Newly diagnosed with PMR | Arthritis Information

I have recently been diagnosed with PMR. What started as two numbing fingers about a month ago landed me in ER within 24 hours with pain that felt like an electrical shock going through my body any time I moved my hands or arms (my legs and feet are also impacted). After ruling out spinal damage they called in a Rheumatologist who diagnosed PMR and put me on Prednisone. Actually, before they started the prednisone they injected me with another steroid which produced the first relief I had felt in 3 days.

I'm still very confused about some aspects of PMR and its treatment and this looks like a place where I can get some fairly straight forward answers. I read through a number of threads on this forum and see some similarities to what I've experienced - but many differences too.

The literature I've been given makes it appear that this comes on over time - but I was incapacitated within 24 hours of the first noticable symptom. Has that happened to any of you? I wasn't having morning aches or other joint problems at all before the day my fingers started going numb. I had, however, been very lethargic for a few months before - my general practitioner and I were trying to figure out the cause and, in hindsight, it seems like this may have been an early indication of PMR. (I just turned 50 - no one else in my family has had a similar problem). I just thought my antidepressants needed to be adjusted.

I have been on Prednisone for three weeks now (20mg daily - going to 17.5mg this coming week). I'm told that this will "control the symptoms" but I don't know if "control the symptoms" means that the pain should go away - or that the pain isn't as severe. I usually have at least one body part that is having moderate (5 on a scale of 10) pain at all times. One area clears up - another starts to hurt. Is that normal when you're on Prednisone treatment?

Occasionally a body part swells up and produces pain closer to 8 on a scale of 10 until I can get the swelling to go down (taking Advil - which the Dr. said to do if/when pain starts). My hands have periodically swollen up to the point that I didn't think my skin could stretch any further. I've had times where my feet have swollen badly and the areas that weren't bright red had turned yellow. It can take 12 - 16 hours to get the swelling down to a point where I can walk. I've found standing in a very hot shower to be helpful when it hits multiple places at once.

I have been told that it will be a long course of treatment (periodically reducing the MG of Prednisone) to try to ensure that it is completely out of my system before they stop the Prednisone entirely. Does the pain ever go away in the mean time? I was really hoping that the Prednisone would stop the pain - or at least have it not be nearly as frequent as it has been. What can I expect?

I also lost sensation in three of the fingers on my left hand. Two have regained quite a bit of sensation - one seems to be getting better but not much. Has that happened to any of you? How long did it take for sensation to come back?

I'm not sure that I like the Rheumatologist that was called in to the hospital when I was admitted - but I told my GP that I would go to him a few times and see if my opinion changes. If not, I'll change to a new Rheumatologist. When I'm doing Google searches to find out what is going on with my body rather than having the specialist explain it to me - that isn't good.

If any of you have experienced the sudden onset and similar reactions to what I've had I would greatly appreciate any information you can provide me. How long was it until you didn't have constant pain? What have you found that relieves the pain? Are there things that I should or should not do? Any advice would be appreciated. Thank you.

I am no expert but from what I have read on these forums and other sites Your symptoms and response to Prednisone do not sound typical for PMR, I would be requesting further investigation.

"Relief from pain and stiffness should occur within the first two or three days. If you're not feeling better in a few days, it's likely you don't have polymyalgia rheumatica. In fact, your response to medication is one way your doctor can confirm the diagnosis. " Ref: http://www.mayoclinic.com/health/polymyalgia-rheumatica/DS00441/DSECTION=treatments-and-drugs

Thank you for your response.

When I first saw the list of symptoms of PMR I said that I never would have guessed that this is what I was experiencing - but the Rheumatologist seemed convinced. Family members were at the hospital with me for the full three days I was admitted - they also did some investigating on the illness (and pointed me to this forum) and have questioned whether this really was PMR after comparing what they were reading to what they are seeing me experience.

I read the Mayo Clinic article you cited during my research - that is where I was getting confused - it did sound like the pain should have been controlled by now.

