ok folks i am celebrating down to 1 mg, BUT i still get niggly pains, some days are worse than others, some days hardly at all , some days more noticable. any one had this
Hi Pauline,
How long have you taken Pred? I am still trying to deal with my symproms with vitamins, Udo's oil, apple cider and hot showers with a pain spray after. i have been getting increasingly stiff and developing new aches so I amnow taking Tylenol with muscle relaxant which helps a lot. I have not been to my Dr. (very young) but have researched a lot online.
how long have you had PMR? Congratulations on getting down to 1 mg!
Hello Pauline, congratulations on achieving 1mg. I am presently on 9mgs but most days I am as good as pain free. However, if I carry heavy shopping bags or do the ironing or worse still I'm currently decorating the house (I could of done the decorating no problems pre PMR) then I do suffer from niggleing pains and they can last fir many days then as I start to take things easy then the pain reduces. But in the whole no I do not suffer from niggles.
Have your niggles appeared following this recent reduction or have you had them throughout your PMR journey? I know you will not like what I say, but if you need to up the dose to ease the PMR symptoms then do. Because that's telling you that a bit of inflamation is stilll there and perhaps you may be more successful in a couple more months. All the best, christina
hi pam ive been on pred 2 years. lowering very slowly. thats all i take, along with vit d. am 72. i have had pmr 3,5 years but took 18 months b4 it was diagnosed., but at this age i would asume i would have some aches and pains altho i was really fit before pmr just hope i dont get a flare keep going and listen to the xperts on the forum good luck to you
Hi pam, are you saying that you are not taking any prescribed medication eg, prednisolone for your PMR and are dealing with the symptoms of this condition with alternative therapy? Have you actually been diagnosed and if so when?
i know that the 3 months prior to my diagnosis I was simply in so much pain that daily everyday existence was unbearable and I was so happy when I was prescribed prednisolone although I was and am not happy about taking it. I had to think about the overall damage un challenged inflamation will do to my body against the long term side effects of prednisolone, and prednisolone won the day.
all the best, christina
no christina the niggles have appeared the last quater drop. what i dont understand if it was a bit of a flare why is it there 1 day and not there as much the next day. i would have thought it would be there all the time getting worse which it isnt
Hi Christina,
I have not been diagnosed - but I sure seem to have some of the the same symptoms as others - stiffness in hips and body achy sore upper arms (can't comb hair in morning) eases after a hot shower and pain spray on upper arms. Fortunately, I do not seem as severe as others (although my husband does have to put on my socks, and help me out of bed) and I am in good spirits.
I do not have fever and I go for a daily walk, but do rest a lot. I am 63, retired, and my 90 year old mom lives with my husband and I. She is doing well.
the stiffness and achiness seem to be getting worse, even tho I am doing a lot - cutting out wheat, coffee (except i do allow myself 1 cup in AM, alcohol) I have adrink of apple cider in water in AM (I read somewhere that that is helpful)
My daughter is a GP and my niece is a naturopath, so they are advising me.
I live in Edmonton Alberta Canada Where are you?
Hi Pauline, prior to my diagnosis I had good and bad days of PMR symptoms. I had days when I was in so much pain I cried and cried. Then I had days when the pain was much better and I thought I was better, as if!
I wonder if indeed I have hit the nail on the head and there is still abit of inflamation and you're not taking enough of a dose to keep it in check. Low doses are tricky, firstly our own adrenal glands have to start working again and if they are not working as well as they should then they'll be producing no steriods or very little so all the steriods your body has is the small amount from the preds. I wish I was more experienced with this preds tapering malarkey but I'm not so I like you get my answers from members of this site. But Pauline I would be inclined to up my preds to the last dose that I was comfortable at and slowly reduce by very small amounts because at the very low levels of preds I believe you will be suffering almost no side effects. All the best Pauline, I think you are almost there but not quite there yet. Christina
Hello pam, I live in cornwall in England, Great Britain. My only trip to Canada was to a little town called Sudbury, Ontario way back in 1976. I was 16 then, oh they were the days!
