Giant Cell Arteritis | Arthritis Information
HEllo. I am a woman that Giant Cell Arteritis has hit. I was wondering if
anyone else has had it and how long you are on the medicine? Did you
feel weak? I have found out about 3 Mo. now. It started with a pain in the
back of my head. Like two volcano going off than a headache. Was just
wondering how long the feeling last. I had all kinda of test AMA etc.
Thanks for any feedback I get. Sally1I and my Opthal. suspect I have this. GCA is the only reason I take Pred. I take 15mg. currently daily.
I had terrible head pains going up two places in the back of my neck and on up the back of my head to the top of it previous to pred.
I also had pain on one side of my head not allowing me to sleep on that side.
Once in awhile my head would be sore on top as well as pain. Put a hairbrush through your hair and you could feel sore places.
My PCP started me on Pred. without testing me first.
She decided not to test by reducing or taking me off after the fact .... so we just figure I have it.
My Rheumy. diagn. my PMR but said nothing much on the other as I was already on Pred.
I sure can sympathize.
Hope you get more feedback and hang in there.
KewaneeKewanee39132.8547337963
hello Sally & Kewanee: have the same type of head, neck pain, how were you diagnosed, what testing did u take, I had neck x-rays said I have cervical spond. am on narcotic for pain Demerol..... some days eye sight very blurry with floaters in right eye. Had two cataract ops last fall. Don't know what to do, off pred now for two months on it for 18. only going to GP, "fired" rheumy or she gave up on me who knows?? looking for reply if you have time
rose
Rose,
In my case when I had shoulder pain and back under neck ect. so bad I could not get out of bed without rolling painfully out of it, I had a CRP and sed rate done as well as white cells and they were elevated.
They didn't get done for a couple of months and it was just getting worse and worse until finally diff. Doctors, PCP and Rheumy did tests. Then they sat on them. So I can sympathize with being in pain and not knowing what is going on. I'm so sorry.
They were not highly elevated, and I'm a person with other autoimmune problems in the past that had put my ANA's up to 1:256 and blew my white cells all over the place with up to three times the normal highs. But, at this time I never had a sed rate or CRP elevated and they normally can be with ANA's like that, but not me.
So, point is, this is the first time I ever had these things elevated at all, is with the PMR. Probably were higher in the time it took me to get help. Dunno. Thing is some people I have read do not have these show up at all or at least by the time they get to the Doctor it's not. If you have symptoms that are consistent, maybe you should find a new Doctor.
If you have a printer and can find some of those comments about neg. blood work, I'd print it out and take it with me. It can happen.
The blood work led to my PMR diagnosis but the neck pain and head pain came after the shoulder stuff by a couple of months for me.
I also have Osteo problems in my neck but...that does not come on like gangbusters with such sudden pain.
Sounds like you need help.
I have read that it takes a vessel biopsy in the head to show up GCA. EVen then, it may not always.
Wishing you the best Rose and do consider another opinion with your suffering as GCA can be dangerous. PMR can be painful, but it's biggest risk I believe is that you could develop GCA.
Oh I had to come back using the edit button.....Vicoden is the best thing for that pain I have found.
My husband uses it also for a torn rotater cuff ect. that needs surgery. It did it as well as the prednisone. Kills that pain.
~Kewanee
Kewanee39133.374849537Hello Kewanee and Rose, I had 3 MRA, 4 Blood Test, Sttess, Bone density,
The Dye test and that is were they said I had inflamation block in 3 of my
Arthritis. My family Dr. thought I had shingles at first with the pain in my
head and they took a blood pressure and found I had none in either arm.
He sent me for an mra. From there I went to about 5 different Dr. I
started out with 60 mg now on 30mg. Until I go back to the Dr. that did
the Dye test. Boy the side effects are terrible. Right now I am just weak
and the steps are one at a time breathing isn't an issue with me, but I
only had it for about 3 Mo's now. And the blurry vision is another, but
isn't there all the time. I do have a cataract growing. I never heard of this
before I had it and on the Mayo Clinic web it says it hits from 50 to 70
and I will soon be 70. Couldn't wait another year>>. Up till now though I
didn't have to take any medicine. Now I am on Thyroid,
Cholesterol,Pepsic, Baby Aspirin, Plus I take my blood every day, than
there is the Prednisone. I hope this gets better. I appreciate all the
feedback I got, Because no one around here ever heard of it either. It is
nice to talk to someone that has it or had it. Thanks again!! SallySally,
I have had some eye problems too.
