new member with several questions | Arthritis Information

Hi, I'm new to this forum and would appreciate any helpful advice! I've been dx'd with degenerative disc disease, osteoarthritis and facet syndrome. Have had lumbar & cervical fusions along with many types of non-invasive procedures over the years.

I haven't been dx'd with PMR but plan to speak with my pain management doctor at my April 27 appointment. I've had chronic pain for 8 yrs now and am on several medications for this but my pain is changing and is not being controlled and after reading and researching about PMR, I'd say I meet the criteria quite well.

My symptoms are severe muscle aches across my shoulder & hip areas, extreme morning stiffness that makes it hard to get out of bed or walk, pain at night that wakes me up and makes me cry out when trying to roll over in bed. My left arm and shoulder area is very sore.

My questions are before starting on steroid therapy: Did any of you ever have flu-like symptoms like overall body aches, chills or the feeling of a low grade fever? Did you have flares or exaggerated symptoms at times or after a medical procedure? Did your symptoms get better during the day only to find by afternoons they got worse and continued to get worse through the evening?

I'll stop with the questions for now but wish to thank anyone with some answers. I've been reading on this forum for some time now & have found alot of good information and the way everyone treats one another makes me comfortable joining.

russellcat

I do so hope you are wrong, but then if you are right, its worth knowing then you can deal with it.

In answer to the para startin My Questions, the answer to them all is 'Yes'. Some have some of them, some have all of them, and some have others you do not mention.

visit www.pmr-gca-northeast.org.uk

read it all and also follow the links.

Good Luck and come back and tell us all how you got on.
Sorry to hear how long you've been hurting. On your visit to the doctor, if he/she doesn't prescribe 15 to 20 mg prednisone for several days, ask for it. The best indicator of PMR is that that dose of pred will give you vast relief in from one to several days. You can then start on a pred schedule that slowly reduces in amount as the pain reduces.

As one of our ladies noted, PMR is the villain, not prednisone. Good luck!

[QUOTE=russellcat]<snip> My symptoms are severe muscle aches across my shoulder & hip areas, extreme morning stiffness that makes it hard to get out of bed or walk, pain at night that wakes me up and makes me cry out when trying to roll over in bed. My left arm and shoulder area is very sore.[/QUOTE]
These are classic symptoms of PMR. My symptoms were nearly exactly the same. The best I felt all day is when it was time for bed. After about 2 hours of sleeping - and I tried rolling over - the pain would wake me up. The absolute worst was first thing in the morning where I could barely get out of bed and dressed.

Thanks so much for all the replies. I've read pretty much all the web has to offer as far as information but find that the UK seems to be on top of this better than the states. I'm in the United States.

Two weeks ago I had a procedure called radio frequency ablation in my lumbar spine which is where they place a needle into the nerve, then heat it up to deaden the nerve, thus stopping pain signals to the brain. The day after my procedure I started getting chills that turned into a 102.2 degree fever, within 12 hrs the fever broke and was done. On other occasions I will feel like I have a low grade fever and feel ill for a week but my family doctor couldn't find anything wrong even through bloodwork and urine tests. The fevers have been going on now for several months, off & on, and this was unusual for me. My pain has changed too, definately matches the PMR symptoms.

I will let you know what my Pain Management doctor has to say tomorrow. Hopefully he will give me steroids to try for 2 weeks since I already have another appt. scheduled. I have had two rheumatologists dx me with fibromyalgia in the past but the symptoms never quite fit and the lyrica, muscle relaxers, nsaids, cymbalta that was prescribed never helped. I am on strong pain meds now but see little relief.

Wish me luck!!!

I, too, had low-grade fevers. Some days I just spent on the couch, but I almost always felt better in the afternoons/evenings. My Sed Rate was 83! No wonder I felt so badly. Right now (9 months into PMR), I'm pretty well controlled on 5mg prednisone, but am getting other things (ocular migraines, Raynaud's). Some days it is almost amusing to see what has popped up next.russellcat

PMR can and does occur without raised markers ie ESR and CRP in the blood test.

BSR diagnostic guidelines state this quite clearly.

