Hoping for a happy ending | Arthritis Information

Just want to let everyone know that things are really looking good for me. I've had PMR since Feb/06. Was down to 6 mg of prednisone in September, then went to 5 and was finding some days were pretty bad at the start of October, so I was worried I would have to go back up. Then last week, one day it felt like I was normal again! Just the usual aches and stiffness from OA, farm work and horseback riding.

It's been over a week, and I'm decreasing to 4 mg. and still feeling like the PMR is almost gone! I'm not going to hold my breath, because I've heard that it often comes back, but ... so far, so good!

Thank you for sharing! I believe that you are at the end. And to be at 4 mg or even 5 mg a day of pred, in itself, is progress! I will be decreasing to 10 mg in a few days, and hoping that I can stay at that dose for the prescribed time(60 days)

I did a stupid thing on our cruise...we did the zip line/canopy excursion in Mexico, I strained my neck.....and up to that point I was feeling pretty good. I believe that my neck pain is unrelated to PMR, I really pulled something good.....

As far as my PMR, I have slight soreness in my hip/groin area, and I can live with that, as it subsides as the day goes on.

Keep us posted, we all need encouraging news! I, too, developed PMR in Feb 06, and was dx in June 06.

Janet

Did you experience puffines around your neck and face on higher doses of pred? And if so, at what dose did you see the puffiness subside?

Hi, Janet -

I'd love to have that zip line/canopy experience - they have one up at Whistler that I've been meaning to go on. How was it!? Maybe worth a pain in the neck?

My highest dose of prednisone was 15 mg. I was at that for almost 2 months, then started to decrease, just by 2.5 mg increments until 10 mg, then by only 1 mg per month at a time. Even now, I was alternating 4 & 5 for a few days, then will go 4-4-5-4-4-5 ... a few times to make the decrease in dosage as painless as possible.

I didn't really notice any puffiness, and no one ever mentioned I was looking different. Perhaps my dose was not high enough to affect me that way.

Ruth

Dear Ruth in British Columbia, and Janet
    I am so happy for you, maybe there is light at the end of this tunnel.
I am down to 10 mg per day, will see my dr. on Tuesday and hoping he will drop me down more.....keep us posted as to how you feel, it will be nice to know that this condition does go away...I have had it for so long now...I am starting to wonder.....I can remember in the begining of 2002 my hips and shoulders feeling weak, and my legs aching....I don't know if this was the start of PMR., but something was definitely happening...
     Janet asked about puffiness of the face and neck... I also experienced that when I was on 30 mg..........seems to be going down now that I am on 10 mg. so Janet, maybe as your dose gets lowered it will go away.          Georgiana
Georgiana39010.6400462963Ruth,

Hooray for you!!! I am believing with you that your PMR
is done. That would be SOOOOO nice. And you haven't had
it for quite a year. I have had PMR since about June
2002. Had a couple of mildly (but still very painful)
herniated discs almost 9 years ago, and haven't felt
"normal" since, except for the short time I was on
prednisone. I love the drug for the pain relief, but
not for the weight gain. Anyway, been off meds
altogether now since mid April this year (and off
prednisone for over a year). Had my sed rate checked
again yesterday. It is down to 47 now (from 62, and 50,
in the past two months), so that is good news. Still
quite achy at times in the neck, back and hips, and
sometimes wonder if I am overdoing the walking,
although some days I feel realtively well, and others
really achy, and it doesn't seem to have any pattern
that I can figure out. So I keep plugging away. Did NOT
want to hear the nurse tell me how long another of my
doc's patients has had PMR. Longer than me, anyway. But
I see my dr. next month and have a long list of
questions for him. Could it really be that this is how
almost 57 is supposed to feel, and I just don't want to
admit it???    My husband keeps reminding me that
I'm not 30 any more. My brain hasn't caught up to that
idea yet.

Anyway, thanks for the good news, and hope it continues
to be really good for you!!!

