i got pmr in August 2016, started pred that September. Currently I am going to 6 mg using the dsns method. But...I am never pain free. Stiffness and some soreness in thighs, especially in the mornings. In the afternoons it eases a bit--that's when I do my little bit of walking and housework, etc. yes, I know that people on this forum lead happy vibrant active lives, and they might be the exception--that's what I want to know: I would like to hear from others who are not pain free either. My big question is: do I keep tapering? I've gone back up a couple times but those times I was having pain in my hands and feet, and aching in my legs in the night. Now I'm not having those pains...just stiffness and soreness in my groins and upper legs pretty much all the time, worse in the morning. Standing for any length of time is very very hard.
you are supposed to strive for how you felt when first put on the higher doses of pred...to be honest, I don't remember, but I know I was completely immobilized by the side effects of the pred--sleeping 3-4 hours, jittery, etc. I would say I'm doing better overall now. So....my big question: anybody else out there never pain free and...do I keep reducing the pred?
It sounds as if you should up your dose. I was diagnosed Jan 2016, given 15 mgs. I have been on 6mgs all of 2017 with one attempt to reduce 1/2 mg. Sore shoulders told me to not reduce so I upped it to 8 for one day, then after a few days back to 6,my comfort zone. It is my understanding that the pain is from PMR, not pred.
Hi Twopies. Im sorry you're in pain, but at the same time its good to hear someone describe my symptons exactly. I am & never have been pain free. Ive had PMR since Oct 2015 & down to 5mg after lots of ups & down again. Im seeing my Dr tomorrow as so fed up & just want to know if theres anything else can be done. Trouble is, lovely though he is, they just dont seem to know much about PMR. Good luck, hope you get some help & relief. ❤️
Hello, and your sound very similar to me. I have been on pred almost 3 years. The only time I was actually pain free, was in the beginning, on 20 mg. starting dose. Then due to GCA, upped to 60, pain free again. Now, like someone else posted, I thought I knew PMR pain, but I am doubting myself. I was to rheumy (I am in US) as pain had increased in arms, shoulders, hips, bad in shoulders...any activity increased the pain. She asked me that question, and I THOUGHT I knew difference. I was down to 4, ready to go to 3, and she increased back up to 5. I had some little relief, only in arms and hands. I am worse in AM, and gets more intense if I do anything strenous. I am desperatly trying to increase my walking. I was so healthy, and active 3 years ago, really most of my life..for which I was always thankful. This totally took the wind out of my sails. I had several things happen, that I still dont know if they were related to PMR...multiple pelvic fractures, for no reason, developed a vaginal/rectal fistula, involved extensive surgery. Orthopedic Drs. told me I would be confined to a walker...ugh....I thankfully was able to get away from that. I do try to be thankful for any and all improvements, and remember that the past is over.....so, you are definitely NOT alone. all the things you stated, could be me, too....Rheumy says listen to your body, don't worry about the extra pounds...but, oh so hard, since I have always watched my weight, belong to a wonderful weight loss group, and get support from them, too. Stay in touch, you can PM me if you wish, Judy in USA
Hi Twopies - I was diagnosed in February 2016 and like Peggy was started on 15mg, I'm now on 8mg but have pain around the tops of my thighs /groin - pretty much all the time, it does ease off slightly in the afternoon but I can always feel it when I walk! I also get pain across my shoulders fairly frequently, usually every day but it's not all day. I walk at least an hour a day and do yoga three times a week which helps but I'm fine just standing or sitting it's movement that causes the pain to kick in. You seem to have reduced pretty fast being at 6mg already - was there a reason for this? Peggy, you also have reduced fairly quickly. I'll be happy if I'm down to 6 after a year. When I started at 15mg I was pretty much pain free but reducing isn't easy - however necessary as I want rid of the hamster face!!
Many people never are totally pain-free. The degree of freedom from pain you achieved with your starting dose is your reference point. You are reducing looking for the lowest dose that gives you that. It shouldn't be too difficult to remember because at each dose you should be reviewing: do I still feel as good as I did at the last dose. If you don't, you go back to the last dose, wait a bit and try again. What you are looking for is INCREASING pain - as long as it stays stable and is manageable that is OK. If it starts to increase after a reduction then it isn't OK. Stop, go back, reassess and see what happens.
If you have groin pain and upper leg pain it could be due to low back problems, spasmed muscles for example, which are irritating the nearby nerves and causing referred pain into the upper legs. That could be myofascial pain syndrome or piriformis syndrome. Or the groin pain could be trochanteric bursitis - which will also cause pain down the outer aspect of your thighs, especially tender if you try to lie on your side. I've had both at various times both originally at the start of PMR and since with flares. I have physiotherapy for the back muscle problems and have had intramuscular cortisone shots for the bursitis - not into the joint, that isn't necessary. All the things I have mentioned are found more often in people with PMR.
If the mornings are a problem, maybe you need to try taking your pred earlier in the morning - lots of people take it very early and settle down for another couple of hours by which time it is working. Or possibly at night so it is already working by the morning or even splitting it, taking 2/3 at one time and the rest at another so the effect is lasting overnight and giving you a better start to the day. Everyone is different and what works for one person may not work for another.
It isn't a race and it isn't a head over heels tumble to the lowest dose possible. It is a compromise between feeling as well as you can and the dose. Obviously staying at 15mg isn't realistic even if you did feel great there but once you are at 8mg or so 1mg here or there isn't particularly bad. The Matteson paper shows that longer periods at these sort of doses isn't the end of the world. It took me over 4 years to get to under 9mg - you are doing pretty well.
It is probably worth asking your doctor about those options - because it depends on what sort of pain and where and only a physical examination will identify that.
