Advice please on new pains
Posted , 11 users are following.
Hello, I have had PMR for 4 1/2 years. Luckily the Doctors allowed me to follow my own dosage requirements ( with huge help from this website!) and I have managed to get down to 1mg very other day. it was all done very slowly and have been at 1 / 1.5 every other day for 2 months. Approx 5 weeks ago I woke in the night with a very sore neck, just turning was very painful. The pain is around the very base of my skull, like a clamp, it's like everything is very taut. It tends to ease off during the day, some days it remains achey and turns into a headaches. I do Pilates and do regular neck exercises which does tend to ease things. I saw my GP as after 3 weeks it was waking me every time I moved my head through the night and I was thinking it was something very nasty. He gave me a thorough exam and concluded wear and tear or the medical name cervical spondylosis. I have seen a physio and she is very good. The pain is wearing, particularly with lack of sleep. Two days ago, I woke with lots of aches, hips, knees and shoulders and suddenly I wondered if this has brought on a flare? My original PMR pains were only around my pelvis area. Any opinions/advice gratefully received.
0 likes, 9 replies
Anhaga floramac
Posted
Could be. The easiest way to find out is probably to take a larger dose of pred for a few days. The standard increase suggested is 5 mg over your current dose. If it makes no difference you can drop right back down if you've you've only taken the higher dose for a week or so. If you see a measurable improvement, maybe it is PMR back again.
Elijo floramac
Posted
Sorry to hear of your pain. My PMR started with being unable to lift my arms, pain in all of that area, and then hip and legs. It sounds as if you are having a flare. If you can increase your pred and see if that helps, that could prove it is a flare.
janet06653 floramac
Posted
Looks like a flair, i first had only a stiff neck, and hips later my flair was in my arms and hands only. so I have learned any extreme stiffness anywhere is most likely a flair.
janet06653 floramac
Posted
Looks like a flair, i first had only a stiff neck, and hips later my flair was in my arms and hands only. so I have learned any extreme stiffness anywhere is most likely a flair.
EileenH floramac
Posted
At such a low dose it might be worth trying just a bit more? To see what happens if nothing else. I would.
heatherjoy29 floramac
Posted
i ended up in A&E on one occasion with such a sore and stiff neck they even wondered whether i had meningitis! But in the end the consultant I saw decided it was a severe flare of the PMR and upped my steroid dose to abiut 20mg for a week and then to taper back down again. I later noticed a lot more pain and stiffness in hips, lower back and knees and realised he waa right, so rang my rheumatologist and he then managed the tapering for me. The steroids made a huge difference and i started to feel human again! Hope things improve for you soon! x
heather39822 floramac
Posted
After 5 1/2 years of yo-yoing with my Pred and never making it under 5mg, I have decided that Eileen is right (and I hope I don't misquote you, Eileen) and that individuals have to find the personal level of Pred with which they can best live. In spite of my multiple attempts to taper down, at last I have accepted my level is a horrible 10mg. I drop 1mg and my neck - which I have also accepted is my PMR weak spot - is agony and my headaches unbearable and unresponsive to any painkillers. Is this forever? I am 72 and I fear it may well be. I also ended up in an ambulance being taken to A&E thinking I'd had a stroke . After a day of tests, the consultant gave me 15mg of Pred and I walked out! We in Africa say of our debilitating problems, TAB - That's Africa Babe. I guess the same goes for PMR.
gail71461 floramac
Posted
Hi, sounds a bit familiar. Im having a fair sized flare from straining some intercostal rib muscles last month doing some yard chores. Ended up at Urgent Care with really bad little spasms. They gave me muscle relaxers and pain killer. I dont do well with drugs, they will make me flare alone, and took them sparingly only a few times. I was also in long process of tapering and down to 1.5mg. Back up to 3mg again. Im better but still feeling that flare. This PMR is a strange and tough journey, feels crazy sometimes. It helps hearing other peoples experiences to feel a bit more ok about these flares and symptoms. my PMR also likes to present mainly in my pelvis, glute and hip muscles. It has bloomed into my whole body the last few years. The RA/PMR drugs the Rheumy put me on (Plaquenil)made my autoimmune system crash and Im still coming back from that.
floramac
Posted
Just got the results of the MRI, all clear and saw the doc today. After discussions she feels as I do that it is a serious flare (my shoulders, and hips are now painful too), and perhaps the real bad pains in the base of my skull/head are related. She has prescribed 15mg for 2 weeks and as previously with my PMR, it should respond very quickly? Is two weeks too long considering I was down to 1mg?