Signs polymyalgia is coming back

Thank you thats good to know I thought I was doing well reducing the steroids as I have heard scare stories of steroids , I am totally confused as this wasnt explained to me I am going to ring the consultant tomorrow for his advice. When he told me to reduce them he said I musnt confuse the pain with the ordinary aches and pains we get when we get older, as I have an under active thyroid this causes muscle pain too ,I cant recall now at what stage amount I was taking when I realised it could be back ,so I will ask how many I take again . Thanks again

Morning Ellen, you had responded to me a week or so again, I'm hoping you remember my story. I need some of your wisdom. Finally saw my Doc after two full weeks of terrible pain, which of course had lessened. He decided that my pain wasn't from PMR but sciatica. He gave me a prescription for pain meds, and instructed his office to schedule an MRI asap and at the same time get me an appointment with a physiatrist who might give me some type of injection for relief. Two days later I called office, neither order was done ( asap ?) I'm now told it will take two weeks to MAKE the appointments and God know when I'll get in. Anyway thats my whiny babble for the day, heres my question to you. Like another on this board I'm not exactly sure what the actually relapse PMR signs are. I was diagnosed very quickly after one day of strong pain, and one blood test, my Doc called me at home and told me to immediately take 60 mg of prednisone. That was in march. I'm now at 7 mg. My fear is that its not sciatica and that horrible pain will come back.

What should I be aware of? I'm starting to get over whelmed with fear. Crazy? Thank you in advance for any help you can give me. I read how you've help so many. Bless you for all the time you put in for us.

I think it really is time to get a doctor who has some idea - cos I don't think he does!!!! To start a ?PMR patient on 60mg is ridiculous. That is a GCA dose and while I'm sure it would deal with PMR pretty comprehensively - it would be at the risk of exposing the patient to unnecessary steroid side effects and meaning a far longer tapering journey. Add to that the fact that PMR has a median duration of 5.9 YEARS, not months, what has probably happened now is that you have reduced too far and the PMR is resurfacing - as I explained to maureen. Even if you had started at 15mg, a far more usual dose for PMR, to have got to 7mg between March and before xmas is pretty speedy - and a lot of people would have had problems. The high dose at the start only works then, at the time, it was using a bath sheet to mop up shaken tea cup spill - really OTT.

If it is sciatica symptoms it could well be a mixture of PMR plus myofascial pain syndrome or piriformis syndrome - both of which are more common in people with PMR. He can do all the MRIs he likes but if the cause is muscular they won't find/see much at all. Spasmed low back muscles can cause quite severe low back and leg pain by trapping the sciatic nerve, it doesn't have to be discs involved, mine is entirely due to muscle problems and a physiotherapist can often resolve the problem with manual techniques. They did for me.

Relapse of PMR is a return of the same sort of symptoms you had originally - sometimes there are other, different problems, but in general they are the same sort of things. It is easier for me to hazard a guess if you describe what you are feeling - because I recognise things as possibly PMR that haven't occurred to you because they are a bit different. Someone on the other forum asked for help the other day - and what she described were, to me, obviously potentially a flare which had happened because she had reduced to 8.5mg - a return to 10mg has resulted in an almost overnight miracle! The same had happened last spring at 8mg and it is obvious to me that the dose she needs is not less than 9mg. You won't get lower than the amount you need to mop up each day's new inflammation. If you try to do so then the leftover inflammation will build up and eventually be enough to cause symptoms again. Leave it and you will be back at the start.

If you have been taking steroids since March I imagine your doctor now thinks you have PMR. Did you have a magical improvement when you started taking the steroids? You have done pretty well getting to 7mg since March. Just take reduction slowly. I get sciatica occasionally it is excruciatingly painful and is down the back of the leg. It is not always bilateral unlike PMR. Were your symptoms pain in hips and/or shoulders? I would hate to have that PMR pain that I had before I was diagnosed too.

Hi Eileen,

Thank you for being the resident expert for all of us. I was diagnosed with PMR 6 1/2 years ago, started at 30 milgms of prednisone and have been holding at 5 for a few years. Attempts to reduce below that have been unsuccessful. My Muscular Neurologist has said that I will be on prednisone for life. I am interested in your comment that PMR usually only lasts for an average of 5.9 years. I had thought this was a life sentence before reading your comment. I am wondering where I can read more on this?

