Are there others my age (39) and other questions?

Hello sarah8 and welcome although we're sorry you've had to find us following being diagnosed with PMR and at such a young age.

You are right in believing that PMR usually affects older people, generally those aged over 50, although we have had some posters in their late 40's.

Hopefully the diagnosis is correct in your case and that other things such as rheumatoid arthritis have been ruled out via the relevant blood test. Among other conditions that can mimic the pains of PMR are Fibromyalgia and Psoriatic Arthritis and a whole host of other auto immune illnesses.

In the case of PMR, a starting dose of 15 or 20mgs usually provides fast relief (within just a few days) of about 70% of symptoms, and in the absence of a diagnostic test, that response is usually taken as confirmation that the diagnosis is correct. However, it is important not to reduce from the starting dose too soon and then only by a small amount, ie from 15 to 12.5 maximum and some people find they are more successful with just a 1mg reduction. Unfortunately there is no easy, fast route to "stopping the steroids" - PMR will go into remission when it wants to and not when we want it to. A few lucky people will find it goes into remission in 12-18 months, for others 2-3 years, but for many of us it can take a whole lot longer. The steroids are not curing PMR but are purely controlling the underlying inflammation that is causing the symptoms.

Many of us complain about "heart flutters" - in my case I described them as palpitations and they seemed to be particularly troublesome upon reducing my dose.

I do hope this helps to answer some of your queries and reassure you that it will definitely "go away" so that you can "stop taking the steroids", BUT it will help enormously if, in the meantime, you learn to pace yourself and give yourself lots of TLC whilst the steroids are doing their job of controlling the inflammation.

Ask away if you have any other questions as there will always be someone around who can help from their own experiences.

Very best wishes.

I know you'd far rather not be here - but welcome Sarah nevertheless! MrsO has answered some of the questions you are bound to have and if you ask any specific questions someone will answer them to the best of our knowledge and experience.

The youngest person recorded in the literature with PMR is 26 - a young athlete in the USA who presented with the symptoms of PMR and who was tested for everything to no end. Then someone had the idea that it was typical of PMR - so why don't we TRY treating it as PMR. He was given quite a high dose of steroids - and within a few days (literally) he was able to get out of the wheelchair he'd been in for some months and was running again a few days later. Unfortunately most of us don't manage quite such a dramatic recovery! It is unusual in under-50s - but a few years ago you would have been told that it never happens in people under about 60 and we know quite a few who were in their early 50s (I'm one). I believe there are actually quite a few younger patients but they are misdiagnosed with fibromyalgia or chronic fatigue syndrome or even dismissed as being hysterical (i.e. it's all in the mind) or depressed.

Now you have got to 10mg successfully don't reduce in too big steps, the basic rule is not more than 10% of your current dose so at 10mg that is 1mg at a time. By 7mg the steps are better as 1/2mg at a time. I know one group of expert rheumatologists in the UK keeps their patients at 10mg for a year before reducing any further and by doing so find less than 1 in 5 patients experiences a flare - a return of the symptoms because the dose is too low. At the more traditional rate of reduction as recommended in the British Society of Rheumatologists guidelines the risk of a flare is more like 60%. This suggests that a good long stay at that sort of dose DOES do something more than just reduce the inflammation. One thing is certain - rushing doesn't get you off steroids quicker.

The figures in the literature are that about a quarter are able to get off steroids in under 2 years but are more likely to experience a return of their symptoms later. About half take between 2 and 6 years and the other 25% take quite a long time to get down to a very low dose and some never get off steroids altogether. I know this sounds depressing - but look at it as about half of patients getting off steroids in 4 years and 3/4 in 6 years and it feels better! Quite a few doctors still try to tell patients it will be gone in 2 years - and when it isn't they are upset and become depressed, feeling they are failures. Looking at it from a practical point of view, accepting it is there and will, one day, go away, means you have something to look forward to but won't be heartbroken when t takes a bit longer. And you are unlikely to be stuck at 10mg/day for ever. Once you get below 10mg you are in the realms of the amount of steroid your body produces naturally and the side-effects diminish. If you are really careful about diet it is perfectly possible to lose weight - but you have to be honest about what you are eating and drinking!

I, too, had "heart flutters" and they started after the PMR appeared - but that was 5 years before I was offered steroids. I wasn't diagnosed at first as I had no elevated blood markers and was "too young" at 52 they said. So I don't think it is the pred which is what many people have thought and ignored them - it may be associated with the underlying autoimmune disease. This spring I was diagnosed with atrial fibrillation - and the doctors here agree it is probably due to the autoimmune disease having done some damage. So my plea is, if you notice them enough to ask about them, do ask your doctor to check. I had these sensations but they weren't bad enough for me to make a fuss. My BP was checked occasionally - it was always normal but this spring I was told I have obviously had raised BP for some time and now it varies, most of the time normal, but now and again higher. Atrial fibrillation IS more common in patients with autoimmune diseases so it is worth taking it seriously. Found early and treated there isn't much of a longterm risk.

