Joining the group | Arthritis Information

Well, I finally found a way to get on and post. Some "cookie" issue, which required me to come in through my internet server and not AOL.

I'm 52 and was diagnosed in February, 2007. Sed rate was 80 and I was sent by my PMD to rheumy for evaluation. I had fatigue, horrible low back and hip pain. Arms would not go above counter height, and I would have to physically pick up my legs to get in and out of a car. Then stand without laying myself prone on the driveway.

My rheumy diagnosed me when I tried to take off my sweater for the exam. Confirmed the diagnosis after the SR rate and the fact that I responded well to 12 mg of Medrol within three days.

Then after two weeks we started the reduction to 10 mg and then to 8 mg of Medrol within a three month time frame. He told me he liked to get to the lowest dose possible for control.

Well, to FF, I've felt horrible since July, with a bump up and then decrease to 8 again. Now, with the added ingredient to the mix of scap pain, I'm on 24 mg. Much better and not trying to struggle just to take a shower. Social life, poor because every task or event feels like climbing a mountain backwards.

I take Ultram for pain, and Tums to get my calcium intake. Due to medical issues, I cannot take NSAIDS. I also, lost 20 lbs since May and not really on a strict diet. Crappy appetite since July which probably helped. No moon face, but I'm sure that is coming with the increased dose of Medrol.

I'm more into not keeping my face in the sofa than worried about the other issues right now. Since I have no side effects, yet, I'm going to do this slowly. It looks like a real long time before this starts to clear, and with all the medications out there, you'd think this disease would be more investigated than it is and more medication options available

While I'd prefer to be joining you for drinks and friendly conversation under much better circumstances, I wanted to introduce myself to others with this disease that darkens the soul and takes a toll on your physical reserves.

Bob W's post hit home about being so caught up in fast reductions than quality of life. I've adjusted my attitude about this, and would much rather get through this with my mental and physical self intact than worrying about how fast I can get off this medication. I guess I'm looking for the word Balance.

Two major medical events occured before I started with this.

Donna, NY (Long Island)

Hi Donna,

You've come to the right place, because we all are interested in hearing what is going on with everyone else with PMR.

I think my original SED rate was 53 and now it is 43. I couldn't take Prednisone or Methotrexate and now just on aspirin and Tylenol. Fatigue is a big issue. I got up at 9 a.m. this morning and just now got up from a two nap.

I, too, think that with all medicine there must be something, but there just doesn't' seem to be anything to knock this out except Prednisone for me and I can't take it. Some days I think it is burning itself and then other days...not.

I've had low back pain for 10 years so it is hard to say what is PMR and what might be typical arthritis. My knees hurt the most. They were swollen back and I couldn't bend them and couldn't roll over in bed. Then my arms started to hurt.

Hang in there....I keep hearing that it someday will burn itself out and some days will be better; but, lots of days we will hurt. Mary

Hi Donna,

Welcome! This a group of people with much caring and much
information. I have learned more and had more help here than from my
rheumy (by a long shot). Your writing says so well what is going on with
you both physically and emotionally. Over time what I have learned from
my own experience and from others postings, is that each person has to
struggle for the best answer for medication and the pacing, and it comes
together very slowly. A lot of trial and error, and a wild yoyo effect.
Believe me, if I had some magical formula, I'd shout it from housetops
with glee. Ah, but I don't, and I don't understand why more research is
not under way, or seems not to be. Right now, I seem to be on top of
yoyo bounce, but looking down is very scary. I'll try to enjoy it while I'm
there.

Hi Donna

Welcome! You have joined a great bunch of people that have been so welcoming to me and so supportive. I have learned such a lot from reading everyone's posts.

I've been having symptoms for a number of years and dxd last October. Been coming off the pred for a long time and down to 3mg. I have other health issues which need me to come off as quickly as I can but I am stiffening up again and in a lot of pain. My new GP is going to refer me to a new rheumy (just moved 200 miles from my last town) so I wait with anticipation. BTW I am 48 and I'm living in Kent, UK.

Have a great evening.

Love Judi xx

Welcome Donna!

Everyday it seems someone else joins. I would like to know how common PMR is. Did I read somewhere 1 in 200 over 50 or was it 1 in 2000? anyone know the stats?

