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this is , I'm sure not a new topic but I need to know if any new info is out there. I was diagnosed about 4 years ago. I stopped prednisone 1 year ago Feb (I think). I continue to have a good deal of stiffness and pain (esp. in the morning and evening).
I'd just like to know how long this stuff lasts - I'm getting really tired of it and generally depressed. I don't want to go back to pred. if I can help it.

TIA

Jeff

Hi Jeff;

I was diagnosed with GCA/PMR 5+ years ago and only able to stop prednisone for short periods (no more than one month), having to start again due to severe pain.  Like you, I'm just so totally tired of it, and it is getting me down.  Now I have osteoporosis from the prednisone, so that means taking another pill for that.  If I could get by without the prednisone I would definitely.  I'm trying another taper again and hopefully this time I will succeed.  I can put up with some pain, but not to the point where all I can do is sit in a chair all day.  I guess all we can do is hope for an end to all this, but as to when that happens remains to be seen.  Best wishes to you in your quest for pain-free living.
Hi Jeff,

 So sorry to hear you are feeling down . I have no  answer, but when I asked my rheumy to take me off the methotrexate for the 2nd time (last April) , he was very sceptical. He said , much to my chagrine,  that when PMR has been present for more than 4 yrs , it is very unlikely to go into remission.

I immediately  wanted to prove him wrong , of course, but I have been unable or perhaps too scared to lower the prednisone below 2 1/2mgm since ceasing methotrexate.

You may laugh , but it has been a very cold winter in Sydney(no central heating here!) and of course i caught whatever the grand-kids had , and it takes me so long to pick up. Now the pain is minimal , but the fatigue still kicks in.  Seeing rheumy next week.

I am not so bad that I get too down anymore.  I do not work, I have my dalamation( my saviour) and have found fun and laughter doing agility with her.  It is not quite like the triathlons I did prior to PMR, but it is pretty good.

Although the rheumy has not cured(????) me, as I wanted, I have great faith in him, but have used a GP who deals with intergrative medicine at the same time. This GP, manages my hormones naturally, found i had high levels of mercury(now gone), a severe deficiency of iodine and now says I am very low in Vit D.  The above are all managed with blood tests.

I am progressing well, although not cured! Keep searching for answers to your personal health , and find something that makes you laugh, to get the endorphins released.

If you are really down , PMR is probably worse than you think.  Be kind to yourself, it feels like such a long road to better health, talk to your doc.     Zali Hi Jeff and imainfp,
 
I'm sorry to be the bearer of what may be rather depressing information but PMR has a mind of its own. There is no cure for PMR at present and the only solution is basically the use of steroids. They reduce the inflammation which is the causeof the pain and stiffness to a degree where you can live an almost normal life. Although there are doctors who will tell you it burns out in a couple of years it ain't necessarily so!! Sometimes it goes into remission but it may come back.
 
If you had diabetes would you expect that you could reduce your insulin dose and eventually stop taking it altogether? I know this does happen sometimes with extremely overweight people whose pancreas is still making insulin and there is just too much body for the amount of insulin, but generally it's just wishful thinking. If you look back over some of the recent posts on this forum you will see we have discussed the use of steroids. You are on steroids to control the pain and be able to live as near a normal life as possible. Many people are scared of steroids but there are far worse medications out there. You do not become "addicted" to steroids - your body can't do without them after a certain amount of time or dose - but that's different. Your body makes cortisol itself - it's essential to life - and it is under the control of a very complicated feedback system. Because you are taking an artificial steroid the body thinks there's enough there and so the normal production system gets lazy. That's why you have to taper the steroid dose right down low before you can stop taking it altogether or you will become seriously ill. If you are under any stress you also need a bit more.
 
If you try to get off steroids before the PMR has burnt out you will need to go to a higher dose to get it under control again and many people find it is more difficult to reduce later. No-one knows why, it just seems to be so. Certainly, anyone who has had GCA is even more likely to find it difficult to get off steroids and some doctors are of the opinion that someone who has had GCA should be particularly careful about trying to stop taking steroids altogether and may need to remain on a very low dose for many years. Also, if you have PMR you are at an increased risk of developing GCA - and with GCA you must take the steroids unless you want to run the risk of going blind. It is a very real danger and once the damage to your sight has happened nothing will bring it back.
 