Juanita

There are many doctors who will tell you it only lasts 2 years - it might, but only for about a third of patients if they are lucky. If it is shorter it seems there is a higher chance of it returning for another bite it is said.

https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

is a report on a study that established the 5.9 year median. It is said that about 5% of patients have it for life - but although the duration is pretty variable, for most patients it does burn out and go into remission.

This

http://www.rcpe.ac.uk/sites/default/files/quick.pdf

is from an experienced group and they base their management on 2 years - but it all depends on the small print that no-one seems to notice in any guideline saying that the reduction must be tailored for the individual patient and their symptoms. I know a few people who got off pred in 2 years but the vast majority need 4 to 5 years.

Of course, the longer you are on corticosteroids the more likely it is that your adrenal function will struggle - and the answer to that is also life-long steroid therapy.

Hi Just to provide another experience - I had PMR for about 1.5 to 2 years and this included a few months finding out what I had and a few more trying to deal with it without steroids. I eventually succumbed as nothing else worked and was put on 15mg. I reduced by 10%'s as quick as possible but trying to keep the symptoms at bay I quite soon got down to 5mg and eventually to about 1mg. During the last hot summer (did it help?) and eating yeast extract for the B12 (did it help?) I was able to do without steroids which has continued to be the case up to this day. I am relatively pain free but do still get stiffness in various areas which come and go - the other day my middle left finger was stiff but now is totally fine and so on. I spoke to a doctor the other day who said that steroids even at a low dose might cause soe osteoporosis, not sure if this is true or not.

Thank you again Ellen, you have been a God sent. I'm taking in all you

have given me. Can you tell me what type of a doctor does PMR? Is a rheumatologist the way to go? I started with severe hip pain, and shoulder aches. Doc took blood and got a high sed rate so started me on the 60 mg. I think he was thinking GCA, I had biopsy which was negstive, sometimes I'm not even convinced I have it, especially now that he says its sciatica. This time my sed rate went from 30 to 27 them 38. all within 2 weeks. Best regards

It was a Muscular Neurologist who diagnosed me i see him annually for my prescription for prednisone

You are male - I assume, doesn't always follow of course - and men do have a totally different experience of both PMR and pred. No-one knows why really, possibly those pesky hormones - except PMR isn't the illness, it is the signs of an underlying condition, there are several and there is no reason why it shouldn't be very different in men.

Yes, steroids even at a low dose may still lead to osteoporosis - but it is not certain that steroids at any dose will definitely cause osteoporosis. I know 2 ladies, both in their 70s when GCA started, both on high doses of pred initially and on pred for 5 years, neither of whom were put on bisphosphonates and neither of whom actually took calcium and vit D either. Their BMD remained stable the entire time. Mine hadn't changed significantly in over 7 years on pred - though I did use calcium and vit D. Unless the BMD is checked BEFORE pred is started no-one can know if the low BMD was due to pred or was already there.

Across most of the world it is rheumatologists who diagnose and manage PMR/GCA patients. In some countries neurologists may also care for such patients - no reason why as it is NOT a neurological disorder even if the end-result in GCA may be damage to the optic nerve.

The biopsy isn't conclusive - for all sorts of reasons - and a negative one doesn't mean you don't have GCA, it means they didn't find what they were looking for, the giant cells that give it its name. The symptoms are always trumps. In the same way, just because the blood markers are high doesn't necessarily mean it is GCA, left long enough anyone's ESR can get high as the inflammation builds up.

Sed rate is a very non-specific test and rises for all sorts of reasons, including colds! However, it was high, obviously went down with 60mg pred - and I assume has risen again with the reduction in dose now? If it is rising it suggests the current dose is not enough to manage inflammation - and sciatica doesn't usually affect the ESR.

thank you, I'll look into this.