I had one eye, two summers ago, go partially blind.
It was like a shade over just half the eye for a few minutes. They thought maybe a blood clot but it never showed up in tests.
Your vision is so important.
You know I think the prednisone is making me breathless and weak feeling. I sure don't like the stuff. But then, the pain has pretty much gone so I can do some things now.
~Kewanee
Thank you all for your very thoughtful and helpful responses to my long inquiry. I appreciate all of you very much. You all suggested that I see my doctor and return to taking my prednisone, even though I was on a very low 4mg maintenance dose. I am grateful. Within 24 hours of taking the one small pill again, my pain was so much better. I am waiting two weeks with this dose before having a C-reactive protien done. This way it will be a fair estimate of the effects of the steroids on my disease process. Then my rheumatologist can figure out what the next step is for me. I am not trying to second guess a doctor, it is simply so frustrating. My eye problems are what brought attention to my ongoing disease. Although I had been on steroids for almost 2 and one half years, I did not realize that I had cataracts until I woke up with very limited vision in one eye. I was terrified that it was GCA and it took a bunch of tests including a CTscan and a bunch of doctors including an ophthamologist to pretty much determine that I was only suffering from steroidally induced cataracts and glaucoma from the steroids. None of the doctors could really say for sure about the GCA, but they didn't want to take any chances either, so of course my steroid dose was greatly upped for a time. I was told by three doctors that the artery biopsy is usually inconclusive and the main way to prevent GMA is to watch for the signs, (headache, bulging arteries, jaw pain when chewing), and have frequent C-reactive protein tests for an elevated sed rate. My sed rate was 60 this last time, and although high they all concluded that it was most likely not high enough to be a red flag for GCA. A sed rate over 100 would be, however. According to my rheumatologist, if your sed rate is kept low, there is no way you can develop GCA, because it is an inflamation of the arteries and steroids are the anti-inflammatory that prevent the disease by keeping your sed rate low. This is why, he said, that prednisone is the drug of choice for PMR and the prevention of GCA. All in all, though, I have been told so much stuff by very knowledgeable physicians that in other words simply says..."we aren't sure what causes it and don't really know what to do about it except control the dangerous symptoms and find some relief for your pain." It is so frustrating! I really don't understand why this disease is even classified as an arthritic process. According to my docotor, this disease will end without damage left to my body in usually two years time. Well, arthritis doesn't just leave, and this mysterious process has lasted more than two years and damage to my body has been primarily from the steroids. I wish there were some answers, but I am so very grateful for all of you being here to share with. I no longer feel so alone with this battle. Once again, thank you all for your kindness and may God bless all of you and ease your pain. Susan M.
Susan,
Thank you for that informative information.
I've read some of it before and am pretty sure I did or do have GCA.
I have been watching a prominent blood vessel in my forehead and do have jaw problems on one side, mostly in the morning, not constant, when chewing.
Headaches have not been the thing with me. I had one bad one and other than that before the prednisone I had head pain so I could not lay on one side of my head as I said earlier. I'd get soreness that I could feel when brushing my hair. All symptoms of GCA I've read about.
So no Doctor has diagnosed it for sure but with those symptoms and my Opathal. saying I'm a candidate for it for sure and to stay on the prednisone, I'm just presuming and being on the safe side.
I went on the Pred. early before a biopsy of a vessel could be done and was interested in what you said about how often they don't prove a thing anyways. I did read they may not but that's alot of not's.
Tests confirmed I had an elevated sed rate like you mentioned was told to you and CRP as well as mono's. That got me the PMR diagnosis.
Thing is I would rather say yes, I have GCA, even if a Doctor did not tell me absolutely, and be safe from stroke or blindness.