What really gets you down is the constant pain - I know all about that as I had had PMR for 5 years before it was even thought of as a diagnosis and I had to get by with pain killers that didn't do much and lifestyle changes. Life with steroids is wonderful - they are a true friend, not an enemy. I have a life.
 
I explained to someone a while back that you have a choice. Yes steroids have side-effects but so do almost all drugs. Narcotic painkillers are addictive, you need more and more as time goes on and they often don't do anything for the pain of PMR and won't do anything at all in GCA. You do run the risk of osteoporosis when taking steroids - but you will also develop osteoporosis if you sit in a chair all day and don't take any exercise. There is medication to help with the osteoporosis. If you keep trying to get off steroids instead of accepting taking a lowish dose over a long period you make the risk of osteoporosis even greater. Once you get down to a dose of about 7mg per day it's thought the side-effects are almost minimal as that is the amount of steroid your body makes anyway. If, on the other hand, you stop taking them and then start again you probably take a higher dose to get the pain under control - it is during this phase that the damage to your bones happens. The majority of bone density loss is in the first year of taking higher dose steroids so if you keep having to start at 15mg or more you are repeating the problem over and over whereas sticking at 5 to 7 mg a day would probably have less effect.
 
You don't say if you are male or female - Jeff, I assume you are male. Men and women tend to be different in how they show the effects of PMR and in how they respond to steroids. I'm sure Rick will be along and psot a reply to you with his experiences.
 
In response to your original question - there are new things in that some doctors are trying using methotrexate with patients who have difficulty getting off steroids. But it too has side-effects, you can't drink alcohol when taking it and you must be monitored very closely for liver damage (hence the no alcohol). It's also a pretty tough medication and some people find it very difficult to take. It isn't usually tried until you have had a couple of recurrences of PMR. It might be worth considering asking your rheumy. You can also find a lot of info on a UK support group site: google pmr gcauk northeast support group and follow the link, look under useful information at the left hand side and you will find articles about steroids and how they work in PMR and also one from someone who has been on MTX for a year. There will also be some medically-approved info appearing sometime in the near future. You will also find guidelines from the rheumatologists association about the diagnosis and treatment of PMR and GCA which you may find helpful.
 
But the bottom line is: steroids are the only way to control PMR at present and they are not as awful as they are painted. The choice is yours - steroids at a high enough dose to control your pain or don't use them, be an invalid and both miserable and unable to do anything. Go and look at earlier posts for more info and there is also a UK site called patient experience UK which has a polymyalgia rheumatica forum with a lot of very good and useful experiences on it. There are several people who post regularly on both and the general opinion has been that the UK has a better handle on PMR than the USA. I don't know why - it's difficult to get good treatment there too. There simply isn't the awareness amongst the medical fraternity and it's not a sexy disease - there is still the misconception that only old people get it. That was part of the reason I was not diagnosed, "too young" they said and my blood values were absolutely normal. There are increasing numbers of younger people, still part of the workforce, who are developing it so maybe things will improve. MrsUK who posts on here was instrumental in getting a charity going in the UK to encourage interest and research so that is a good start.
 
best wishes
 
MrsE
Mrs. E;
So sorry, but I am not as ignorant about PMR and the use of prednisone as your long post seems to indicate.  I was reading this forum long before I became a member, and have also been to the UK site, read your other lengthy posts, and many other sites discussing the subject.  So thanks but no thanks for all your unsolicited redundant information.
Nancy,
Sorry if I offended - but if there is no indication as to how much someone knows then a post like mine is likely to appear. If people ask a question I understand that as soliciting information. It certainly isn't redundant for many.
Nevertheless, good luck with your pmr journey,
MrsE
Nancy,  You sound like a person who gets irritated when someone holds a door open for them.  Take a moment to appreciate someone who's only trying to help.Thanks Bob - much appreciated on my part!
best wishes, MrsE
MrsE, I found your information to be very helpful and enlightening.  After what I went through recently when trying to taper too fast this information would have come in handy then.  I am now doing 1mg at a time and going very slowly with doing the alternate days before going to the next step.
 
I for one appreciate any and all information that is available from the more experienced members here.  This is all new to me and it is definately scary at times.
 
