Why has no one posted since April 7? Is everyone doing so well; or not doing so well and found they were not getting answers? I found that just coming to this meeting place has helped me, just to know that there are other people out there going thru similar symptoms. I had another couple of bad weeks, but am really starting to feel clearheaded and able to cope......this week. Back to swimming quite well and also woke up on Sat. at 6am, almost jumped out of bed, drove 25 mins away, to walk the dog for 1 1/4 hrs just like years ago. I felt so pleased with myself. And today??? I am not too bad; bit sore in hips, groins, thighs and knees just to remind me of the PMR, but had family breakfast at home and managed. Maybe the methotrexate is kicking in, but will I lower the prednisone by a 1/2mgm this week or next??? It is a juggling game. How are you all doing, I would love to know happy easter to all Peaches
Hi Peaches!
Believe it or not, I can still type even though both wrists are broken. It's so wierd because ever since this has happened, I haven't suffered any problems with PMR! I suppose my body is putting everything it has into healing the wrists? Either that, maybe my time with this is over since it's only supposed to last from 1 to 4 years anyway, and I'm at the end of year three.
I am not on Prednisone, and plan never to go on it again! My ortho doctor who performed the surgery on both wrists on March 20th, said that I wouldn't have broken them had not my bones been so soft from the Prednisone! So there you are! Hopefully, I won't be bothered by PMR, where I can stay med-free forever. Wouldn't that be nice? I'm not sure how long I will be off of work since my wrists are far from functioning 100%.
I'm glad that you have had some pain free or near pain free days, and took advantage of them by getting out and being active. It's great to get as much excercise and sunshine that you can. And even if one does have pain, a short walk is better than nothing.
We had a nice Easter with our daughter! I can't believe that it's Spring, also!
Keep smiling! I'll try to do a better job at following the posts. Hopefully everyone else is doing OK!
Hugs and smiles,
hopalong
PS If you haven't had a Dexascan on your bones to check for deterioration secondary to Prednisone, I would advise it.
Glad to hear you are doing well, Peaches. After 7 weeks on prednisone, I am still enjoying an active daily routine - I walk the dog twice a day, spend a couple of hours doing barn and yard chores, ride my big black mare a few times a week, weather permitting. I'm starting to reduce the prednisone (from 15 mg to 12 mg so far) and will put up with a little discomfort in my hips, if necessary, so long as I can carry on with my current active lifestyle.
We went for a nice long ride yesterday late afternoon (Easter Sunday) and by the time we finished at the barn and went into the house to finish making dinner it had somehow gotten to be almost 10 p.m.! We must've been having fun!
Hi, This is my first post. It is my hubby who was diagnosed with PMR last month. I don't see men on here. It has absolutely changed our lives. I have seen him through nine joint surgeries (3 of which were replacements) and all of them together did not give him the pain this did. We had overnight guests and we ended up taking him to ER on Wed. night. He couldn't comb his hair, brush his teeth, it was unbearable to watch. ER said he had a stiff neck. Next day, called his cardiologist & then his orthopedist & set up appts. Called family physician again on Fri. & he said treat it like muscle spasm. Sun a.m. he was on floor writhing in pain, could not get up & we couldn't help him. Called dr. on call & he said call 911. We were at ER from 9 a.m.-4 p.m. and they just gave him very strong shot to put him out. FINALLY, on Mon. we got blood test with sed rate of 100. At this time, he is on 60 mg. of prednisone along with Vicodin ES and muscle relaxants. His sleep has been severely interfered with and he is having attacks of extreme pain parts of every day. He is losing weight. Says pain takes away appetite. Have been trying to get him to rheumatologist but May 3 is first they can see him. Have been on cancellation list for 2 1/2 wks. He is 69 and has been a very active, strong guy. His pain is unbelievable. What do any of you think of this?
Wow!
I have had PMR for about 3 years, but it has never given me the pain that you're husband is going through. I have had difficulity getting around, but have never writhed in pain.