You said you were told two years and it goes away usually.
I read that someplace in some literature as well but have seen people on this site and the other one for PMR that have it for years and years, or have it go away and come back. Oh me.
Like you I wonder what kind of inflammatory process this is and why they don't know more?
This thing gets as painful as RA and maybe worse sometimes but is dangerous if you get GCA. Why are we not seeing more research I wonder? It does not appear to be an obscure or seldom heard of disease to the medical profession.
Well glad you posted that info. as it confirms much of what I've read too.
Oh did you know that it may affect your hearing? Well, I read it somewhere.
Yes it's frustrating, I so agree. Be on the safe side.
~Kewanee
Kewanee39134.4948148148Sally -
About your blurry vision - in case it's the same thing that affected my vision, I'll tell you what helped me. I'm severely myopic, and found that at 15 mg. prednisone/day my vision fluctuated from "normal" to the point where I couldn't legally drive in the course of a day. I had to pull out a 10-year old pair of glasses to wear in the afternoons to compensate for the difference. Neither my doctor nor my opthalmologist could explain it, but I did some "googling" and made inquiries on a Yahoo "eye" group, and figured it could be from changes in the fluid density in my eye due to blood sugar spikes i.e. a type of diabetes, which caused a change in the shape of my cornea.
More googling and I saw that taking chromium picolinate (500 mcg), along with a biotin supplement (250 mcg), would help regulate blood sugar as taking corticosteroids depletes the chromium in your system that insulin needs to do its job. When I started those supplements, my vision problem cleared up immediately. Now at doses of 10 or 11 mg. /day of prednisone, I take the chromium picolinate & biotin every other day.
Chromium picolinate is available at most health food stores. According to what I've read, plain chromium supplements aren't absorbed as well, and the biotin also helps with the absorption.
Ruth
Ruth,
Thanks for all the information, but right now it is the weakness in my legs
which I will find out I hope what is wrong. When I eat I find out I feel alot
better which it seems I do alot of. My sugar is a little higher than it was
when this all started. I started at 60 than 40 now 30. I felt better as soon
as I had the dye test done. I am just so glad to have someone else to talk
to that has had this inflamation and the pain is gone. Sometime when I
type some pain comes back in my arms.
Oh yes I wanted to tell you my real name is Ruth.
Sally
Kewanee,
I read an article on-line a while back that said the reason there isn't any research being done on PMR, and isn't likely to be, is because prednisone does such a good job at taking care of the symptoms. Isn't that a crock, when so many PMR sufferers have as bad, if not worse symptoms, from the prednisone??? Maybe it's just not a "fancy" enough disease process for the medical field to spend their money on researching.
Yes, it does go away - eventually - I couldn't tell you how long, as everyone seems to be different. As for not hurting your body, I wonder. I am still so stiff after all the deconditioning from having PMR. I feel like I'll never get the strength back that I had prior to it. And I sure hope it never comes back!!! I forgot to ask my rheumatologist if he knew that for sure. At least if it ever does, I'll know what it is.
Reni,
I was thinking last night...why does Pred. work so well, quickly and effectively for this and GCR?
I would think that would be a starting place for research. Maybe that is where things go wrong in the first place, with what our bodies normally produce.
Pred. is helpful in many situations but not as quickly as it is for this and is not effective in some autoimmune illnesses at all on the other hand. Often for example it does not help in Sjogrens Syndrome.
It really gets me why more is not done.
I think you are probably right. It may take a long time before you would ever feel back to yourself between this disease and what the prednisone has done to us.
I hope it never comes back too! Enough.
~Kewanee
Kewanee,
I am learning so much from all of you and appreciate having people to share with greatly! Please keep an eye on your GCA as I have heard that it can happen very quickly. One fellow PMR patient was driving when she went stone, cold blind. Very suddenly! A quick thinking emergency room staff saved her vision with a mega dose of steroids, but it must have been horrifying for her. The thing is, I can't get a straight answer from my rheumatologist on the steroid amount necessary to prevent the blindness. I am on such a low maintenaince dose that its hard for me to believe I am safe. I guess the key really is your sed rate. Without the inflamation you can't have GCA...so whatever dose keeps your sed rate under control will do the trick...I guess. I am crushed that my small dose could not be stopped without the recurrance of severe symptoms. I suppose I will be dependent on this stuff for many years to come. Susan M.
