Collarbone pain/inflammation - part of PMR or not?

Thanks Eileen. You are a wealth of information. Turmeric was mentioned to me & I tried it (pills) & found it gave me a horrible upset stomach. Do most people with PMR have flare ups many times or by taking pred does that pretty much eliminate them. Can the flare ups be caused by stress?

Yes - I believe that is one common side effect of turmeric. MrsO uses it to cook, not the pills.

The most common cause of a flare in both PMR and GCA is trying to reduce the pred too far or too fast - even the top experts admit that in the medical literature. Unfortunately, a lot of doctors think you can reduce the pred dose in PMR the same way you do in other illnesses where pred is used, according to a strict timetable. The strict timetable is used to reduce the pred dose without causing problem by simply stopping the pred - that can make the patient very ill. In PMR the pred is the only thing that is controlling the symptoms of an underlying autoimmune illness - and that can get worse or, if you are lucky, improve and become less active. That means the amount of pred you need may INCREASE as well as decrease - and you have to work on how the patient is clinically rather than a set scheme. In some patients not even the blood tests will match how they feel, they often lag behind.

There are two basic reasons for your PMR symptoms getting worse: you can be at a dose that was fine and then try to reduce too much or you can be at a dose that is fine and the underlying autoimmune disorder becomes more active and makes the symptoms worse so they are no longer controlled by the dose youa re on.

Doing too much physically or mentally can cause that - trying to spring clean, do something without resting enough, or dealing with a stressful event can all do it. And when you reduce, whatever sort of scheme you use you need to avoid "big events"! The scheme I gave is a way of making it easier to get round that - the body isn't having to adjust to too many things at one. As I say, mine is just one of a few very similar versions, one of which is being used very successfully by a consultant in the north of England. Nothing is suggested here by me or MrsO and a few others without either us having been there, done it and got the t-shirt or it having been run past a medic.

Hello Dinah and EileenH, funny you should mention pain in the collarbone but I also have had discomfort around the collarbone from time to time. I have not had it it a long time I am now 18 months with PMR and am ttaking 2mg (for the time been) pred per day. I will take Eileen's advice (thank you) to reduce meds because finding it very hard to get down to 1mg but am happy with the 2mg. I can function but am still in constant mild burning pain. I am still continuing the gluten free and dairy free diet 90 percent of the time and I feel I would be worse if I didn't do this as these foods are inflammatory. Its rare for a 47 year old to get this but I'm proof that it does happen.

Keep positive everyone its tough but we can get through it. x

Jackie - if I were on 2mg I would happily not even think of reducing! It's such a low dose there will be few long term consequences.

You're doing not bad though!

Thanks Eileen for the encouragement, I really appreciate it. The rheumi wants me off the preds asap but my body keeps resisting, so will continue doing what I'm doing. Have started a well being class and it includes some tai chi and mindfullness of breathing which all works towards an holistic approach to dis-ease which we are out of sorts with our bodies and not ourselves.

I am 22 years old and barely started feeling this pain on my right collarbone. I have no idea whether to be nervousabout my health or it's simply fine. It literally feels like it's burning but nothing is visible. Can you please help.

hello PMR survivors

I AM SIX MONTHS OFF THE Pred. I was on it for a year and a half. I tried reducing twice before my body tolerated it.

the collar bone pain is recurring now. I had noticed the swelling before I had any pain symptoms initially. I had no pain with the swelling until after I was on the prednisone. then I would get the aching but my left shoulder joint was much more effected when I was ill. I had it xrayed and the tech was pointing out how clearly the collarbone was much higher on the medial left but the reading came back normal so I am just living with it for now. I really dont want to go bk on the Pred.

in reading through all the comments I see its more common than not. this is the first time I posted anything online but feel SO discouraged with this shoukder stuff. I worried I was having a flareup but although I have serious bilateral shoulder pain, I am not having stiffness like before. also its isolated to my neck and shoulders and so far isnt worsening.

Thank you all for sharing your experiences. by the way, i have seen big improvment by eating gluten free and avoiding refined sugar. i also notice a significant difference when i take the tumeric and do daily gentle stretching called yinyoga.