I've had the current bout of pain for more than 4 weeks now and it seems to be gradually concentrating around my right hip - front side and back. I'm trying to be positive and interpret this as a sign of some sort of progress. I'm not on Prednisone - yet - and would like to avoid it if possible.
It this targeting of my right side is a sign of progress, I may be able to hold off on the Prednisone for another few weeks and see how things go.
I've had other similar 'attacks' over the last 10 years. Never this long and always in the neck and shoulders. They usually lasted for about a week.
By the way - have any of you experienced this as a 'sporadic' condition with many remissions leading to relapses months later? This has not been a one-time event with me but I don't see any other references to this cyclic characteristic.
Thanks for any info on this aspect of this very mystifying disorder...
Carole.
That has not been my experience. I have had Polymyalgia for a little over a year. It began with pain in both hips, though the right hip hurt more than the left. But I also had pain in my shoulders (especially the left) and pain in the lower back. I was on prednisone for 8 months. I am now off and some of the pain is back -- but it is widely distributed.
Hello Carole
My symptoms over the years have been a relapsing remitting type, which has prompted my GP to investigate for MS as I was having a lot of neurological symptoms. My thighs in particular have good weeks and bad weeks but generally over the last 12 months or so the stiffness has more or less been constant. PMR was confirmed by the reaction I had to the prednisolone (almost instantly the pain started to subside and by 48 hours I was able to bend my legs and walk "normally"). I am still uncertain about the effects on the nervous system this disease has, as I have been untreated for such a long time. I still have some research to do.
Welcome to the site! I am so pleased that I have found some soul mates!
Love Judi
Hi Judi...
Yeah... Misery loves company! I'm with you there! ;-))
I see my Rheumatologist for the first time tomorrow. The blood test results have been faxed from my GP. At this point in time I'm still self-diagnosed from all the various symptoms listed for the disease and my personal risk factors. I've had several bouts of whatever-this-is over the past 10 years. Before it was always in my neck and shoulders and lasted about a week. This time it's all around my hips, my abdomen and up my back and sides and it shows little sign of going away - though it's much less severe than it was the first week (pure hell!).
I'm vary leery of Prednisone. I already have glaucoma and a mild case of osteoporosis and I've heard it makes these worse. My vet prescribed it for my dog when her allergies were very bad - and she practically lost control of her bladder and bowels! My father was on it for a long time and had very little good to say of it. It's powerfull stuff! If I can avoid it I will.
I'll keep you posted... Carole.
Hi Carole
I know prednisolone really wrecks your body. I've been on it for nearly 6 weeks and I have started the Cushing's syndrome - moon face, bloated abdomen - altered vision (no cataracts mercifully), hot flushes, metallic taste, dry hair, to name but a few! I must say that the diagnostic effect of the prednisolone reducing the symptoms of PMR dramatically did not encourage me to continue taking it but I have done so as I have GCA symptoms.
I hope you have a good visit with the rheumy. The prednisolone is awful but it is keeping me sane!
Love Judi
I was on low dosage of prednisone for 8 months. I started at 7.5 mg. a days which was enough to control the pain. I reduced by one mg. a month, until I was able to stop completely in August. The pains have returned (although much less severe), but the inflammation (as shown by the SED rate test) has not, which is good. However, I now have osteoporosis and benign fasciculation syndrome (your muscles twitch uncontrollably and randomly for no reason). I had a neurological exam and am fine. But I cannot help but think that the prednisone caused this. It does seem to be getting less severe as time goes on. My point is that my body reacted rather dramatically to the prednisone, even such a low dose. Everybody is different apparently, with many having almost no adverse effects. I do have a question: Americans seem to be given prednisone while the British people on the forum seem to get prednisolone. Are they of the same strength? When someone says they are on 10 mg. of prednisolone, is that equivalent to 10 mg. of prednisone? I could not find the answer to this on the web.
I am from Sweden and I get Prednisol. I Googled this word and got http://search2.drugs.com/search.php and also the text Prednisol
Prednisolone is in a class of drugs called corticosteroids. It inhibits processes in the body that cause inflammation. Therefore, the swelling and pai... As you see, they use both names. When we buy medicine in Sweden, we often get substitutes which have the same components if it is cheaper. Otherwise we have to pay the difference. This is to keep the public cost for medicine lower - doctors can favour a certain brand for instance. We have a maximum cost of Swedish Crowns SEK 1800 = $ 260. In the beginning, we get a lower discount and it gets higher and higher until it reaches 1800 and after that we have free medicine the rest of the 12 months after the first payment. We have also a max cost for visits to the doctor, medical clinic, treatments (incl X-rays, ultra sound etc) at SEK 900 = $ 130 a year.
Donīt you think that prednisone, prednisolone and Prednisol have the same active component?
