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Temporal Arteritis - Giant Cell Arteritis

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Posted 3/12/2009 5:01 PM (GMT 0)
I would like to start a discussion among temporal arteritis, also known as giant cell arteritis sufferers. This disease causes inflammation in the arteries in your head.  It can lead to blindness if the optic nerves lose their blood supply.  Prednisone is the only treatment and it usually does work, thank God.  The problem is how long you have to stay on the prednisone and if you are ever able to come off it totally.  Prednisone has many bad side effects and the longer you stay on it, the more miserable you are, but you have no alternative medicine that has been proven to work.  I have had temporal arteritis for seven months and my sed rate is normal.  However, I had reduced the prednisone slowly before and I had a flare, so I had to increase the dosage.  Now, as the sed rate is within normal range, I am tapering slowly again.  Who knows if this will work?????  I am now a chipmunk cheeked, looking like I am ready to give birth, shaky, insomniac who has fatigue through the roof.  Wondering if there are other chipmunk cheeked, temporal arteritis people out there that can commsserate with me?
Posted 4/11/2009 5:07 PM (GMT 0)

I read your post about starting a GCA thread and it was as if you were reading my thoughts.  I have been on imuran and prednisone for six months now along with 10 other medications for neurocardiogenic syncope and a bleeding disorder. If you were to look up prednisone side effects in the dictionary, my puffy body would be pictured smilewinkgrin    I have good days where I think, okay I can get through this and I'm not going to die from it so life is pretty good.  Then I have bad days where I am depressed, tired, buzzed, achy, down with pneumonia AGAIN (3 times in the last year) and I wonder if I'll ever want my husband to see my naked body again.  I am down to 20mg/day prednisone but with the pneumonia I was advised to hold the decreases until after my lungs are clear.  On the plus side, my eye and head only have a dull ache to them today and I am willing to blame it on the continuous rain we've had lately.  How are you holding up?

Posted 4/11/2009 7:33 PM (GMT 0)

I was beginning to wonder if I was all alone with this Temporal Arteritis.  Although I am so glad that you answered my plea for companionship through this affliction, I am also so sorry that you have it too.  Since we both have it, let's try and get through it the best way possible.  I have searched the internet to find out as much as I could.  I have found a lot of sites about the usage of prednisone and what to expect, and I have found more people with PMR which goes along with TA.  I have had muscle pain for years, tender spots all over my body, and spasms.  I never associated it with anything in particular.  Now, I wonder if I have had PMR a long time.  The TA came on suddendly by a headache that I thought was probably sinus related.  It did not go away, so I went to my Dr.  He ran some blood tests and my Sed rate was 96.  He put me on prednisone right away, thank goodness, as a lot of people are diagnosed with TA after losing their eyesight.  My headache went away and I started the prednisone nightmare.  I also wonder if I have had TA for a long time and it just went away by itself only to reappear.  I have had episodes of scalp tenderness for years, and that is another symptom.  I have had reoccuring urinary tract infections.. something I never had before.  I am now on 10 mg. and go back to the Dr. on Tuesday.  I am so sorry to hear about your pneumonia.  I know you are anxious to get started tapering the prednisone again.  Let me know about the illness you have that you referred to.  It should be a rule that you only have to have one illness, not many.  If only that were true. 

I hope this Easter weekend will bring you peace and comfort.  Thank you for joining me in talking about TA.  God bless you.

Posted 4/12/2009 12:35 AM (GMT 0)
You have me worried I have it. I have had terrible headaches, for some strange reason mainly on the weekend in the AM. They seem to involve my eyes, and the sides of my head (temporal?). I had chalked it up to some type of spondylitic (even though I apparently do not have A.S. strictly speaking) bone pain in that I seem to find relief through any combination of exercise (particularly shoulder presses with dumbells), caffeine, cold pills, cigarettes.

So I am not sure if my headaches are caused by 1. bone pain or 2. inflammation of blood vessels. I also take Colazal, but as I said, I get the headaches usually only on the weekend in the AM and they go away as the day progresses, to the point they are completely gone by nightfall.

PS - is the 'sed rate' something that is part of a routine GI blood work up (ie along with CRP)??

I read a lot of books, and I do not particularly want to go blind.

