Hi MaggiGrace. Be very careful taking that much Tylenol. It can cause liver damage over time. I was told by doctor that steroid injections will weaken the surrounding muscle/ligament tissues with each inection. It has been my experience that if you up the prednisone dosage, you do not have to do injections. I guess, it depends on if the injury is part of PMR or another problem. Keep up the good work by walking. It does help to keep our muscles (even the heart is a muscle) strong.
Thanks EileenH, No I felt better on the 10 mg. I just started seeing the rheumatologist last week. She will probably tell me more on next visit.
Were you told to drop from 10 to 5 just like that? If so no wonder you feel rough. This isn't an illness where you can drop pred dose like a normal taper. You start at a dose that clears out the inflammation (like spring cleaning) and then reduce in very small steps and not too fast to find the lowest dose that manages the symptoms which you then will need to stay for some time (day to day dusting). It has no effect on the underlying autoimmune disorder that causes the symptoms we call PMR, that is separate and there is nothing that will cure that - but in time it should go into remission and then the symptoms will go away. This is a months and years job not a days and weeks one.
By reducing in small steps (not more than 1mg) and not too fast (maybe once a month) you can identify the right dose more accurately. Big drops will bring symptoms back and you'll have to go back up - and end up taking more pred than you need have done.
And don't let the rheumy bully you into reducing fast - they have rarely had PMR themselves and appear not to know much about managing it other than it responds to pred.
No one told me no exercise. After one month the nurse asked me if I was taking it easy. I am taking care of house , bills, taxes, all house work,and a husband vwith a form of Parkinson disease who uses a walker. I have noticed I DO not have as much pain if I lie down after supper. No one even mentioned activity. Thank goodness for this forum. Thank you. Pat
Eileen, I learned my lesson about reducing too fast. I will follow strictly reducing 1 mg a month while on 20 mg. I have a new GP who agrees with me. I am starting to feel better. THANKS as always for your caring guidance. Erika
John, you are so right! I had to learn my lesson, and this previous flare was the WORST! All because, I reduced too fast.
It is back to rain here in Oregon......Greetings, Erika
Not only me Erika! Sorry about the rain in Oregon got to keep it green in the Willamette Valley! Brilliant sunshine here in the sunny south of the UK - I have even got a bit of a tan - mind you I have spent a lot of time swinging and dozing in my garden hammock. Also helps revieve the stress.
Pat, I have noticed myself that I have less pain after taking a nap after lunch ----- and lying down after supper. I ride my stationary bike for 10-15 minutes in the morning and do some Yoga like back stretches.
I do get tired more easily than I used to in the past .....before PMR.
You have lots more to do than I have to.....resting in between is important. It is so good to have this contact with fellow sufferers.... and I still learn from everybody. Hugs, Erika
Send it south - I'm sure California would accept it gratefully...
Like the others, my main suggestion is reading this forum (including older posts) and raising any questions you have.
One of the challenges is determining the right prednisone dose. As Eileen says, the goal is not getting off it as soon as possible (which many doctors seem to think) but taking as little as you can that CONTROLS THE SYMPTOMS. If you have pain, you have chronic inflammation and that may be as bad for you as the side effects of prednisone. The underlying disorder will last as long as it lasts. The point of prednisone is controlling the inflammation and pain- some doctors act like going off prednisone should get rid of the PMR!
Another tip is that we are all different- the dose of prednisone, the pace of reduction, the amount of exercise- there is no cookbook, so you'll have to work out what is best for you. You probably want to cancel any marathons you have signed up for, but you don't want to be totally inactive either. Most here recommend walking.
A major theme here is SLOW reduction of prednisone dose. Reducing so fast that symptoms recur just makes things worse, requiring you to go back to a higher dose and stay there longer than if you'd reduced slowly. I am having real trouble with this myself, since I continue to need a relatively high dose (20 mg) and my attempts to get below this (despite traveling) have probably exacerbated the situation.
Be sure you know the warning signs of "giant cell arteritis" (GCA), also called "temporal arteritis." This is a potentially very dangerous condition that can cause sudden, irreversible blindness. Relatively few people with PMR develop this (and only a small percentage of those actually lose their sight), but you should know the warning signs and what to do if they occur.
Finally, I hope you have a doctor who will listen to you. Some do, others pull out the cookbook and blame you if you do not respond as they expect. The folks here can provide you with lots of great information, from their experience but also articles written for doctors that can help you out.
I hope things will go smoothly for you!
Hi iv just been told iv got pmr started of at 20 pred then went down to 10 Then dropped 1 every 4 weeks got down to 7.And bang felt like i had been hit by a bus.So my Gp Put me up to 9.I feel a bit better than i did .These steriods are making me so hungry am putting weight on like nothing on earth.Has any1 got any reccomendations some sort of diet that will help.Im only 49 and thought i was to young to have this.Its bringing me down so low i feel misrable.Some days are a real struggle i feel about 80. .
To help with pred-associated weight gain many of us have had a lot of success by cutting carbs drastically. Pred changes the way your body processes carbs - and that leads to the depositis of fat in the usual places: face, around your midriff and on the back of your neck.
If you still feel that bad - you either need a bit more pred for now or you need to learn about pacing. It doesn't mean you won't get to a lower dose - just not yet. And you need to reduce in smaller steps, especially under 10mg. You have been on pred long enough for your adrenal glands to have to wake up again when you got to 7mg. That may have been part of you feeling so bad there.
Plus, I do hope your GP is aware that you are not just reducing to zero, you are looking for the lowest dose that manages the symptoms as well as the starting dose did.
There's a load of reading here:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
- and a slow reduction scheme that works extremely well to avoid flares until you get to that lowest dose is in the replies, just scroll down.
My husband , also diagnosed recently, has been told to use a stationary bike for 5-10 minutes a day but with NO friction, simply gentle pedaling.,I honestly don't understand how this will help but those are the doctor's orders.
Thanks Eileen.im on 9 just now and feel ok with that.Soon as i go any lower thats when it hits me..i have to take these for 2 weeks then drop to 8 one day then back up to 9 the next day then 8the next day then 9 and so on for 2 weeks.I will cut out all carbs stick to fish etc But by god its hard.i had never heard of this illness in my life its a sore 1 and not easy to cope with.Some days i can hardley get out my bed for the tiredness.
It is hoped to keep him moving I imagine. Many patients find walking hard work so the bike is possibly easier. There is some evidence that light exercise does help with PMR. I had 5 years of PMR without pred - I did an aquafit class every morning Mon-Fri and after it I was able to move relatively comfortably although the bursitis pain I had was still there and I was still a bit stiff. The improved circulation probably has a lot to do with it. A study in the north of England is giving patients a pedometer and encouraging them to build the amount they move.
Do look at the slow reduction scheme in the replies to that link. It is being used in a clinical study in the north of England and has been used by a lot of patients on the forums with a great deal of success.