I have been reading all your posts for months, and want you to know how much you have all helped. I am 55 and started with severe pain in April, knee, thighs, hips and lower back. By the end of May arms, shoulders, neck and a few random spots were involved. My PC suspected PMR but said I was too young...she did refer me to a Rheumy. We tried assorted NSAIDs with no help, I was now sitting in a chair all night as I couldn't lie down. We finally tried 15mg of the pred to no avail....after 3 days added 5mg and the pain was gone within hours. I felt like I was laying on a cloud at night (wide awake but didn't care) I felt like I was 17 again and have been getting many projects done on my "antique NH home". After 4 weeks tapered to 15mg, another 4 weeks to 10 and am heading for 7.5 in a week.The plan is to go to 5mg 4 weeks after that and stay with that til March. I do have some aches and am leary about the next drop but hopefully it will go well. I have been very lucky and have avoided many of the side effects, often a little too happy!!!!! I am a preschool teacher so the kiddos have enjoyed this. Sometimes the whole thing just seem surreal as I have found no one else to talk to about it, it seems like there is no one else around who has it.....so thank-you for sharing your stories.
Gail,
Glad the predisone is working and you are getting things done around your house.
I'm waiting for "rebirth" to happen, but nothing so great that I can do bigger and larger tasks. Just getting thehouse work done is enough for me.
It took me awhile to find this forum, and research the things I could about this. At the rheumy's office, everyone there has different diseases. RA, Lupus, and other really debilitating RA diseases.
I come home humble when I see these folks with walkers and double canes.
I've had a hard time with PMRA and look sick from fighting it so hard. Now hoping with some adjustments to my medications, I get moving again. Weather in NY is getting cold and damp, and the thought of all the holidays coming up and the craziness is something I'm not looking forward to. May have to encourage my family to keep things low key this year.
Donna, NY
Welcome Gail. Glad you decided to write in. If you have been reading theDear Gail, Welcome to the boat. You'll learn much from the dear ladies who man the oars on this old tub. There are many more of you than us guys which is why us men spend as much time as possible on the aft deck, smoking cigars and drinking adult beverages, whilst our specially chosen ladies are wielding the whip and beating the rowing cadence on our new drum.
PGR55, our PMR robot, is right on in warning you about the danger of rapid prednisone reduction. Below 10mg, you'd best try 1 mg per month, or even 1/2 mg per month. Let me give you an example of how sensitive your body is to prednisone. We had a bunch of grandkids over last night and with the disorganization of our usual routine, I forgot to take my usual 2 mg at bedtime (I am down to 8mg total, and take 6 in the morning and 2 at night...that seems to work best for me ). This morning I woke up feeling almost as bad as when I hadn't started prednisone at all. In the past, I tried going from 10 to 7 1/2mg and had to back off to 10. So be warned! Be patient. Our ladies will confirm that advice.
In the interim, you'll be assigned to a couple of days on the aft deck of our boat (we're all in the same boat) whilst you get acquainted with the whip-wielder and drummer, checked out on your preference for port or starboard rowing, and questioned on your preference of cigars and adult beverages in the event you get stationed aft with the guys due to some particular or peculiar talent that would enhance all our sorry lives.Yeah BOB, I was 3 hours late on my small evening dose 2 days ago & had a
horrible next day, very achy & tired till the next dose caught up with me.
Now i am good again. Down to 17.25 from 20. Doc suggested going very
slow... so I am actually just alt 17.5/20 this week
Then 17.5 for 2 weeks before alt w/ 15. Sounds slower than most of you,
but she suggested after I told her people were finding if they go to fast they
are rebounding. So why not go this slow, my side effects are minimal
pgr (aka the robot)
Hi Gail and welcome, and hi to Donna, Phyl and Bob. I know the feeling you describe of relief from pain and stiffness that makes you feel years younger! Glad you are having a good result with treatment. I will add my voice to the "don't hurry the tapering" brigade. Very important as you get lower down. My rheumy said to drop 1mg per month, but I found the drop from 10 to 9 caused symptoms to return, even though I was symptom-free on 10mg. So I got some 2.5mg tabs which allowed me to drop 1/2mg for the initail change and so I have been reducing by 1/2mg every 2 weeks, so far doing OK on 8 1/2. And I HOPE it never happens, but be prepared for a relapse or partial relapse as PMR is notorious for relapsing. Sigh.
I have been reading about the slow tapering....and have been deciding whether to follow the Rheumy's plan or those who know!....she has now started a maternity leave until March so if I have a problem now I have to start with a new Dr. I have had those days with some achyness and thought, here we go, so I split the dose 7.5 / 2.5 and got back on track. I have no problem with rowing and would definately enjoy a good cigar while learning the ropes...!
hi people
i'm on the way down and boy it's hard. I'm down to 5mg. as of last week. I'm very lame and sore today. Don't know if some of it could be from reaction I got from my inulin last night or if it was just coincidence. I do know that after I take my insulin to make sure I eat at least before a half hour. That was not fun. I feel like a truck hit me today. Gee Bob, would love to get on your boat, but you have to promise it stays in dock.lol Would love to have a cigarette with you but gave those up. I've gotten so darn boring that my most exciting thing I do is go to Costco.lol
I notice that on another thread some are taking procrit. What is that for? Is that suppose to help. Is that with in conjuction with pred or instead of pred. So far I like my rheumi. She seems nice.
take easy everyone and hope soon everybody will be without pmr pain.