I would like to know how your husband was diagnosed.........was it before the Sed Rate results? Why did he have all those joint surgeries? I'm not a doctor by any means, but has Rheumatioid Arthritis been a possible thought for a diagnosis? Does he experience pain in his shoulders and arms? Many of us have burning shoulder and arm pain which is worse in the morning. Getting up and out of bed in the morning is a definite problem for PMR victims. Is the Prednisone working?
Hoping he's feeling better by now....hang in there, okay? I'll be interested to hear what others have to say.
Hugs,
hopalong
I've had pmr for 4 yrs. but think something else is going on, also. Developed lots of allergies to meds and even developed scalded skin syndrome. Rheumatologist put me on MTX, folic acid and started tapering prednisone. Got down to 1 mg and symptoms came back in a big way. Tried Remicade for 9 mo., developed antibodies to it, also. Next month will try orencia. I want to get off prednisone. My skin is thin and papery. Any little bump will tear my skin. Now back on 6 mg prednisone and my hands, thighs and legs are becoming sore. Keep fingers crossed for Orencia.
Doctors can be unbelievable!
Try this with your RD. Tell them that you were in the ER, the amount of Prednisone he is on and that you want an appointment right away even if they have to double book you. My RD always gets someone in if they are already a patient (as in not new) if you make it clear how serious it is.
If you still don't get results (and do talk to a nurse to get the appointment, not the front desk), call your patient advocate with your insurance company.
This delay is totally unreasonable for the seriousness of your husband's condition. All else fails, get hold of the emergency room doctor that put him on the prednisone and see if that doctor can get you in sooner. That is an extremely high dose that you just cannot stay on for very long.
Good luck. Oh, doctors make me so made!
I have had PMR for 4 yrs. Felt fine one day, had a fall on cement surface, next day, PMR. Did anyone else notice a trauma prior to experiencing symptoms ? Now being treated for RA. Is it possible to have both? On pred, MTX, Leucovorin. Was on Remicade-didn't work. Trying Orencia next. Also, my Dr. said prednisone always helps PMR-in, fact it is a diagnostic tool, along with the sed rate. I was in agony for about two weeks before I went to see the Dr. I blamed the soreness on the fall I had experienced. I was unable to turn over in bed, fasten a braq, comb my hair, etc. Went to an Orthopedic Dr. first and he asked where it hurt most-ended up giving me a shot of Cortisone in shoulder. NOTHING worked except Prednisone. If you are hurting and in terrible pain-see your doctor. It is hard to taper off Prednisone but the relief you get from it is worth the side effects. I'm still trying to get off it-down to 5mg.
Hi, lola -
I didn't have a "trauma", but I had a change in my routine which included walking the dog twice a day - much of it uphill - and my first symptom was stiffness in my hamstrings & thighs, which I thought had to do with climbing hills. That got steadily worse over a few weeks, went to major stiffness in my hip joints and eventually to pain and stiffness in my shoulders & upper arms - couldn't wash my feet in the shower, hard to turn over in bed, etc.
Started prednisone 9 wks ago, I'm down to 10 mg of prednisone (from a "high" of 15 mg) - worst side effect for me is a problem with my distance vision, which started a couple of weeks ago. Some days are worse than others. Especially if I'm on the computer all day, it's good in the a.m., but by mid-day, I have to use an old pair of glasses with a higher prescription to drive. Anybody else have "fluctuating" eyesight with prednisone?
I don't know if it is related directly to prednisone or not. But I do have lots of problem with my eyes because RA causes inflammation even in your eyes. Or, you can also have Sjogren's like I do. Another possibility is simple dry eyes.
It's always a good idea if you are on prednisone to get your eyes checked by an opthamologist (not something like Lenscrafters), a doctor who can do real examines. You want to be checked for glaucoma (another potential side of prednisone - yes, have that too.) When the prednisone goes up, so does the eye pressure.