I did find out that my rheumatologist is leaving her practice and is being replaced with another one.  Her replacement looks to be very educated but I will have to wait and see at my next visit how educated he is with PMR.
Russellcat, good luck with a new Rheumy, it is liking stepping out into a new place with someone new.  But they might know a lot and have some bright ideas which we can all share, or not.   But, if I were you - write all you questions down and if possible take somebody with you as you can forget responses and as whoever it is will have a newstyle it could be helpful.   I take a friend with me every time, even though I have been with my Rheumy from the beginning and we even call each other by our first names.

Let us know how you get on and if you get the time, read Ragnar's story under Our Stories on www.pmr-gca-northeast.org.uk.
imainfp

I have been posting on this site for some time now and often I find myself repeating information given previously on different posts.

New people are joining all the time and are generally, lost, anxious and looking for support.

To read a sharp reply to  helpful information, which new people can read as well as old hands,  would have put me off when I first joined as an anxious person who had never used a forum of any kind until I was desperate.

We need to be tolerant with each other, we are all struggling to understand our illness and also to help and support others ploughing the same furrow.  It was lonely until I found other people.

Perhaps MrsE had looked under your heading, where you are listed as newbie and as she was replying to Jeff as well, who is also listed as a newbie thought, like I would have,  Oh they are new I will then give more information.

Now we know you were reading the forum long before you joined - then we will try to remember that information.

I do so hope you will be feeling better soon.

I am pleased you have used the UK site and hoped you found it helpful.
MrsE,
I found your post to be very helpful.

I must say, I don't mind if information is repeated or I read it more than once...sometimes the more I hear something, the better the chances are that it will sink in !
thanks,
freesia
I invariably  learn something new  (unfortunately at someone else's health expense) about this condition  especially  the 4 yr no remission and the relationship of end of steroid use and restarting  and osteoporosis   these are the things  your physician  either doesn't  have time to go over   doesn't want to go over with you  or is just  focused  on a different level of managing your illness  I can't thank  all of the contributing members of this forum and their ongoing education and support      IMAINfp
 
To say I was dumfounded at the tone of your post would be an understatement.
 
Please spare a thought for the new suffers of PMR and/or GCA who may be looking in for the first time and simply seeking reassurance and help.
 
Like you I am a long term sufferer of both PMR (4.5 years) and GCA (3.5 years) but not only do I wish to draw on my experiences to hopefully help new sufferers with their queries, I still welcome all the input from others' experiences whether or not I have read much of it all before.
 
Not only was EileenH drawing on her own personal experiences with PMR but she also is able to bring to the forum and share with us her wealth of scientific knowledge and in the absence of both a known cause and a cure for this debilitating and frustrating disease, I personally feel we are lucky to have her.
 
I do wish you well in your own continuing journey with PMR and GCA.
 
 
Mrs. E
I too am not ignorant about PMR or about prednisone however your response was in its own way helpful t me. I had hoped through my initial inquiry that someone out there had run across a "miracle cure"  - I've just gotten so tired of this disease!! I agree that prednisone (esp. initial doses) made feel like a kid again compared to how I feel now. I still haven't decided to return to prednisone but I'm thinking about it (my family MD made a good pitch for resuming the other day). Anyway rest assured there was nothing you said that offended me in any way.

Thanks
Jeff
Thank you Jeff for that - it was long post but it did deal with your question in the middle, no, there is as yet nothing new for PMR that works. You may have noticed there are an awful lot of things in ads promising magic cures, and we do know there have been several people who have wasted time and money on them. And basically that's how it is at the moment. As I said before unless someone tells the forum how much background knowledge they have you will get a big post - lots of people don't sit and read the back editions so those of us who do post regularly tell you more than you personally may need just in case.
 
There are people doing research - but since the mechanism of the disease remains unclear, the chances of a cure are still remote. If only it were not so - I don't go a bundle on taking steroids either but I do enjoy the quality of life they have given back to me. And what was put into the public domain today - the stuff they try to get us to take for the osteoporosis is associated with a doubling of the risk of esophogeal cancer. Makes steroids look friendly - despite the risk of reduced bone density!!! I'll take the risk of maybe breaking a leg I think.
 
All the very best in your decision-making about steroids. And if you come across anything useeful - let us all know!
MrsE
I wanted to thank you too for taking the time and effort for that response.  Newly diagnosed and eager for information, I will take it in any form.  Repeated, redundant, however.
Thanks

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