Should I suggest to my GP I think I have PMR?

Hi MrsO

the ibruprofen helps a bit, but I have to take 400mg every 8 hours otherwise I am in so much pain that I can not get out of a car or walk up stairs. I always in pain  even when i take the tablets but i can at least walk about. I do not have any swollen joints so do not feel its RA. My issue is the waiting list is months long to see a rheumy and i feel i cannot wait months. As i am only 50 the protocols say i should be referred toconsultant for  treatment rather than the gp starting pred.

My son has asthma and my mother in law had a brain tumour and needed steriods - they were wonder tablets, worked quickly and relieved symptons.

The physio has helped for my shoulders and neck - gentle massage, heat treatment and exercises. Unfortunately my legs are a different matter!

i will keep you posted.

Hi Carmel.

PMR is not the same as straight forward rheumatism. It is an auto immune disease which causes chronic inflammation of certain muscle groups throughout the body. Although it is a self limiting disease which does go into spontaneous remission, this can take on average from two to five years. During this time the inflammation levels have to be kept as low as possible to avoid permanent damage and currently the only way of doing this is long term steroid treatment. A few people have found that changes in diet can help them along but unfortunately not enough to avoid the steroid treatment. Are you a sufferer of this awful disease or an interested reader? Hope it's the latter! Take care, Debbie 

I ditto what MrsO says. Find a Rheumatologist who will listen to you and one who is familiar with PMR. Neither my Primary Care Dr, nor the 2 Orthopedists, nor the first Rheumatologist I saw knew what was wrong wrong, although the symptoms were pretty classic for PMR. I knew that when the first rheumatologist told me I had Fibromyalgia, it was the wrong diagnosis as none of my symptoms matched Fibromyalgia, nor did the OTC help, nor the Neurontin. I did some research and found a different Rheumatologist. Her website mentioned PMR as one of the diseases she treated, so I looked up PMR and I realized that the symptoms matched. When I finally saw her after 4 months of struggling, she put me on steroids for PMR and the symptoms disappeared within 5 days. Still had a frozen shoulder, but worked that out with gentle and gradual PT exercises.

Good luck!

Yes Carmel - PMR is a bit like lupus in terms of its cause. Often autoimmune disorders go into remission and PMR does usually go away eventually. However, as I have explained in response to another of your posts pred is not as evil as many people think and in the case of the related illness called GCA (giant cell arteritis) there is no choice: pred or go blind. 

No one has had any real documented success with diet alone although it can help reduce the symptoms. But believe me, when you are in a wheelchair and/or constant pain - the relief that pred brings is very welcome. There are very few of these illnesses that can be resolved through diet - whatever you may see on the internet.

Carmel - please refrain from posting such advice on forums such as this without at least looking into the subject and having some knowledge of what you are talking about..  Some of us are unlucky enough to succumb to certain conditions in spite of healthy diets and lifestyle.  Without treatment I was bedbound and in a wheelchair attending hospital appointments - it was only steroids that gave me back my life.....and kept my eyesight.  

Hi Mrs O

Thanks for your great post. The physio has been great at giving more movement in my neck so I could drive, but it has not fixed it. He wanted to refer me back to GP for RA test but I had that done in May so we tried some more sessions, 

When the pain spread to my hips and thighs I went back to GP and he found the raised CRP.

I suggested PMR to physio and he thought good fit. He explained that physio does not help because you should not have manipulation and deep tissue massage if you are a long term steroid user because the skin and bones can become fragile so there is a risk of fracture. Physio can, of course, teach exercises to help with stiffness. 

Ibruprofen and paracemtol help with pain but I have been taking them for nearly 3 months. I stopped them for 48 hours and was in absolute agony. I had so much difficulty walking, I had people asking me what was wrong. 

I am seeing neuro on Wednesday so can't wait, and I will be asking about PMR and if I can try some Pred!

Good luck with the neuro. I had to wait a few days to see the private rheumy as he was on holiday. I would lie in bed counting the days when I could be given steroids!! The rheumy gave them to me immediately having diagnosed PMR.  I still cannot believe the total miracle that happened. 

Thanks have read paper and looks good. I am just about to ring my hospital to see if they have a rapid access PMR clinic.

Please don't make a statement that is guaranteed to scare that isn't true. Corticosteroids have 82 listed side effects but noone gets them all and many get very few. Most of the side effects are associated with very high doses or very long term use and used properly and carefully pred is not as terrifying as many people would have you believe. I have been on pred for PMR for over 5 years - my weight went up but it has all gone now I am on a lower dose. I have no diabetes, the raised cholesterol is back to normal and no osteoporosis. Contrary to what you said, most of the side effects of pred are reversible when you reduce the dose or stop altogether. The exception is osteoporosis but there are other means of dealing with that. In neither PMR or GCA are you likely to be on high doses of pred for many years - some people take longer than others but with care most people are off pred within 5 years.

PMR and GCA can only be treated/managed using pred. Being immobile with PMR opens you up to many of the more common pred side effects so whether you use it or not you may have problems but you will be in pain with a very poor quality of life in the meantime. But PMR is treated with moderate to low doses of pred and you reduce to the lowest possible dose - mostly well under 10mg/day long term. In the case of GCA there is no choice - without an initial high dose pred you run the risk of going blind but then you reduce the dose. Since the long term effects of pred are not written in stone I'll happily take the risk if the option is losing my sight. 

I really have to agree with you Eileen and also the post by Mrs. O. 

Take the information to your doctor as most don't seem to know very much about it or are up to date on treatment. 

My first dose of prednisone was prescribed by my GP because I couldn't get into a rheumy for 2 months and she said we needed to do something to ease the pain.  It worked like magic and all the rheumy did is check blood levels and confirm the PMR.  He did know a little more about doses and decreasing although his suggestions didn't work well for me and I ended up using the method I found here on this wonderful forum.

As far as side affects.  EVERYTHING we do has sideaffects it seems. Have you ever read what artifical sweeteners  or asprin can do?? 

With the proper administration of the prednisone and very gradual decreases you can make it to a dose that is similar to what our bodies already produce.   At that point the side affects are minimal although, from personal experience, the nasty weight around my middle isn't cooperating quite yet. 

 

Supplements don't help GCA. The inflammation affects the optic nerve and will cause irreversible blindlness if left untreated. I saw my eye Dr with symptoms (turned out it was only the cataracts), although I feared GCA. He was pleased I was paying attention to my eyes and told me about a patient he saw with eye issues. She had had GCA symptoms and did nothing about them. By the time she saw him, she had already lost the sight in one eye. He was able to save the vision in other eye. HOWEVER,  the ONLY treatment for her was 80 mgs of Prednisone with an eventual gradual taper. There is no other medication for GCA. She was in hospital for this and monitored, so that any side effects could be dealt with.  I certainly don't love my steroids, but there is no alternative. Sort of like I don't like to fly, but to get there from here, I have to get on a plane. Eventually, I will arrive and get off that plane.

Supplements will not return blood flow to the optic nerve overnight - pred does. You are talking utter rubbish when you say lifestyle will cure it. 

The people on here are here to work WITH their doctors and take the sure road to not going blind. None of us want to be on pred - but I sure as hell don't want anyone to go blind nor do I want anyone else to go there.

Lifestyle has its role much earlier in life. What has been has been and is water under the bridge. Now we are looking at survival - by the time someone with GCA has read all your "research" they could be blind. Once one eye is affected the other can also go within days.

And something I do is NOT sympathise - I offer founded information to help people in a quandary. Heaven only knows where you found "loads of examples" - on the internet I assume, from people with the same agenda as you.