thank you!
Hi Everyone,
I feel quite at home here, and you're all so nice.I won't write much now as I desperately need my beauty rest and it's late. Thus far, none of the doctors I've seen have considered me as having active polymyositis right now, though my internist, who admits to being no expert, classified me as having it, for lack of anything else, I presume. I get around fine most of the time, but can't walk around for much more than half an hour before I feel it. The Vioxx I take(in spurts) seems to help a great deal. I rest a lot and am exercising( also in spurts . If the status quo changes, I know what to do. I suppose I COULD simply be getting "old." Nah...... Best to you all, and "see" you soon. Julie PS- glad you had fun at the computer store, Karen, and Edith, I wish the very best for you and Mika and the family. (Not quite sure who is who, though). Susan, God will guide you in your endeavors and decisions.
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Re: thank you!
Julie, maybe you have it mildly like i did prior to the hysterectomy... I honestly forgot how you were dx...or came to the conclusion you have it.. Have you had flares before.. You did say, the doctors have not considered you with active polymyositis. ( i did not quote exactly). Even while in remission, i still get little symptoms, but then i think its from the muscle damage from the steriods.. I also take celebrex which i find is great, but makes me hungry. I hope that your inactive poly stays that way.. AND YOUR ARE NOT getting old... you are getting better...hugs karen
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Re: thank you!
Hi Karen- I was seen walking through our living room in 1975 by our wise family doctor, who was making a house call to treat my mother who was in end sstage cancer. I guess I "waddled" so she had me walk, then lay down and raise my legs. I couldn't, really. I was put into the hospital immediately- a teaching hospital.All blood tests, EMGs, biopsy DX'd polymyositis definitively. My doctor there was a neurologist who was experienced in myositis, even way back then! So, I was fortunate in that regard and fortunate our "country doctor", who also happened to teach at that medical college, were so smart! Was put on high dose Pred and sent home. Neuro told me it could become chronic(most likely), go into remission( rare but possible) or die. I couldnt really walk for a while and fell more than a few times.Hated the Pred. I stopped taking it after only a month and did not consult with the doctor. Just decided I was going to get better! I did seem to get better- slowly- and stronger. Got a job, etc, though I did have some limitations. I went to the neuro a few months later for a follow up, including blood tests. He told me my blood tests showed NO improvement and was not pleased with me- told me I HAD to take the Pred. I never did, went home and gradually got better. Dumb luck, I'd say! For years I never gave the poly a thought. Looking back , I believe I may have had a few small flares, though. Example: summer of 1993, after we moved here to our new home, I became an avid walker and exerciser. I really got in excellent shape! Then , for a period of several weeks, I noticed my legs/hips felt weaker, I fatigued while exercising, and lost stamina. It brought to mind my inital bout of poly, so I did find a GP to get checked out. He had heard of PM, at least. He did an exam, did sed rate, CPK, aldolase, etc. All came back normal. He could not find anything so told me I probably had had some "bug." I did improve, and thought nothing of it. Same kinds of things happened over a year ago now, only it got worse. Recent blood tests a month ago, and one year prior, all very very normal. Cpk was 43.Sed rate was done 3 times- first it was 5, then 0, now 4.So- the rheumy I saw a month ago for the first time says that without signs of inflammation, plus most muscles seem normal strength to the doctors ( tho my neck has some weakness- it has for some time)- no signs of active rheumatic or neuromuscular disease. No further tests have been considered at this time. At least, we have found 2 protruding discs-one in neck and one in lumbar spine- that are pressing on nerves and certainly causing me some problems. I am supposed to go to physical therapy and take the Vioxx, which helps, off and on.The doctors I have seen are thinking that the "arthritic" changes- and my fingers show some degeneration in joints as well, even though they don't hurt - some of my fingers are "bending"-has been causing the fatigue and "weakness, less stamina"- maybe. Nothing else shows up! So, here I am. I'm sure if I experience more severe muscle weakness, I'll have an EMG at least. Right now, I'm just living my life as best I can. Sorry this is SO long, but hope I've made things clearer. Love, Julie
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Re: thank you! :-)