Hi Donna, Welcome to this group of caring and brilliant people. You will get
so much support and information. I have been here just a short time and it's
been good medicine for me.
I have been diagonosed about a year, started at 10mgs. pred, now down to 6
and holding. Your intro to pmr was more severe than mine, sounds
miserable to have such trouble moving. I have had more pain than stiffness
and need pain meds to function and sleep. It's a puzzling and changing
syndrome, but I am gradually putting my puzzle together and so will you.
Everyone's puzzle has a unique landscape. THe hardest thing for me to
accept is that there are some things I can no longer do and the rest take
twice as long.
Keep us posted on your progress, we care.
GeralynWelcome Donna, I also couldn't get in the car without lifting legs, couldn't
walk when I got out of the car, took a while to straighten up when I started
walking (hubby said i was moving like an 80 yr old - I am 51 now was 50
when it started) and couldn't put on a shirt, brush my hair, reach into the
cabinet etc. Pred has made a huge difference in that for me, but the other
symptoms persist.

It is 1 in 200 that the research says Marianne.
pgr

Welcome Donna!

Welcome Donna,

I do agree that you should check out the sensitive scalp issue. It's one of the main things they look for with GCA.

You will find lots of wonderful people here so feel free to ask any questions you might have and keep us updated on how you are doing!

I'm on 10 mg of pred for about 6 weeks now and have been doing better although I"m starting to experience a little more pain while sleeping or I should say trying to sleep. I never had the pain as bad as you. I did experience the old lady can't straighten up after getting out of the car routine, I don't have that problem with the pred anymore.

You take care and WELCOME!!!!!!

Kathy

For me the pred caused the scalp pain. GCA can also cause headaches so pay attention. to that. IT is hard to figure out if it is the desease or the medication. very frustrating!! marianne195239355.3453356481

Looks like we have a good group here, who know what it is like to walk like a crab and sideways most days. Thanks for such a warm welcome. Felt kind of isolated that I can't make other's understand that this PMR is painful and exhausting to fight.

I know that the Medrol messes with the emotions, so I just try to remember that I'm not losing my mind and try to stay away from emotional issues. Or I just back off and tell people I can't deal with things right now.

Donna, NY

I wish I had had a group like this when I was at my lowest point a few years ago. IT would have made a major difference. NOONE understands this desease but the people that have it. My friends would ask me "what is wrong?" I'd try to exlplain that I could hardly walk ,sit down or put on a sweater because of my muscles being inflamed and so painful. I could hear them thinking "oh it is just a little muscle pain" what is she talking about?" My mother even suggested it might be "between my ears" (dutch exppression for "it's all in the head" ). I did not speak to her for months after that!

At least my dogs and husband believed me!!

marianne195239355.6330555556

Donna, Did your rheumy tell you why you are on Medrol and not the usual prednisone? (Medrol is methylprednisolone) Is it a new variant on prednisone? We're good friends with a drug rep and I know they push the new stuff to the doctors for its advantages over the old stuff, so I'm wondering what are the advantages of Medrol.

Welcome aboard, incidentally. There are a lot of us folks in the same boat with you and we'll help share the rowing chores.

It is my understanding that Medrol is of the same family as predisone. The pharmacist told me no difference.

I just notice that I have not had the usual side effects that other's have mentioned. Perhaps because of the lower dose. Now that I'm bumped up to the highest dose I've ever been on, (24 mg) I wonder if they will start.

Donna, NY

Donna,
I have been on 20 mg for almost 3 months & althugh I don't say it out loud,
have very little in the way of side effects so far. Hope you won't either
pgrHey Bob,

Would you take my oar for awhile? I need to get something for these blisters
on my hands!

LibethDidn't you feel me rowing with you?
pgrDear pgr

Oh, indeed I did! How else could I manage to last as long as I have?
Besides, you restored my sense of humor, without which I might not be
here at all!

What is most important in healing is not what the doctors and rheumies
say (those "I have the answer, do as I tell you, here's a new drug" people),
it is the love, caring, support, encouragement, empathy, faithfullness,
concern, researching for answers (did I leave anything out?) of all of you.
I am full to bursting with gratitude.

Love you all!!!!!!! Libethyou said it all Libeth, I am having such a hard time with this disease, if it were not for this group of friends that i made on this forum i would be in deep (blank).

