Hi everyone.
I'm brand new here, so sorry if I don't have all the acronyms down, etc.
My wife is a gorgeous wonderful 49 yr old woman, who, for the last 6 weeks or so, has been in a living hell (before that, quite healthy and active). She is weak, and stiff, muscles are beginning to atrophy. Started with stiffness in neck, progressed into the area where the fronts of her legs join her torso, then down the legs. Now her shoulders and upper arms are extremely painful and weak too. She can hardly do anything physical at all. Getting out of bed in the mornign is pure tears-in-the-eyes agony for her. Primary Care Physician referred us to Rheumotologist. Initial blood work PCP did showed high levels of inflammation. After initial physical exam, Rheumatologist suspected Polymyositis, but further blood work (muscel enzymes I think he said) looked normal, thereby pointing away from that. Today he said he suspects PMR although my wife (Donna) is a little young for it. So, he prescribed 20mg Prednisone twice a day, starting right now. And she's going for an EMG Monday. Also going to see an Opthalmologist and a Neurologist just to rule out other things. So, we'll see how the Prednisone works. Hopefully she'll feel better soon. Just wanted to share her story, and say hello. This looks like a tremendously kind and helpful forum, and I'm already thankful to know there is somewhere we can interact with folks who have been through this. Take care! Jim and Donna
Hi Jim and Donna. The prednisone will work wonders in just a day or two if it's PMR. It's a terrible debilitating disease. Most of us have cried from the pain...especially in the mornings. It is supposed to go away in 1 to 4 years. It will teach you patience. Your wife is young, but I believe this forum and others pretty much prove the medical profession wrong about the median age being 70. It seems most of the people here are way to young to have PMR by medical community standards. It takes time and the prednisone has some really bad side effects. But, what do we do? The pain for some is just unbearable. Good luck.Thanks for the encouraging words, Betsy. The first dose of prednisone seemed to help. She definitely was better this morning. Hopefully this trend will continue. If so, at least we'll have a diagnosis and some hope. Man she's had a rough month or so. I'll keep you posted on how she's progressing.
Re: age for PMR, I wonder if most of the posters to this forum seem young because a higher percentage of young PMR sufferers are internet-literate vs. older sufferers? Doesn't matter, it's all looking like she has PMR and hopefully we're on our way to at least being able to live with it.
Thanks again!
Jim and Donna
I'm new to this board, too, having just been diagnosed with Polymyalgia Rheumatica in September. There is so much information to be found by reading the archives......I feel like I know so much more than my doctor does!
She started me out with 40mg of Prednisone, which worked a miracle, but then she quickly decreased it (10mg a week and then down to 5). From what I've learned here, it was way too much, too soon, and the symptoms returned big time. Now I'm back up to 15 and will decrease the dosage 1 mg per week. I'm feeling so much better and look forward to the minimum dosage I can get by with......from what I've read here, Prednisone is not good to your body, but if you need it, you need it! Hopefully your wife is seeing encouraging results from the Prednisone, too......keep posting and let us know how things go. Judy (BTW, I'm 61) Hello Jim and Donna, Sure hope you ar on the right track now. I well know that tears in the eyes feeling on trying to get up in the morning and some of the other symptoms you mentioned. I experienced those symptoms for almost 2 years before a very good rheumotolgist dignoised my PMR. Within 2 or 3 days after I started taking 45 mg of Predisone I felt like a different person. I'm 70 yeaars old and have always been very active until PMR took over. I was dx'd in June 2006 and am now down to 10 mg a day. I've been among the very lucky ones because I haven't gained any weight since I started taking Pred. I sure hope you get better real soon. Someone said older people probably don't use the boards as often as younger ones. That is probably true. But it does seem like an awful lot of young people get this disease too. Good Bless Both of You, Hi, Jim & Donna (and all) - When I was diagnosed (I told my doctor what I thought I had, and he confirmed it with a SED rate test) in late Feb/06, I did a lot of "googling" on the internet and came up with what I thought were the best protocols for prednisone dosage. The one I have used as a guideline says don't decrease by more than 2.5 mg. per month above 10 mg, then below 10 mg., decrease by no more than 1 mg per month. Whether or not your PMR is gone, you will experience muscle aches and pain just from the prednisone withdrawal, even when tapering gradually. I stayed at 15 mg. for at least 6 weeks before I started to taper, also plateaued at 7 mg for a while. Relapses are common (to be expected, actually), normally you just have to go back to the last level, wait a few weeks, then try lowering gradually again. Stressful situations (e.g. illness, special events) may call for a higher dose for a few days, but if it's only a few days, you don't have to worry about tapering, just resume your "normal" dose. I'm now at 4 mg. (for the past week) and experiencing some stiffness, but it's quite bearable. I'm still able to function normally, and am heading off to southern California in a couple of days for a vacation, including 3 days of horseback riding in Arizona. I would love to lose about 15 lbs, but I can't blame the prednisone for that! (I'm 56 years old, BTW, and have been trying to lose that same 15 lbs