flare up when on prednizone | Arthritis Information

my question to everyone out there that has pmr, and on prednizone......................Can you have a "flare up" or a few days when you really feel terrible even when you are on the prednizone????
I have a lot of those days and I am really wondering what is going on.....................Thanks to all of you, Georgiana
Absolutely! I'm trying to take as little prednisone as possible and still maintain as close to a normal, active life as I can. I'm currently at 5 mg., but some days I'm very stiff and sore (never as bad as before I started on the prednisone) and will take an extra dose for a day or two only, then go back to my regular dose. I'm never sure what causes these "flare ups", as there doesn't seem to be any consistency. If it happens too often, I guess I'll have to consider increasing my regular daily dose.Hi Ruth,

When you say you take an extra dose, do you mean 5 mg. or more? Then is it all right to cut down on the dose so quickly? I am on 15, down from 30, but stilll have a lot of flare ups..............but I also had flareups on 30.............
Thanks, Georgiana

You might want to consult your doctor first, but the danger with prednisone is in reducing a regular daily dose abruptly. If you only increase the dose for a day or two, your body doesn't have time to become accustomed to the higher dose. For example, often people with allergies will take prednisone for a few days at a time, then not take it until they need it again. Or people who have been on prednisone for a long time but have reduced to a minimal dose or are no longer taking it, sometimes if they are sick or need surgery, they will receive a high dose for several days only.

I'm now on 5 mg per day, so if I have a couple of bad days, I might take 10 mg. one morning instead, or I might take 1 or 2 mg. one evening to see if that will help my morning stiffness. I would try that first before increasing my regular dose. However, I guess if you're in pain every day, then your regular dose is too low and you have no choice.

It's always best to talk to your doctor before making changes in your dosing.

Me too, I'm at 10mg now, and have lots of days with pain and feeling bad. A few days, I just go to bed. My nurse practitioner explained that what we are doing is fooling our bodies into producing it's own. So if you can, keep dosage where it is. I'm not sure about taking an extra one sometimes. It's just a terrible thing to have to deal with, but it's supposed to go away someday. Good luck to you. I enjoy your posts.To Ruth and B Rich, Thanks for your replies, I don't know what I would do if it wasn't for this site, that I can post my questions and concerns to someone who is going through the same thing as I am..................................There seems to be no light at the end of this tunnel, day after day of pain and fatigue is really getting me down, it is three and a half years, it is getting so i don't even tell my family everything anymore, I just get in bed when I feel like I can't move anymore................Has any one gotten better from this disease???????????Has anyone tried acupuncture or message tharapy?
Thank you all and God Bless you............Georgiana
Georgiana,

It would be interesting to know how long everyone here
has had this disease. I am thankful I haven't had the
temporal arteritis, so never had to take the really
high doses of prednisone (20 was the highest I took).
It was still hard to wean off, but I just stuck it out
through the pain. I have had PMR for probably 4 1/2
years now. The past couple of weeks I've noticed that I
don't have the morning stiffness any more, or the
stiffness I used to get after sitting in the car even
for a short time. My hips and knees are achy when I
walk, and my muscles feel tight, but I am thinking that
is my pre-PMR aches and pains (I also have degenerative
disc disease, and had a couple herniated discs 9 years
ago, so back has never been the same). I see my
rheumatologist in November, and we are doing blood work
for sed rate again this month as well. Am hoping it is
still going down. I did read an obscure site the other
day that said the length of disease duration for PMR is
3-6 years (that's all I didn't need to read), and felt
like I might be one of the longer ones, going at 4+
years, but those symptoms are different now, and not as
bad. I still have days where I am so tired I don't do a
thing, but my husband understands. I hope your family
is supportive of you and lets you have those down
times. I know the feeling of hurting day after day, and
it does wear you down. Rest when you need to (we don't
always do that), and learn to let some things go. It
WILL get better. Just wish I could tell you when. It's
the not knowing that gets me down sometimes, because I
feel like the rest of my life will be like this, and I
sure don't want it to be. That's when I have to find
something else to occupy my mind - something positive,
or funny or whatever. Get lost in a good book. Watch a
funny movie. Something, anything to get my mind off
hurting or feeling sorry for myself. Anyway, enough of
my rambling. Just wanted you to know there IS a light
at the end of the tunnel.