i must ask, how do you want to approach this PMR recovery journey. Do you not want to take prescribed medication? PMR is not pleasant and I chose the route that would give me back my life now, how long do you believe you can continue in your present state? Also I understand that many conditions have the same symptoms as PMR including vit d deficiency. I believe you should at the very least visit a Dr and have a blood test, how maddening would it be to find out that you actually had something very simple wrong with you that could have been dealt with simply yet you have put yourself through all this pain for nothing. Regards, christina
Pauline
i guess my first question to you would be, are the pains similar to those that brought you to be diagnosed with PMR?
also, how long have you been on Pred, and when we're you diagnosed?
i also have come a long way, and am down to 1/2 mg, and still reducing according to info I received on this site, recently.
i have small pains, and am even a bit fatigued, at times, as I wind down.
however, none of my current paíns seem to be reflective of What i felt, prior to diagnosis, when I was barely able to function.
First of all, I am a year older.(74)
as I attempt to be as physical as I was before PMR, I have more aches from lack of excercise and muscle atrophy. I would hope, as I continue working at it, things will get somewhat better.
i also catch myself wondering, if what i "just felt' is PMR or something totally unrelated, as I am more acutely aware of any and all aches, now.
i discovered this wonderful site, 8 months ago.
and i've read over and over that the key to dealing with this situation , is to find a dosage that we aré most confortable with, rather that seek the goal to completely
come off pred.
i am beginning to understand that concept.
Hi Christina,
I have taken pred once before in my life - and it was AWFUL. I didn't sleep for 2 whole weeks - I am going to do everything I can to avoid taking it again. I have promised my Dr. daughter that I will get tests if I experience headaches and sore jaw as she is worried about Giant Cell Arteritis.
Meanwhile, I am going to see an acupunturist this week - and an osteopath next week.....
I'm pretty sure it's not a Vita D deficiency 9 (I take 4000 mg daily and I am outside every day - Edmonton is sunny, even in winter.)
I really appreciate your concern - I just feel whatever is wrong - is partly due to diet ...so, I'm exploring healing through improving my diet first.
I know Tylenol is not the best solution, and I will wean myself (just like being on pred) as I can. because my symptoms seem much less severe than others, and I don't have other health concerns I want to try this approach first. Anyone out there ever bee diagnosed with PMR and not used Pred? (I was reading on another site where people are dealing with PMR with nutrition, massage, acupuncture)
barb no the pains are not the same really. and i can deal with it really i am never get tierd or anything. just will carry on and get down to nill
mg over the next 3 month hopefully
Pauline,
it sounds to me, that you aré on the right track.
the best of luck and good Health to you, and let us know of your progress
barb
I get confused by the talk of niggly pains. Sometimes I get a few aches and pains, but I just ascribe them to growing old--in may case, to age 84.
So far I am at 2.5 mg. prednisone per day, and in a few weeks will lower it (per instructions) to 2 mg. per day. Except for occasional bouts of severe fatigue, I don't think my aches and pains are due to needy PMR, but simply to being old and lacking exercise. I try to do some exercise every day, but not for any extended period of time.
Q: why ascribe every niggly pain to PMR or pred, and not just to generally being out of shape and/or old?
Will be interested in comments, and thanks, Barbara
I had 5 years of PMR without pred - not by choice, I wasn't diagnosed as I was "too young" and my bloods were "normal". I managed - but my life was badly affected: if I couldn't get in the car and drive to park very close by I couldn't go there. I was in bed by 9pm every night, sometimes earlier. I had to change all my exercise habits - even which gym I used but the new one had a pool and daily aqua classes before lunchtime and that plus the sauna was a lifesaver. I took ibuprofen occasionally when the pain was really bad but it dodn't do more than take the edge off it. I gained weight because I couldn't exercise as I had before and no longer saw people because I couldn't join in what they were doing. In the same situation where I live now I would be pretty much housebound - there are no gyms with pools here and there would be very little I could do. I also used an osteopath and Bowen therapy which helped.
