I was hoping I was just in a flare but they think I may have developed ploymyalgia. Doc put me on a round of Prednisone and waiting on my blood work. I sure hope it is just a flare. Has anyone else have a problem with ploymyalgia?
Hi, Watoozie, it's been awhile! Is polymyalgia deep muscle pain in multiple locations? I haven't have that type of pain.
Do you still take Plaquenil? How about other meds? I ask b/c the number of people I know who've reacted to cholesterol meds just keeps growing. Nasty muscle pain, the kind you can't move, raise arms, etc. The people I know vary widely: some have autoimmunes (like thryoid), some also take heart and BP meds, and some have no known conditions except for the high cholesterol.
I hope it's just a flare, too, not that you needed one. When will your labs be back? Wishing you a happy holiday & a quick end to this episode, always, Vee
I am still on Plaquenil, 400mg daily. I quit my rheumatologist and he is the only one in the valley. He was not listening to me and my family doctor is helping me. I've had shoulder, neck pain for about 3 yrs now, weight loss of 30lbs, my hips have been hurting for over a year and my muscles just are so weak. I have a complete tear in right rotator cuff. Also have double vision, eye doc put prisms in my lens to help with that. He said I have misalignment of my eyes. I'm trying to look some of this stuff up and some of my symptoms sounds like Large Cell Symptoms or Temporal Artiritus. Don't want to jump to conclusions though, waiting on the blood work. This high doses of Prednisone is making me itchy, want to cry, unsettled and MEAN. See the doc in 4 wks. I will say on the 4th day of Prednisone I was able to walk up the steps without holding on or one at a time. That is big stuff!! I don't take other meds other than Restiril to sleep and vit. D.
Watoozie, oh wow, a lot more than polymyalgia to wonder about... I'm really sorry to read this. I have a dated article that discusses Temporal (or Giant Cell) Arteritis, among other conditions, so I can see why your doctor & you are wondering about it. It cites pretty much what you did: blood vessel inflammation, that can result in neck/shoulder pain, impaired vision, polymyalgia rheumatica (incl. hip pain), and weight loss of more than 5% of your body weight. The article calls it a form of VASCULITIS.
Especially given possibility of lasting eye damage, have you asked what the most definitive tests are? From my old article, at one time it apparently was a biopsy of some sort---of a temporal artery, or something along those lines.
You said you've stopped seeing the rheumatologist. Is there someone locally who COULD do such a biopsy, if it had to be done?
Good news that the Prednisone kicked in! I'm sorry you're going thru this. Let us know what you learn & how you're doing. Sending you my best wishes, always, Vee
When you tell your rheumatologist your symptoms and he doesn't listen, I told my family doc I just didn't feel comfortable going back to him. He said if he thinks he needs help he will send me to one that is a little over an hour away from here. I have more faith in him, he is director of the hospital's Family Medicine Residency Program, I've went to him since 1986. This is some of the blood work he ordered BLD CNT, COMPL CBC W/Auto Diff WBC,Metabolic Panel, Basic, C-Reactive Protein, RBC Sedimentation Rate, Automated, ANA (antinuclear antibody), Rheumatoid Factor-Qual. None of that means anything to me, but you probably understand it. My Rheumatologist would never tell me what he checked or give me any results, just - oh your blood work is okay. Thanks Vee, and I hope I am just over-concerned!!!
Watoozie, I'm glad your family dr. has a game plan if escalation is needed, (but I hope it isn't). I like it when drs. have a game plan & share it. Whereas your former rheumatologist sounds like another type altogether. I'm very glad you had the great good sense to BAIL.
The first labs are the basic labs that are always done (blood count, CBC & metabolic panel). C-Reactive Protein & Sed Rate are inflammation markers. Both are apparently "clues" to Polymyalgia Rheutatica and Giant Cell; but it sounded to me like both conditions are diagnoses based on heavily on *symptoms*. And that heavy steroids ASAP (even before labs return) are the gold standard where Giant Cell is possible & may be impairing vision. i.e., you don't wait, you prescribe. So your doctor's approach looks very by-the-book, doesn't it?
I wonder if the ANA (antinuclear antibody) & RF (rheumatoid factor) might be more related to your already-known dx? (Lupus or MCTD? I'm having a memory lapse here!)
Are you staying in touch with your eye dr. too? Anyway, I'm so sorry this happened, but my hat's sure off to you, for forcing your issues forward. Keep us posted on how you're doing. All my best always, Vee
The rheumatologist didn't diagnose me right away, just said connective tissue disease, then after awhile he said Lupus and ANA positive for Sjogrens Syndrome, after that he just seemed to lose interest, wouldn't show me any of my blood work or go over it with me. At one time I told him I thought I was having a flare and he said "why would you say that, what makes you think your having a flare?" I told him and he ignored me, my family doc put me on Prednisone then (about 4 or 5 yrs ago) and when he found out he was peeved about it. I guess you get to be the best when your the only one. lol I stopped seeing him about a year ago. I've had all these symptoms for about 3 1/2 to 4 years, the misalignment of my eyes has gotten worse and my hips were hurting so much I had trouble straightening my legs out at night. My husband has had several strokes and he takes up a lot of my mind so I try to put my troubles on the back burner. Thanks Vee for your kind words. Will let you know how things progress. I just got new glasses about 3 mo ago and my eyes have changed since then but was waiting on the blood work and the diagnoses to get hold of my eye doctor. I do have a very good family doctor!!