This really wasn't what you wanted for Christmas was it - but never mind, you have now found a whole new group of friends and 2013 will be ever onwards and upwards! If you look at the top of the list of threads under polymyalgia rheumatica you will find a post from the moderator with a link to another PMR forum, much larger and more active than this one. It has a lot of info and we have a lot of laughs about life with PMR. That alone makes life with it easier! The link from the top of this thread isn't working at present but if you click on discussion forums at the top and then click on "My discussions" you will find somewhere where the link to polymyalgia rheumatica is red and works. Or google pmr gca northeast support group forumup - that should give you a link. If I out it here the post will disappear for ages.

Looking forward to hearing from you again,

Eileen

Hi,

Here's the link to the post Eileen mentions with addresses to the NE site

patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

Alan

Thank you so much for your replies. They are really helpful and reassuring and must've taken ages! It certainly seems that there are a lot of knowledgable people out there. It is good to have that link as clearly at 39 years of age, I don't have any friends who can relate. I will go to the forum you mentionned, thanks for recommending it to me.

Hi Sarah - see you over there!

"must've taken ages" - we get loads of practice, don't have to look anything up any more! Shame they don't have dragondictate or something

Have a good weekend

Eileen

HI ... I am 42 and diagnosed with this PMR....YUCK ... so yes there are others under the age of 60 or as most articles are saying 70 years of age. Went to bed one night and awoke on the 23rd of December not even being able to get out of bed....prescribed antibiotics because my sed rate was 44...january 3rd i could no longer take it...went back and sed rate was 69....

Started prednisone ... tomorrow is day 7.... go see my dr and well.......see what's next. I bought a book by julie dalinuk which claims food can help inflammation... I started it.... no processed foods, no white flour, sugar etc.... and pretty much gluten free... I am a single mom and cannot afford to be in so much pain....yikes

And an update on age and PMR: yesterday I was reading a review paper from the 1970s where they mentioned the youngest recorded patient with a diagnosis of PMR was 19 and that in the group of patients they had done some work on they had one of 43 - the overall rate of under-50s is about 4% - and a total of 6 of their 23 were under 60.

I have to say - my experiences with doctors nowadays in the UK is that they are FAR from aware of this figure and I'll be pleased to provide the reference for anyone who'd like to argue with their doctor who is claiming they are too young!!!! We have had people of 67 being told they can't have PMR "because only 80 year olds get it".

When you have PMR you might FEEL as if you are 80...

Eileen

hi new members of the club nobody wants to join ,i wont repeat previous posts far more knowledgeable than me but here are some things i have learnt along the way two years in , rest and be kind to yourself ,steroids have to be your friend not enemy ,whacky cures dont work ,knowledge is power , dont presume drs know all the answers take control yourself , slow reduction is the answer . be prepared for a long haul you wont beat it by rushing ,weight gain will reduce as your steroids go down ,there are a lot of preconceived myths re pmr mainly from drs read the forums and ask questions ,get support from as many sources as you need ,and above all remember this a life changing not a life threatening condition that will burn itself out . keep in touch carolk

tracey4

I'm so sorry that you've found yourself in this 'club' that no-one asked to join, but on the other hand so glad that you've found the forums (see the pinned link to another great forum on the first page here) where you will get so much reassurance as you battle through this illness.

It sounds as though you are doing a great job already of getting control over it with seeking out anti-inflammatory foods - I did exactly the same and it did give at least make me feel that I was controlling IT rather than IT controlling me. It was my experience that although eating as many known anti-inflammatory foods as possible didn't cure me (there is unfortunately no cure at present), it definitely helped to relieve my pain.

Important now to remember not to reduce the steroids too quickly (make sure you have blood tests prior to each reduction), learn to pace yourself (don't go overdoing things on a 'good' day) and give yourself lots of TLC. Very best wishes.

Thanks everyone who responded. I am starting to decrease the dosage now... by one pill for five days then another 5 days later. Doctors instructions....so I am going to give it a shot. Blood tests once per month to check the SED rates.

I'll give it a shot....what else can I do. I'll be sure to make him aware of the pain trust me.

You're right...this isn't where I want to be at all. I am learning to making friends with steriods...I don't want to but I have to, I have a 12 year old who doesn't really get what's going on. There is no face to this, I look the same, I talk the same...so I don't think I need to elaborate as I see there's a lot of us going through this. I just have to embrace it (while shuddering) and learn to live with it. What choice do I have really?

I am optimisitc I won't let it rule me.

Hello sarah.. Im afraid i am only 22 but today i got rejected in blood donation because my blood failed the PRM test.. Im afraid i have this disease.

Im a regular practicioner of taekwondo, judo, boxing, wrestling and jiu jitsu.. I also used to train Mixed Martial arts. And suddenly i stop for almost a month. I thought it was just a regular pain on my torso and lowerback, neck and shoulder.. But it lastly for almos 3weeks. And its hard for me to climb upstair and to move.. After my rejection in blood donation, i haven't proceed yet in the hospital.. Please i need some advice.