Julie, sometimes Poly, can produce sypmtoms without all the blood work being positive. I hope this is not the case, and you continue to be NON - poly or inactive for a long while.. watch for the signs, though, mine tend to flare in the spring.. the depression which is always first, then muscle weakness, and the great fatigue even when i have had a good nights sleep. In a way it was good that you did not take prednisone. I have taken it for at least 10 years, with a couple of small "breaks" from it. Its both good and bad.. Well i am glad you are using the Vioxx to help with any inflamation. I have just started celebrex in addtion to everything else. I like the celebrex... I take one a day, which seems to last over 12 hours. It takes a full week for real noticeable changes. I hope you continue on you inactive poly and able to keep a normal life style.. all the best and some hugs karen
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WENT OUT YESTERDAY-and felt good :-)
i guess maybe i am starting to feel better. I went out, and it was rather late for me. I did not feel like i had polym while at the computer store.. I actually enjoyed myself. I did, however, come home and installed the mouse.. Which is relatively easy.. I like to register everything, thats the longest part.. as for the other program, that will wait until later. So Edith you may be right, a short interruption and maybe maybe resuming remission and today is mtx injection day also.. The celebrex is excellent for the pain, and its keeping me from taking all the narcotics too. Of course i still can use them, but yesterday i did not need anything narcotic for pain. thats great...thank you all for your support, i think i will do it again.(remission) the love this board puts out, and the surprise in the mail too, that will reflect here also... I had a great day yesterday.. What a wonderful group... "home sweet home" cant say it enough hugs karen ( still feeling good this morning too.)
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Re: WENT OUT YESTERDAY-and felt good
Hi Karen,
It sounds like you're doing much better.That's wonderful news.Keep it up.
Hugs,
Jan
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Re: WENT OUT YESTERDAY-and felt good :-)
Yes Jan, i am really starting to feel better. Just got to be careful i do not overdo... hugs karen
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Re: WENT OUT YESTERDAY-and felt good :-)
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I am glad to hear you have had a good week, Karen. That cancels out my bad one! (: I haven't been anywhere in 36 days now. I have good new, though. My daughter lifted all restrictions on my driving with little Warren as my passenger! Now I just have to figure out how to get him into church and the stores and such with two crutches! Also time to get a shower seat and pick out a wheelchair. But I shall overcome! Susan DM
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Re: WENT OUT YESTERDAY-and felt good :-)
Susan, actually it started out as a bad week for about 6 or so days, I am not out of the woods yet, the doctor wants me to continue my current increase of pred, and of course my injected mtx, and he added celebrex also.. The celebrex is great for overall pain.. But i am feeling better each day.. I had a 7 week remission and lost it, sometime about 10 days ago, so hopefully i will resume remission soon. hugs karen-- PM
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Re: WENT OUT YESTERDAY-and felt good
Hi Karen, Congratulations on your turn for the better. Keep it up, but don't get too smart. Remember that you need your rest..don't do as I do. do as I say! I went out socially for two days in a row and I am absolutely whacked. But I'm a lot older than you and that's my excuse. Looks like rain here so I will be housebound tomorrow so I'll have no excuse to stay at home. Hope the new teeth are a success. Isn't it amazing that something as small as a tooth can give so much trouble.Enjoy your retirement. You have earned it. You have been quite amazing soldiering on with all your poblems. As we say in Aussieland, goodonyer mate!
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Re: WENT OUT YESTERDAY-and felt good :-)
I know, but i always forget. When i am feeling good, and still this morning yet, i have a tendency to run around. Tody i have to pick up prescriptions, laundry, but that can wait, cause in two days i am off again for the teeth, and just general odd small things.. My brother sent up a big batch of his homemade pancakes with my younger brother sunday, and they hit the spot... I still have more because he made a HUGE batch.. So i know what i am eating this morning. My younger brother is doing well now, that he has a job, and i am handling his money... (he is the one that does the groceries for me and is slightly mentally challenged-- but goodhearted.) thank you all for your well wishes... hugs karen
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