So here's the deal

As Julian said above

"We tend to write blandly that the cause of pmr is unknown and there's no cure, just treatment for symptoms. But its fairly significant as we try to muddle our way around it as best we can."

Muddling is exactly what we do.... it's  always different for every person and it's not individually predictable either.

We want to trust the Drs. We are desperate to trust them. We want to take a pill and make it all better, and when that doesn't happen we get mad. Mad with ourselves for getting sick, mad with our lives, made with our family and mad with the medical fraternity.

What we really have to remember is that this is NOT going to kill us. We're the lucky ones.

 

Sometimes I do wonder... It isn't THE decider, it is A bit of evidence to be considered.

Low vit D is commonly found in almost all autoimmune disorders but whether it is cause or effect isn't known. Vit D is one of the exclusion tests that should be done at the beginning because its symptoms are sometimes very similar to PMR - if it is low then you supplement with high dose vit D (60,000 IU a week for 8-10 weeks) and retest. If the symptoms disappear as the weeks progress then it probably WAS the low vit D. If they don't and are still there as bad once the vit D is somewhere decent - then it isn't JUST low vit D. 

And to be fair to the patient - if you start them on pred and the pain goes immediately - then it is more likely to be PMR than low vit D. Pred won't usually help low vit D. If the pain comes back as you reduce then that is even more likely. If you haven't been on pred more than a couple of weeks then reducing 1mg a week is fine. If it is the vit D then replenishing it will allow you to wean off pred quickly when you try it - a few weeks extra on under 10mg isn't going to kill anyone if it leaves you pain-free.

Your Doc did right by testing your Vit D level, it is an exclusion test before a diagnosis of PMR is made, as the symptoms are nearly exactly the same.   How much Vit D have they put you on?

I did not have PMR but I did have GCA when all of a sudden aches and pains just like PMR, but I was on a high dose of pred at the time, so a Vit D Test and it was so low.

I was put on 40,000 units per day for 10 days  aches and pains vanished after six days.  Another blood test and then 20,000 units per day for 5 days.  I still take a maintenance dose of 1000 units per day (bought OTC from Boots).

GCA went into remission after 5 years and is still in remission 6 years later.

Hope this helps.

Hi IssyR.  Yesterday was so cathartic. I'm usually a very uplifted person, and I had that nice euphoria of the 20 and then the 15 mg. of pred. Then I went to 10 and all of the ouchies returned, and it went on for several days, and I could feel my inner panic. Then I called the doc and she was on vacation, and I could feel this anger coming up. I wasn't really angry at her, but at this situation that I'm in.  I love my independent life, and feel mostly carefree. Now I make dates with friends and end up sometimes canceling because I have no energy, but now the pain had returned, and I could feel myself being angry inside. My husband and I talked about it, and I was telling him how I was directing all of my anger toward my doc, and it was wonderful to be able to write it all out, and no one died. I could say it freely here on this site, get it out, be totally unreasonable, and irresponsible, and the anger just went away. When I talked with the doc last evening (thankfully he was willing to call, and that also was very re-assuring) he suggested that I take the extra 5 mg. last evening and then pick up the 15 today. I woke up feeling no pain this morning, just a little stiffness in my shoulders. It told me that I do need to be at 15mg for a while, and I fully accepted that. I think part of my anger yesterday was also realizing that I'm not going to do two weeks at each stage and be free of the pred. I've had this "i just want it to be over' feeling, and I guess I'm just not going to sail through this with one course of the typical protocol. I have to go through what everyone else had to go through. So I was able to get rid of my 'magical thinking' in that letter yesterday. One wise man I met suggested that I write to my diagnosis, and get it all out, and in a way that's what I was directing to my doc, but I'm going to spend the week end with pencil in hand, and write some of my feelings down about this challenge, and purge it all out. Now that I see how effective it was to just write about my anger yesterday I was able to focus that wasted energy on healing, and feeling better. I might just journal or find a way to get it down on paper. In my writing group I did write about the nightmare in the first 5 months, going to doctor upon doctor, and it felt like the medical profession was passing the buck, and no one was listening. The group liked what I wrote and encouraged me to expand on that, so perhaps I'll do that. But I feel so peaceful today, and I thank everyone who wrote to me yesterday. What a difference a day makes (and a little more prednisone).  It's a beautiful day in Maine. I'm off to fixing my breakfast, into the shower, and meeting my friend for errands and lunch. I'm going to also buy more primroses for my garden. I found four the other day in diffrent colors, and I have one garden full of different colored primroses. They make me smile when I look at them. Have a wonderful day everyone. I'm signing off for the week end. I have to get my Little Free Library stocked and ready to open on Sunday. Be well everyone. 