Ragnar
Carole, I have some pain everyday, have never had a pain free day since it started over a year ago. Mine does cycle in that I will have maybe 5 really bad days.then it will be better for a while. I always have one area which is more painful than the others, but even that changes. For 2 months it was what I percieve to be a frozen shoulder, now it is my neck again. Haven't had any neck trouble in months til now. It's just a weird thing to try to understand, I think. Have a great day everyone.To all who have posted before me, I am also in pain every day, it seems to have settled in the lower half of my body hips, lower back, pelvic area, buttocks and legs. I have to take darvocet, one a day, in order to get through the day.............. if this is going to go away, I wish it would hurry up..............the fatigue gets to me also, do a lot of lying down and do not do half of the things I used to do. Went grocery shopping on Saturday and was an absolute mess.. I could not breath, was so fatigued, I could just about climb the stairs, spent the rest of the day in bed. Georgiana, It's something to whine about sweetheart. Don't worry about it. We are all in the same painful boat. I have Darvoset on hand at all times, and take one maybe twice or three times a month. The rest of the time I can make it with just the prednisone. Whatever helps us through this mess. People with RA and Lime Disease as well as PMR have written that PMR is much more painful. Just because it's supposed to go away doesn't make it any easier for us to live with. And like you said, the fatique alone puts you to bed sometimes. So, we can complain when we have to, and encourage each other on the other days. Who else in the world could possibly understand? I hope today will be better for you and all of us.Thanks to those who answered my question about prednisone and prednisolone. The pain and fatigue can certainly get you down. When I was on prednisone, I had many good days when I had no pain. But now that I am off of prednisone, I have moderate pain every day. When I first got PMR, the pain was much worse in the morning but then was better in the afternoon. Now I really cannot tell much difference. It is with me all day. Because I insist on exercising, I usually have a bad day after the exercise. But I believe that overall the exercise is good for me. I agree with Betsy. Whine away to your hearts content. Get it out of your system on this forum, because we all know we cannot whine to our family and friends all the time. We are happy to listen here.Adrienne,
Glad to know that you are off prednisone....which leads me to a question....If we go off prednisone on our scheduled taper and the symptoms are back, are we back to square one when we originally strarted the pred? Do the symptoms continue go grow? (I think you know what I mean?
On another post, I stated that my dose is at 10mg, which I have been on since 10/22,(7 weeks) in just the last 4 or 5 days, the pain and stiffness are back, whereas, I was pain free for the last 6 weeks.
I am looking forward to going to 7.5. I understand that the side affects, puffy neck, eyes,and tummy will go away at that dose...Can anyone confirm that ? I hope, I hope.
I called in sick today, first time in 3 years...I am trying to get our Christmas tree decorated.....ouch. I am hoping it will lift my spirits.
Wishing you all a better day!
Janet from Calif.
Janet,
Hi everybody
I'm beginning to wonder if I am tapering too quickly. I started at 20mg back in October and was on that dose for 4 weeks. Then went to 15mg but had to go back to 20 when I got a chest infection. Went on to 15mg for a week and now in my second week at 10mg. My legs are really bad, tonight my neck and right arm are bad (drove 170 miles today for work) and my eye is playing up again. I'm due to see my GP on Friday to get him up to speed on my progress. I feel like I never started the prednisolone, except I have the Cushing's symptoms to add to all the pain. Still, I am upright and breathing!
Hope you are all having a better day today.
Love from Judi x
Judi,Judi, Yep, you're tapering too fast. Well, there you go. There's your second opinion! Seriously, my rhuem says when your'e down to 10, you drop only 1 mg a month. I take a 5mg and 2 7 mgs. I'm went to 7 this morning. Still having some pain, but making it.
Georgianna, I agree. At 10 mg I noticed some difference in the puffiness. I'm glad to know 7 1/2 is the magic number. I expect to wake up gorgeous in the morning. You're right. Families don't really get it. They ask how you feel, but don't really want to hear it (again). It's not their fault. The medical community doesn't even understand why our muscles decided to turn to stone one day. That's what it feels like to me. I just turned to stone, and I didn't even turn around and look at Gomarah. Hmmm. That was salt wasn't it? Have a good day girls and boys. We have to hang in there and beat this hateful thing.
On a Swedish website I read that from 10 mg you can go down 1.25 mg every month until you reach 0. It also says that there is often a fluctuation. If so, go back to the next higher dose where you had no symtoms.
I myself had to go back up for the second time to 5 mg recently and now I seem to be doing fine. I have just been on a 45 minutesī fairly fast walk without problems. When my dose was lower I felt the fatigue some of you write about. I am male and 69. Started on Prednisol in June 2005.
Ragnar
Hi,
I'm new here. Have had PMR for probably 2 yrs. Only treated with 10mgs. of Pred. Never did get quite on top of it but was manageable. June of 06 I had ankle fusion so had to go off pred, but could only make it to 5mgs. Seemed like the pmr was tapered off, then I got the old familiar shoulder aching and hip aching. It took me off guard at first. Pred does help~if I could boost it up a little more, it'd be a lot better. Dr. said I could do that if it gave me some real trouble but only an extra half to a whole and only for a couple of days. Otherwise I go see him and we figure something out. I also have RA and RLS...do any of you know if the pmr can make the rls worse and vice versa? I'm in a lot of pain right now with the pmr. Seems to be more in my legs here lately.
Thank you for letting me say something about it too.
Blessings to you all and be well...
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