I did see the Rheumatologist 2 weeks after he diagnosed and discharged me from the hospital - he didn't change the diagnosis at all and he knew that I was still experiencing daily pain.

This will help me develop better questions for the next visit to the Dr. - Thank you.

I agree with Canny that your symptoms don't sound typical, but perhaps you have PMR along with something else. A word of caution about the Advil: my rheumy advised against taking NSAIDs and Prednisone together. I use Darvocet to alleviate the pain. Yes, the pain can go away completely, though it can also return when reducing Pred or when under stress or when overly tired, etc. My PMR came on very suddenly overnight. I awoke one morning with pain in biceps that moved through my whole body in a matter of days. Hot showers were the only things that could get me moving. The symptoms are frightening when you feel as if your whole body is under attack, but the good news is that PMR is not fatal and doesn't last forever. If you don't have confidence in your rheumy, you probably should find a different one. However, the Internet is a great source of info as well, and it can give you a starting point from which to question the doc. I'm wishing you my usual wish for all of us: less pain and more energy! And also: peace!I never had any numbness or extreme swelling of any extremities. My symptoms were typical PMR such as shoulder/thigh pain & weakness, flu-like feeling, low grade fever. My body would stiffen up so bad at night while sleeping that I would cry out in pain when trying to turn over. My pain would get better around 10am but the symptoms would all return again around 4pm. I think moving around makes things better.

My symptoms started with off and on feeling unwell. Twice I went to my PCP with flu-like symptoms and lethargy but he could never find anything wrong with me after running tests. Then it seemed like overnight things got really bad and I was dx'd with PMR and placed on 15mg prednisone, I felt relief within 24 hrs. My right shoulder had gotten so bad that I couldn't my arm without pain and this took a little while to clear up but I think it had gotten so inflammed that it needed time to heal.

It sounds like you have an auto-immune disease that the steroids have helped but it doesn't sound like PMR. I think I'd be checking out another rheumatologist. Did this rheumy test you for other auto-immune diseases such as RA, lupus or lyme? If not I'd be requesting some further investigation.

Good Luck and keep us posted!

HI Whatever,
I also had the shooting electrical pain, but it was during the night; any time I moved I got these electrical pains down my back! It was so scary. That occurred for at least 6 months before I was diagnosed with PMR. You're the first person besides me who has mentioned this symptom, so that is interesting. For a long time I thought I must have sciatica, because of the electrical pain, and the feeling of pain, heaviness and clunkiness in my legs.

The swelling doesn't sound like typical PMR. I agree with russellcat, it might be something else, along with PMR. Or possibly the result of a drug interaction? Did the rheumy at the hospital do any blood tests? I would think that is how he came to the conclusion that you have PMR. Usually it's the blood test results--CRP and sed rate-- that are a dead giveaway to this condition.

I've found that the prednisone does not completely get rid of the pain, it will reduce it quite a bit and makes it easier to live with. At least, that has been my experience, but I didn't start out on a really high dose of pred--just 12.5 mg/ day. Maybe those who started at 20 mg did get complete relief.

Also, eventually you may notice, as many of us do, that the pain and stiffness are worse in the morning, and by evening you may even feel "normal". I don't know how many of the other threads you've read so far, but it seems like PMR has a mind of its own (to quote mrsUK) and goes away when it decides to! But at least it can go away--it isn't fatal.

I hope you can find a good rheumy. This forum is excellent; people are so responsive and understanding. Hopefully it will be a big help to you!

freesia2
freesia22010-11-13 08:04:17

When I was hospitalized the Rheumotologist showed up sometime around 6:15 a.m. on my third day there. I had been in a dead sleep due to finally getting some pain relief the evening before. It took the nurses quite a while to wake me and I wasn't overly coherent when he showed up. He asked a few questions, said it was PMR and left at 6:30 a.m. I remember his asking questions that sounds like he was checking for GCA also. I'm not aware that they tested for anything else. My sister had stayed with me that night and was the one hearing what the Rheumotologist had to say.

