toughing it out in Arizona | Arthritis Information

Hi all,
I'm new here, thought I'd tell you a bit about my experiences with pmr.
I first got pmr 15 years ago when I was 48. It was never diagnosed as such but it hit overnight and took about a year to go away, untreated. I have since dreaded a recurrence as it was the most painful thing I'd experienced.
Well, a couple of months ago it hit again. My doctor is rather clueless, thinks it's just osteo.
My sed rate is normal but my crp is 39.
Anyway, I don't have health insurance, so I'm planning to tough it out again with just his prescription of diclofenac (which helps a bit), and maybe a little tylenol to help me make it through the night.
The pain is bad, but bearable, I'm most concerned about GCA but so far no symptoms of that.
By the way, last time I had it a friend let me have a few tablets of prednisone and the symptoms went away almost instantly. However, I don't like the sound of the side effects, and the trouble weaning off the stuff.
I'm also taking a lot of fish oil and herbs (ginger, tumeric, etc.)

tom, well, you are more brave than me.............seems to me a small amount of pred. would help you and prob. would have no side effects. pmr has left me mostly also. just enough left to remind me at times of its power. i too take lots of fish oil, once in a while a naproxen for complaining hip. i walk lots every day. am firm believer, it has helped with my circulation to just walk this stuff out. does not make sense, but as this stuff comes and goes and maybe comes again., it makes as much sense as anything.

thankyou for writing, i think each persons story is important to the rest of us, to adjust to our pmr story and try to live through it.

Get a new doctor!! You need someone who is "up to speed" with this disease. If he isn't a rheumatologist, then find a rheumatologist.

Until I started taking prednisone I was in agony; a lot of the agony was mental because I didn't know what was wrong with my body. I was hoping there would be a natural cure, like the anti-inflammatory diet, fish oil, etc. I think those things help but I needed prednisone.

Thanks for your story. As cowgirl75 said, it is helpful to hear each person's experience with this disease.

freesia2
freesia22010-09-26 11:23:40Hi Tom,

Welcome to this forum. I agree that maybe you should seek out another Dr. - a Rheumatologist (affectionately referred to here on the forum as a 'rheumy'). They have experience treating patients with PMR. When I mentioned to my rheumy when I first started seeing him that I understand that PMR is pretty rare, he said well it's rare for the general public but he sees quite a number of patients with it.

I know you said you didn't care for all of the side effects of taking prednisone (someone said there are 82 of them Thank you all for your replies.
I know prednisone is cheap, (/mo.) at Walmart, but doctor visits and blood tests aren't.
I guess I figure I can get through this without it because I did it before. However, I am concerned about the possible ill effects of long-term inflammation of the arteries. At night I feel a heat in my upper torso (probably corresponds to the normal drop in cortisol at that time).
The long-term effects of prednisone sound worse, though.
I really want to try to reduce the inflammation level by natural means and not by suppressing the immune system with steroids. I'm greedily devouring information on anything that is supposed to do just that, and I have to admit to trying just about everything, (the shotgun approach).
Just lately I've upped my dosage of fish oil and vitamin D3, for instance, and I'm taking a handful of herbs which I encapsulate myself, (buying them in bulk at the health food store)
I know what you mean, though, about the attractiveness of just getting the pain behind me, especially as I still have to function at work. I drive a redi-mix truck, and have to handle the 50 pound chutes. That has been a painful engineering feat! Also, the soreness in my butt after driving any distance is intense.
Again, thank you all for your interest and advice. It's great to discuss this with folks who know what I'm talking about!

seca91

Read the LDN thread.

Tom, men can quite often cope with it better, its something to do with the person. Each of us is different. Pred side effects do not seem to 'hit' men as much as women. Don't ask, I do not know why.
Tom,

My personal opinion, based primarily on my own experience, is that your fears of the side effects of prednisone are probably exaggerated. Sure, it's a steroid, but for PMR victims, also a welcome relief from pain while the condition runs its course. You probably should be more concerned about your CRP score than the side effects. I myself cannot really identify any side effects from about 3 years of relatively low dose pred, unlike our lady friends who seem to suffer them much more than men.

If you start off at 15 mg., which seems to be the common start point for those without GCA, you can gradually reduce a small percentage at a time as your pain or lack of significant pain dictates, and you'll reach low levels fairly quickly. There's no good reason, in my opinion, to suffer unduly from pain that restricts you from exercising your body in a normal fashion. You'll end up suffering for a long time and probably losing muscle tone from avoiding activity that hurts.

In short, give pred a try and budget for the tests at as infrequent interval as your doctor will accept. You'll learn that pred is a friend, not an enemy.

Good luck, Tom.

Hi all!

This isn't going to be my usual exhaustive post (thank goodness, they said!) as I haven't done any additional research on this topic. However, I was at a scientific meeting in S Korea last week which included work about the role of a newly found structure (that has been identified by some researchers as being associated with acupuncture) in cancer.

