PMR Timeline

Glad you were diagnosed quickly Elijo and are not suffering. I am doing fairly well with minor flares where I increase Pred slightly, then taper down again. I started on 20 mg, but went to 15 within days, and then slow taper from there. Once I was at 10 mg, I only reduced by a half mg and guaged it by the amount of stiffness. I fluctuate between 3 and 4 mg now, and have been on this dose for a few months. Can't get under 3 mg without flaring. Good luck with your taper. Take it slow 

Thanks and it's so good that you are on such a low dose of pred.  The side effects (maiy!) are the worst, but as I said before, I can function!  Hang in there!

Hi Penelope,

A few nurses on this forum it seems!  

I sure understand feeling down when there's a flare..  not to mention back problems.  I have osteopenia and have been on Prolia injections every six months for the past 18 months.  Expensive but worth it if it prevents osteoporosis.

Take good care. 

Thank you for the info Hope.  Yes, I agree that the best advice is to take enough Pred to control the symptoms - the flare ups are not for sissies, and they invariably happen when tapering too quickly. 

I had a bad flu 2 weeks and after that pain, chills and high temperature. And I know its as not fever. But inflamation. I had this pain in the past and celebrex for a few days fix it. But it's progressing as I get older

I also think I had pmr for years, managed on Diclofenac. When that was stopped I went into a very severe phase. It took sometime for pmr to be diagnosed. I often wonder, if I had been allowed to stay on n.s.a.i.d's whether it would have become si bad.

Before I was dx and I was having pains & stiffness, I found that NAIDS did NOT help at all.  I even took a hydracodone (that I had gotten a while back for my back) and that did not help, so took another one, no pain relief but almost knocked me out.  Pred even with all of its side effects has saved me!

Many doctors believe that NSAIDs can be used for "mild" cases and it is mentioned in guidelines. They do have an anti-inflammatory action so there is some logic. I'd say that first 5 years of mine was "mild" (all things are relative) but NSAIDs didn't really do a lot, maybe took the real edge off the worst pain, but no more.

They are terrified of giving us a low dose of pred that allows us life - but it's fine to pop NSAIDs that also have potentially fatal side effects and certainly don't do stomachs any good. I have a friend who was told to take ibuprofen for her (not recognised) PMR - 3 doses and she was in A&E with a coffee grounds gastric bleed. 

Thanks to all of you for sharing your stories, and for those of you who have not found any answers (like Butterfly) , I wish you luck getting to the bottom of it. 

Thank you Sheila. Thank you for this forum. It's hard to be sick and getting scared because the Dr scared you with some blood test you have and he it's guessing why my inflamation is this high. And is giving me 2 kind of nasty antibiotics That us making my pain worse.

Any of you had pain in your ribs?

Dec 2/15 I began having pain on my ribs and lower back.

Then u had the flu almost 3 weeks ago and Pain on my hips and pelvic area began.

Have a great dayb

Given the situation with antibiotics and resistances I'm somewhat surprised at any GP dishing out abx willy-nilly. Well, I'm not really - I have no idea where they learnt their pharmacology!

Any chance of a different GP Butterfly?

The rib and low back pain is something that is typical of something called myofascial pain syndrome and is something that is often found alongside PMR. But rheumies in the US/Canada don't seem very au fait with such things.

Yes, I know I have something going on. I had pain on my hips for so many years. I had gone to the same rheumatologist because we only have one here I my city. She gives me the same lecture without any test and send me home.  I wonder if she sees my blood test she will think different.

my regular doctor is very good in sticking needles in us for anything. One day I went with pain that was not going away on my eyebrow and he touch it and was painful. He said I just had a patient that brought a very expense bottle of Botox for me to administer to her and I have some left . I can inject this in you eyebrow and because I wanted some release I agree. Anyway i had the best looking eyebrows for a while. Jajajaj

for my hip pain he injects things on it. He is the Dr pain. I Have  learn the lesson and Tell him let me to Think maybe on my next visit lol 

now he thinks i have diverticulitis and that that is the antibiotic for. How he knows  if all he have is the blood test. 

Thanks for listening my frustración. 

But i had a cough for 10 years that came on april and sept Hello is this not allergy? 2014 the cough came and was not leaving. I was sent to an specilist, in got in fast to a new One who came from Pakistán . He sent all the test and saw iñhim for the results. My husband and i got in and he said you dont have what your mother died from which was pulmonary fibrosis. 

He began y see the test and he got to the pulmonary function test he said that if somebody show him that test he will say that pérdon have PF

i said you just told me i dont have it. He said take this puf and if you cannot breathe before dec come ann see me, he order all the test again. Went to see him in jan and he said the same thing plus he released me because i was go i g for a 2 opinión. I went Back to de pain and told i was very stress out from what this de said. On march 15 i went for. 2 opinión and he didnt see what the pakistaní was seeing on my test.

the new dr told me i could fly, no problem.

on april in went back home, Panamá. For a visit and i made 2 Appts Lung and allergy specialist. I went to the allergy Dr in the am and as he see me he said to cancel the Lung specialist because what y have was alllegy. After all the test i was allergic to environmental things . He was mad that the Drs in Canada didn't take care of this early and had gone to my bronchial area. I do my own allergy shoots once a week and adios cough.

sorry this has nothing to do with pmr But that is why i am so frustrated with the drs here. I am planning to go back home this summer to check about my inflamation 

What community are you in, Butterfly?  Is there anywhere nearby where you could go?  I know the doctor shortage makes things really difficult sometimes, but you only get one body, so it's worth fighting for.  Is there anyone you could bring along to any of your appointments who might be able to steer things a bit more positively for you?  It sounds like you are being kind of brushed off.

I am in canada. Yes in will see what my blood test Tells this week. 

I see people on this forum with sed rate of 35 and i have 89. I don't understand why so high . But I know I don't feel well. 

I'm in Canada too (Nova Scotia), but I don't seem to have run into quite such a roadblock as you have - although I did remain undiagnosed for quite a long time.

It may be a real sign that there is considerable inflammation - either because the cause is very active still or because there is a lot of stored up inflammation.  ESR (sed rate) can also go up with a cold or other infection as well as several other things. But it needs proper investigation, not an assumption that antibiotics will deal with it - particularly without having identified any such bacterial infection. There is a world-wide movement to try to REDUCE the use of abx like this.

Pmr was never in question. It was just considered to be rheumatism 'aches and pains'. I was well controlled on nsaid's and always worked. I can't remember when it started, way back in my twenties ,  I had loose joints a nd was just considered to be rheumatic key. Then they stopped the divlofenac that I was on then, because it has serious side effects for the over 60's. Within a short while, I was I not excruciating agony, unable to do anything. They had me on moraine, which hardly touched the pain. It took months to find out what it was. I woke up, with a paralytic weakness down one side,  and almost unable to walk. Then my bloods were very elevated. Can't remember what. Things have been complicated because I had a severe tremor and finger numbness, which eventually turned out to be pernicious aenamia, which needed a special 'tissue' test to be diagnosed.

lt does me good to remember how dire things were  3 years ago!

currently struggling to get below 7.5. Tend t get tired and still can't walk properly

Excuse the typo's. Computer down and iPad has a mind of i's own!

Rheumaticy, morphine, ,Diclofenac!

I was in excruciating pain. I always worked. I give up. Work it out for yourself, if you can be bothered!

i had no problems understanding what you meant and the iPad didn't like! It's like the things they put up on Facebook that are all messed up to show how clever the human brain can be! My husband and I only have very basic phones but they have predictive text as automatic - for Italian! Drives us up the wall - so OH just won't text as he can't remember how to switch it off