The dry eyes is easy to treat. I use genteal ointment and those little packets of sterilized water that's in the eye section of the drug store. The reason dry eyes can cause fluctuating eye sight is because as the surface of your eyes dry out, it causes them to reflect light differently, making it hard for you to see.
With RA, inflammation can make you very light sensitive. When I've had that happen, they give me cortisone drops in my eyes.
So, baby your eyes and find out if anything is happening. In the meantime you can try the water drops since those are harmless and see if that gives you some relief. But be sure to see the eye doctor. If it is dry eyes, you may only need eye drops. If that doesn't work, they can put plugs in your eyes that help retain the moisture. This worked really well for me. There also a new medication out there called Retasis (something like that) that can help.
Other simple things that help are every morning, I put a warm cloth on my eyes. This helps clean out my eyes and it feels so good that I don't start my day without doing it. If my eyes are inflamed, I put a cold one on them.
Hope this helps.
Thanks for the info, Deanna. My doctor sent me for a blood sugar test, and I'm booked for my opthalmologist, but her next opening is a month away (unless there's a cancellation), so I went to see an optometrist in the meantime, who did a glaucoma "puff" test. He said that my retinas looked healthy, that my problem was corneal hypoxia, and that I should stop wearing my contacts. However, he refused to believe that my eyes changed that much over two weeks, let alone during the day, insinuating that my opthalmologist had given me the wrong prescription in the first place! Meanwhile, my optician said it was definitely not the contacts because my eyes looked fine, and that it must be something medical - makes you wonder how many times these professionals are wrong about something!
At first I did think it was irritation from my contact lenses - dry eyes or corneal hypoxia - so stopped wearing them and started using TheraTears. However the problem seems to be there daily whether I use the drops or not, which is why I'm thinking it's the medication, based on things I've read on other message boards. I'm a "high myope", so perhaps have a wider fluctuation than most people - a 10% difference for me is almost a full diopter - I'm glad I have 3 pairs of glasses to choose from!
I wish I knew for sure, though, 'cause I'd really like to go back to my contact lenses.
Hi to all: I have had polymyalgia rheumatica for 2 yrs. Was on predisone 8 months. because bones get soft when on predisone a fall can be devasting. Cracked both pelvic bones, tore the rotator cup in shoulder. Dr. put me on the durgesic pain patches which has helped tremendously,but after a year, bones finally healed but the prm has come back full force, and the pain is almost unbearable. Now back on predisone and hydrocodone. I am hoping reading about others who have to cope with this will help. Somedays I just cannot go and others I go very slowly. Thanks, Weezee
Hi from Sunny South Florida, I was diagnosed with PMR 18 mos. ago. I woke up one morning while visiting my daughter and thought that my granddaughter's new bed was uncomfortable as I had pain across my shoulders and day by day all of the other symptoms appeared. A year and a half later, I am down to 5mg. of prednisone and 120 mg. of Cymbalta. As soon as I drop from 5mg. to 4, the pain starts again. Amazing! I have gained 30 lbs. and as of today have 2 skirts that fit me.
Judie Welcome Georgiana, Maybe you are not on a high enough dosage. When I was first diagnosed with PMR my doctor started me at 60mg. Over night I felt like a new person. That was a little over a year ago. I have just weaned off of Prednisone and it will be one week tomorrow for me without the drug. I am hurting but they say that weaning off the prednisone also causes pain so I am going to ride it out and see what happens. The pain is not as bad as when the doctor put me on 60mg so I am hoping it is just from the weaning process and not the PMR. If you get a high enough dosage to start with Prednisone is like a miracle drug. Hang in there. You will meet alot of nice people on these boards. Your symptoms sound right on with the PMR. I have been told that PMR can go last 1-2 years before a remission. Others may no more. Each doctor seems to treat the dosage amounts different. I will be thinking of you.
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