I need encouragement...

Gaenor, so true.  But it is a hard row to hoe.  I'm doing all I can to find ways to help lessen the underlying inflammation but I do fully expect to be on a hopefully low dose of pred for some time.  The risks associated with vascular disease are just too great to play around.  Were it not for those, I think I would actually be willing to put up with some degree of disability from PMR.

God love you! I feel that I have nothing to complain about now. 

So this is hereditary? Is it

I think there does appear to be a genetic component in some cases.  But as you know, we really have no clue what the root cause of PMR is.  I would not be surprised if there turn out to be a number of possible causes, which would go some way to explaining why we all seem to react differently to the medication, recover or relapse in idiosyncratic ways, some develop GCA, others don't....  It really does not look like the same disease in all of us, the only common denominator is the presence of a certain type of pain that responds to prednisone!  And like Gaenor I'm aware of family history of vascular attacks that could be genetic.  If by treating PMR successfully we can avoid or defer such illness in ourselves, well then....  There is a young man who has apparently got GCA posting these days and it looks like his illness has been triggered by chemical exposure.

No, not hereditary on the correct sense of the word, that it is handed on from parent to child through their specific genes. There does appear to be a genetic component in that it is more common amongst communities who have a Scandinavian heritage. And that means it may appear a few times in one family as they have a common gene pool heritage.  But as Anhaga says, there is no real evidence to suggest any one particular cause - a whole range of things in combination overload the immune system and it eventually malfunctions, turning on the body as if it were a foreign body. I think of autoimmune disorders as being a long shelf of symptoms and what label you are given tended to depend on which set of symptoms you displayed that a doctor recognised as being similar in different patients - and often gave it their name for posterity. These days, with far better technology, it is possible to identify specific antibodies that form or see histology (what the cells/tissues look like) that mean you can give it a more scientific name that indicates where the problem might be - but that still doesn't mean you know HOW it happened.

The young man Anhaga mentions has something that looks very much like GCA - but it could be something else and even though he worked in chemical engineering it doesn't mean that was what triggered whatever it is. It will be interesting to know what it turns out to be in his case. Whatever the trigger, that isn't the point at which you can attack to find a cure - it is knowing the actual activity in the immune system, and that is far more difficult.

Eileen, is there evidence that more people are actually suffering from mysterious autoimmune disorders these days or are we observing the results of better diagnosis and longer lifespan?  If there is an actual increase in numbers it could point to an environmental factor.

I don't know - I think it is a bit of everything to be honest. I think there IS more autoimmune disease - not necessarily mysterious in that MS and Type 1 diabetes appear to be on the increase. Environment per se could do it - not necessarily one particular thing either. And if it were environmental you'd expect to see bigger clusters. You do get clusters but there has been no fixed thing you can point to. Though it has always been known that low-lying damp marshy areas were associated with more rheumatic symptoms.

And improved training means that there is more suspicion - not that you'd believe it sometimes I know.  But 50 or 60 years ago there were plenty of people with probable PMR but they didn't go to the doctor so much - "It's me rheumaticks..." and they knew there was no cure. They got up in the morning and slowly got going - and they didn't sit around so much during the day in their jobs so they were probably permanently slightly stiff. 

"but I don't think it will kill you"

For a long time very little was mentioned on the forums about the really serious aspects of PMR and GCA because it was felt to be a bit heavy for newly arrived members. For me, though, the question remains - how DO you then introduce that side of things? If you don't talk about what CAN happen then the need to use pred and accept that aspects such as weight gain and hair loss are fairly unimportant means that some people think it is OK to ride out the pain compared to that. 

If you have GCA - and let's be clear about it, many of us with "only" PMR actually do have GCA that is affecting the arteries in the trunk but not so much in their head - you are at risk. Chronically inflamed arteries become damaged, leading to an increased risk not only of generalised vascular damage but also increases the risk of stroke. That is over and above the risk of blindness in untreated cranial GCA. And that is blindness that is irrreversible - there is no operation or treatment that can restore it. Unlike hair loss where scarves and wigs hide a lot, weight gain that can be helped a lot by cutting processed carbs and lots of discipline, or cataracts which CAN be dealt with. I've often said - I'd welcome cataracts but there is no sign of them after 6 years on pred! The thought of only needing glases to read instead of from getting out of bed until getting back in is very attractive!

Looking back along this thread - I think the encouragement is clear: take pred, you'll have a far better quality of life. There are downsides but they are really immaterial in the great scheme of things.

Interesting and informative post.

However!  "I'd welcome cataracts"?😏. Whatever for?  I've had two on both eyes, certainly wouldn't want any more.  Am I missing something?

I have worn specs since I was 7 years old, I should have had them far sooner. I'm very shortsighted and can't do anything without them on my nose, I don't even like going to the bathroom in the morning without them! I used to wear contacts - PMR put a stop to that. When you have cataracts removed they are replaced with an artificial lens and you can choose whether you want to be able to see close or at distance and that means you only need specs for one or the other - distance lenses would mean I only needed specs for reading/the computer. What bliss!

You can't, by the way, develop two cataracts in the same eye - once the cloudy lens has been replaced with an artificial one all that can happen is this:

" At most, what may happen within months to years after having cataract surgery, is the formation of cell growth across the posterior capsule that sits behind the new lens implant.  This can cause some haze to the vision but is easily treatable by a less than 1 minute YAG laser treatment. The vision then sharpens back up within a short time."

