I have been doing some research on PMR and on the Mayo Clinic site they list giant cell arteritis as one of the severe complications of this disease. Have any of you gotten this - do you know how to prevent it and what happens if you get it???
Jule
I have many of the symptoms but worry since being put on Prednisone that the results may not show up.worried about this too,,,,was on pred. 18 mos now off completely with pain in neck, back of head since Oct/06...had cataract ops May for one and back in Sept for other..............have appt with eye specialist to-morrow, say a prayer and I will get back to you both.
rose
Seems they ought to check before they put you on prednisone as this can be a serious side of PR. Let us know.I'm sure this is a real concern for everyone that's been diagnosed with PMR. You sure pay close attention to what could be just an ordinary tension headache, waiting with baited breath to see what's going to happen.
I visited with my mom (81 years old) out of state this past week and showed her the brochure my doctor had given me. She now *insists* she has giant cell artitis! She's taking the brochure with her to her next doctor's appointment. I can just picture him rolling his eyes now. (I've been with her to a few of these appointments and her doctor has a field day. According to her, she always has just the very thing last shown on the health channel! Bless her heart!)
ROSE...hoping to hear good news about you!I have heard of it. When my Rheumy diagnosed me, she spent a great deal of time talking about the possibility of GCA and also spend some time feeling my head and temples. She said the biggest sign is temporal headaches and visible signs are enlarged arteries near the temples. I'm just not going to worry about it. I visit her once a month. She will keep track of it.I might be off base, but doesn't the medication/Predisone keep the inflamation down and therefore not having the veins swell up and block the optic nerve? I will ask ask next time. MaryIs my understanding ... they use the prednisone to keep it down.
I get the head pain so I cannot lay on the side of my head or back, without the prednisone. I've had a headache but only once. I don't think this rules it out or the visible swelling and redness as by that time it's severe and not everyone may be that severe early on. Gets my jaw as well.
You can also get real tender on your upper head and scalp. Hmmmm.
back from visit with eye specialist, my neck, back of head pain is not caused by pred. wouldn't talk to me about pred at all except to agree that it causes side affects....after many eye drops, I came away with this advice,,,if I wish to read go to dollar store for cheapie glasses (#2) and for computer use (#3), use my reg. prescription glasses for close work????????????hello, have to go back to him Apr. 4th.
His office is in hospital, so took my req'n (from MY GP) for x-rays go up a floor to x-ray dept. for cervical (neck) xrays,,they took about 7..so I will let u all know outcome of that.
Hope this makes some sense to you all but am hoping to find out about this pain, not on pred. but Tylanol Arthritis as perscribed by my ex- rheumy. back to you when x-ray results come in.....take care
Rose
Rose,
Kewanee,
You mentioned the PMR affects many areas, but the ones that caught my eye are the "clavicles, scapulas,& shoulders." I was diagnosed w/the disease in 11/06 and started on 30mg pred. da., went down 5mg. per week and stayed at 20 mg daily. I was nearly pain free, but right after Christmas, I felt like I was getting a "catch" in my back just below the left scapula. It didn't catch, however, I guess it's the muscles or whatever, started hurting there, then spread to the right scapula, then back to the left, etc., and it's never gone away. Sometimes, it even affects what feels like could be my ribs---like it kind of wraps around to in front. I've even wondered if this disease affects the cartilege. I know so little about this disease. I was sick for a year before I was diagnosed, and, after the pain subsided when I started on the pred., I was trying to kinda get my life going again. I might have over done it, for the poor shape I was/am in.(actually, all I did over a 3 week period was deep clean two rooms!) Let me add that I'm 63 yrs old,and a year of inactivity at this age really takes it's toll.
Can you or the others give me any info on these things? I was told this disease usually burns itself out after a couple of years or so. I like reading about others' symptoms. It's encouraging, for some reason.
I believe others have mentioned that the pain & stiffness seems to move around. When first diagnosed 11 months ago, it was mainly my hips and thighs that caused me difficulty. I had trouble bending over, it was a struggle putting on socks and shoes, had to grab my legs with my hands to lift them in and out of the car, etc.
The past few months, the worst stiffness seems to be in my shoulders & upper arms, but at times I've also had what felt like a knot in the back of my neck, and recently an occasional pain in the center of my chest, sort of over my breastbone. At least 5 days a week I muck out horse stalls & pens (we have a young girl come in on the weekends), which includes pushing a full wheelbarrow up a ramp to dump manure. I'm never 100% sure if I've strained something doing the barn chores or if it's the PMR, but I think it's the PMR because it comes and goes with no real relation to the farm work I've been doing.
I'm at 7 mg right now, tempted to go back up a little, but the pain & stiffness isn't bad enough to keep me from doing stuff. (I just like the increased energy & flexibility when the inflammation is completely controlled.) Everyone seems to react differently to both the PMR and the prednisone. I've had very few side effects than I'm aware of, although I've had to take supplements to prevent them
Some doctors believe that PMR is strictly synovial (joints) but given its relation to GCA and the fact that it seems to affect the muscles so much, I tend to think that the "inflammation of the blood vessels" is also highly likely. Whatever it is, I'm hoping it goes away soon!
Yes I believe blood vessels and muscle. I get move around or transient pain and I have a place center back under a scapula that spasms painfully as well.Hi Kew, Good to hear from you. My PMR is always everywhere except my ankles and digits to some degree or another. But it moves around and finds new places it wants to attack the worst for a month or so.Then ,it will get bored with that spot and move on to another spot. My neck and shoulders have always been the most painful, like a hateful little , short cape of pain. I personally think it's everything, joints, muscles, vessels everything. I've at really bad times felt a pleuresy (sp) feeling in my lungs under a really,painful spot, or even some sort of pressure in the front of my throat when the back of my neck is the chosen spot of the month. I think it's a different kind of pain that I have never been able to describe. It's weird.
