxant in it. My

Rheumy said Tylenol would not help with the pain of PMR. So I still am not convinced it's what I have. The pain you all are experiencing I only had in the beginning and it lasted for 5 months and was led to believe PMR lasted from 2 to 5 years. That is basically why I am loathe to take prednisone when I am not in pain now. It's more of a discomfort. I will definitely keep following this forum and keep in touch. It's the first time anyone has listened to my concerns. By the way I was reading an article by Linus Pauling and am even more convinced that vitamin C can help!!. Take care

Anne

Anne - the vit C story has been discredited time and again although there is no doubt a placebo effect - and if the article was by Linus Pauling it's certainly somewhat dated! What is being shown is that very high doses of vit C and other so-called wonder substances can actually be associated with developing cancers or various sorts later. The free radical story isn't as simple as it first appeared and they are made because they have a role in fighting cancers - yes they are found alongside cancer, but that's because they are a required part of the defending force.

Your rheumy is quite right in saying tylenol won't do much for PMR pain - so if it does there isn't a problem. It almost certainly isn't pred-responsive PMR. The "PMR lasts 2 to 5 years" bit is misleading. The statement should be "PMR lasts 2 to 5 years IN THE MAJORITY OF CASES" - that doesn't rule out 6 months or 10 years. They are just unusual.

If all I had to deal with was mere discomfort I wouldn't be taking pred either. I was able to manage on not even moderate amoounts of tylenol for 5 years, maybe the odd dose of ibuprofen if there was something special I wanted to do (like spend the morning skiing ;-) ). But when it hit like a ton of bricks, painkillers didn't touch it. Pred banished it.

Thanks Eileen, I know Pauling's findings were discounted but I have read more recent studies saying they might have had some validity. I find it helps with colds etc. I am glad to hear you went for some time without prednisone. I don't have to jump out of bed and start running immediately so I can take my time and within half an hour I am fine. I find it discouraging that there are no answers as to the causes that might contribute to this disease considering how many older people seem to get it. I guess it's easy to just administer prednisone and send them on their way. I am also concerned when told if I don't take prednisone I will most likely get GCA. (not by a medical person by the way) That is my greatest concern and that's what I want an answer to. I have also observed that where I get my pain is in areas I have had sports injuries etc. In the past. One other thought was several years ago I took part in a clinical trial to see if botox injections could help with chronic neck pain (I had a shoulder injury from tennis). It was quite successful and the pain stopped for long enough for the injury to repair itself. Anyway thanks for listening - I think my family is fed up with me trying to analyze what is going on with me.

Anne

I don't think it is a case of "most likely get GCA" - it is a case of the inflammation MIGHT/COULD/CAN increase and MAYBE get to the temporal artery. And it seems to happen more often - but that is in a population that already has the precursor to GCA.

Actually, the criterion for PMR is morning stiffness lasting more than 3/4 hour - so you are possibly borderline anyway. I was fine for that first 5 years other than it cramping my style, but it eventually hit like a ton of bricks. When that happens there isn't a lot of choice - I still had 6 months with no pred!

That said - some people with PMR and taking pred still develop GCA - the PMR dose isn't enough to protect you entirely. There is no way to predict who will or will not progress. So if you manage without any pred and then develop GCA you are at an advantage in many ways as you have not already accumulated a lot of pred effect. What is important is to be aware of the signs and symptoms and go to the doctor immediately if anything suspicious turns up.

We all need to analyse what our bodies are being tortured with - and the only people who can really empathise are the ones in the same shoes, wearing the same t-shirt. Shout, rant and analyse here all you need to. If it isn't convenient - we won't reply!!

5 months ago started prednisone after my first visit to a rheumatoligist.  I had a cortisone shot in my arthritic knee plus pills to see if I had PMR, and I felt 100 percent better.  But time has passed and I'm down to 10mg a day, and this past week have been feeling terrible pain in neck, shoulders, hips, legs, not especially my knee.  I have long history of depression and fibromyalgia and probably had PMR at least for 2 years.  I take hydocodon for pain and it doesn't work well anymore, but if I go without it, I'm too stiff with pain to move.  I'm in Reno, the USA, but like your forum and want to join!

I am a 79 year old lady. I have always had swollen feet, incompetant valves. Now got PMR. Need information as there seems to be so many different views about Steroids, also the doctor seem to be bothered about my getting GCA. Its is only from this support group and this site i learned anything.

hello I am yvonne age 65yrs.

I have PMR,Psoriotic Arthritis.The AS gene HLA B27 I have a damaged spine which the gene has lined it in one area with geode material making the hole narrower squeezing my spinal chord. very painful.and lumps of the same material ar on my spine and hips.

these problems started 10 years ago with lethargy tiredness pain ,increasing over time in my spine hips arms shoulders and sacroilliac.

I had a heavy job a small farm we own lifting working with animals.was very fit and strong.

Thought at first after a couple of accidents that i had disc problems,but then fatigue sweating discomfort sitting. steadily got worse.

One of my sisters had been diagnosed with poly after 5 years in pain and depression.compared notes over a 2 year period and found more symptoms compared.eventually was in a lot of pain muscle loss on my bottom trouble sitting constant back pain.Shock of a personal nature  made this flare to the extreem.

I was diagnosed with the first two but asked for the gene test as my sister had poly too and was told it didnt run in families unless you had the gene.

Upset to find i have the gene which affects up to 50 per cent of siblings and can affect my children too. cant get rid of this poly now and its affecting my immune system. have bbeen on steroids.5 months of those gave me cataracts and my teeth are crumbling. they were not enough to take away the pain and had morphine patches and ibuprophen too.and amytriptylene to help the muscles relax on a night.Tried steroid injections instead to lessen the effects but my body got used to them till they had no effect.tried metjhetrexate for a bit this helped the arthritis but my body reacts badly after a while reacts like an allergy. can use again for short periods.every muscle is affected by this pmr and the only thing that helps if really bad is heat.

When the injections stopped working it was agony but was given information about LDN> low dose naltrexone.its been a boon to me it doesnt take all the pain but helps a lot.its not on the nhs but should be. i now take 4 mils on a morning. and sometimes 2 or 3 mils 12 hrs later as my body now trying to avoid this too. it has no side effects but its effectiveness is reduced when on steroids.

Until i wake i dont know how my day will be so one day at a time. though my immune system refuses to do anything when i have an infection its now recognised so i take stronger antibiotics and steroids if my chest is affected. I now have asthma because of these infections.I now also have been told i may have copd and there are noddules in my lungs.these are being checked soon for growth. if they dont grow am ok if they do i may need biopsy for cancer.

Not a good list but i still keep up my hopes but do get frustrated as i cant make plans for long as i may be having a bad day or two. please if you have had poly a long time get checked for the gene.

my body now if it has a bad infection goes into mild shock and lowers my blood

pressure. caused me to nearly pass out.so now may need emergency button or bracelet. hope this gives incite to others x Keep fighting  Yvonne