Ooooops!  Of  course - I meant laser treatment!  Can't help being thick.  Sorry!

That's not thick - that's PMR and pred...

What a very positive thing PMR is! 🤔. We can blame everything on brain fog!

I didn't know cataracts could come back after being removed. Is that due to the prednisone? I am scheduled to have mine operated on next month (January). Right now my vision is very blurry and I can't drive which just adds to my depression.

While I wrote the above Eileen answered my question. Thanks.

Thank you everyone for the advice. Eileen, you seem very knowledgeable about PMR and GCA are you a Doctor?  

I have never been totally out of pain since I was diagnosed.  I was started on  20mg many months ago. I was down to 1mg for a couple of weeks and did talk to my Rheumy about quitting and she agreed. What should I do now? 

I have another question... I have used ibuprofen to help with the pain and it

does work a bit. Does that mean I may have been misdiagnosed? I have

constant pain in my neck, shoulders, hips, thighs, and knees. Can hardly get up from a sitting position. Oh, one more thing... I also have Palindromic Rheumatism.  I would really like everyone's opinion. I guess I am wishful thinking that I don't have PMR. 

 

Wow - from 20mg to 1 in a few months?  Not bad going!  I have never been completely out of pain for 4 years (except for the odd day or two).

Are you very young (for this illness I mean)!

If you reacted quickly to Pred (i.e. within a couple of days), then you probably do have PMR, especially as you still have all the pain, etc.  PMR is usually a long winded illness and to be over it in just a few months would be very unusual.

Eileen is not a doctor, but she is our 'expert', what she doesn't know about PMR isn't worth knowing.  She will no doubt be along shortly.

Best wishes, and Good Luck.

Constance

No, not a doctor. I do have a medical science background so most of the tests and the physiology is familiar to me and I've worked with one of the PMRGCA support groups in the UK for over 6 years so have heard the stories of hundreds of PMR and GCA patients as well as having had PMR myself for nearly 11 years! 

Some people do find that ibuprofen helps a bit - it is an NSAID, a non-steroidal antiinflammatory so it will have some effect on the inflammation. I suppose it depends how bad it is as to how much relief you get with it.

It is possible it could be due to palindromic rheumatism and that your medication for that needs adjusting - but if it responds well to pred then you need some pred to relieve it. The description you give sounds like PMR, you were diagnosed with PMR before, pred worked - so the chances would appear to be you have PMR. It never really goes away, it may go into remission for some time, sometimes it appears to go into remission for good. But it rarely does so in a year or so, to reduce from 20mg to 1mg as fast as you did is very unusual, it may happen while the underlying autoimmne cause is relatively quiet - but those who do so in under a couple of years are more likely to have a relapse at some point. Many people get to 1 or 2mg or even get off pred altogether for a short time, even after years on pred, only to have the symptoms return within months. About a quarter of people manage to get off pred in 2 years or less, about half need up to 4 to 6 years and the rest even longer. 

All of us would indulge in a bit of wishful thinking that what we have isn't PMR - the reality is that it is most likely that is what we have. If it responds to pred and you can get to a reasonably low dose then you can have your life back. I wouldn't go back to no pred - I'd lose far too much.

I should clarify, that my Rheumy wants me off the Pred. It was not my idea to get off until I was down to 1mg.

I was diagnosed by my 1st Rheumy and he failed to tell me how long I could have this. He basically said that if it helps right away then that is the test that tells you that you have PMR. So I went blissfully off thinking that when I was done with my Pred I would not have PMR anymore. It wasn't till I found this wonderful forum that I am actually getting answers to my questions.

You especially are a God Send! With all your knowledge.

I will contact my Dr. and get back on the Pred. 😢

Don't despair, Terri - ALL Rheumies want us off Pred.  They are so afraid of it that it makes me wonder what they would do if ever they contracted PMR!

Some have to stay on low doses of Pred for the rest of their lives - how do they deal with that one?

my GP would also like me off pred. But she's realistic and understands the balance between needing it to manage the pmr symptoms, the long and short term side effects, and the potential difficulty of withdrawing from it. The advice to reduce is more encouragement than coercion.

I recall trying to reduce a bit around 12mg but always putting it off to tomorrow. In the end I "just did it" after realising I was reluctant but not quite understanding why. I don't usually have that sort of problem.

It may not be addictive but I certainly recognised some dependence on it, though I didn't suffer withdrawal symptoms.

I take my GP's advice as the medical version of the Pirates' Code of Conduct that be guidelines more than rules! More of a reminder to reduce in case I'd forgotten.

As Constance says - most rheumies want us off the pred, they are terrified of it! The reality is that IF it is PMR, IF the underlying autoimmune cause is still active - then you will need a certain amount of pred to manage the symptoms UNTIL it burns out, sooner or later. And frankly, it has a nasty habit of being later.

If all they are prepared to do is give a few doses of pred to see if it is PMR - a not entirely accurate means of making the decision but at least it shows if a moderate dose of pred would make you feel better - but then tell you you have to stop taking it then they might as well not bother in the first place! If you are able to reduce to under 10mg then you are in the realms of the amount of corticosteroid the body makes anyway - and many people take that much every day of life for life because what they have requires it. If you go about it in the right way, getting to 10mg and below isn't impossible - but if you go at it like a bull in a chinashop it won't work. I can take a small dose of pred and have a life, I can look after myself. Without pred I - like many others - struggled to even toilet myself. But I suspect that most doctors don't understand that is the sort of limitation we face.