I never had a day without pain and it was horrible - had I been a person for whom PMR went into remission after a couple of years I suppose it mightn't have been so bad but 10 years on - it is still there. After about 5 years it suddenly hit like a 10 ton truck - I couldn't even get out of bed. I retrospect it was a severe episode of myofascial pain syndrome on top of the PMR but the PMR had also got much worse, especially the hip bursitis part. I could barely walk 100 yards and had to crawl up stairs on hands and knees. It was 6 months before anyone would try pred - and the rheumy only gave me 6 weeks worth (2 weeks each of 15, 10, 5mg) to get me through a trip to the USA. In 6 hours I could walk down stairs normally, not one step at a time like a toddler, and walk back up. Within 6 hours of missing the first 5mg I was in bed in tears - it seemed worse than ever.The rheumy wasn't interested in even listening to me. A GP believed my story and gave me a prescription for pred.
It was like getting my life back - I was still tired but the pain was gone. Like Christina, if I do the wrong things, like carrying a bag - or last week my granddaughter's skis (she has asthma) - my shoulders hurt. I've had an interesting 5+ years - I have also developed atrial fibrillation due to the underlying autoimmune disorder and ended up with 3 weeks in hospital while that was sorted out. One form of corticosteroid was awful for me, massive weight gain, muscle wasting, a beard and my hair and skin went nuts. But I was switched to another and have lost all the weight and feel great - especially since I have for the first time got well below 10mg and an on 4mg with no problems at present.
PMR does damage to your entire body - it isn't just what you feel. There is uncontrolled inflammation of the blood vessels and muscles. Long term that increases risks of various things - including several forms of cancer. It isn't as simple as pred is bad, no pred is good. In PMR you are on much lower doses of pred than are usually used, it is only at the beginningyou are on 15mg, the idea is to reduce to the lowest dose that controls the symptoms.
As my PMR was at the very beginning I would probably manage without pred again - but I doubt I would have held out the whole 10 years even at that level. Nothing gave me any relief - and believe me, chronic pain is NOT easy.
I have no doubt that there are people who claim they manage with alternative therapies - I used Bowen therapy and it did help certain aspects. But their PMR must be fairly mild. A few people have insisted they are managing with diet - very strict vegan improves joint pain in half of rheumatoid arthritis patients, maybe it helps with PMR. But most people struggle to stick to it and some of the versions quoted have required expensive outlandish ingredients which would have been difficult to obtain and a lot of preparation - physically I couldn't have done it, I could barely make a salad from prepared ingredients never mind cut, chop, liquidise and so on. I was in my early 50s and we were still earning a good salary, for older people, especially pensioners, it would have been very difficult if not impossible.
I have at various times tried a lot of dietary things - no wheat (I'm allergic to something in hard wheat), no gluten, no alcohol, I very rarely drink coffee anyway. Nothing has made any difference. I have a husband to feed - I already cook 2 different meals most of the time anyway, to change my diet much more would leave me in bed from exhaustion!
Good luck if you can manage your PMR without pred, most of us will be quite envious! However, knowing what I know now I think I could manage things with pred much better - and that is why I am here on this forum to try to help others.
barbara i know exactly what you mean and agree. BUT its just the fear of pmr returning. i just think its imprinted in the gray matter. that its returning and get a bit worrid. mind over matter is what i need hee hee
I think you've probably forgotten what life without PMR is like!! Pred does help OA pain too and almost all of us will have a bit of that at our ages. And there is a bit of coincidence maybe?
Our muscles have been intolerant of exercise for a very long time - and it will take them time to get back to being trained - and by training I mean doing anything we aren't used to doing, because that is all training is.
oh eileen thats horrid. im here counting down the 3 years they recon
it takes to be rid of this thing, and your still at it 10 years on. you have my
best regards. and then there is all of us comlaining after a couple of years
i just hope ypou are on the right track this time.
just wanted to say congrats . 1 mg is pretty awesome.
Congrats on your successful reduction to 1mg👏👏. Hopefully your niggly pain is just from lack of exercise and, although I don't like to accept it, getting older.
You'll soon be joining Mrs. O and the others in the 0 Club😊