Good Luck

BSR and BHPR guidelines for the management of PMR

http://rheumatology.oxfordjournals.org/cgi/content/full/49/1/186

RickF2010-05-14 20:10:23Thanks for all of your replies! I did get the dx of PMR from my pain management doctor but with reluctancy. I have so many other arthritis issues going on that it is hard to tell which is which sometimes. She started mentioning fibro again which I don't think I have and of course they will lose money by not doing all the injections. I was scheduled for injections in my shoulder but the steroids has helped it so much the injections were canceled.

At first I was started on 30mg for 3 days, 20 for 2 days then down to 10mg of prednisone until next visit 4 days later. Felt great for about 6 days then symptoms started coming back. At follow-up visit the doc upped me to 15 mg daily until I see them again at the beginning of June. I have an appt with a rheumatologist on May 27th and will hopefully get more help with the prednisone scheduling. The 15mg helps but not enough and I think I need a higher dose for a month or two to get the symptoms better controlled.

So far I'm not having too many symptoms from the prednisone and am taking it all in the AM but I do notice that by afternoon I am feeling extra stiffness and may discuss splitting the dose with the rheumy. Also, does the prednisone make any of you feel anxious? I feel rather wired up lately and think it may be the pred.

Hi Russell,

I think when you see your Rheumatologist later this month, he/she will be able to help you more. If you do in fact have PMR, the dosage is usually higher for awhile - (one month to six weeks) until muscle inflammation improves. This can be verified with followup blood tests (ESR and CRP).

In the UK, patients are told to take their Prednisone (or Prednisolone) in the morning. Here in the US there are some patients who take it twice per day with the dosage divided up in half. That's the way my Dr. (Rheumy) wants me to take it. Says it will help me feel better later in the day. But... I noticed I had some trouble sleeping through the night at times. When I was on 20mg, I took 10 mg after breakfast; 10mg after dinner. Now I'm on 15mg and take it 10 and 5.

If you haven't read 'Elliott-USA' story yet, you should. Very informative and somewhat entertaining. Here's a link:

http://www.pmr-gca-northeast.org.uk/stories.php?id=9
If it is truely PMR that I have I am part of the 20% of the population that have normal blood test results. Other than my B12 being a little high, I don't show any inflammation. I've been tested for Lyme, Lupus, RA, you name it and I've been tested for it.

I've had Chronic Pain since around 2000 since my first torn annulus (the lining of the disc) at L-4/5 showed up. Since then I've had two left knee surgeries for torn meniscus plus fusion surgeries at L/4-5 & C/5-7. I have MRI's showing the osteoarthritis in several areas of my body and another bulging disc. But when the other symptoms of PMR showed up life became unbearable even with all the pain killers available. I normally have a high pain tolerance but this was totally different that's why I got on the web and started searching until I could come up with an answer. All the doctors want to do is poke me with more needles and give me more pills.

I will let you know what I find out at my appt with the rheumatologist.

I'm also in the US.

Hi Russellcat,
Just to say I hope you get some clarity when you see your rheumatologist and doctor, and following that some relief from your symptoms.
Yes, I was definitely "wired up" on 15mgs of Pred, though it was a feeling that gradually wore off and I could feel quite "down" until I got my next "fix".
I think your original Pred reduction schedule was maybe a bit too quick.
Last year I attended an international conference of rheumatologists as a patient representative; they were discussing the setting up of clinical trials to find new, more user-friendly versions of Prednisolone, and there was much discussion about the merits of a high dose followed by a rapid reduction versus a lower initial dose followed by a gradual reduction. In favour of the former was the fact that the total amount of Pred prescribed tended to be lower than when the reduction was a more gradual one. However the incidence of flare-ups was higher with the rapid reduction method. And the rapid reductions they were talking about were not as extreme as those that you mentioned.

Best wishes and Good Luck My symptoms have been very similar to yours, except I never had the flu-like symptoms with fever, etc, that many people have. I know that the flu-like symptoms can definitely be a symptom of pmr.

