I did it. I have been off pred for 4 days. Nothing dramatic happened. I have been on 5 mg for a month or so. Last week I "forgot" a pill. I had some back spasms that may or may not have been related to that fact. I "remembered" my next week of pills. Then I permantly forgot. I did not feel that much more pain - just more stiffness I think. It is hard to tell because every day is different anyway. I guess my point is that I really cant tell all that much difference. And my mind is not clouded with worry about it. I can take the pain meds on my own terms.
I still have pain. I guess it depends on each person what to do - your pain level and lifestyle and mindset. I am retired so I am ok staying home. The last few days I have the most trouble getting up. I need a walker to stand for a few moments then the first yard or so is difficult then I can trudge along.
I thought I had lost the pain in my knees but its back. But the pain in my hips is gone. My shoulders are stiffer. My right shoulder is really frozen shut good. Funny - I always read that PMR is the same on both sides but my right knee is worse also. And thankfully the pain in my back is gone and I have not had any of the parilyzing back spasms. If all things were bad at once I would be doomed. To get up and down you need to put pressure somewhere. I try to not take but a few pain meds a week. I took one last nite so we could go out to eat. I did notice that the med did not seem to work as well. That was my first pain med without the steroid.
I got a wonderful present from my husband for Christmas. An adjustable sleep number bed. Oh my gosh. You can push a button and it will lift your back up to sitting. So most of the dreaded effort of getting out of bed is done for you. And I can sleep in the zero gravity position so there is much less pressure on my back. I have had great sleep.
I still have the effects of the pain med from last nite so today is a great day. I am stiff but can get up and down without thinking about it. Stiff is one thing - pain is another. I still take my high grade omega 3 fish oil - about 7 or 8 grams a day. I think that has helped. So far I have not noticed any physical side effects of pred.
I am so glad you managed to get off of the pred Smartie. Did you have problems standing before or is this just since PMR? I am aftraid the end is a long way off for me. I just managed to get down to 17.5 and I'm about to try for 15 mgs next week. I also have been diagnosed with oseopenia and was given a prescription for Didrical which made me deathly ill. Needless to say, I quit taking it immediately and will discuss other options when I next see my GP in a couple of weeks. It seems we are damned if we do and damned if we don't with this disease.
I have been unable to post anything on this board for a while as it said something about cookies and browsers that I had no idea about so finally son came and fixed it yesterday for me. It has been very quiet in here guys. Is that maybe a good thing....everyone feeling better? I sure hope so. I had a few bad times since my last post but thankfully had some very good friends on another board pull me through.
It is very depressing outside right now because I think it forgot how to quit snowing. I have been able to help with the shovelling somewhat this year, thanks to the pred, but sure have to get into more exercise and weight control now that the Christmas season is over.
Hope you all had a great Christmas and my very best to you all for 2008.
Most of the time my hips hurt so bad every step was excruciating. And getting up and sitting down was horrible also. Funny how the pain comes and goes and changes. But right now the worst is getting up and sitting down. And just starting to walk after just getting up. All this because of PMR. I was very healthy and just a year and a half ago i lived in a foreign country and walked 10 miles a day, snorkled, all that jazz with hardly any problems. I did have some stiffness in my ankles after sitting awhile or upon getting up but it wore off after just a few steps. Didnt slow me down at all. Funny - now my ankles dont hurt at all. I am down south so snow is not an issue. I cant imagine adding that to all this. I also have come down with osteopenia this last year and this year was found to have osteoporus - just a touch in a part of my lower spine. So along with the pred i had to take fosomax. Since i cant exercise much I guess i will continue with it for awhile. I am very anti-med. If you are taking calcium - try the chewable kind - it should digest easier and you may absorb it better - at least that is what I was told. I take a variety of extra calcium and vit d just to cover all my bases. I dont think I am near the end of this PMR - I am just trying to cope with the least amount of meds. smartie, congratulations on getting off of pred. My friends tell me they can tell a difference and I don't seem so cloudy. I hope I don't ever have to take it again, but if I were to get where I could not get out of bed, then I would have to. I also have an adjustable bed and love it. We want to replace it with the sleep number soon. Keep us posted. GeriI can not imagine all of that pain and having been so active a year and a half ago must be so frustrating. I guess I am a big chicken 'cause even though I hate the side effects of pred I have resigned myself that in order to carry on I will continue with it as long as I have to. I could not stand to give up my golf game come springtime....such as it is. We have a great Grounds Super. who let me take the cart as close as possible to my ball so was able, these past two summers, to get out a fair amount. After starting pred in July, I was so hyper that Hubby & I were on the course by 6:30 a.m. most mornings and I loved every minute of it.
I hear you about the meds. Before PMR I would take an Ibuprophen once in a while and now I am taking 10 pills, counting the Omega 3, vit. C and Biotin for hair loss. No calcium yet but should look into it and the chewable kind. Thanks. I seem to be in the health food store at least once a week. Hope it all helps. Did you check into the new treatment for Osteo. that you take once a month? (I can't think of the name right now). We can't get it here in Canada yet but I think I would rather have a once a month treatment than once a day. Such a hassle.
I meant to mention how great that bed that you got for Christmas sounds. I am lucky if I get 4 hours a night and get very frustrated when I wake at 4 a.m. and can't get back to sleep. I must admit I did get 6 hrs. last night but it too was broken.
The cold weather does not seem to affect me as it does so many others but I would still prefer to be in a warmer climate. I don't know what I would do if it was a factor as many people with PMR in the north are suffering right now.