Keep on rowing with me guys, I need all of you.

Getting my first shot of Methotrexate tomorrow morning, boy am I counting on this helping me, I hope I am not disapointed, I know it will take a while to work and I will be patient. I need something so badly, in a lot of pain, having trouble walking, hips are killing me, pain meds getting stronger and stronger, but not working, I don't know what is in store for me.

I love you all Georgiana
Georgiana, we will be sitting next to you holding your hand and hoping this
is the help you need.

Libeth, I missed the "Bob" salutation and thought you were asking all of us
to take the oars, sorry! But I think those of us who can, are rowing with
everyone!
pgr

Georgiana, You call the stroke cadence and Libeth can take the steering oar and the rest of us will do the heavy rowing until you both get ahead of things. All we'll be missing in this motley crew is someone to brandish the whip! Any volunteers?

Ooooh me please Can I be the slave driver??? Oh wait... it may hurt my
shoulders to crack the whip

I'm hoping this helps you feel better. I've heard the people in the doctor's office (patients) discussing all their different treatments. Everyone sitting there and complaining so I guess that is a good thing.

I'll help paddle, and if need be, a few of us can always get in the water and swim beside it.

It's amazing how when the pain is relieved, the spirt just perks up to join in.

Donna, NY

You all are too funny.
Oars aloft! Georgiana call the stroke! Everbody ready? GO!

Row, row, row your boat,
Gently down the stream
Merrily, merrily, merrily, merrily.
PMR is but a nightmare.

Libeth

erow
[QUOTE=Donna NY]

Well, I finally found a way to get on and post. Some "cookie" issue, which required me to come in through my internet server and not AOL.

My rheumy diagnosed me when I tried to take off my sweater for the exam. Confirmed the diagnosis after the SR rate and the fact that I responded well to 12 mg of Medrol within three days.

Then after two weeks we started the reduction to 10 mg and then to 8 mg of Medrol within a three month time frame. He told me he liked to get to the lowest dose possible for control.

Two major medical events occured before I started with this.

Donna, NY (Long Island)

[/QUOTE]

Donna,

Sorry you have to come to us--but we are glad to have you..You will get a lot of support-and some good laughs here. Our stories are all to similar, but there is hope. Now is the time to take care of yourself-to heck with the house and cooking. It is all about getting your rest and being positive. This is temporary-you will come out on the otherside a much more compassionate and wise lady-not that you were'nt anyway..

Lonna

I'm hoping to learn better balance, but I've got to keep up with things because of the animals and the foster's in my care.

I'm not looking for gleaming glasses in the china cabinet, anymore, but try to keep the spider's from leaving me notes. Somedays, I cannot keep up the pace, but still try to move about.

I had stiff legs the other day, and twisted my ankle bouncing down the steps. Not sure if this is in addition to, or something else. It seems like different things ache on another day.

Donna, NY

Donna,
I think many of us, myself included have all talked about the floating or
different pain that comes and goes with this process. Front of my legs was a
huge problem for me befoer the pred took it away and then my ankles
kicked in...

Hope you are feeling better.
pgrpgrr and donna,
agree with the different pain and in the strangest places. Front of my legs were hurting, also and my ankles hurt and seem to swell a little, hip pain never goes away and leg pain, a burning deep pain, i could scream.
I made a remark to my daughter the other day that it hurts me from my neck down, don't you think the next day my scalp was hurting, just shoot me, i say. Love to all Georgiana
Georgiana,
The hurts from my neck ro my kneea comment was whar I said to my
husband before I started pred. I am one of the lucky ones who has had less
pain since I have been on ir. The pain I do have floats to never before pained
places.

How are you? Any relief from the shot?
Oh & Bob, don't worry we didn't stop rowing to chat!
Hear my whip cracking?
pgr

pgr555, Keep that whip cracking, and just so we don't lose the stroke while chatting, I've purchased a large drum and am assigning the task of keeping the cadence to Georgiana. That way y'all can chat all you want...between whip cracks and boom, boom, booms. Donna, you can join the ladies on the aft deck temporarily while we figure out whether you'd row better on the starboard or port side.

Limping up to the aft deck, but ready to row when it's my turn. We'll need a very lively beat on the drum. Can someone please pass the bottled water and vitamins.

Donna, NY