What else do you want to have done? Pred is the drug of choice for managing PMR. you seem to be doing pretty well and are on a very low dose after 2 years. PMR burns out for only a quarter of patients in under 2 years, 4 to 6 years is a more realistic time frame for half of patients. Now, having achieved a low dose that is not going to cause a lot of problems you have to be patient and wait it out. 75% of patients are off pred in 6 years - the rest of us are stuck with it for longer but only 5% have it for the rest of their lives.
You sound to be describing trochanteric bursitis - that causes groin/hip pain and walking makes it worse. See my other post.
I lost 35lbs of PMR and pred acquired weight while still on between 10 and 15mg pred. It can be done by cutting carbs drastically - and I am not the only person to do so. There is no sign of my hamster cheeks now. I'm still overweight but not that bad and there is nothing to suggest I take steroids now.
Taking pred makes your liver release random spikes of glucose - which triggers release of insulin to deal with it. That on top of the normal insulin production when you eat carbs encourages deposits of fat in particular places. Cut the carbs and that is all reduced and your body uses up the fat deposits to make energy. It also reduces the risk of developing pred-induced diabetes.
I don't get the impression that many of the followers of this forum lead happy vibrant active lives. I think getting one out of three of those descriptions would be me on a good day!
Me too...and...when I get below 7 mg, I blubber—a lot. Over my dead pets, dead parents, heck, even a commercial on tv. Seems to have to do with cortisol levels? Very annoying, to say the least. Been blubbering a lot this morning. But I will perk up later today... 😋
Some 10 years or so ago the NE of England PMRGCA charity produced a DVD about what PMR and GCA do to us as an aid to explaining to family and friends what is going on. It was called "You are not alone"
The charity came about because 5 women "met" here, this is the first and original PMRGCA support forum, realised there was nothing else to provide information for patients and doctors weren't very good at it. So they got together and the rest is, as they say, history.
Twopies, I started on 40 mg almost four years ago and was only pain free for the first two weeks. Docs had me drop too far too fast. Even though I went back up to 40 mg for a month I never got my legs back. I call them my cement noodles. Basically heavy and weak all the time. I'm currently at 10 mg and have had three flares, the last one in July this year, which I got under control quickly with a minor increase in prednisone.
I get debilitating groin and hip pain on occasion, but have decided this isn't PMR pain for me. More like the trochanteric bursitis or myofascial pain that Eileen speaks of from time to time.
I've also discovered that a lot of my morning stiffness is not PMR, but rather normal aging issues. I confirmed this recently when I stopped taking 8 hour Tylenol (acetaminophen) muscle and joint pain before going to bed for a few nights.
Over the years I've pretty much determined that the pain of a flare for me rears up in my neck, upper back, and triceps.
We're all so different in how this illness affects us, how we react to prednisone, etc. it's an individual puzzle and somehow we have to figure out how the pieces fit together. Every one of our puzzles is unique.
I also was diagnosed August 2016. I am now down to 4 mg Pred and, like you, never free from some discomfort. I would rather suffer that than the Pred side effects which were pretty awful. I suppose I have just made myself adjust to the physical constraints of PMR and constantly hope that eventually it will fade away - before I do preferably! I have better days and bad days but thankfully on some better days I can do a little gentle gardening or walking.
About reducing, its up to you. I made a conscious decision to get myself off Pred- both my doctor and rheumatologist agree that it is the way forward. I see the rheumatologist again in April when I shall have been off Pred for a couple of months. It remains to be seen whether I have any or all of the symptoms still by then. The rheumatologist tells me my symptoms are indicative of Pred withdrawal and that I haven’t got PMR any more. I am sceptical about this but am prepared to wait and see. I’ve had all the tests for other conditions so I guess she feels confident in her diagnosis.
As pred withdrawal and PMR are virtually identical I don't know how your rheumatologist can be so sure. You will know if PMR really has gone, and I hope it has, if when you are completely off pred there is no increase in whatever discomfort you feel.
How interesting, Carolyn...please keep me posted as to your progress! I would be where you are with the dosage but have gone up a couple times because I felt the pain returning--aching in my hands and feet, and aching in my legs that interfered with sleeping. These symptoms improved right away when I went back up,
When i I tried to reduce to 4 from 4 1/2, the fatigue was so debilitating, I could barely function so I went back up to 6 1/2--probably too big a jump but I didn't want to risk a flare. This time whenever I get to 4, I'm hoping that by using the dsns method and staying at each juncture for 30 days that I will do better energy wise. I don't have a lot of energy right now, but it's not debilitating. Pred seems to give me every side effect ever listed so like you, I'm so hoping that one of these days I will recover from its effects. Best wishes to you!
I am by no means an expert, however, my major worry is the affect of on-going inflammation on my body. It can do some nasty things. Fortunately, ESR and CRP have been good markers for me throughout my journey. They were through the roof on diagnosis. I have the levels checked quarterly and have identified that at a level of 10 (our lab maximum) is pointing me to a flare. If my symptoms warrant I increase prednisone slightly (1 or 2 mg) for a short time to get things under control, I simply will not allow the inflammation to build and get into a full blown flare requiring a more significant increase.
10? Your lab maximum? If your esr is more than 10, you increase pred? Or do you mean crp? I’ve never had elevated crp; last esr was 11 so I thought that was ok...So did doc...? Thanks!
Every lab has their own "normal range" for inflammation markers.. I'm referring to CRP , which I understand is a more reliable marker than ESR. In my case a lab reading of <10 is OK, i.e.within normal range, However, once I reach or pass 10 it pretty much shows my PMR is more active .