Thanks again, I'm looking into changing docs, but scheduled for an MRI in 2 weeks, to check pinched disc. I went back to the 7 mg , per PCP, not feeling problem, except the sciatica. That is constantly painful. 😦

thank you again for your support. you asked what i am feeling. My first experience in March, i woke up with severe pain in my right hip, and flu like symptoms, bad enough that my hubby called my pcp who saw me that day. Took blood and called me that evening an told me to immediately get the prednisone and start taking 60 mg. within two day pain was gone. he had me reduce to 50 mg the next month and continue dropping 10 mg each month until i reached 20 mg. then it was 1 mg each time i reduced. i was down to 7 mg for 2 weeks, in hindsight i did have some hip discomfort but thought that it was from getting older. Then one day I woke up with hip pain which went down my leg and my foot. it was the worst pain i have ever experienced. i felt like someone was scrapping the meat of my leg, and very sharp stabbing pain in my calf. my ankle felt crushed and the sheets hurt my foot. i really didnt know if it was the PMR or sciatica. ( duh)

i was afraid or just didnt know that i should take more pred. my doc was away and his office said he had no coverage. after 5 days of this hubby took me to hospital ER, they admitted they knew nothing about PMR. i asked them to do blood test and my sed rate had increased 11 points in 10 days, they told me to up to 20 mg, 4 days later i saw PCP, who said " if i didnt know you had PMR and you came in with these symptom i would tell you it was your back (sciatica) and to see a specially for that." he told me to reduce to 10 mg and ordered an MRI and i went to specialist. this doc had 2 mri to compare. i asked him if he saw anything that would indicate the pain i was feeling, he said no. ( and I'll be getting injections for my back soon) back to square one thinking it was a flare up. so now i will be seeing a Rhumy next week who claims to specialize in PMR. After all this long email i guess i would like your opinion, did i describe a PMR flareup. are they that painful. after reading all the comments ( seems like everyone has pain everywhere) so i am still unsure if its pmr. i only had pain in my hip.i do get tired easily and when climbing stairs i get out of breath. sorry how lengthy this is but i want to give you all the info i could. whew. thank you in advance.

thank you Ptolemy for responding. yes the steroid did take the pain away after about 3/4 days. i have had no shoulder pain but the leg pain was excruciating. im at 9 mg now and frankly getting very nervous about reducing. thank you for you help..

I'd suspect that you may have back muscle problems - piriformis syndrome can cause sciatica and won't show up on imaging. The sciatic nerve actually passes through the piriformis muscle in some people and if that muscle tightens it irritates the nerve. The more it tightens the worse it is. It may be other muscles that are the root of the problem so you need an expert physiotherapist usually, most doctors are hopeless about muscles! An expert sports physiotherapist might be the best approach - think the heroics we see at sports events as the work on athletes' backs! I have similar problems and they do get worse with a flare of PMR - but also if I have lifted something badly or even just tripped. It is difficult to tell sometimes. PMR flaring may start with just one thing and then progress to affect more areas.

I'm assuming your doctor put you on such a high dose of pred because the sed rate was exceptionally high - which is a shame because you don't usually need that much for PMR - only for GCA when it is putting your sight at risk. The sed rate isn't really a guide as to PMR or GCA - people with PMR can have high levels, people with GCA have low levels, symptoms are always trumps. PMR symptoms are stiffness and pain in shoulders and/or hip girdles, morning stiffness and stiffness that returns after sitting, inability to raise arms above shoulder height making hair washing/drying difficult, and possibly sweats and weight loss. All this responds well to pred at a moderate dose, 15-20mg is usually enough. It is easier to recognise when you had a delay in diagnosis and were started at a lower dose - but a flare is a return of those symptoms.

Morning Eileen! I will be getting spine injections this Friday from my Physiatrist and seeing a Rhumy next week. thank you for your lengthy reply, it helps. one more question. when people on here describe their pain is it when they are reducing or just an everyday part of having PMR, or both? btw, been to England several times, my childhood dream, and love it.

Depends - some people are never entirely pain-free, others just have pain when flaring and others have pain from something else - osteoarthritis, back problems not directly PMR, bursitis that is maybe due to PMR but maybe not, even fibromyalgia.

Actually I don't live in England even though I'm British - I live in northern Italy 😃 Some of the others do though!

Dont know why I thought you were in England. I’ve been to Italy several times too LOL loved it there too. is it improper to ask where?

Right up in the north, in the Dolomites, in a ski region. About 45 mins drive to Cortina d'Ampezzo, an hour and a bit to Innsbruck in Austria 😃

Ive only been as far north as Florence, I'd love to go back and stay for awhile. My Hubby has friends who live there so matbe some day. Enjoy the rest of yours!