Anna
Hi Anna,
Boy! Getting down to 5 mg is great. What did you start at and how have you tapered?
I gave up cigs 30 years ago and have an occasional cigar which I don't inhale, so you might want to join us. You wouldn't want to inhale the cheap stogies we have on board! Come on board with us anyway. We can arrange for insulin if you need it, and our boat is very stable...at least no one has complained of seasickness yet.
HI
This is my second trip with pred. When I was first dx the doc put me on 20mg. I had managed to get myself off of it. Then went and saw the Rheumi and she tested my blood and found the sed rate had gone up, so back on pred I go. this time it was 7 1/2mg. a day. She then tried plaquinill. Ended up couldn't take them. Made me sick to my stomach among other things that goes with a sick stomach.lol So am off of them. I have managed to get to 5mgs. Right now i'm in pain but not so I can't walk. It feels like this amount of preds is keeping the pain at bay. I guess next month when I go down to 4mgs. will really tell the tale.
Well Bob, it is not that I would get seasick, it's that I really hate water this above my head. I know i'm a big chicken but I since I have gotten older and have started to shrink, i'm close to being classified a dwarf. 4ft.11 in. So stay at the dock and i'm in.
Anna
Anna, We're not sailing (rowing) on water. We're in a ocean of Hope. Nobody can drown in that ocean, so come aboard. We'll get you a short oar and a cushion to sit on.
Maybe instead on going from 5 to 4 (a 20% drop) you might want to go to 4 1/2. My 1 mg pills have a little groove for cutting with a razor blade or pill cutter. There must be a reason for that. As many of our rowers will tell you, be very patient as you decrease the dose, particularly in the low numbers.
I'm in to the hope boat. As things has develop since last year, I still have hope. Ihave to take things in stride. I can control my diabetes, but I have high hope for a remission of the other 3 diseases. Time will tell.
How is everyone today? We are having a beautiful day. I live in the northeast, and it is nice and warm. Course tomorrow we are suppose to be in the 50's with rain. Thinking positive, It could be snow.lol Don't have my winter tires on yet.lol
take care everyone
Anna
Hi Anna.....I am in the northeast also and it is a BEAUTIFUL day. The foliage is at it's peak. Another hour of work and i can get out for a while....
Tapered yesterday AM from 10mg to 7.5......so far so good, I am not sure how many days it will take to know if It has been successful or not...can anyone help me with that?
Enjoy your day......Gail
Gail, I did the 10 to 7.5 also and for two days thought I was doing great. Had to go back on the third day, and am now down to 8, but one mg. per month.Hi
today i'm cutting down to 4 1/2. I listen to Bob. If all goes well in 2 weeks will try 4. Maybe the want of getting off these pills is going to cause more damage than I want. Time will tell.
How is everyone today. Today is my day of feeling sorry for myself. I'm sick of having all these weird diseases, sick of having diabetes, sick of not being able to do what I want to do because I have a breathing problem. Ok I guess it is time for me to go back to bed and get up on the right side.lol All this "woe is me" will pass and will continue as I do every day. Other people have it a lot worse than I have, so kick myself in butt and get going.lol
Thanks for let me air my little problems.
Anna
Don't worry about airing your problems, we all do that. And it really helps,Hi Anna!
You probably want to taper too fast. The lower the dose, the longer it seems to take to get adjusted to the lower dose. Be a bit patient and wait at least 4 weeks is my advice. I donīt cut down 0.5 mg at once but take 1 day with the new dose, two days with the old dose and repeat this once more. Then next week I take the new dose every two days and finally over completetly to the lower dose. This has given me a painfree tapering as the change is gradual.
Ragnar
Good Morning......My taper from 10 - 7.5 went OK. I do feel like I am balancing on the edge but so far nothing I can't deal with. Wow, the fatigue has definately set in though, especially after the higher doses of Pred. when I had endless amounts of energy. I am suppose to drop again at the end of Nov. from 7.5 - 5 but I think I will try alternate days for a while. I may even wait until after the holidays, I tend to get very stressed which seems to be a trigger for this.....Talk of snow today
Hi Gail!
Some time ago I wrote a post that it desnīt pay to taper too fast. From 10 down, it is better to take 1 mg at a time. I had to stay on 5 mg during a year because I was tapering too fast (1.25 mg at a time - I split a 2.5 mg tablet). From 5 mg I cut 0.5 each month and it has worked well. It is better to take it easy and be without pain or other troubles like fatigue!
