READ THIS EVERYONE | Arthritis Information

This is one of the links that Margaret posted here a while ago after one of her google-fests. It is really worth reading so please do. I found I had to download the readable version and print it out to read easily and to see the tables properly. There is a HEAP of excellent info and really is very very worthwhile, being a detailed survey of cases seen at the Rheumatology Unit of a major British medical facility.

www.jbjs.org.uk/cgi/reprint/53-B/4/701

Sorry, the links I post are never clickable.
read this link chico, very interesting, however, whenever I read anything on Pred, the vision aspect comes to be my most focal part and one that I have experienced while using Pred....and has frightened me away from that particular treatment for PMR.....tks for the info, hope others read it as well..

have a good one

rose

I took 20mg of Prednisone to begin with for a week and then dropped to 15 and then I started lowering it myself. I got down to 5mg by April and then the rheumatoligist set a schedule to lower it. I had glaucoma and my eye pressure did go up, so I had to get off of it in a hurry. My eye pressure has not gone down after being off of it for six months and my doctor thought that I will need to have the lazer surgery again.

I didn't like the part of the article that said that people not treated with prednisone had the symptoms longer, for up to four years. I'm on my 15th month and was thinking that pretty soon it might start going away.

It is a good article and good to see that all of the case subjects did get "cured" of the disease. Mary

Well, as one who has chosen to NOT use prednisone, I also didn't like the bit about untreated PMR taking longer to resolve than untreated, also the bit that said "because there is often great difficulty in establishing the presence of vasculitis, it seems sensible to prescribe corticosteroids in almost every case". The only time, in all my reading about PMR that I have seen this stated.
However, they do say that in 5 of the patients in their trial, steroids were not used and their disease settled in 12 months average.

For a completely different angle, I read another long article on e-medicine (by Ehab R Saad) that is very useful. It states "Polymyalgia Rheumatica is selg-limited and often remits in 1 - 3 years. Untreated patients, however, often feel unwell and have an impaired quality of life". No mention at all of them being at risk of developing GCA. About PMR patients, it says "Patients should be monitored for symptoms or signs of arteritis after treatment initiation (with prednisone), because LOW DOSE CORTICOSTEROIDS DO NOT PREVENT PROGRESSION OF PMR TO GCA".

Under the heading Complications, it says "Generally, PMR is not associated with serious complications". And about relapses "Relapses are common and may occur in up to 25% of all treated patients. Arteritic (GCA) relapse in a patient who presented exclusively with PMR is unusual".

At the end I like what he says "Inform the patient about the potential benefits and risks of corticosteroid treatment, and encourage the patient to participate in choosing the treatment plan".

You should be able to find the whole article by googling www.emedicine.com and then searching for polymyalgia rheumatica: Article by Ehab R Saad.

After reading all these articles, I am still inclined to go off the presnisone. My main worry about this course of action was (and always has been) concern about increasing my chances of developing GCA, but in fact, I have read hundreds of articles on PMR and although they all discuss GCA, I have never seen one that actually states that low dose steroids for PMR help prevent GCA. The Oxford article does say "Corticosteroids dramatically relieve the myalgic symptoms (of PMR) and also suppress the artieritis...", but I think they are talking higher doses, surely, such as at the beginning of steroid treatment for PMR. The low doses we are on for most of the long duration of treatment (ie 10mg and less), are probably not doing anything to suppress any development of arteritis, according to the e-medicine article.

I am with you chico, I gave up on pred and have no regrets. I would rather take my chances without pred and see what happens. I feel good after being off of it for 10 weeks. I can't wait to get my blood test back because they were higher then when I was diagnoised with PMR the last time I was at the Dr. My Dr is not aware of I went off. I guess he will find out at my next visit. GeriGeri, I hope you continue to feel well. I don't know how unwell I will end up feeling without the pred, that's yet to be discovered. I hope I can manage without the pred, I will do my best. But I know that others with PMR have MUCH more pain and disability than I have had, and I am pretty sure that if I had the levels of pain that many have, I would take the prednisone until I really didn't need it anymore. Also, if I had a really high ESR I would probably continue on with it till the ESR went down. Not sure about that. I am one of the oddballs with normal ESR from the start. Was your ESR high Geri? Smartie? Rose? Mary?

I like what Saab wrote in his article about doctors giving their patients ALL the information about the benefits and dangers of prednisone and allowing them to participate in choosing their treatment plan. I feel as though I have had to discover everything I now know about PMR and prednisone myself, and really have only this forum as a place to talk it over with others.