Elizabeth

You would almost certainly be OK at a lower dose than 15mg - just not 10mg so soon. And dropping 5mg at a time is just silly - it works for other things where pred is used, it simply doesn't in PMR.

And NO-ONE with PMR will get off pred with " ... two weeks at each stage and be free of the pred. I've had this "i just want it to be over' feeling, and I guess I'm just not going to sail through this with one course of the typical protocol."  If they do - it wasn't "our" PMR.

I was given 2 weeks each of 15/10/5 and stop - the pain was acceptable at 5mg even, within 6 hours of not having taken a 5mg pill with breakfast and I was in bed in worse pain than before. It took years to get back to 5mg!

PMR is an ongoing problem, a new source of inflammation will be shed in the body every morning as long as the autoimmune disorder is active. That is how you can get to a lower dose - the 15mg starting dose is one that should work for almost everyone to clear out the existing inflammation. Then you look for the dose that copes with the daily "dust" - like doing a spring clean and then just light dusting in between.

You really are having a rollercoaster of a ride with your diagnosis and reducing the steroids. It must be stressful which whether it is PMR or not is not helpful for you. I'm glad you have the increase because if you're in pain you need it in the meantime. I hope it is sorted out soon.

I just happpened to mention to my sister about VIT D, she has had RA for 2 years....she has never been tested for it.  She asked her doctor who told her, it`s an expensive test!......anyway she had a result of 17.....way below what it should have been.....has been on VIT D, 3 months, it hasn`t helped with the pain, but has definitely helped with fatigue.....they will preescrribe for 3 months, and then she buys her own, but should have raised it normal level by then anyway.  Why aren`t these tests done at the beginning of diagnosis beats me!!.....Any relief from pain/fatigue is worth testing for surely....

Rubbish about the cost, it costs about £10 - depending on the Hospital Trust.

It won't go up much unless she is prescribed a high dose and that means at least 20,000 units per day.  I did tell you in a previous posting what I was prescribed and my level was 48 - way above your sister's 17.

Mind it does depend on what scale they use, my hospital trust - tope end 148 OK,  anything below 100 not OK.

A hospital in the Midlands does the test for people privately as well as for the NHS. The charge is £25 - though I do know that one friend was told by her GP it cost over £200. The lord only knows where he got that idea and if it is true his practice needs to revise their purchasing...

Vitamin D deficiency is actually one of the things they should do in their differential diagnosis for PMR. I do hope they check that it has risen to where it is meant to be - and the only way is to do the blood test. And again in another 6 months to be sure it is still where it should be.

Vitamin D test done 20 mnths after PMR diagnosis...!! it's 800 units daily....my number was 25...Glad to hear you're in remission xx

Is that 25 ng/ml then that is just into the "adequate" range, 20-50ng/ml is regarded as adequate which isn't the same as optimum - and 800 IU won't raise it this side of next decade! You need more like 2000 IU.

If it is 25 mmol/L then it is deficient and you would need about 5000IU to get it up to a optimum level.

There is a factor of 2.5 difference between ng/ml and mmol/L: 20 ng/ml is 50 mmol/L. Most authorities these days feel that 75mmol is the bottom end of optimum.

My daily maintenace dose is 1000 units per day - so 800 will do zilch to correct the defiency.

I went down with Vit D deficiency after an op last November and I had never stopped taking the 1000 units per day. 

My Gp just said 'here we go again, did the test, 20,000 units, three days per week for a month. Another test - back up to the level. Continue to take daily dose.  £5.10 for 90 tablets is a no brainer.

ta,

my aim while on high dose was to decrease to reduce the side effects, now on low dose I'm more inclined to take it slowly slowly and be careful of symptoms returning. Being methodical helps me. Take less when I said I would rather than finding all the excuses under the sun to not.