I have written before under Newly Diagnosed. Something puzzles me about all this. I have suffered for a really lot of years with arthiritis, particullarly my back and hands. I was diagnosed a few weeks ago with PMR and am on 15mg of Pred. It was like a miracle, all my pain dissappeared. Now after a month my pain has returned with a vengence.
Dr wants to put me on a tab for osteoporosis, which I am not too keen about, would much prefer to have a Calcium supplement, and to have proper scans to see what I am dealing with. I dont doubt for one minute that it is PMR, as I have a lot of the symptoms, night sweats, aches and pains etc: (which I have had for years), night cramps, swollen ankles etc:
I am getting away from the title here, is it at all possible to have had it and not known about it? Over the years I have had physio, cortisone Injections, and acupuncture for the pain. Myself I feel yes I have PMR, but could I be dealing with something else as well?
Your feedback will be appreciated.
I had PMR for 5 years before the doctors took any notice - I had normal bloods and was "too young" they said. Looking back, although I can identify the point at which the vague aches and pains and tiredness turned into something identifiable as PMR I am sure there was something going on before. I had something that was typical ME (chronic fatigue syndrome or "yuppy flu" as they used to dismiss it as) when I was in my late 20s, pre-children. I had raised liver enzymes and the fatigue was unbelievable, I couldn't stand for more than a few minutes. It lasted about 6 months and then slowly improved and by the time I saw a consultant (7 or 8 month waits in those days) all was nearly back to normal so too late for a real diagnosis.
Something returned when I was in my late 30s - and my gynaecologist tried me on HRT which was almost as effective as pred in PMR! I wasn't too bad as long as I was on HRT but a couple of years after stopping it along came the PMR. But ever since I was in my 20s I have had back problems like you and had a similar selection of alternative therapies other than acupuncture to keep me going.
I find that certain bits of the "PMR pain" seem to be separate - and that has been diagnosed here in Italy as myofascial pain syndrome and dealt with as such using massage, manipulation and cortisone injections and "needling". At higher doses of pred it was better anyway - but then returned as I managed to reduce the dose.
Is the returned pain like that or really the typical PMR pain and stiffness? Or have you made the classic mistake of catching up on everything you hadn't been able to do because you now felt well enough? I wonder because of your comment about being as bad as before a month after the pred miracle - I take it you are still on 15mg? It is possible to have PMR and rheumatoid arthritis or another inflammatory arthritis, i.e. you can have PMR-like symptoms that don't respond to the pred and you need something else for that.
But the pred only "manages" the pain and stiffness - you have to do your part too and rest. The underlying illness is still there and active. Your body has become intolerant of exercise, it needs a much longer time to recover, walking up the stairs is equivalent to running half a mile without training! If you don't allow your muscles to rest and repair themselves you WILL have pain.
That is such an eye opener. . . . strange how we read things over and over again but yhey dont regsister, then bang, you see it.
I'm on about having two problems, i.e. pmr and OA, the pred deals with the one but expossses the other.
Having been threatened by my Rhumi consultant that I would have to go mtx as I was stuck on 10mg of steroids. I had a revolt, not wanting two medications. 10mg kept me happy all round but 8mg has exposed something else. My guess is that thee OA in my lower back is now demonstrating its own symptoms and pain.
So maybe fighting having a second medication and keeping the steroids up is not such a good idea. Maybe lowering the steroid to cover the pmr and having mtx to cover the oa would be a better route.
So much to think about, so many decsions to make
Um - David, mtx doesn't do anything for OA, osteoarthritis I assume you mean. The mtx is felt by some people to increase the action of the pred so you can manage with less to get the same effect. If someone actually has misdiagnosed RA - rheumatoid arthritis - then the mtx may help there but otherwise there isn't a lot of study evidence to show that mtx does allow a sustained reduction of pred: I know 2 ladies who took mtx and were initially able to reduce the pred but then had major flares and were back where they started. It was suggested for some years that mtx be used for patients who struggled to reduce but the most recent thoughts actually say DON'T use it.
If you have OA then unless it is in a joint that can be replaced there isn't yet a lot to be done with medication. Except there IS a new topical medication (whose name escapes me at the moment) which I know several people have used successfully - it's a bit like WD40 for joints! I'll try to find it.
