Short background- I am 41, first presented 2+ years ago, diagnosed the middle of January- Dr. started me on 10mg prednisone and it worked wonderfully for about a week, then tapered off and I was back up to a 2-3 on a good day, a 4-5 on others- still not as bad as before prednisone, to be sure, but not nice, either. Dr. doubled my prednisone to 20mg about a week ago, and it is way better, but I am still having pain issues. I have come to the understainding that the fatigue really isn't going to go away, but I really hoped to be pain FREE, iykwim? I'm landing about a 1-2 every day, today is more like a 3
Hello heyyady, are you saying that this January 2015 you were prescribed 10mgs in responce to a diagnosis of PMR. And you have already tapered the medication? If that is correct then it's no wonder you are getting all the pains and stiffness back. Or are you saying that on 10 mgs after a week the pain returned at a level of about 2/3 out of 10. The normal starting dose for a diagnosis of PMR is 15 mgs for 6 weeks. This dosage has a lot of work to do. It has to get all the inflamation that is caused by the auto immune condition and keep it under control. That task does not take a couple of days it takes weeks and weeks although patients should see a good 70%. Inprovement within the first couple of days. That is one reason why you are still experiencing pain. Hopefully almost, but maybe not all of that pain should recede over the coming weeks, do not expect miracles overnight. This condition will eventually burn itself out but that could take years so don't rush things, reduction of prednisone must be a very slow process and minimum drops and not a first past the post race otherwise you'll experience flare up after flare up and you'll end up being on a higher dose of prednisolone for longer in order to get the flare ups back under control. This forum is great for us all to share our knowledge and to discover the correct way to handle this condition that although is not terminal has a mind of its own and can throw us many unpleasant curve balls. All the bedt, christina
Some people are never totally pain-free - and if the autoimmune part of the PMR is still very active you will need more pred. And - though you don't mention them - the family is an aspect here. I cannot believe you haven't gone back to doing more because you have less pain? Do your bad days follow a good day?
Part of the management of PMR is up to you: resting and pacing is essential. I know it is difficult, possibly even impossible but unless you can arrange something you will have to accept a degree of pain and stiffness, your muscles are intolerant of activity and take longer to recover.
Search for a blog called Despite Lupus - Sara Gorman and you have a lot in common even if the illness is different. You can learn a lot from her story.
I am on 20 mg of prednisone as well --- probably for a while. I had a bad flare up 10 days ago. It is normal to be VERY tired. .I just had my second 20 minute nap in the afternoon here, and I probably will have another one, soon. :-) I call them "power naps" because I feel refreshed afterwards.....for a while at least.
There is still some pain with 20 mg. I divide them up --- 10 mg at night after dinner ---- and then as early as possible in the morning the other 10 mg. It works well for me.
I have been really good, actually- I am doing more than I was a couple months ago, but am not letting myself go crazy with it, and am slepping every afternoon when my littleones nap- The "bad" just seems to be increasing again, like it did a few weeks ago. I am really afraid of being drug resistant and having to increase again. My Rhumi appointment is next Monday, so we'll se what he has to say.
Hi. I was started on 15mgs of pred in Jan 14 and I have never been totally pain free. My arms and lower back have retained level 3-4 pain. I have added certain things to my day which help. My low level fridge has been replaced by a fridge freezer with the fridge compartment on the top. I keep large tongs handy for picking things up (pred tends to make us clumsy, so I drop stuff a lot)! Also I have bought a long handled dustpan. Whenever I go out, I take a sturdy umbrella (too proud for a stick) as my balance has been affected. Sometimes the smallest things make such a difference to pain levels. As for the tiredness, it is the suddeness of it that is most distressing for me. I can be wide awake one minute and feel near to collapse the next. Fine if you are at home near an armchair but not so good when out or in company! Strangely, I find drinking ice cold Fanta zero helps. Other cold drinks don't work. Wierd! Hope some of this helps. Good luck with your rheumy appointment. If he runs true to form he will probably question your pmr diagnosis and try to convince you that you have fibromyalgia instead. Don't really know why but they don't like confirming pmr. Take care, Debbie.
It may not be the pred making you clumsy - the PMR does that too. I dropped so many things in the first few years and I wasn't on pred. My hands just didn't seem to work properly and I still occasionally have problems - I've just struggled to get the top off the vacuum cleaner drum to empty it!
LOL! It's awful at the moment. My partner is going through a stressed stage. Every time I drop something, he over-reacts and yells, nearly gives me heart failure! This, of course, makes me even more prone to dropping things......more yelling......more dropping! Washing up is slow. Have to use both hands to lift wet cups out of bowl onto draining board. Otherwise we would be on plastic plates by now......hang on thats a thought!
Camping shops sell lovely plast wine/beer/anything else glasses these days.
Tell him to do the washing up - or get you a dishwasher that works ;-) Before we moved to Germany we shared the washing up, one washed, one dried. After we got there he did less and less. When I asked (complained, I hate doing housework of any sort) he said his colleagues didn't help. I pointed out that was because they all had dishwashers.
As soon as we moved to a flat with enough space in the kitchen for one, that was my birthday present and it was the first thing fitted into the kitchen. It's been the first thing thought of in every kitchen since. I'd rather be without a washing machine than a dishwasher - you can't take the dishes to a laundrette!
Oh Debbie, I hope he's yelling at you because he's worried for you and not the plates. Tell him not to worry about you, dropping things is normal and tell him not to worry about the plates, let's face it there's no better excuse to get rid of the old and buy in some new! If he is yelling at you because he's frustrated about you dropping things give him a pair of thick woolly gloves and tell him to make the dinner or clean up. I think that experience should teach him a thing or two about PMR. You take care, and he mustn't yell that gives you stress and PMR loves stress! Christina
Ha Ha! He wouldn't be able to wash up. He's not sure where the kitchen is, as I've banned him for years (Mainly due to the yelling habit)! I'm thinking of slipping tranquilisers into his dinner lol. (Not really Mr moderator)! No space for even a small dishwasher I'm afraid. I'm definitely not going back to the launderette. Would be great if there was a washing up one though!
Hi Christina. No, he doesn't yell at me. He just jumps a mile and yells! Sometimes he does it even if he just thinks I'm going to drop something! (I'll leave to you to guess the result of that)! I can sometimes laugh at this mayhem but more often cry, as I do at most things these days. The slightest thing can set me off. Any controversy, the slightest criticism, items on the news, even adverts on tele. Costing a fortune in loo rolls! I'm afraid i stress about everything. Like all of us, I can't wait to be rid of this flippin' disease! Take care, Debbie
Just reading these post and thinking its good we can laugh at ourselves even though we are all in pain some more than others I think I wasn't in such a bad state as some of my friends on this forum,