PMR / CRA assesment

[hedgehog8]

I have had complete blood work up relative to a PMR ~ ESR 61 2-30mm/hr; LO Hemoglobin, Hematocrit, RBC, Albumin ~ HI Neutrophils, Leukocyte Esterase, Alpha 1 Globulin. Rest of flags ok. There must be food, exercise to bring these in line without use of steroids

[DorsetLady PMRGCAuk volunteer]

Hi hedgehog8,

Many refuse steroids at the beginning of their journey, but find that after trying other methods of controlling the symptoms, have to eventually admit defeat and go down the route of Pred

I appreciate you do not want to take Pred - who does? Who wants to take any medication? But sometimes you have to.

If you don't take Pred, then left untreated your PMR will probably get worse before it gets better. Most people go into remission when the underlying PMR goes away, but not always.

There have been posts about natural remedies before, and I guess some people may get through without steroids, maybe through choice or mis-diagnosis or maybe a milder form of PMR. However I doubt many are on this forum, they probably see no need for it.

However, there are people on here who were virtually bed bound before diagnosis for many months, even years, and Pred has turned their lives around, given them back the ability to enjoy it almost pain free.

I'm sure in days gone by many people got through PMR because it wasn't diagnosed, but what quality of life they had we'll probably never know.

If it doesn't go into remission then your blood vessels are likely to become more compromised by the offending cells in their walls making it more difficult for the blood to flow around your body bringing the necessary oxygen, energy et al to your muscles. Also you may be more liable for it to morph into GCA (not a given, but certainly a possibility). The blood vessels affected then are the major ones in your torso, and those in your head. In your torso it can/may lead to aneurysms, strokes, heart attacks; in your head it may lead to partial or full blindness. Would you refuse a tried and tested medication that stopped you having a heart attack or stroke? Would you refuse a tablet that stopped to possibility of blindness?

As I had GCA maybe my views are slightly more biased towards Pred than others. Taking them can be scary, but they have given many people their lives back after being virtually bedridden pre diagnosis, and for many others with the more serious partner in crime - GCA - have saved sight.

As I said, I am biased, but, unfortunately, I do have the t-shirt to back up my opinions!

I had undiagnosed PMR/GCA for 18 months, tried all the painkillers, both OTC and prescribed, physio exercises, steroid injections in shoulders to no effect, eventually after having a blurriness for 4 days and losing sight in right eye.

On diagnosis in hospital A&E was told that there was a 50/50 chance I could lose sight in remaining eye. I took that first dose of Pred as fast as I could! Plus I had to wait another 2 weeks before it could be confirmed that my other eye was okay. The longest and scariest 2 weeks of my life. I wouldn't want anyone to go through that!

I don't intend to scare, but I do say, think very carefully before you reject Pred.

Me- GCA 5.5yrs. Remission 1.5yrs

[PMRpro Ambassador]

You have inflammation - and obviously the doctor thinks PMR. If so, there is only a limited amount you can do with diet - you can help the pred and possibly manage with a slightly lower dose but that is all.

I had PMR for 5 years before I got given pred - and I assure you, nothing would induce me to go back there. On a low dose of pred I have a good life and have no side effects. What's not to like? Don't believe the claims PMR burns out in 2 years - it does for less than 20% of patients. Half need pred to manage symptoms for 4 to 6 years. Some of us, I am one, need it for longer. I've had PMR for 13 years.

You say "surely there is exercise" - if you can still exercise with PMR it can't be as bad as some people have. But it doesn't mean it won't get worse. Nor does it mean you won't develop GCA - and if you refuse pred then, you're a braver man than I am Gunga Din! Or maybe brave is the wrong word...

None of us want to take pred - but it allows us a decent quality of life. And obviously yours is affected - or you wouldn't have gone to the doctor.

[hedgehog8 in reply to PMRpro]

With the elevated levels I have ( previous post) from complete blood test ( 9 vile) ordered by rheumatologist ~ treatment to be determined, I feel it prudent to try and bring the "elevated levels" back normal where possible & to avoid the prednisone where possible ~ seems like everyone on this site is either on pred's or isn't ~ there has to be other medications to mitigate PMR ~ with less side effects Some of doses of pred's are very high ~ there are other corticosteroids in the same family less invasive

[PMRpro Ambassador in reply to hedgehog8]

"there has to be other medications to mitigate PMR ~ with less side effects Some of doses of pred's are very high ~ there are other corticosteroids in the same family less invasive"

There is a good reason why we are all on pred - no other medication manages PMR besides corticosteroids - except possibly a new biologic, tocilizumab, which will work but which costs £12,000 per year and has a few potentially life-threatening adverse effects. It is not yet approved for PMR, only for GCA.

All corticosteroids are corticosteroids with exactly the same potential side effects. Some are worse. In fact, new work has shown that the side effects of pred in PMR are actually not that bad:

practicalpainmanagement.com...

and pred has been in use for nearly 70 years - there is very little that isn't known about it, which makes it safer than many other drugs. Most of its side effects can be managed or avoided when you know how and many of us have no side effects worth mentioning. Anyway - unmanaged PMR can result in weight gain, depression, osteoporosis due to reduced mobility and disability so severe that the patient is housebound. I'll accept pred any day - and I know what I am talking about as I had 5 years faced with managing the pain and disability myself without pred.

The high doses of pred you see are being used for GCA - a more serious level of PMR which threatens your sight if you develop it. Without reducing the inflammation quickly, patients may go irreversibly blind. There is no side effect of pred that is worse than that and pred is the only drug that is known to work reliably - tocilizumab MIGHT but it would be unethical to try it on its own so it is used together with pred to allow much faster reduction of the pred dose. But it too has side effects and there are a few people on the forums who have had to stop taking it.

Most people who say they will "beat this without steroids" change their minds within a few months. It isn't that easy - would that it were.