Before the Rheumotologist showed up a neurosurgeon had been in to see me (they ran an MRI to rule out spinal damage). It was either the neurosurgeon or the floor doctor who ruled out lupus - but I don't know why. The neurosurgeon indicated he could put me on steroids which would "knock this out of me" but then we wouldn't know what the actual cause was - he wanted the Rheumotologist to see me for that diagnosis. I'll check with family members that were with me at the time to see if they recall more of what the neurosurgeon said.

I do believe it is auto-immune - but didn't know what other diseases to check on to see if the symptoms more closely fit. Your answers will give me a few things to check into.

Thanks.

Hi Whatever,

I hope your family can fill you in on what the doctor said!

If this is PMR, then steroids are not going to "knock this out of you" if by that, the doctor meant "cure" it.....the steroids just make the condition easier to live with until it finally decides to go away. Unfortunate, but true. The good news is that it can go away!!! Hi guys!

PMR can "come on" overnight, you go to bed fine but can't get out next morning! Pain and stiffness reduction when you go on steroids in PMR should typically be about 70% within 48 hours or so. Some joint pain may take several weeks to reduce to a "happy" sort of level. Many patients never manage total freedom from pain, the idea is to be pretty much comfortable at the lowest possible dose of steroids that allows that.

Before diagnosis I had swollen feet and ankles and my hands were a bit puffy too and that only happens now when I try to reduce the steroid dose.

Last week a friend was telling me her rheumy drew 3 circles which overlapped with 3 different autoimmune diseases, one in each, lupus, schleroderma and I think the 3rd was PMR and told here that the overlapping bit they designated "mixed connective tissue disease" and that's where she would put her. She has Reynauds syndrome and swollen and numb fingers if she gets even slightly cool, stiffness and the FATIGUE! She manages with no drug therapy but there are no real PMR stiffness issues there.

There is another forum at patient experience uk and you will find descriptions of the level of pain lots of people experience even on steroids - the mayo clinic thing is correct in saying that if you don't get considerable relief with steroids within a few the diagnosis should be checked out but it isn't written in stone and if you were really bad at first then 70% of a lot still will leave some pain! You will also tend to get pain if you do too much because you feel so much better - pace yourself, rest and don't try to force yourself to do too much.

Good luck and keep in touch,

MrsE

BTW - I too had shooting pains in finger joints - but thank goodness not in my back!!

Today was the first step down in the Prednisone from 20 mg to 17.5 mg. Left hand and foot are now swollen and have a lot of pain. I'll have to see if it gets better over the next few days - or its a call to the Rheumatologist.

Its only been a month since this thing hit me and I'm going crazy - I don't know how those of you who have dealt with this for years are still sane.