You know something you said reminds me that I can remmeber of reaching to flip a light switch and getting a pain right across my throat in front.Hi All, I can identify w/the pleurisy. Mine comes & goes, but when it's present it makes it difficult to breathe deeply.
Concerning the autoimmune connection...I have had Lyme Dis. & RA for 26 yrs. I contracted the Lyme first and about 3 months later, the RA developed (both have been in remission since '01'.) The pain from those were excruciating, but was able to be relieved for hours @ a time and I was able to carry on my life rather normally. I was very active-walking, weight training, etc. In fact, I'd just started a new weight training program about 3 weeks before, what I now know to be this PMR, started. That was 9/05. It came on me suddenly. The day before, I had had a really good, hard work out session and felt great. But whereas I could get relief w/ex-strength aspirin for the Lyme & RA, nothing I took even phased this muscle pain. The only thing that has helped is the prednisone. However, it took so long to diagnose me(over 1 yr.) that I've physically gone to pot! I want my life back so badly, but I find physical limitations now, that are mentally/emotionally hard to deal with. I've always been one to push myself, and I'm having trouble knowing my limitations when I'm feeling better. I think that's what got me in this flare-up that's been going on for about a month.
One of you mentioned blood vessels. I noticed this past summer that the blood vessels in my hands(esp. right one) and arms looked engorged---they were really large, and I'm a small boned woman w/ small hands, etc, so they really looked large. Have any of you experienced that?
Also, sometimes the thigh muscles just above my knees get extremely tired when I'm on them for only a short time. It "feels" like they're going to give out if I don't sit down. This doesn't happen all the time, and the first time I noticed it was a few days before this flare-up started. Can any of you identify w/this tired muscle feeling?
Love you guys.
Faye
Gets me in my legs as well Faye. Sometimes upper front and sometimes in the calves so I can hardly walk.
Georgiana, You sound exactly like me! What you wrote yesterday afternoon could have been written by me, nearly word for word. I can identify w/the crying also. I think this stuff has something to do w/our central nervous systems. When the pain is active, I find myself crying when I'm answering a question, or whatever. It's very embarassing. Normally, I'm a very positive, easy going woman, but, when I'm in pain I find myself being critical and hateful, esp. to my husband, and I hate it.
I've read on this board from some/or one of you that your dr.gave you a sheet to show you how much pred. to reduce per month. Do any of you know where something like that can be found on line?
Faye
Something that has occurred to me about these "flares" - when your body is stressed, it uses more cortisol - usually the adrenal glands will manufacture it. However, if you've been on prednisone for a period of time, your body relies on the drug instead of making its own cortisol. If you were to be fighting an infection - say, a cold or a flu - your body would need more cortisol, but since the adrenals are not making any and your prednisone dosage is the same whether you're sick or not, there isn't enough cortisol to "go around". Therefore, not as much cortisol is going to keep your pain & stiffness in check. (Please note that I am not a doctor or a scientist - this is only my own understanding so I may not have it exactly right.)
I've noticed that I haven't had a cold or flu since I started this drug, but I have had flares. Is it possible that the prednisone keeps the cold & flu symptoms from manifesting themselves, but you're still fighting the "bug"? Maybe the answer is to treat the flares as if they were an illness: lots of bed rest, plenty of fluids and vitamin C, maybe up your prednisone for a few days (as the doctors say you have to do if you go in for surgery or something like that).
You know how some bad flus (pre-PMR) cause your muscles to ache all over - maybe that's until your adrenals kick in with a higher level of cortisol. Just some thoughts that might help get us over the worst days ...
The days are getting longer and spring is getting closer!
ME tooo. Could be my words.Kewanee -
A drop from 15 to 10 mg is a bit too much at once, isn't it? Can you try going to 12.5 for a few weeks first?
[QUOTE=TicketyBoo]Kewanee -
A drop from 15 to 10 mg is a bit too much at once, isn't it? Can you try going to 12.5 for a few weeks first?
[/QUOTE]Kewanee -
A drop from 15 to 10 mg is a bit too much at once, isn't it? Can you try going to 12.5 for a few weeks first?
[/QUOTE]
My doctor has me decreasing .5mg every 3 weeks. I'm currently at 15mg.
Goodbye Rose. I still think it is a mystery about relying so heavily on the sed rate. Mine is only at 26. Pretty low, but I guess everyone is different.
Best of luck to you.
Bye Rose and thank you. You've been an encourgement to me. I hope some way, some how you can get some relief. God bless. We will miss you. [QUOTE=rosecrichton] well I guess this is good bye to all of you, great speaking with u the past few months and tks for your words of encouragement throughout all this pain etc. My ex-rhumy said I no longer have PMR since my SED rate down to 32??My GP advised me that my x-rays from Monday indicate I have cervical spondylosis and OA, wearing a neck brace, going for physio, on Tylenol Arthritis and if pain persists (all over) going on a narcotic med. Wish I could say I have no pain all over my body but guess that is my only recourse, I will continue to fight this ??? by exercising, walking, and water exercise.... however I do think the pred. helped when I was on 20-25 mgs. but when they take u down and tell you that it will raise your blood sugar, cause cataracts etc. why put you on it in the first place......it is such a mystery. However I send you all good wishes and pray you will be pain free and that things work out for you....regards Rose[/QUOTE]