In my case, I had severe leg stiffness and soreness as my main symptom. It was hard to get out of bed in the morning and then within 2 hours my legs felt all heavy and stiff, and even lying down didn't relieve the pain and heavy feeling. So weird! Since taking the prednisone, the heavy feeling in my legs has gone away and not come back.

Like you, I feel better, not so crippled, in the afternoon, and my best right when it's time to go to sleep! I was diagnosed in Jan. 2010. For months before diagnosis, nights were agony--every time I tried to move I wanted to scream, and I got strange nerve pains up and down my back, with a sort of muscular paralysis when I would even think about shifting positions. I now take 10 mg pred per day and I notice lots less pain and stiffness during the night and in the morning. I've been on this dose for 2 weeks and the improvement has been very good.

I hope you are doing better now!

Take care,
freesia
freesia2010-06-22 20:05:15Had my 2nd appt with new rheumatologist yesterday. I have been on 15mg prenisone for the last 4 wks along with methotrexate 7.5mg once per week, I am also taking folic acid daily. So far so good, no bad side affects from the mtx and the jittery feelings from the steroids is better. I was having some achiness returning in the afternoons at my last visit a month ago so she suggested I split the pred 10mg in a.m. with 5mg at night. This did help.

Starting today I am reducing the pred to 10mg a.m. with 2.5 at night for 2 wks then 10mg a.m. with 2.5 every other night for 2 wks. After that I will try only taking 10mg in morning with none at night. She did say that if I have any problems to call her office. She is leaving the mtx where it is for now but may have to increase it if I start having issues. I also had bloodwork done to check my liver #'s due to the mtx (they were good) and will have them checked again in 5 wks. Return visit in 6 wks.

I'm really glad I went to the rheumatologist for the steroid reducing. At my last visit to my pain management doctor, she was ready to drop me to 10mg daily already. The last time they reduced me quickly and the symptoms came back with a vengence. I don't think they have a clue as to how to administer steroids for PMR. I returned the script and reminded them that a rheumatologist was handling the PMR.

I have another visit with my pain management doctor this coming Monday and will keep them updated with what the rheumatologist suggests. Maybe they can learn something from this. Reducing my pain meds is still on track. I know with everything I have going on with the arthritis in my spine I will need some type of meds for pain probably for the rest of my life but the extended release, high dose narcotics were making me a zombie and I just didn't like it. I couldn't sit down to rest, read or watch a movie without falling asleep. Even before the PMR showed up, I never really noticed a great reduction in my pain levels with them either.

I have filed for SSDI and have to be careful as to how this is all handled. I can't let it seem that I am not cooperating with my doctors or following orders. But at the same time I want some quality to my life and be able to function mentally.

Freesia, I know what you mean about the nights. Mine were the same, where I couldn't turn over without screaming in pain. Just awful. I'm glad you've also gotten some relief. Good Luck and keep me posted on your follow-up visits. I have no one to talk to about this but the people on this forum. What type of doctor are you being treated by?

Hi Russell,

Glad to hear you're doing better. I agree, Rheumatologists seem to have a much better handle on the treatment of PMR. My internist (GP) and endocrinologist (for Thyroid) don't seem to get the picture. Both thought I'd be off Prednisone in three to six months. I tried explaining to them that it takes quite a long time to taper off so PMR doesn't return. Of course it still can for some people.

I'm doing pretty well on 12.5 mg Pred now (7.5mg in AM; 5mg in PM) after dropping from 15mg (10am - 5pm) for six weeks. I started on 20mg after being DX'd (10am - 10pm). Seems my Rheumy has quite a bit of experience with what works for his PMR patients. When ever he drops my dosage, it's after blood test results. Then he says if you have any problems, call me as I don't want you to get back to major muscle inflammation. Interesting to note that your plan is to go from 12.5 to every day to 12.5 every-other-day (taking 2.5 every other night). Maybe the Rheumy is planning a similar approach for me. We'll see.

Good luck with the reduction. Hi Mrs. UK,

Yes, I've read Ragnar's story, printed it out, showed it to my Dr. It's very helpful. Here's a direct link for anyone else looking for it:

Ragnar's Story
http://www.pmr-gca-northeast.org.uk/stories.php