One of the key speakers is a cancer researcher in Germany and in his paper he mentioned four "risk factors" associated with the development of tumours. There were the usual genetics aspects and the effect of stress - both of which are often mentioned. Offhand I can't remember one of the others but the one that really struck me was that a chronic state of inflammation is a risk factor for development of cancers - so I asked him about PMR. He said that untreated PMR is indeed the sort of inflammation state that COULD predispose you to having cancer. His recommendation was that, if you choose not to take steroids to reduce the inflammation for whatever reason, not only should ESR and CRP be estimated but also certain cytokines, especially if someone, like me, has normal ESR and CRP levels. His point was that whilst it is not 100% certain that the PMR inflammation would cause cancer, there might well be a greater risk if these particular cytokines were raised. He also said that the tests would not be covered by health insurance in Germany (although I have no idea how much they would cost there or in the USA) but that he felt the cost was justified.

I do appreciate what you have said about the cost of doctor's visits in the States (and count myself very lucky to be at the mercy of "state-run" medicine where it does not cost me to see my doctor) - but when you take all the facts into consideration it does make steroids look much more appealing (if that's the word I want!). I am lucky in that my GP provides me with ongoing supplies of steroids without me having to see her more than about 6-monthly and I have the responsibility of adjusting the dose to keep me mobile - maybe you could find someone with a parallel concern who wouldn't insist on frequent and expensive consults?

MrsE

As a US citizen without health insurance and a relatively low income at present, I did what my mother would have been horrified by. I went to the low income clinics. After the first diagonsis, they recomended me to go to the local FREE clinic (turned out my medium size city has 2!)

I called one up and found they had a rhumey once a month. He saw me once to confirm the diagnosis and a 2nd time a month later to review the pill regiment. He suggested I just keep dropping the prednizone level slowly. He said I would need predizone for 1-2 years. He gave me a 6 month prescription and that was it. He gave me his card to give to any doctor (if they have any questions) I see at the low income clinic to renew the presription.

So until coming out to the internet, I am ignorant of this disease, but I have only spent about in the last 9 months on doctor visits concerning PMR. HOWEVER since I have developed diabetes related to the prednizone, I have had to visit the doctor a lot more. Probably about 8 times in the last 9 months. Total medical expenses - around 0. Not much when you count that my last ear infection cost me over 0 at a regular doctor office.

Just humble yourself. Go to the low income clinics. Be prepared to sit with nice poor people, lots of crying children and the odd druggee and wait for hours (my longest was 4 hours) to see a doctor who can only see you for a couple minutes. Oh, and be real nice to the doctor - they are probably volunteering for free. Note: that rhumey didn't have to supply his real business card.

Tom,
Go see your local Beekeeper and ask him about Apitherapy! also see my posts in the Odds and Ends forum Topic: Apitherapy as an alternative treatment pretty much tells my story . My Rhumey thought it was PMR and then RA, no matter I have kicked it pretty much pain free for the last month.
Good luck
Hello to all:

My first post....

I am a 72 yr old active lady who has had PMR on and off for almost 20 years.

When it first "hit" I woke up unable to get out of bed and stiff as a board-had no idea what was the matter with me.

I lived alone at the time but managed to get downstairs (on my bottom), get dressed and get to the dr. The nurses looked out the window and saw me trying to get the car door open and rushed out to help me.

Luckily my doctor recognized PMR and sent me to a rheumatologist but noone knew what I had when I told them "polymyalgia rheumatica".

That was almost 20 years ago. I have had PMR ebb back and forth several times over the years. It has never been as bad as that first time. Right now I have it low grade and I am able to cope with it without any prednisone.

For those of you who are leery of taking the prednisone-try it. You might not have to be on it for along period of time and if you can be more active in the meantime, it might just help it go away faster. I always managed on a very small dose- the most I ever took was 10mg. and I managed for a long time on less than 2mg. gradually decreasing it to 0.

Hope this helps someone along the line...

Nan

     Well I'll post an update on how I'm doing about a month after my last reply. I'm doing great!
I got a sample dose of (12) 10 mg. tabs of prednisone, and within hours my symptoms began to subside. In a couple of days I was about back to normal, able to work out with light weights (full range of motion) without feeling inflamed and sore the next night.
But here's the really great part, after tapering down to nothing on the prednisone, (5-2.5-1.25-0) I'm still pain-free! It's been a couple of days at zero.
     Here's what I think is going on. I think the prednisone stopped the inflammation, and that I've been able to prevent it from restarting with anti-inflammatory herbs and an extremely anti-inflammatory diet. It may be too early to draw such sweeping conclusions I admit.
     I found a great website that actually quantifies the anti-inflammatory properties of foods. It's nutritiondata.self.com. I've been eating a lot of mackerel and pink salmon, onions, olives, avocados, 90% cocoa chocolate, sweet potatoes, etc.
      Also I'm taking a lot of herbs, and I think ginger, tumeric, and garlic may be the most helpful.
     Anyway, it's too early to be sure of anything, but I'm doing great!   Thanks again for all the help, support, and advice.