Whatever - It's probably because you've been dealing with PMR for only a month that you feel like you're going crazy. It really does get easier. It's especially hard if you've been healthy most of your life, because you start grieving for the active life you once had. But it's not so terrible to slow down. I used to have only one speed - fast! Now, however, I can rev things up only occasionally and not for long - but I've actually learned to like my new pace. I was diagnosed 10 months ago and started on 40 mg of prednisone. I'm now down to 8 mg - plus 2 Darvocet a day to keep me comfortable. The same thing definitely does not work for everyone, so you and your doc just have to find what works for you. I continue to wish everyone less pain and more energy - my mantra!I am also newly diagnosed with PMR, and I'm only 45 so both my hematologist and internist were hesitant at first to call it PMR. I do have the classic symptoms, though, and tested negative for lupus, RA, cancer, etc. My symptoms started with a severe headache that lasted almost a month and a sed rate that climbed to 123. Just a few days before the hematologist decided to put me on a low dose of Prednisone (10 mg), I started having severe hip stiffness in the mornings and constant hip pain. The Prednisone immediately took the headache away and has made the hip pain manageable, but my worse symptom now is muscle contractions/cramping. I have to be extremely careful moving certain ways or I will get a sudden muscle contraction that is almost unbearable - sometimes in the upper inside region of my left leg, sometimes the top of my right foot, sometimes my side, etc. I never know when it's going to hit. Does anyone else suffering from PMR have problems with muscle contractions?I've had two bouts with PMR. They came on suddenly, as you describe. I've had nothing like the degree of swelling that you have. Nor the electrical shooting pain.
Also, Prednisone worked quickly to relieve the symptoms.
I would question the diagnosis, but then, PMR is quite variable in its manifestation.
The internet is a good place to learn. I spent months googling everything I thought was relevant. Your doctor doesn't have enough time to spend with each patient, so it helps to research it on your own.
I too have the same symtoms ie, sore hips , shoulders, muscles , right hand numbness etc. This is my second time around with this and it is far more painful this time. All blood work to confirm PMR was negative and now I going to go to a Rheummy. It is very perplexing when all the symptoms point to PMR but the tests don't back it up. Tests also neg for RA. Trial pednisone pack was very effective in that in a matter of days I felt great. When that was over it all came back last Monday. I am at the point of being debilitated and I know that means prednisone for a long time. Very depressing. Good luck and know that you are not alone.

Hi All

Can I suggest you visit www,pmr-gca-northeast.org.uk and under Useful Medical Information read the diagnostic procedures for both GCA and PMR issued by the British Society of Rheumatologists in June 2009.

It is quite possible for PMR to be diagnosed without the inflammatory markers. They also list the exclusion tests.

Please also ask your medics to specifically do a Vit D test as Vit D deficiency can cause exactly the same pains as PMR. The test should be done as part of the exclusion tests but sometimes gets overlooked.

Good Luck.
I know at first it seems overwhelming we didn't choose to come down with this life altering affliction but its here and so are we and so we carry on its a great thing to get a pain free nights sleep and to be able to do the things that are an everyday part of your life without too much discomfort as with any chronic condition there will be bad days and limitations you didn't have before but what are the options its gets better - some days better than just tolerable at least there is no long term damage to organs or joints there is a depression aspect to this condition please don't take lightly I remember the morning after my first dose my pain was dimished about 60% I was reminded of Martina mcBrides song wake up laughing and I modified it to say wake up living!! I am very grateful to all those I have been able to get advice from because it can be frightening and upsetting to deal with all of this without guidance good luck!!!I've been out of circulation for a while (nothing nasty - just been away!) and seem to have missed the rest of this thread since my last post. So I hope this isn't too late/redundant or anything.

Denoon - there are no blood tests that can "confirm" PMR. It is a clinical diagnosis on the basis of symptoms and the other possibilities being ruled out. Just because your ESR and CRP are normal doesn't say you don't have PMR. In cases of doubt the response of the symptoms to a trial dose of 15 to 20mg prednisolone is quasi diagnostic. Reduction in symptoms of about 50% or better is highly suggestive of PMR. Anyway - if it works they shouldn't knock it if they can't come up with anything better! Maturity onset rheumatoid arthritis can also present in the same way except there is no joint damage as there is with RA. And steroids are used there too.

I, too, responded as dramatically as you did to pred but the rheumy was sceptical - mainly because he didn't listen to what I told him. The GP was happy and I've had a year and a half almost pain-free and able to live a normal life with only minor adaptations as a result.

all the best, EileenH

sdouseley - how is your magnesium level? I got cramps unless I took magnesium regularly so it might be worth a try. Here in the Germanic part of Europe that is the first thing a pharmacist or doctor will ask if you complain of cramp.

And I had some trouble with cramp and feet and hands swelling - sometimes my feet felt as if they were going to burst! The cramps were often in my side and back - I assumed it was part of a long-standing back problem. In retrospect I think the back problem was part of the PMR.

MrsE