polymyalgia rheumatica forum

Hello Janice. I was diagnosed almost a year ago, having very severe pain in shoulders and both legs. A number of blood tests over a few weeks confirmed it, although the doctor was keen to eliminate a lot of other conditions first in case the pain was masking something more serious.

I am 70 years old but consider myself to be very active and fit. The speed at which the pain appeared surprised us all and I was having to walk with a stick almost immediately, such was the pain at the top of both legs. I was put on prednisolone immediately, daily dose of 20mg with the target of getting this down to a maintenance dose of less than three mg daily ASAP. I was amazed that the pain virtually disappeared within 48 hours and I have has no recurrence so far. 

After 10 months I am on 6.5 mg daily and am trying to reduce at the rate of 1 mg approximately every 10 weeks although I have found it better to go down in 0.5 mg steps.  I have blood tests at that frequency to check inflammation and also calcium levels. I don't know about you but I was advised that steroids can cause osteoporosis especially in women, so I am on a weekly 70mg tablet of Alendronic acid and two daily Chewable calcium tablets to offset the steroids. The calcium acid tablet is fraught with side effects and you doctor needs to make this really clear to you.

Overall the treatment has worked fine, although I will probably be on prednisolone or another 12-18 months.

Hope this was of some help

Ron Smith

So sorry you have this I was diagnosed three months ago. I cannot take steroids I guess I am gonna be searching for natural remedys ...Hopefully you'll feel better soon

If any one cant take steroids I would love to talk you....

Hello Janice & everyone! I've been dealing with PMR for the past 3 yrs on a decending prednisone regimen - from 20 in the earliest days to 10 and now down to 1.5 mg. I'm now in the midst of a major flare but hate the thought of returning to 10 mg after slogging my way down to 1.5! As eager as I am to get off this drug & kick start my adrenals the pain is too dibilitating and exhausting. My MD wants me to return to 10 and decend from there. I suggest starting at 5 & going up slowly if necessary until I reach my comfort zone. He has agreed. This "self limiting" condition is ghastly!!!

My name is Jeff from Australia and I have recently been diagnosed with PMR. It likely started around December 2020 although may have been lurking around earlier. From Christmas, my joints started to become painful and stiffen, particularly in the hips, knees and shoulders. It eventually progressed to elbows and even my bicep muscles. I saw my GP on Jan 21st as the stiffness and pain were starting to impact my routines/life. Due to the difficulty of getting into my regular GP again I went to a “walk in” GP to have blood tests done. These came back with a slightly high CRP (55) and as we were waiting on other tests it was another five days before I was called back in for them. That GP said he didn’t know what it was so I said well are you saying I have to live with it and he shrugged his shoulders. Needless to say I won’t be seeing them again. In the meantime I tried two acupuncture sessions to no avail. This eventually led to finding (thanks to my wife) information about PMR and pretty much self diagnosed myself. At this point I could barely walk and couldn’t dress myself. I printed a Mayo document on PMR to take into my GP on the 8th February appointment in case she didn’t come up with the possibility of PMR. Fortunately she did and put me on Prednisolone, 50mg. Within five hours I was close to walking semi normally. As I had been on Prednisolone many years ago for an unrelated issue I was aware of its hazards. Although the GP said to take 50mg for three days I decided to drop the second days dose to 25mg and phone the doctor. I already had the dosage and weaning schedule so I suggested to her to start the following day on 15mg for three weeks then 12.5mg and so on. Into my second week on 15mg now and I am getting up with only slight discomfort in hips and shoulders for the first hour or so. I am increasing my vitamin D3 and still taking Caltrate bone and muscle daily with vitamin B12 twice a week. See a rheumatologist in June as that is the earliest I can get into one. I will also talk with the GP regarding taking Fosamax. Thanks for bearing with me with the long post and trust I can contribute here and my experience whilst very limited is of some help.

