Hi All
I posted my story on the end of Leslie's thread, dealing with no dx's yet, menopause and hrt or bhrt. Could it be" Polymyalgia"
I'm curious with all the sides of prednisone and the switch to the methodex many pts seem to make.
Has anybody started with this drug first??
Thanks, Denise
Hello Denise
The reason that Methotrexate isn't prescribed as an initial treatment for PMR is that Prednisolone is the most tried, tested and successful medication for controlling the inflammation that causes the symptoms characteristic of PMR. Methotrexate is more generally prescribed for sufferers of rheumatoid arthritis, and tends only to be added as a steroid-sparing agent when patients have difficulty reducing their steroid dose. Hope that helps to answer your question.
Ut oh, please don't leave yet. Yes I think I understand, the prednisolone, gets the inflammation down and the methotrexate then can be used as a stabilizer for those having difficulty to pred.
I was wondering if there is any other message boards for PMR that are active?? I have so many Q's. I know the forum is not a substitute for professional medical care. However I do know I can trust the picture painted by people living through the experience and accept my situation easier when I'm not alone.
Thank you for responding so quickly, I have a million questions. One would be does exercise exhasberate
PMR?? Has anybody found low carb to be helpful? When I eat a diet very low in grains I tend to feel better across the board, all systems of my body. That maybe the case for me or my body type.
Please excuse my spelling and grammar. I have not been dx'd yet, but this fits.
One more, probably most important, is fatigue a symptom of PMR or a possible side effect of prednisolone?
Thank you, Mrs. O and all.
Hi Denise! Welcome! And don't worry - MrsO and I won't be disappearing any time soon! Well, I hope not anyway! MrsO is one of the people who has got through to the other side of PMR and me - well, not there yet but getting there slowly!
As MrsO has said, methotrexate is a standard RA drug and prevents the joint damage you get with RA but which we don't have luckily. It can also have an effect on the way the body metabolises pred so that in some diseases a smaller dose has the same effect as a larger one if you take both together. There have been some studies done in the past that seemed to suggest this was the case with PMR - the latest thinking in the last couple of years is that it DOESN'T help enough in PMR to make the side-effects worth it. Some rheumys are still keen n using it if they think you are not fitting their ideas of how quickly you can stop pred.
Let's deal with the next lot of questions:
Exercise exacerbates PMR in that if you try to do too much the muscles take much longer to recover afterwards so you feel sore and stiff as if you had gone for a long run or skiing or something without training. It isn't known why, I suspect it is because the tiny blood vessels that supply the muscles are not allowing blood through because of the swelling and inflammation so the metabolic products of exercise stay in the muscles for far longer (basically the lactic acid in exercise story). What you should be able to do is find the amount you CAN do without feeling too bad by starting with a small amount of walking and then building it up very slowly, never pushing it too far. That'll do there for now - except to say, don't EVER let anyone try to persuade you to go to the gym or something on the grounds it will "cure" the PMR. It won't, you'll just feel rubbish afterwards. Everyone is different, some can exercise, some can't. Know yourself!
Low carb - what that WILL help with is avoiding weight gain because of pred. No diets have been found to help 100% with PMR - including as many anti-inflammatory things in your diet as you can probably will help ease symptoms, MrsO is the expert there and she found using certain things did make a noticeable difference as to how she felt though it didn't "cure" the PMR. Gluten-free isn't a definite answer either - I was eating gluten-free when mine started - and using gluten-free foods adds calories and carbs (and cost) in large quantities! I do find that when I eat grains I feel different - but I almost never eat wheat anyway as I'm allergic to something in it.
Fatigue is a symptom of almost all autoimmune illnesses, PMR is the result of an autoimmune disorder. Some people find pred makes them tired, others find it make them hyper. It all depends, everyone is different (that's something you'll hear a lot). Unfortunately, a lot of doctors struggle with that concept, they want us to fit a pattern.
You say you know you can "trust the picture painted by people who have been through the experience" - you will still find some strange and unfounded claims because people will latch on to forums like this if they have an agenda of their own. Others have a bad experience and think it is the same for everyone and try to push their story to the fore. You still need your eyes open and your brain in gear! This forum is usually good because a close eye is kept on it. There is another forum run by the PMR and GCA UK Northeast Support Group which is also very reliable and has a lot of info on it - we are so closely allied to the UK charity that we can't afford to have wibble and it is moderated VERY closely. The national group also hosts a forum - I have no idea how good or bad it is, just it is there. You'll find a few people who are closely involved with all of them.
Ask away if you have any other questions and we'll do our best to answer them. You say you haven't been diagnosed yet - has your doctor also considered vit D deficiency which can also lead to very similar symptoms in some people. It should be checked when making the differential diagnosis - there are several things that appear very similar to PMR which need to be ruled out. The main difference, however, is that a 15mg/day dose of pred will give a lot of relief from the symptoms (not 100% at first but a lot) within 48 hours. Stop the pred after a week and the symptoms come back. The group in Bristol use that as a "test" for simple PMR (i.e. not complicated with something else).
