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Hi!

Just wanted to let you all know that there are those
really good days amidst all the aches and pains. I just
got back from having my sed rate checked again, and it
is down to 50 from 62 last month. Hooray!!! Also, the
scales this morning showed I have lost another 1 1/2
pounds. Still not where I'd like to be, but making
progress. The dr. said he isn't going to make any
decisions for me at this point, so I'm opting to do
without any meds for another month (even tho' I still
feel stiff and achy), and then see what my sed rate is
at that point. Could this be the end of PMR for me? One
can always hope.
Take care, and know that I am praying for all of you to
have more and more of those good days.

Reni

Yipppeee, Reni.

Thanks for sharing the good news.  That gives all of us lots of encouragement.

It appears that you are not taking prednisone...is that true?

I go for blood work tomorrow.......I am hoping the sed rate and CRP are down, that means I can stay @ the schedule 12.5 mg pred, part of my taper.

Happy for you, keep us posted.

Janet

Hi, Janet!

No, I am not taking prednisone. I quit that about a
year ago, then was on plaquenil for about 6 months, and
quit that in mid-April this year. I really hate to take
meds, but sometimes I am still tempted to go back on
prednisone because of the aches and stiffness. It is
still really hard for me to get down to the floor and
even harder to get back up again (I have to do the "4
point landing" as I call it, with hands and feet
widespread to give me a good base to get back up), and
getting out of the car, even after a short drive really
hurts. But I'm stubborn, and if I can keep from
snapping at my family when I'm hurting, I'll hold off
on going back to the meds. The dr. told me a while back
that I'm the one who has to take them, not anyone else,
and it's ultimately my decision, but when it starts to
affect my family negatively, then I need to re-think
being on the meds for their sakes as much as for mine.

So, for now, no meds, and will keep praying that things
get better. I hope you get a good report after your sed
rate tomorrow, and can continue with your taper without
any ill effects. Good luck, and keep me posted on your
progress, too.

Reni

Hi Reni,

I sympathize with you, before I knew I had PMR, the most awful thing for me was getting on the floor, then getting off the floor.  I did not realize how much time I really spent on the floor....I used to do Pilates and other floor exercises,  thought nothing of getting up an down before this PMR .  My legs wouldn't bend.  And putting any pressure on my shoulders to help me get up was just too painful to tolerate. 

I have been wondering if we don't treat PMR, could it be harmful?  My understanding is that we are treating symptons and just waiting for this stuff to burn itself out.  I can handle a little stiffness and soreness, but I don't want to go back to being immobile.

Leaving now for blood work, I will advise you of the results when I get them.. probably early next week.

I am happy for you..........

Janet

Great.... Reni!

It is so good to have someone who has managed to get off Prednisone to keep posting and letting the rest of know how well you are doing.  It gives us all something to really look forward to.

Sure hope all keeps going well for you and just keep getting better. It gives me hope I'll get there too one of these days.

Much good luck to you!

 

Janet and Mariellen,

Thanks for the replies. It has been so good for me to
find this site and to read all the posts. I mentioned
this site to the nurse yesterday, and she said PMR
patients need a support group. It sure helps to touch
bases with other folks in the same situation. Janet, I
was fortunate in that I could get the results of my sed
rate within an hour. I told the nurse I had errands to
run in the area, and got back before she went to lunch,
and she had the results. They do the sed rate right
there at the office. Nice that I don't have to wait for
them to send it to a lab and wait a week for the
results. I've read that reduction of sed rate doesn't
always equal reduction in symptoms, and I do still
hurt. Didn't sleep much last night. I am still having
postmenopausal hot flashes after almost 7 years, and
for some reason they are getting worse. I know they
were worse when I was on prednisone. Not fun to wake up
sweating and hurting.

I, too, was wondering if it is the wisest thing to let
the inflammation go unchecked. I will probably stick it
out until Nov. when I see the rheumatologist again
(with another sed rate test next month) and ask him
about that, as I've read it's not good to have chronic
inflammation.??? So many unknowns.

It's really weird, but my shoulders hardly hurt at all
any more. When I first got PMR, I couldn't get a
t-shirt off without help (hubby didn't mind helping -
haha). It's the hips and neck that are worst now, and
when I "flare", my knees and ankles hurt, too. Do any
of you ever watch a much older person, obviously with
bad arthritis, get out of a car, and hobble into the
store, and think, "They look like I feel" (and I know I
look like that at times, too). I can really empathize.

Hang in there, everyone, and try to find things to
laugh about. Not always easy, I know, but it sure
helps.

Keep posting!!!
Reni

Reni,

Thank you for the post...you addressed a question that I had after I received a "speedy" reply on my sed rate...it was 10 down from 42.

 However, I still have symptons, and I can handle those. My rheum doc is more interested in the CRP and my family doc likes to see the sed rate....I agree, Reni, so many unknowns. So does reduced sed rate indicate that I can stay on my taper of 12.5 which is down from 15......

Like you Reni, my shoulders don't bother me, but if I "over do it" I will feel it in my hips and neck, also. I, too, could not get off a shirt over my shoulders, hubby didn't mind, but I also think he doesn't realize the immobility invovled..

 I also sweat more than I used to...not so much at night, but any slight effort  even in moderately warm temps, I drip like a faucet....I'm 52 so have gone or been going through menopause.

I have a huge concern now......I NEVER had dark cirlces/bags under my eyes...and now they are so pronounced that I don't even like to look ay myself.  I have slight puffiness. in my face, that I can deal with....but these dark circles/bags are getting worse and they have me really upset  can anyone shed some light on that issue.....????

Looking forward to hearing from you.....this is a great resource...thank you all!

Janet

HI, Janet!

I thought I had posted a reply, but I don't see it on
here. If you get two of these, my mistake. Sometimes I
don't do these things right.

I am so glad you got your sed rate results so quickly,
and hooray for you, too that it is down from the time
before!! From what I understand, reduced sed rate
doesn't always equate to reduced symptoms. If you can
handle the symptoms you have, I'd say go ahead and keep
tapering the prednisone, but slowly to avoid risk of
relapse. Sometimes you can have bad symptoms with low
sed rate, and you should go by the symptoms rather than
the sed rate in cases like that (and even increase the
prednisone dose for a time if you need to to get
relief). The doctors should go by the symptoms, also,
but guess that is not always the case.

I wish I knew what to tell you regarding the dark
circles/bags under your eyes. Do you think it might
have something to do with the weight gain from
prednisone??? I would call the dr. or nurse at his
office and ask. It never hurts to ask, and perhaps they
can give you some answers. It must be very frustrating
to have yet another symptom to add to the list. I am
keeping you in my prayers to get that resolved quickly.
Let me know how things go.

Take care.

Reni
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