Watoozie, in your shoes, I'd call your eye dr. to impart this very important news about (possible) Polymyalgia Rheumatica & Giant Cell Arteritis. You could also provide med & dosage, your family doctor's name/contacts, etc.
Or, maybe better: you could ask family doctor to update your eye dr. for you, doctor-to-doctor. Also ask family dr. if any OTHER of your doctors s/b alerted. (I'm thinking eye dr. is THE one, but what the heck do I know?!)
I'm thinking the above b/c I'd want eye dr. on same page, also to guarantee both doctors are able to reach one another if needed, also to learn whether HUGE STEROIDS require more frequent eye exams. Maybe for glaucoma? (Not sure, sorry---but your eye doctor WILL know!)
Gee, after your last post, I'm liking former rheumatologist even less. 3-4 years is a long time. Add "doesn't play well with others" to his profile, huh? That's never good, esp. for patients with conditions like A/I's that can affect so many things. Looking forward to your updates, hugs & best wishes, Vee
I took your advice, Vee - called my eye doctor and left a message with the receptionist, he called back wanting to see me on Tues next week. Guess he must be concerned too. Thanks, you have a Happy Thanksgiving.
I'm glad you called your eye doctor, Watoozie. He may not need to do anything except check you out, but that's kind of hard to do over the phone! I'd want the two of them, eye doctor and family doctor, to collaborate as you work thru this, also to make sure everyone knows who's supposed to contact whom, when/as needed. Wishing you & your family a happy Thanksgiving, too. Bye, Vee
Eye doctor ordered more prisms for right lens, glasses only 6 mo and eyes are more misaligned. ??? Doctor today, blood work a little elevated, not surprised about that. The Prednisone has done wonders, after only 4 days I was able to walk up the steps without holding on or one step at a time. It's been 4 wks, and now tappering off the Prednisone. MRI of head was negative, only normal signs of aging. This is the first time in 4yrs that I don't have any pain! I found out there is a Lupus Center at West Penn in PA. My husbands neuro. said she would refer me if I wanted to go. I feel so much better after the Prednisone I don't feel like I need it now. lol I just wish I knew what was going on with my eyes. Burning mouth is back with a vengance and there doesn't seem to be any answers for that. I've tried the mouth washes and tooth paste (Biotene), B12 and Vit D, nothing seems to help. Doctor thinks I was just in a bad flare - see him in 3 mos.
I would ask your Dr if he would add on a CK, a muscle enzyme, to check for myositis, which can occur in polymyositis or lupus. It causes muscle pain and weakness both. It would be best to add it to the tests already ordered, as being on Prednisone would alter the results if drawn now.
Hi, Watoozie. I'm sure glad you're feeling better overall, pain-wise. But because your eye problem has forced another change to the prisms in your eyeglasses, for that reason alone I'd want to see the neurologist at that western PA hospital. Maybe that big hospital could do tests that BETTER DETECT optic problems? Like special imaging tests, special blood labs, etc.?
I realize going to PA might be a royal pain in the behind... Is it horribly far? Whatever you chose to do, my best wishes are with you. Always, Vee
Just an additional thought- since you have muscle weakness and that is probably the cause of your eyes being misaligned (the muscles are not holding them in proper place), maybe you should consider seeing a neurologist to get checked for myasthenia gravis. It is also autoimmune. It causes muscle weakness, eye muscle weakness, sometimes eyelid drooping and symptoms worsen with repeated use of the muscles and improve temporarily with rest. It can be checked by a blood test for antibodies to acetylcholine receptors, and even your general Dr could order that. That isn't 100% (more like 95%) in people with MG, but it is treatable. An EMG can detect it or some neurologists give a trial dose of the medication used to treat it. It is treatable, so might as well not leave any stones unturned. You might want to research it and see if anything else fits with you. Good luck, hope you get this figured out soon. Being undiagnosed for something is so disconcerting. We usually imagine something worse than it actually is. Knowing is peace of mind.
I asked about large cell and he said since my MRI didn't show anything, he didn't think it could be that. West Penn Hospital is about 1 1/2 hr away from me. I am still waiting on my new lens and will see what eye doctor suggests. I do worry since the alignment of eyes are worse in 6 mos. I should be getting them in the next few days. Thanks everyone and special thanks Vee. You always have a way of saying the right things. Thanks for being here.
Waoozie, why not see if you can find more about the tests done for Giant Cell Arteritis? From what I've seen, I get a sense that it's not that common a condition? And for less common things, a doctor who's part of a large staff is a good bet, I think, because they bounce things off one another.
Plus the larger the hospital, they more conditions & presentations they see, due to the law of large numbers. (Well, that was my theory when I switched doctors years ago, and my change worked out very well, quickly, too.)
Watoozie, sorry I left abruptly, my software repairman needed my computer. Anyway, I hope you get that 2nd opinion, since it can't hurt and could benefit you a lot. Also, I don't think your hubby's neurologist would have offered to set you up if she thought it made no sense.
We all glad to be here for you---me included!---and will look forward to your updates. Bye for now, Vee