Oops, just noticed chocolate is listed inflammatory on nutritiondata site. Darn, I'll miss those midnight snacks.
That site figures the glycemic index into the inflammation rating so if a food has quite a bit of sugar it may rate as inflammatory, even tho other folks claim that because it has a lot of anti- oxidants it's anti.
Dear Tom,

I have been reading with interest your story with toughing it out with PMR. I also toughed it out, but not by choice. I was diagnosed two years after the onset. In those two years, especially the second year, I really went downhill. It got so bad that I could not raise my arms above my head without pain, could not kneel (I would just fall over), had to pull myself up the stairs using the handrail, etc. My friends would all look at me with great sympathetic eyes when I just tried to get up out of a chair.

Then, just before they diagnosed me (I finally had a blood test: my ESR was 123) I read on the internet that if PMR is not treated, it can get worse and worse. Finally they started me out on 20 mgs of prednisone. I felt better in a week. Now (1 1/2 years later) I am down to 3 mg, (going down again this week) and feeling great!! No more side effects, and I lost 25 lbs - more than I had gained!

I wish that I had saved that page on the internet where I had read that the PMR would only get worse without treatment. All that to say that prednisone has done good by me. We just need to know how to control it. -- This forum helps incredibally! Thank you to all of you!! Nancy - I've wondered about whether PMR gets worse if not treated. I had had it for at least 5 years before it was given a name - on the basis of the speed of response to prednisolone. I took the first dose at 10 am and walked downstairs properly about 4.30pm! Before that despite repeatedly asking the doctor I was told there couldn't be anything wrong - all the labs were normal! I pulled myself up the stairs on the good times and crawled up in hands and knees the others, going down was like a toddler, one step at a time with a thump. Not that anyone offered me any sympathy! Now I have found it almost impossible to get below 9mg/day - I take 17.5mg every second day at present although I did have a period at 13.5mg/2 days before having a flare last summer which needed the higher dose to stop the pain in my feet which stopped me even walking around the appartment. I've just had a bad few days with swollen finger joints again and bad lower back pain but it does seem to be improving - the weather has just changed to very damp which is always problematic! This area is meant to have 300 sunny days a year but 2010 was a bit low on them and 2011 hasn't started well either! Here's hoping for sun soon,

Eileen
Eileen, my heart goes out to you...you have it worse than I do. I can sympathize with your pulling yourself up stairs and crawling on your hands and knees. And humidity makes to whole thing worse? Since I live in Colorado, I don't have to deal with that, this has got to be one of the driest places on earth (except today, we're in the middle of a snowstorm). I have just started today dropping down to 2 3/4 mg every other day (alternating with 3 mg). Guess I'll have to let y'all know how it goes..... Lord, please send sun to Italy!!Nancy - I live half way up a mountain too, for the purposes of skiing and the humidity is usually about 35%! However, the season is 6 weeks old and I've been once - December was too cold (I know we're wimps here but minus 17C is not nice if you ski for pure pleasure as I do) plus it was very windy which blew our beautiful early season powder away leaving a load of ice. I was away over the holidays but I only ski when you can see the snow - too many people at Christmas. This week has gone all mild and it's RAINING in the village! Well - more heavy fog, but you know what I mean!
Eileen
Eileen and Nancy...
I'm thinking that this cold weather is hard on PMR. It's 9 degrees Fahrenheit today and we've received 12 inches of snow in 5 hours. This year I've developed Reynaud's syndrome. I've read that it's common for people with autoimmune diseases. Have any of you had problems with this? Just holding a cold drink or getting milk out of the fridge turns my fingers white and painful.

Mrs. E, I'm down to 10 mg of prednisolone for the zillionth time. I get there and then can't take the pain and go back up again. I'm going to try and get through it this time. I've been down to 9 mg. for a few weeks, but always had to go back up. I sympathize with you! It's frustrating to be stuck. I know that prednisone is not the enemy, but I'm tired of my moon face and the bruising.

Next month I'll be in sunny, WARM, Arizona for a few weeks. Can't wait to see if it makes a difference. Do you know if I need to be avoiding exposure to the sun? I'm dreaming of laying by the pool and swimming!

Gentle Hugs,

JannieJannie - it's not the cold so much as the damp! Though temps hovering around 0F are not nice! I manage as long as there is no wind - even going skiing!

I've had Reynauds for years - pictures of my hands in response to a "cold challenge" adorne the walls of a lab in the north of England as "Text book examples"! Walking down the chiller aisle in the supermarket in June was enough to give me cold hands with dead fingers! My daughter has it far worse than I do though - and I've not had much bother recently, even this winter - the steroid/PMR hot flushes have banished it!

I'm lucky - no bruising unless I really bash hell out of an arm on a door and the moon face isn't too bad - just cuddly all over!

Enjoy Arizona - I thought it was cold there this week too. I don't bother about the sun - just keep an eye out for burning, I think some people do burn more when on steroids but I just don't spend loads of time in the sun anyway, never did. I was the only person moving my sunbed to follow the shade of a palm tree a few years ago in Tenerife! I like it warm in the shade - with a chilled drink!

cheers, Eileen

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