Ragnar
HI
I did what you told me and went down to 4 1/2 mg. I have a bit of achyness and the fatigue is unreal. I notice my skin seems to more sensitive. This could be caused by the Fibro. or the lymphedema or what ever.lol
I take an ambien cr. and if I get 6 hrs. of undisturb sleep, I consider I've had a good night sleep. Oh well, I should be happy i'm at least sleeping 6 hrs. of undisturb sleep.
How are you doing with your decrease Gail? I hope you are doing all right.
Thanks for all the support guys. Some days it is light the world sits on your shoulders.
Anna
Hi
me again. I meant like and not light. The nuns would not be happy with me.lol
Boy it sure is quiet in here. How's is everyone? I hope you all have had a very Merry Christmas and and a great New Year.
As for me, i came down with the stomach bug only to be followed with this terrible cold. I don't usually get colds but when I do it really puts me down. It doesn't help that i'm so tired all the time. Ok enough whining. Some people have it a lot worst.
The best part of my Christmas was seeing my Great Granddaughter for the first time. They flew up from Alaska for Christmas. She is really a cutie. Course they are going back tomorrow Maybe as a storm is brewing and we are suppose to have a few inches of snow, like a foot. Good ole Vermont and Global Warming. Where is it when you want it.lol
My rheumi wants to put me on Mexothresate or something like that. Do any of you take it and what are the side effects.
any info again will be helpful.
Anna
Happy New Year to all. Went to bed last night feeling that a new year was starting and hoping I'd have less aches and pains and woke up worse. It's been a week since I started 5 mg of pred. BobW I wondered how you starting taking pred at night and the morning, did you or your dr decide? I'm wondering if I should do the same.Happy New Year......i have been very busy but have been keeping up with what's happening with you all. The last time I posted I was going from 10(7.5/2.5) to 7.5(5/2.5) which was successful then in Nov. went to 5(3.75/1.25), again just a few minor aches. My Rheumy wants me to stay on 5mg until March when I see her again. I thought, since all was going well, to try taking the 5 just in the AM. The first night my arms started aching, then my legs,bottom, collarbone, neck etc. all the familiar places but not with the intensity of pre-pred. It has been a week now. I guess I'll give it a few more days and decide whether to split it again. From what I am reading a morning dose is better but not as effective. My Rheum. didn't seem to have a problem with the split dose as long as I was able to taper down to a lower dose. I should probably have left sleeping dogs lie, but I get impatient. It sounds like a lot of you are getting down to 5mg or less. Good luck to all. We just broke the snowfall record for Dec.here in NH since 1876......been doing a lot of shoveling!!!!
Taking the whole dose of pred in the morning led me several months ago to setting the alarm and taking it about 0300 so that it would be effective when I got up. I even had a thermos of milk by my bed so it wouldn't bother my stomach. It worked, but it was a pain in the rear end to do it that way. So I went to the 80%/20% routine, slept better, and was still able to decrease my dosage over the months. ( For reference, I started at 15mg back in March 2007.) My theory is that a once a day dosage doesn't last a full 24 hours, and leaves you without relief for several hours after you get up while the new dosage is absorbed. Maybe someone will invent a time-release pred pill.
I'm now on 5mg pred and the two "Volaren" (the generic brand is not that expensive) and doing O.K. A bit sore and stiff in the morning but manageable. I can make a tight fist by afternoon in case I get into a fight with anyone. I'm one of the group that is affected in the hands in addition to the other joints.
For what it's worth, I would try splitting the dose and if it helps, do it that way. Them there adrenals will get the word one way or another that pred is not going to keep doing their job and is gradually turning the job back to them. If that doesn't work, try for an NSAID supplement. Keep in mind that your rheumy probably has not had PMR and that between you and the forum, you know more than he/she does about what works. The rheumy's chief value, as far as I'm concerned, is his/her ability to prescribe medicine and blood tests. Essentially, I'm saying that try to find out what works for you, since there seems to be a wide variation in symptoms and modes of treatment. The goal is to get off medicine but at the same time to preserve a reasonable quality of life.
Hope that helps. Happy New Year everybody!
Thanks Bob for the info. Only we know what kind of pain we have and I think it's easy for the rheumy to just guess what mg of pred will help. I keep telling the drs that I have trouble going up stairs and walking up ramps into buildings. They just tell me to decrease 1 mg of pred every month.
Teeger, the first rheumy I went to put me on methotrexate and after a month I called him and told him I was getting worse and had trouble walking. He said it takes two months for the medication to kick in. Well, when I practically crawlled into his office you should have seen the look on his face. I don't think he believed how bad I got. Needless to say in stead of driving 1/2 to go the closest rheumy now I drive 2 hrs. to Pittsburgh. I really trusted my first dr, but I guess we all learn some lessons in life the hard way.
Maudre, I took my pred in a split dose from 20 mg down to 10. At 1st i split