I would not want to be thought of as irresponsible or seen to be encouraging others to do as I am doing and go off their prednisone! What I am doing is not necessarily right or good, and could end with me scrambling for the pred again! I would urge anyone to talk with their doctors before making any changes to their medication at all. I have done this, and am seeing my doc again next week. Oh Geri, you are a rebel, not telling your doc! Lol!

I am right there with you Chico. I feel exactly the same way about it. I saw a new rhumy who is very good. I will listen to him but i gave him an earfull about how I felt about the pred. He wants me to stay on my 5 mg until i see him again next week. He ran a slew of tests i never knew existed. My sed is 47. If it was really high (or I was really old - i am 53) I would not argue about the pred. What knocked me off my chair is that my CRP jumped from 3.6 mg/dl to 45.6 mg/L .....is the measurement different between these two? Anybody know?

Just recently I lost the "excruciating" part of my pain...I dont know what happened but the screaming pain is gone. I am still stiff and have much difficulty moving around but it is much more tolerable. I used to have horrible upper back pain and it has been gone since last week. I only take a pain pill once or twice a week. New doc put a stomach protector in the med so I dont tear up my stomach. I have been taking 6 - 7 grams of omega 3 (dha/epa) fish oil. I got the good stuff and keep it in the freezer. I got the liquid - it aint so bad. All I have read says that is one of the main weapons against the inflammation.

I will do what the new doctor says because he is top notch but i really want off and am going to do all i can to get to that point. My doc was worried about Lupus with me...so i have to worry about that for awhile. I kinda dont think i have it though. We did a stool sample to check for parasites...They are hard to catch but we will see what that says. Several of my white blood tests are up - i think that is common in PMR but I think it means that there is some battle going on with the whites either real or imagined. I have a couple of new symptoms for Doc that scare me....a sore in my mouth and my skin is kinda itchy like I am wearing wool clothes - no rash - just itchy. I am cutting down on my 2000 mg of vitamin c just in case that is it....Took a pain pill today so I can participate in a yoga class. Feels so good to feel normal. But I like the idea that it is my choice to take the meds. The non steroidals are bad for you long term also.

Smartie, My lab tests show the normal range for CRP is 0.2 to 0.9 mg/dl, which I assume means milligrams per deciliter or hundredth of a liter. Note that you quote 3.6 mg/dl and then change units to 45.6 mg/l, which I assume is mg per liter in the latter case. If you haven't made a mistake, then the second reading I would re-figure as 0.45 mg/dl (I just divided by 100) which puts it in the normal range. The normal range for ESR (sed rate) is 0 to 20.

Hope that is correct figuring and hope it helps.

My SED rate was 48 with diagnosed in April of this year. Then in Sept it went up to 58, that is when I decided to do the no sugar and anti inflamatory diet. I agree with chico, this is not for eveyone, going off of the pred. I know the pred helped me with the pain and stiffness. I just couldn't take being sweaty all the time and gaining the weight. I have lost 20# in the 10 weeks I have been pred free and I sure the sugar free diet has helped, because I loved sweats.

Please check with your Dr before going off of any meds and changing things around. Geri

When I was first diagnosed I had an ERS of 53. My main pain was my knees. I took the prednisone and that went away and when I went off prednisone, the pain behind my knees was gone and luckily has stayed away. My CRP now is normal.

I take aspirin, tylenol or napersun. It is so strange, if I take some of them for a few days, it seems to quit working so then I try the other and it works for awhile.

My main pain now is below my shoulders to my elbows. Feels like tendinitis, and sometime worse than other times. Mary

I really need to watch my diet more. I think too many carbs is the same as too much sugar.

About 10 years ago, I had about the same pain in the bottom of my feet and that lasted for four years. I am wondering if this will last as long. It wouldn't surprise me because my rheumatologist put me on methotrexate, because she didn't want me on prednisone very long. She said, "because the way your feet acted." My feet weren't as bad as this though. With my feet, they hurt when I stood up for a couple minutes, but they just didn't sit there and throb like my arms do.

I know it could be worse...like before the prednisone, so I am thankful that it isn't that way at least.

Thanks Bob....I wrote the measurements just like the lab report. The report for the result of 45.6 has a high marker on the report so I dont know what is right. I will see the doc next week so i can find out then but will go crazy until then.

I had shoulder problems a few years after I was diagnosed with RA, and thought it was related, also...until my doc finally ordered an MRI and we found that I had a torn rotator cuff. I had it surgically repaired and then went to PT, and my shoulder pain has completely resolved.

You might want to request an MRI of your painful shoulder...just to be sure it is RA, and not something more "treatable"