On the other hand - I was told my lower back pain was due to wear and tear (i.e. OA) and there was nothing to be done. Changing the diagnosis to myofascial pain syndrome and treating THAT has left me pretty well pain-free. That might be worth a thought.
Good afternoon,
I feel that I have intruded in your conversation with gladioli30, so I do apologise. I was diagnosed with PMR last November, and soon after asked the forum some questions which they kindly replied, and were a great help. I started on 15mg prednisolone which was great, but definitely put on weight which was probably my own fault. I was at the consultant yesterday, and explained that I was so terribly tired, and had no interest in anything at all. I sit mostly reading, and it is an effort to go out even for shopping. He asked me some questions about my steroid intake, and I explained that when I feel better I drop the dosage, and am now at 8mg. He told me that this was certainly not the way to do it, and to stay on each drop for abour four weeks. I will definitely do that now, and just wondered if you have anything to add. I would love an elixir (as no doubt would everyone) to just give me some energy.
Kind regards,
Grace
The extra tablet is because pred can affect boned so you take this as a precaution . Hope that helps .
It comes in phases I find x
Eileen, so true....my body had become intolerant to exercise, and I used to love to move my body and run to feel better which helped still 3 years ago. Terrible what the illness does to the body. I have stairs in my house which I have to manage every day.....I may have to make a change from a townhouse with 2 sets of stairs to an apartment.
Your insights help, so does your guidance.
Erika
I have been on pred. for 14 months and I could not really feel pain for anything else I had.ever sick or having anything wrong until I turned 68, then I work up feeling old. I was at the gym 5 days a week for 7 years and pretty well fit. Did what most 50 year olds did. I PRM and after all these months find I have arthirtis is my spine and advanced stinosis. They say I have had it a while but I did not feel the pain until I was been lowered on pred. I was down to 2.5 every other day and now had to go up to 5, not sure that is ever enough. ALso my numbers are up. SO yes you could have had PMR and not know it.
hi Baba ~
Regarding your spinal stenosis, are they suggesting any surgery? I know stenosis of the foramen can be quite serious if it isn't dealt with. The foreman closes up on the nerves/blood and can have a major impact on you. You may want to check and see if they are foreseeing any surgeries in the future. The pain you are feeling "all the sudden" is most probably the foreman has closed up more than it was prior!
Good luck
Frustrated
Personally I never find it an intrusion - we all have something to chuck into the mix! This should be a conversation - and it used to be with the old format. Now you have to look all over the place!!
In the reduction I suggested I did say originally that there was no real need to hang around at a dose if you still felt OK because it had already been spread over about 4 weeks - but I did add another post a bit back to suggest that at lower doses spending a month at each dose was a good idea to let your body catch up. About 10 and again at 7 and 4-5 seem to be sticking points for many. Our bodies normally make the equivalent of 7-8mg of corticosteroid, maybe a bit more or less. So once you get to that realm your body is having to wake up and start making its own again - it takes time to settle down. It is felt that it takes a good year for you to get back to "normal" after you stop taking pred longterm - it isn't that different beforehand as you reduce either.
To be at 8mg in 9 months is fast. The Bristol group leave you at 15 for 6 weeks, 12.5 for 6 weeks and 10mg for a year - using their scheme you would still be at 10mg for another 5 or 6 months - you're way ahead of yourself!
Are you sure you are not depressed? Having a chronic illness of any sort is very hard - your life is turned upside down - and when your friends and family don't understand it is even worse. We can offer a lot of support on the 3 forums but it still isn't the same as having a real-life person to talk to who also knows what you feel like. Or being able to go to a support group meeting. Maybe a chat with your GP might help?
And resting BEFORE doing something means you have a bit more energy to devote to something nice. I'm a filthy pig - my house is dusty even now I am at a lowish dose of pred! I do what I WANT to do and save the yucky bits for next year ;-) Every so often we get a cleaner in - bless her she accepts my dust very well!
My PMR went haywire after about 5 years - just after we had moved to a smaller house with only 1 bathroom after years of houses with a toilet on every floor and that meant doing the stairs several times a day. I was literally on hands and knees going up and could only go down like a toddler! I managed to get here to my appartment in Italy - a lift to the second floor and all on one level! Bliss - and it meant I could do so much more outside! Now I manage the stairs and only use the lift to go to the basement or when carrying things. I couldn't face a house on 3 levels though ever again!