Hi, I'm new to the forum, I'm being treated for PMR by my gp 15mg of prednisolone, I've been taking for 9 weeks and have just got and appointment see a Rheumatologist for May 21st. I keep reading that it affects shoulders hips a legs, at the moment it's affecting my shoulders wrists fingers back and groin area , the steroids don't normally start to ease things for 4 to 5 hours and I can't walk properly at all and in quite a lot of pain, my gp said 15mg is the limit that she can prescribe, it doesn't seem enough, it seems I have to wait another 2 months to see a specialist, does this sound ok or should try and push Gp, BTW my symptoms started in mid to late November and seems to be getting slightly worse every week.

I was diagnosed with confirmed GCA on March 22, 2021. I was placed on 1000 mg a day for three consecutive days (infusions) I was then place on 120 mg a day for 2 weeks, and have been gradually titrated down this past week to 50 mg. I am new to this and have all the common symptoms of steroids, insomnia, weight gain, etc. and understand that part. My question is since my GCA is controlled, WHY do I still feel like death. I've lost the majority of my muscle mass. Prior to this, I was strong as a horse, played competitive tennis well into my late 60's, but now I can't even get up when I stoop down without help. I am exhausted, have zero stamina, and I don't understand what's going on. I'm seeing 4 specialists, but have only seen my new rheumatologist one time. My ESR reached 121, and he was more concerned with talking about the fact that he was more worried about my having cancer. He did a huge battery of testing and labs and thank God, I got a call from him last Friday saying that cancer was ruled out. Can any of you guys shed any light on this. I don't have my follow-up with him until May 24, and I need help now. Thanks so much

I have also been very recently diagnosed with PMR at quite a young age (for the disease anyway). I was put on 15mg of predisnolone for 4 weeks, reduced to 12.5 for 4 weeks and am now down to 10mg. I have definitely noticed an increase in pain since reducing to 10mg and I don't know if my body will get used to this and it will calm down or whether my doseage needs to be upped. In terms of side effects there have been good and bad. The bad is the weight gain. I have put on betewen 7-10lbs in about 6 weeks which has been a bit of a a shocker especially after putting on some during lockdown! It is also difficult to lose but I am trying to understnd about the weight gain and adjust my diet accordingly. Other than that the side effects have been good. I am in a much better mood, have more energy, wake up earlier and am a little bit hyper which means I am getting things done. I actually feel really good on it! At a point where I probably needed to go on HRT, this seems to be doing the trick instead! I am worried it will not go away though and I will have to be on steroids or medication for a very long while/rest of my life. Before this I was relatively fit and healthy and on no pills at all for anything, so to suddenly be taking 5-6 a day is a bit of a shock. It worries me that the pain has increased now my doseage has reduced. I was hoping that it would just keep going away.

• hi janice i was disgnosed in may and was in a lot of pain in my neck shoulders jaw and head.untill i took steriods .that went then i got lots of pain in my lower back hip etc i am getting really down now as my partner is at work all day and am stuck in cornwall.while my family who are resllt supportive live in plymouth.

Hello,

I've been off this list for three years and have recovered from PMR without prednisone or any other medication. I had the classical symptoms of PMR and CGA: constant muscle pain and stiffness, inflammation of blood vessels in my scalp, weight loss, and fatigue. I developed chronic disease anemia, skin rashes and had problems sleeping. All these symptoms have now largely resolved.

I had the option of going on cortico-steroids or tocilizumab (Actemra) but declined because of the well-known and potentially serious side effects of long-term use of these drugs.

I found rest, good nutrition, moderate exercise and hot soaks in the bath or shower before bedtime to be helpful.

I'm posting this primarily for those who have been recently diagnosed who are wondering how long the condition will last and what treatment options are available. You should follow your physician's guidance, particularly if tests indicate that the blood vessel infection that causes CGA is persistent. It can spread into vessels that supply the eyes and result in permanent blindness. In rare cases it can attack large blood vessels and lead to cardio-vascular disease. Anti-inflammatory medications are required in these cases.

However, you should also discuss the no-drug option for PMR with your physician, with the knowledge that in many cases the condition is self-limiting and will resolve in two to five years. This varies between individuals and women tend toward more severe and longer-lasting cases. Take the time to do your own research and be prepared to ask your doctor good questions. Don't feel compelled to enter into a treatment protocol that you aren't comfortable with. Good luck!