PMR misunderstood by the medical community

[Sumo88]

If you google PMR you will get things like "morning stiffness" and "ashiness". You will seldom find "totally disabling and crippling" or "can show up anyplace in your body without warning". It is very frustrating that doctors are not up to speed on this devastating, life altering disease, or know that it is linked to the HLA-B27 gene in almost all cases. That gene is responsible for many chronic inflammatory auto immune conditions, and should be tested for immediately when symptoms show. I have been prone in bed, on fire without prednisone, totally incapacitated to the point of tears with the pain. So, know that it can affect every inch of your body, sometimes all at once, and resign yourself to prednisone as the solution. The really tough thing is when you taper taper taper, hoping that you are in remission, and the pain comes back, but you don't know whether it is the disease or your body withdrawing from the steroid. It is an insidious disease. Right now my achilles tendon, feet, knees and thighs are hurting because I did not take enough of the prednisone. I have also had my hands ache. Be aware that a large percentage of PMR sufferers also get GCA, which can lead to blindness if not treated quick. The HLA-B27 gene can also cause several other severe conditions (google the gene) that your doctor should be aware of. In fairness, docs have a lot to keep up with these days, so don't be shy about printing off your findings and presenting them to your doctor.

[PMRpro Ambassador]

"That gene is responsible for many chronic inflammatory auto immune conditions"

Which means it isn't specific enough to be worth it surely - the symptoms are enough to tell a decent doctor you have an inflammatory autoimmune disorder. In fact, it is more associated with the spondyloarthropathies than with PMR and other tests are of far more significance.

The symptoms you find listed in the literature are those that are used as criteria for inclusion in research/studies on PMR. Not the entire range of the symptoms the patients experience - all of us are different and some have one set of symptoms and others have another.

I don't know where you got your info from, but only about 1 in 6 of patients with PMR symptoms progress to develop GCA and many patients with GCA never have any PMR symptoms.

[Chrissy1953]

Wow ! Heavy read. Never heard of this gene and too scared to Google it to find out what other "severe conditions" I might have

[ConventCassie in reply to Chrissy1953]

My first & only thought.

[SnazzyD in reply to Chrissy1953]

It’s a fine line between being informed and scaring yourself silly. There will be a gene for everything, we just don’t know what they are. I’ve got the BRCA2 gene for cancer and I see people heaving a sigh of relief that they don’t have it as if it makes them cancer proof. There are probably 100’s of cancer genes that haven’t been given a title so nobody is scared until a scientist gives it a name. All of us could have at any time something awful brewing but it is pointless worrying beyond giving yourself excellent self care and knowing you are alive today.

[granny-b in reply to SnazzyD]

If you watched the 'obesity' programme yesterday they have found a gene that makes you more prone to being overweight. Between the genes the hormones and the immune system I want to play swapsy with them. Anyone want to play.... ?

I don't want to be rude to those research scientists who can find cures (anagram of curse, eg steroids) and further insights into the terrible diseases. I can't keep up with all the reading that appear to propose a benefit that turns out to be a study based on a very small number of cases.

[Mstiles in reply to SnazzyD]

So true Snazzy D! A particular problem for those of us with “the worry gene”. My rule was never to look at scary pictures of diseases or read about symptoms, which I would immediately use to diagnose myself, that is until I got PMR/GCA and had to do some research.

[SnazzyD in reply to Mstiles]

while I was going through cancer stuff I realised I would go mad if I dwelled on other people’s scare stories and listened to the Dr’s pessimism. So I just trod my path and just told myself that this is me and that I would not assume I would be like others I saw or heard about. I decided that if I had the luxury of worrying, then the worst wasn’t happening yet. I’m trying to do the same with this too.

[Mstiles in reply to SnazzyD]

Sounds very wise, must have helped your healing for sure.

[SnazzyD in reply to Mstiles]

It has not been easy; lots of crying and feeling sorry for myself st times! It hasn’t been easy going from Superwoman with flowing cape at 54 to having well and truly lost my phone box and the ability to fly. Well, I never could, I just thought I could.

[granny-b in reply to SnazzyD]

Hope your cape and phone box are just the back of your cupboard. xxx

I am sure many like me are relieved to know that feeling sorry for yourself and crying happens to others. So often you feel everyone else 'is strong and brave' and 'fights'.

I am amazingly lucky with my nhs care and family support but sometimes...