Yes they want to do surgery, but I developed serious blood clots in April and now I am on blood thinners and they can not operate. I was just told the clots are sill there, but blood flowing so I belive I have 6 more months on blood thinners. I t is hard to tell most of the ime which pain I am feeling. I can't do much righ now and it is very frustration.
Hi Bababoyd ~
I'm so sorry to hear abou your dilemma. I totally understand about the blood clotting. I had major surgery a while back and delevoped bi-lateral clots in my lungs. I was fortunate enough to have a "greenfield filter" put in place as the bloodthinners would have dislodged the clotting from the surgery rendering me paralyzed. I'm wondering if you can suggest a filter and then taking you off the thinner as you said you still need surgery, this may be a possibility. The placement of my filter is just below the belly button. You cannot see it as it is inside the body but I do feel relief everytime I feel the same exact pain I felt while passing the clots to begin with.
I truly feel for you and emphasize your pain. I broke my back and neck when a car decided not to pay attention and yell at another driver along side his car. Thus, taking his eyes off the front of his vehicle and out the side window. who drives like that? lol Anyway he slammed into me going 50 mph and my car flew into the air 5 ft or more...witness stated 5 but then I slammed down on the seat thus breaking bones and pretty much giving me pain all up my spine and shoulders for the rest of my life. I had surgery but it never takes away everything. Itruly wish you luck and will include you in my prayers.
Warm regards,
Frustrated
HI again, Muirkelsi ~
I agree with Eileen regarding depression. I've been in chronic pain for over 10 years now and it's excessive enough I had to retire early. It wasn't until approx five years into my situation that I finally got to the bottom of the cup and asked for help. I've always been strong and would be able to pull myself up anytime. However, the chronic stuff is just that...chronic and forever. I was put on a mild anti depressive pill and it settled down. I wasn't so sad or anxious as I usually had been. Being a person that everyone else relied on turned around and I found myself relying on everyone else. It was hard for me to ask for help and not because of pride but because I'm one who always thought, try, try before you ask for help; I was way beyond trying. Anyway, I did ask the GP for help and she did change my life with just a simple pill. I feel mentally wise, so much stronger than I was feeling. In fact, my husband, my, caregiver, who was also starting to break down asked for help after me badgering him to get that little bit of help and you'll feel so much stronger.
Anyway, feel better and God Bless.
Warm regards,
Frustrated
Also, strong wasn't the correct word because depression wasn't and isnt' a weakness. It takes a strong person to ask for help.
<3
Frustrated
Hi all but wanted to say to eileenh that i had my suspicions(right or wrong) about HRT -ONLY i had been on HRT fir 15yrs as i had full hysterectomy when i was 50 and was put on it(am 69 now) but then told imust come off it and low and behold i developed HRT 6 months later!!also when diagnosed 4 years ago i refused to go on bone protection too (reumy not pleased with me at all ) but was reluctant because of readups against it.did have dexa scans which showed little OP in spine and was told it should be treated -but when tne did another DX a year later it showed a better than last scan.so i have been taking only one cakcium tablet per day as they make me constipated .just hope im not doing myself any harm by not taking it.I am on 5mg now and still get the pain and stiffness -sore butto ks
Oh!!!just attempted to send a lengthy reply and dont know what i did wrong but just as was finishing my reply i botched up so if you got a half finished reply or even nothing please let me know stupid me!!!
Hi Jean ~
I cannot tell you how many times I've done that. I've had to write a little then highlight and copy, then type on then highlight again and so on. The thing is, I have to "remember" to do this more often.
Sorry for your frustrating experience.
Frustrated
Eileen, thank you for telling me your experience......I am 74 years old....time to say good bye to STAIRS!! My knees can handle them but not my lower back especially left hip area.
Energy yes I'd love some of that. I have no stamina anymore but thinking back this has been happening for a few years in a more mild fashion, I prided myself on being able to work all day alongside the men and as I reached about 50 my stamina seems to abate gradually and now I don't have much at all at 64.