for a few years now!) I think it helps to stay as active as possible, otherwise muscle atrophy and just plain lack of fitness will add to the difficulty of recovery. I realize that some people seem to have a much worse time of it, but I was lucky enough to be able to keep physically active throughout, as I have a small horse farm and had no choice! I've been taking some supplements: calcium is a must, make sure you get lots of potassium in the diet, chromium picolinate with biotin helps prevent corticosteroid-induced diabetes, Omega 3-6-9, and I take something called Recovery powder (described at www.recoverymedicine.com) - I can't say for sure it helps, but it contains vitamin C, MSM, a form of glucosamine and a number of anti-inflammatory and immune modulating nutrients, so it can't hurt and prevents me from having to take a several separate pills. I get it at Costco. Best of luck to Donna. Let us know if the prednisone does the trick. Hi Jim and Donna I'm one of the "younger" one being diagnosed three weeks ago at age 47. I really feel for Donna as I have had times when I'm in so much pain I don't know what to do with myself. Let's hope the steroids will "kick in" soon and that Donna will get some relief. With me, within a couple of hours of taking the first dose the pain was getting less in my thighs. I'm still not settled on an optimum dose yet but it is still early in the treatment. All the very best to you both. God Bless. Thanks everyone for all the kind words, and very helpful information. So, I have very very good news. Donna started the 20mg twice a day at 9PM Thursday night. It's now 7:30 Saturday night. We just got home from a fantastic dinner out with Donna's twin sister and her husband who are visiting from out of town. Donna is already feeling so so much better. Not her "old self", but she's getting out of bed, up from the couch, putting her socks on, etc, all by herself. Soreness is subsiding. All I can say is Thank God! So, of course we haven't thought much about the side effects at this point, we're just thrilled that she's out of agony. So, what's the "normal" timing for beginning to ramp down the dosage? Thanks again all! Jim and Donna I am 69 and have worked with computers for about 20 years. I attend a course on genealogy. All 11 persons are retired and have computers. I am also active in a project in Europe where we try to find out how to get the large number of old people - there will be a lot more older people the next 20-30 years all over the world - to travel by public transport instead of using their car or special transport service (we have had such door-ro-door service in Gothenburg, Sweden since 1967). In the investigation it is said that those born in the 40īs are the car generation but I would say also the first computer generation (even if their sons and daughters know more than themselves). I think the reason for so many people around 50 using this forum is that everybody keeps telling them that they are really too young for PMR. I think we should go out and tell that also people around 50 gets PMR nowadays! After a week in London with a lot of walking, I found that my sed rate was too high, so I have to go back from 2,5 mg Prednisol to 5 mg. Thatīs the second time during 16 months that I have to go a little higher. It is better to count on that and let the illness have its time and try to do physical excersises as much as possible. A friend of mine (72 years) just got off Prednisol after many years, so there is hope. Greetings from Sweden - Ragnar So glad to hear that Prednisone is working its magic for Donna. I chuckled when I read that she doesn't need help to put her socks on anymore.....my husband had to help me put mine on, too. I've taken care of him after several surgeries, and have to say it was quite strange to be on the receiving end this time. Judy Hi I am very sorry to hear about your wife.......please have them test also for jo1antibodies. I have this rare antibody on my immune system and I like your wife became very ill when I first became ill with it. It is a marker for people who have polyarthritis, polymyositis, institual lung disease as well as other mixed connective tissue illnesses. My story and how I learned to live well is at http://jo1antibodies.zoomshare.com I hope it helps. Because this is very rare and an overlap of illnesses it sometimes gets missed in diagnosis. I, too, got a chuckle on the socks issue. Boy, I can remember not able to put on socks, shoes, or pick up anything off the floor. Not to mention if I dropped the soap in the shower. I was diagnosed in June, after suffering since Feb 06. It started in the back of my legs, thinking I had pulled both of my hamstrings...I, too, can remember crying trying to get out of bed....Also, the crying was from frustration not knowing what in the world I had. I am 52, very active and healthy and exercised everyday. When finally diagnosed, I was put on 15 mg pred for 6 weeks, then 12.5 for 6 weeks and currently on 10mg, and scheduled to be on that for a total of 60 days, then taper again, not sure what the dose will be, I will see the rheum on Dec 6, can't wait! I have a little bit of stiffness and soreness, I can deal with that compared to the pain intially, I am eager to get to a lower dose....my side effects have not been too bad, I have puffy eyes and my neck bulges at the collar bone. I walk every day, cannot do the weight training and pilates that I used to, but looking forward to the day that I can....it will come! My rheum. has me on fosamax every other week, calcium, vit D, coenzyme Q10. Keep us posted, glad to hear Donna is feeling better....I believe I read a post from another California resident.....I, too, live in the San Fran Bay area.... Janet.....
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