Eileen
I'm sure I remember the moderator telling me we could now post this - if not, the post will disappear for a while and then reappear!).
Here are some links and references:
http://pmrandgca.forumup.co.uk/index.php?mforum=pmrandgca (this is the forum I mentioned)
www.pmr-gca-northeast.org.uk (this is the northeast support site I mentioned with a lot of info, some of which is from medical staff and some from patients with PMR or GCA but all carefully checked for accuracy.
http://www.rcpe.ac.uk/sites/default/files/quick.pdf (this is a paper by the Bristol group which is aimed at GPs to help them diagnose and treat PMR and GCA more confidently and using a scheme that results in fewer flares due to reducing the pred dose too fast or too far, which is the primary cause of flares).
Eileen
I'm sure I remember/understood the moderator telling me we could now post this - however, it seems we can't and the post has disappeared for a while and will then reappear in a day or so!
There are links to the other places at the top of this thread in a pinned post - I was just making it quicker for you. Go to the top of this page where you will see a line in red type starting Discussion forums. Click on Polymyalgia Rheumatica and GCA and that will take you to the index page and one of the first few threads has useful links including the ones I've posted.
The other link was a paper aimed at GPs struggling with PMR diagnosis/treatment. Google
Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis by V Quick and JR Kirwan.
and you can download it and print it - your GP should be grateful! It is aimed at reducing the number of flares by using a slower reduction than many doctors use and by doing this relapses/flares happen in under 20% instead of 60% using the usual schemes. Flares mostly happen because doctors try to reduce the pred dose too fast or too far. If you have a flare you often have to go back to a much higher dose and the next reduction is more difficult - you end up yo-yoing the dose and that is bad for you and the PMR.
Eileen
Thank-you so much Eileen H, I'm so glad that you posted on my thread. It may sound silly I was researching PMR after my GP had mentioned the possibility. I had read some of your posts on another thread (Could it be Polymyalgia started by Leslie). I admired your style, I felt you responded with integrity even though your view may have not been the most popular. I mistakenly posted my "story" thus far with pain and surrounding situation, on that thread.
I did post there that I'm from the other side of the river, I'm a New Yorker. I chose to join your site as I couldn't locate one with recent activity from the states. I know this limits my ability to utilize all the benefits of your site, I hope I can please stay??
You have clearly done your homework. Don't know where, here or the other PMRCGAuk, was an article about connection with bursitis and tendonitis in PMR. I couldn't follow it very well but it did help me to know something important, I may share with my primary. He was leaning towards me having calcific tendonitis (was dx'd by scans) as contributing to my shoulder soreness. In short I was on bio-hrt, (just started again) felt so good and did over do it with arm weight lifting. Plan was wait and see for a month or two.
Another exclusion would be lyme, I was bitten by a tick 6 weeks ago. So embarrassing, after my shower I was checking for moles, I'm high risk, was horrified by the mole on my shoulder, my derm wanted me in asap. Over the weekend my partner said it was a tick. We did safe guard it, but after I identified it as a dog tick I disposed of it. GIANT mistake dog ticks can carry the lyme disease and others. So I will be tested for that as well, wouldn't have thought of it if I didn't read it on here!!
In all fairness to myself, I have witnessed a decline in cognitive ability with menopause. I'm back on bhrt, recently so hopefully my brain will sharpen up again.
Mrs.O Thank you. Most people would leave a group for a malady they have overcome. Thankfully you have not, your journey is so valuable for it carries hope..
Thanks again,
Denise
and thank you to MrsO
Denise - we're not racist here! We don't care WHERE you live - and that is actually part of the point of these sites: they can be used by people who don't live close to a real live support group. The other forum associated with the northeast group has members from all over the world as well as people who live close enough together to meet occasionally. Some of us used to participate in a forum based in the USA but it suddenly came up with malware warnings and most of the people there did manage to get over here! Advice about how to deal with PMR in general crosses borders - how you deal with your medical system is a bit different but the basics are the same, you need a doctor you can trust.
You just mentioned you improved with HRT - that is something your doc maybe should follow up as one cause of PMR-type symptoms can be hormone imbalances during the menopause so it would be wise to check that.
Eileen
Hi Eileen,
Just to clarify - you can post this link https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316 (the sticky) and it will not be reported as it is within site. Posting the NE urls and others directly will still send them for moderation. As you know there will be a delay especially over the weekend before they get approved so an alternative is use the message facility to send urls immediately.
I have added the Bristol url to the sticky post so it is widely available as well. The link you posted above gives page not found so I have replaced it from looking in Google.
Hope this helps.
Alan
Hello again Denise
Yes, I hope to stick around around even though my PMR and GCA have finally gone into remission. Hopefully Eileen is slowly but surely heading that way too and I'm sure she'll also continue to be around after her PMR has taken a hike - we can't do without her! 
Hopefully now that you are back on HRT, you will find that all your aches and pains will disappear - after all you did have a magic resolution when on HRT previously. Good luck.