I have not tried acupuncture, but have done massage.
Massage used to feel good, but the last two times, I
felt really bad afterwards (and not so good during -
maybe I had the therapist do it too hard). I think it's
not too good to have a deep tissue massage when there
is inflammation; that's probably why I hurt so bad. For
me, I would need a light to medium massage every day to
feel good, and that's just not going to happen unless I
win the lottery. ('')

Hang in there and keep us posted.

Reni

I just read on another message board that someone's doctor estimated that 70% of people with PMR are off prednisone within a year and 95% are off it within 3 years. That's rather encouraging, isn't it? I've been on it over 7 months and am at 5 mg, so I don't know whether I'll be off within the year, although I felt so good walking the dog before work this morning, I wondered if the PMR had gone away.

Reading about the experiences of others with PMR, I'm grateful that mine hasn't really affected my lifestyle too much. I've never had days that I had to stay in bed, always been able to keep up with the farm chores, only took one or two "mental health" days off work using PMR as an excuse last winter.

Sometimes I wonder how much I owe to the supplements I take, but I'm afraid to stop taking them in case I find out they're helping a lot!

So good to read all the posts I'm having a wonderful, almost pain free day with no fatigue. Yesterday was good too. But, this is rare to feel like me again. Hang in, Georgianna. it just takes a long time they say. Don't feel alone. It's an absolutely awful thing to deal with.

Congratulations to Nitwit. Lets' pray it will stay gone, and yours will be over. The rest of us can't wait til it's our turn to say that.

Reni, Ruth and B Rich, and everyone,

I love you guys, had a really bad few days last week am feeling a little better today.........Read on another site that PMR is an inflamation of the blood vessels..........Has anyone heard this, I thought it was a muscular thing.........Let me know Georgiana

Georgiana,

I have read the same thing, that PMR is inflammation of the blood vessels that go to the muscles of the "shoulder girdle and hip girdle" And that's exactly how someone explained their pain, is that if felt like their veins were swollen.

I could not bend at the knees to kneel to the floor. The backs of my knees felt swollen as if their were huge golf balls behind my knees.

Glad to hear that you are feeling a little better today.

Janet

I have also heard that it is an inflammation of the blood vessels as well as multi muscle pain (thas what PMR really means). While looking for a website that tells about inflammation of blood vessels, I found this. The best I found was PMR occurs when white blood cells – which usually protect the body from harmful bacteria and viruses – attack the lining of the joints by mistake. What exactly causes the cells to act this way is unclear. on http://www.nhsdirect.com/articles/article.aspx?articleId=291 Some other interesting links are found on www.wikipedia.org if you enter polymyalgia rheumatica. In a Swedish link I red It is a vasculite that strikes medium large and large vessels.

I also found a very good general description from British Broadcasting Corporation http://www.bbc.co.uk/health/conditions/pmr1.shtml

Hope this gives you some help.

RDSwede,

Thank you for providing those links, I learn something new about this condition every day, and I so look forward to this message board, all of you are so great and it really means a lot to me when I log on my computer and someone has answered............... love to all and god luck.Georgiana

I've heard it is a blood vessel thing, an auto immune thing where your body attacks the connective tissues in the joints and several less popular theories. No one really knows. It's a terrible thing to have to deal with. I am surprised at the number of younger people on this site with PMR. Everything I've read says 70 is the median age, hardly ever under 60, and it will go away in a year or two. NNNOOOOTTTT! Not according to lots of folks on this site.

I started prednisone 20 mg in Feb 06 and am now at 9mg. I look a lot less like a Panda bear now, but still have a lot of pain and fatigue. I had 4 great days last week which was wonderful. I usually will have an occasional good day, and rarely 2 in a row, so I feel encouraged. Maybe I've bottomed out. I enjoy reading everyone's posts. I pray you'll all have a great week. B Rich