Susan I hope not, and that you will someday be free of this thing.
Yes, I've been thinking alot of the GCA thing.
My jaw on one side is bothering me.
I am wondering if GCA goes away or can it exist alone without having PMR?
I read that GCA calls for 60-50mg. of Prednisone at first or in an attack.
That is sooo scarey about that person who went suddenly blind.
I had partial blindess in one eye for just a few minutes two summers ago and am wondering if this may not have been the reason.
I see the Rheumy today and I fully expect my sed rate may be normal. It was not real high when they found it and has never been elevated in my life other than with this, even with an other autoimmune disease flaring up.
Can it be detected when you are being treated with prednisone?
Kinda afraid of it being normal because I sure know this is still here even tho the pred. helps with the pain.
Hope your day is a good one.
~KewaneeKewanee,
You posed some interesting thoughts. I've never asked the rheumatologist, and maybe should, that if prednisone works so quickly and well for PMR, could one's adrenal gland be producing insufficient amounts of cortisol? And if the body is supposed to produce about 5mg of cortisol anyway, why would a "maintenance" dose of less than that of prednisone help keep things at bay? I don't understand all this.
If you are on a low (10 mg or less) dose of prednisone, I would think that you'd know if you had GCA. The inflamed vessels are supposed to be very tender to touch. And even on prednisone, I would think they might be able to tell from a biopsy, though I guess there are always those areas that the inflammation skips, and they might be testing one of those. It's just all so confusing. If I had ANY bad pain at my temples or anywhere on my head, jaw or tongue (while chewing), I would certainly press for a sed rate if not a biopsy to make sure about GCA or not. The risks are too scary.
Hope you all are getting some answers and relief.
Reni
hello my friends, we are all hoping and praying for some relief from all this pain, My GP couldn't answer my questions re all of the above, just wrote out a presciption for more Demerol....So decided to get away from all of this crap and leaving for Cayman Islands to-morrow, our relatives down there have pool, hot tub, no stress, so will let you all know how that works out..I also made appointment for acupuncture, reflexology for when I return, won't be back until March 31st....am so thankful I am able to do this, didn't bring any pred. so am living dangerously.....praying you all feel better soon, will get back to you all asap.....take care..regards Rose
I saw a Rheumy yesterday.
The nurse was first however. She had told me they used to give a shot years ago to make your adrenal glands produce more cortisol. Interesting.
My Doc. firmly believes in the biopsy for GCA. But he did tell me that irregardless it treats the same even if they did find I had it.
I said why do it then. I also presented the info. I'd found on the biopsy not always being helpful. In fact in large percentages it may not show it up. He was not approachable.
I mentioned that on the forums I see people who have PMR for seven years or more and some have it go just to come back and asked how long is it usually. He said a year. I don't know as I trust him because he also said to my statement that I see some in their forties and fifties now are getting it, that he does not know who their diagnosing Doctors are but he doubted they were getting properly diagnosed.
Oh oh, not open to new info. or ideas. Funny since they know so little about this disease such as why it happens and any other way to treat it.
He feels the biopsy for GCA shows previous inflammation to the outer surface or inner surface, of the vessel.
Don't know, but I see alot of contrasting info. He is one that does not accept things easily.
Oh well, wants me off the prednisone quickly as well and I'm willing on that one.
knitwit,
When did your pmr leave,and how long did you have it? I'm down to 17.5mg pred. now, and so far(only on this amt for 5 days now)am doing prety good. I can really identify w/the weakness aspect. I think I became so out of shape due to the pain I'd suffered before being DX'd. It stopped me cold.
Love you guys. I don't post often, but I appreciate this site so very much.
Faye
Faye,
I'm coming down and we'll just see how gone it is for me.