Reni Hi from New England. I just found you sister sufferers with PMR. My most worrying problem is that I have a large blood spot on the white of my eye. I have noticed bruising of my skin since I have been on Prednisone but this blood on my eye worries me. I've seen an eye specialist who said he didn't see it. Well it comes and goes. I am on 12and 1/2 mgs. Started on 20 3 months ago. As soon as I got on the prednisone I was like a new woman with energy to spare. My husband called me the "Energizer Bunny"   I was unable to do much of anything without severe stiffness and pain. I feel so much betternow. Have any of you had the eye problem? Let me know.   Gloria I'm updating my last message. The red eye has gone away, Dr. says probably from coughing hard. Hope I didn't scare any of you. I've been sailing along after 3 months on 20mg, down to 10.I guess I lowered the dose too fast or s.t., Also I may have overdone some lifting. Anyways, I have been in a lot of pain again so have gone up to 20 again. Has anyone had flares with PMR? I appreciate your sharing.   LOve, Gloriagloria39025.4209143519

Wow. SOOO glad to hear stories of recovery.

Brand new here. My wife is just getting her condition diagnosed, just prescribed Prednisone 20mg twice daily. He said the dose was somewhat high because she is SO impaired at this point, just in agony trying to get out of bed, etc. Does that dose sound high?

Hopefully she'll get some relief soon. Keep up the positive stories and attitudes! Really appreciate other's sharing their experiences.

Jim,

20 mg prednisone does not sound that high. They usually
prescribe 10-20 mg to start for PMR, I guess the higher
dose if one is having really, really bad pain which it
sounds like your wife is experiencing. If it is indeed
PMR, she should be getting great relief within a few
days. If one has GCA (giant cell arteritis or temporal
arteritis along with the PMR or by itself, the doses
are much higher than 20 mg). Keep us posted, and hope
to hear that your wife is able to get around normally
again real soon.

Reni Jim,

Oops. I just reread your post and realized you said 20
mg prednisone TWICE a day. Yes, that does sound a bit
high, but as your dr. said it is because your wife is
in such agony at the moment. I am sure he will taper
the dose "quickly" once Donna is feeling better, and I
trust that will be very soon. Will keep her in my
prayers, as I know how awful this can be.

I have had PMR for over 4 years, but I do think it is
finally burning itself out!!! Yay!!! I just started
taking some Omega 3 fish oil capsules and some MSM
about a week and a half ago. I remember my primary care
doc suggesting I try the MSM about 4 years ago, but I
think at that time I wasn't taking enough (only 500 mg?
a day). Now I am taking 3000 mg a day of MSM, and I do
believe that is helping things. I am sleeping better
and just feel better overall. Guess I'm so tired of all
the meds I've taken over the past years, that I've
decided to try the more natural (?) route. If anyone is
interested, you can find a lot of information on the
net about it, or ask your doctor. It's suppose to help
with inflammation. There is a dr. at a teaching
hospital here who researched it many years ago and
found it to be of great help in a lot of illnesses.

Anyway, Jim, do let us know when your wife is feeling
better, and let her know that we are all rooting for a
quick resolution to her symptoms. Take care.

Reni

I'm new here, and newly diagnosed(yesterday), however, I think I've had this since Sept 05, but because I have Lyme Disease & RA(although both have been in remission for about 6 yrs) the doctors all thought it was a flare-up of those, even though I tried to tell them that I don't have joint pain. I was finally diagnosed by my infectious disease dr. I found he was the only one to have an open enough mind. I had no idea what was wrong w/me, only that I'd nearly become an invalid because of the pain in my muscles & tendons in my upper body. although he'd normally send me back to the rheumatologist, he decided because of all the problems I've had w/them, that he'd treat me for it himself. He's a great dr. He started me on 30mg of prednisone a day.

I read somewhere today, that a scratchy throat & cough could be symptoms. Has anyone else experienced those symptoms? I've had it on an off for over a year and I'm beginning to wonder if it could be connected to the PMR, esp. since we think I've probably had this for over a year now.

It is great to have found this forum. I can identify w/almost everyone whose posts I've read so far. By the way, I'm, 63, so I fit right in the supposed age group(although It's only been the past year since I've felt even older than my age!) Thank you all for sharing your lives .

God bless you all,

Faye