Hi Joyce
My PMR started roughly around Apr. 2006 with a very sore and swollen right knee. After a long and complicated trip with one bad diagnosis after another...everything from S.A.D to depression to it being a weather related problem...I finally got a new GP and she sent me to an Internist who, thankfully, diagosed me in July of 2007 with PMR. After two tries and two major flares I have just managed to get down to 17.5 from 20 mgs where I started. The length of time for this disease varies from what I have read. I just met one lady from my small town who has had it for 20 years and also read just today of two other ladies who have had it 10 yrs. It seems the average is around 18 to 24 months. Let's hope so!!! This is an excellent forum for answers and morale boosting. I used to come in here for answers long before I joined and loved the banter.
Hi pgr555.....Thanks for the info about splitting the pred dosage but I had this discussion already with my new GP and thinks with all the stomach problems I have I am better off taking it all at breakfast and before 9 a.m. I am a terrible pill taker anyway so would probably forget. While I am thinking of it there is an excellent post by LevLarry on the main page about prednisone. The article is written by Dr. Fusca and I just went through it to refresh my memory.
Smartie....It does bother me that you are in so much pain. Are you still seeing a Rheummy or GP just in case there is something else there? Please take care.
Hi all, Smartie, well done with getting off the pred, but I do say it with mixed feelings. Two weeks off pred and I am back to square one (as predicted by my docs and as I expected). Sore arms, stiff neck, sore upper back, ribs, shoulders, lower back, headache, fatigue. Ho hum!!I am not in all that much pain. Much better than i was originally....at the moment. Since i took a nsaid two days ago - some pain has not returned... I havent needed the walker to help myself up. I only have pain in my knees although they are also very stiff. And my shoulders are very stiff. I think I am much better off than some others. I am retired so no job and no small children. Though I think of myself as young - 53 - i have now accepted this thing and have changed my life around it with not too horrible results. I went out of town christmas to visit a son and had a great time (took pain meds). Since I am home - I watch movies and tv and read more. I have been cleaning out my house and getting rid of a lot of stuff. Also, have been getting work done on the house that needed to be done - new counters, landscape, etc...a little bit at a time.
I wonder if those women who have had pmr so long only have pmr. I google every day...I read yesterday that sometimes pmr will develop into RA. I have had lots of tests by two rhumys and i seem to have only pmr at the moment. About 8 years ago i had a frozen shoulder. I threw away the Vioxx prescription and just endured it. It was pretty bad but it went away in a year. I am going to try to get thru this thing also.
Chico, i am so sorry your pmr came back. Your constitution about all this sounds a lot like mine. This is just something that was put to me and i will deal with it.
Right now, although I do complain, this is the best I have ever felt since coming down with pmr. No pain in chest or back or collarbone or arms. No back spasms. Just knees and shoulders.
I also read about Krill Oil - anyone taking that? It is supposed to be better than fish oil. Since krill is low on food chain there is not that much toxity and it is so rich you dont have to take so much...some other things i cant remember. I take liquid fish oil - though I may switch kinds - i am taking one that has gla in it and i think i may need one without...i am kinda confused...sometimes i read conflicting things.
Smartie
I started out on 10mg for 1 month then lowered to 9 for 1 month(and so on) but when I got to 7 I had trouble and went back to 8 for three months then down to 7 for 1 month until now I take 5 until I go to the dr this month. I take one 600+D tablet after supper and the fosamax in the morning. I still have pain in my knees, hands and upper part of my legs. At work I put my sweater over the top of my legs and that kind of helps, but when I get home I use a heating bag on my legs. The dr said if I was to take anything over the counter I would have to call and get an OK from her. I didn't think I could take any pain med. Joyce
Chico, so sorry you are having all the pain and fatigue again, you have the greatest outlook, so i know you will do o.kHi chico and everyone, I am here everyday reading how you all are doing. So sorry chico you are having some pain and stifness. I know it is hard for you not to take the pred to get releif.
I am still pred free. The hardest time for me was Christmas Day night after everyone left. I could hardley walk. I am always the one waiting on everyone, it's what I like to do. I wanted the pain to go away so bad, but once I sat and relaxed with a heating pad I was as ok as I could be. I see my dr in Feb. I called there the other day for them to send me stuff for my bood work so I can have it done before I see him. I am courious to see what my SED rate is.
Hang in there, my prayers are with you all. Geri
Well, I got a bit of fever - went to a little over 100 so i got scared a bit then it went down. My knees are killing me. And I have a sore under my tongue. I had one last month on the inside of my lip. I am hanging in there but the knees are just killer. I had to take a pain med today...I may try fasting to see if that will help....my son suggested it.Oh Smartie, I can feel for you. My knees are what hurt me the worst too. After standing for awhile they just wouldn't bend. I found that out at a Fair, where I walked for about three hours and ate a funnel cake and several pieces of pizza. Sugar and carbs. I found an article then that said too much sugar and carbs aggravated the adrenaline gland that was already stressed with PMR.
So I think your son's idea of a fast is a good idea. It will let your body calm down. My doctor said when I fast, I should drink some sort of juice.
I'm wondering the sores in your mouth are due to some vitamin deficiency? I have been taking 2000 mgs of Vitamin A which some people on this board have been doing. I've been doing it since Thanksgiving and I think it has helped because I had been feeling better every day. Until I got an ear ache on Dec. 30th.
Hope you feel better soon, hugs, Mary