Rose have a good time for me too.
Hey, did you see people are writing OPRAH for a show on PMR and hopefully GCR. Guess they say they are going to go to her site and register their hopes.
~KewaneeHi, Faye!
My PMR quit several months ago (don't know the exact date; it seemed to just "disappear",as far as I can tell). I had it almost 5 years. Hope that doesn't scare you; some folks seem to have it less. From what I've been reading on this site, most of the folks here seem to have it worse than I did. Mine was bad enough, and at first I thought it was just more of my back problem manifesting. I was only on prednisone for a year, plus the 2 weeks trial period a year before I finally got put on the drug "full-time". I only took 10mg max for the year, then onto plaquenil for 6 months, and then I just got so tired of all the medication, I quit taking all of them cold turkey. My current rheumatologist said I really wasn't on prednisone long enough - that most patients are on it for two years or longer. From what I've been reading on this site, I'm very thankful I was able to quit it without too much trouble. And my rheumy was very supportive when I told him I'd quit all the meds. Actually, the hardest one to quit was the elavil. I'd taken trazodone for about 7 years with the back problem, to help me sleep. They say you can't get addicted to it, but you sure can get dependent on it. It took a good three weeks before I could start to sleep on my own again, but I still take it now and then, as my backache keeps me from sleeping well a lot of times. Still better than having the PMR, though.
Hope you all are doing better. I pray for you all, and really can empathize with what you are going through. I do look forward to hearing when you all are free of PMR!!! Take care.
Kewanee, I did not hear that people are writing Oprah for a show on PMR. That would be so cool if it makes it. I, like most of you, had never heard of this disease before I got it, nor have most people I talk to. Even the health care professionals (unless you're already seeing a rheumy) aren't very familiar with it, if at all.
Reni
Reni
hello all of you good people,,,,here I am in sunny Cayman Island, 95 degs. to-day down to 76 at night,,,tk the lord for air conditioning...however getting into the hot tub, wonderful, and the pool relieves a lot of the leg etc. pain...still have problems with neck pain but not as severe,,,,still on demerol and tylanol arthritis, but try to cut down, but today was bad day, maybe humidity. Getting around doing more household chores though, busier than at home in snow etc. met another lady here from Fla. and she has PMR big time, but doesn't know what I'm talking about when I mention it...going through all the doc. route from orthapedic sur., heart spec., bad back, can hardly walk, but they don't know what is wrong with her....It is pitiful to see so many in pain, more than I have ever imagined, and doc's just prescribe pain meds.
as I told u I made arrangements to see accupucturist, reflexologist in April, daughter phoned me to say a lot of literature was in mail as well as questions re previous diagnoses also a request for what i had eaten the week before. sure hope this is the way to being pain free.
Strange how we all try to keep the faith....regards to you all,,,bye for now, prayers for you all.....................cheers rose
Rose, I'm so jealous! Have fun.
Ah Rose
Think of us in cold wet England......
Tho' yesterday it was 13 deg C and we were out in the garden! Today it is 8 deg C and pouring with rain. Yeuk.
Enjoy yourself in the warm.
God Bless
Judi xx
I am one of those people that had PMR for 2 years and than it went away. Last July (2 years later) it came back. In a lesser form and I now only take aleve for it as oppesed to prednisone. Whe I was diagnosed at 49 I also had the GCA biopsy done due major headaches. (negative)
I am very dissapointed it came back but thankfull it is not as bad. Just the GCA possibility freaks me out!
Hi Marianne, I'm so happy for you that the PMR went away. They say that is supposed to happen, but I'm beginning to wonder. I'ver had it over 2 years, but diagnosed and treated with prednisone only one year ago. It would be so great if it would just disappear like yours did. Thanks for sharing and have a great weekend.
Brich.........yes it went away but in July last year it came back!!! This time my fingers and wrist involved (last time only my arms legs hip area) . But.......as I mentioned it came back! In lesser severe form for which I am gratefull. Wake up totally stiff though still....walk around like a robot in the morning. My last sed rate was normal though (below 20). Going to the reumy on thu.
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