Thank You much
Posted 4/12/2009 1:06 AM (GMT 0)
Hi:  I certainly did not want to frighten you......you can have headaches and it not be from Temporal Arteritis.  TA usually effect people over 50, and women more than men.  I was 65 when diagnosed.  I had headaches for a year or so that were pretty painful, but they did go away.  Then, I had one for ten days and went to the Dr.  The pain was on both sides of my temples, in my forehead and behind eyes.  I had never heard of TA, so I was surprised when my Dr. mentioned it.  After the high sed rate (blood test that measures inflammation in your body), my Dr. was certain of his diagnosis.  You can have a biopsy done on one of the arteries in your temple area, if your Dr. is not sure of the diagnosis.  I suggest you call your Dr. and tell him your concerns...if you are over 50, it could be TA.  Ask him to run a sed rate and if it is elevated, then you will know.  Temporal arteritis can cause blindness if the blood supply to the optic nerve is diminished.  Blindness is one of my biggest fears as far as being disabled.  I am sure noone wants to live without sight, so I was grateful for my Dr. putting me on prednisone as soon as he thought it could be TA.  Prednisone is the only treatment and it is successful.  The key is knowing how long to be on the drug and tapering it slowly.  I have already had one flare (rise in the sed rate) and had to increase the dosage.  I am now hoping to get under 10 mg.  The side effects of prednisone are bad.  I am thankful, however, that it has helped get the TA manageable.  My sed rate is now normal, but you have to be careful to keep checking the sed rate and the C reactive protein test...which is another test for inflammation.  I hope this information has been helpful.  Please let me know how things go with you.  I hope you do not have TA, but if you do, please don't panic....it is better to know what you are dealing with so it can be treatd.  Happy Easter to you.

Posted 4/12/2009 3:25 PM (GMT 0)

There are many things that can cause weekend headaches besides GCA or TA.  I am not in the medical field but having also had migraines since I was 11 years old and am now 52, I can tell you that changes in sleep patterns can be one.  Especially if you are used to getting up and having a cup of coffee first thing in the morning and then on the weekend you stay up later and sleep later.  I used to get "vacation" headaches due to a different schedule.  But I agree that it is worth getting looked at and having some blood tests run to rule out causes.

I also have something called "vasovagal syncope" or "neurocardiogenic syncope".  This is separate from the questions you were asking, but something that HopeandFaith asked of me previously.  Basically, my heart and my brain don't communicate with each other.  When my heart needs to speed up and pump more blood, my brain tells my heart that it doesn't need to do that and if I am not careful I pass out.  I was put on midodrine for the condition almost two years ago for it and it has helped me tremendously.  It started with being internally dizzy where inside my head would swim not the external room and came to a head when I was driving my motorcycle and passed out.  Luckily, I didn't hurt anyone else and only cracked a few ribs.  I won't drive it again until I am cleared by the doctor to do so.  I am more terrified of driving into the opposing line and hurting someone else.  I have trouble standing up for periods of time. I seem prone to these weird things!

And just to make my life interesting, I also have a bleeding disorder similiar to von willabran's, where my blood takes forever to coagulate.  It appears that everything I have is blood related, but it actually took going to the Mayo Clinic where a team of doctors were able to separate it out and help me.  The GCA was diagnosed lastly but very quickly  since my sed rates were high and I was having double vision. 

I hope this is a good day for everyone,

psk261

Posted 10/4/2010 12:45 PM (GMT 0)
I will be on Prednisone a year tomorrow, I got TA over a year ago but was diagnosed properly 5th Oct 2009, am so sick of taking the tablets,my face swelled up and to remind me i have a headache today, will we ever be off the tablets? I know they are for our good but am really sick of them now. :)
Posted 8/1/2011 9:08 PM (GMT 0)
I have temporal areritis and polymalgia rheumatica, diagnosed last feb and am on 40mg.prednisone a day.

I hate this drug with a passion,I look so very bad that I don't even want my husband to see me. who by the way is no support to me,he is a person that thinks that if you don't discuss a problem it will go away.

I am so depressed I am beginning to hate him.

I have been through so much this year and all he does is sit in front of the tv.

I also have had a rerrible time with allergies this year,i have severe allergies

I also have moderate sleep apnea and have been trying to deal with that.

I just don't think it's worth it at this point.

I'd rather go ahead and die.

All these side effects are killing me anyway

Posted 11/27/2012 12:30 PM (GMT 0)
A big HELLO to all and sympathies to all who suffer from this GCA

I have been having headaches , face pain , scalp sensitivity , jaw pain , painful neck and glands , sore tongue and it feels like my shoulders are being pinched and a never ending pain in and all around my neck ... all this I have had for 8 years after suffering an attack of domestic violence . Just recently I have had upper stomach pains and had a ultrasound which said everything in there was a OK :)

The first time I had the headache it was like I was a crazed animal . No painkillers worked . I was pacing and couldn't keep still from experiencing such aweful extreme pain . I felt like my head was expanding or overheating and used to run baths of cold water so I could stick my pounding head in the cold water .
I am so worn out and keep sweating whilst doing simple chores like washing up or getting dressed .
In last two years my hips have been ' clicking ' and I have a grinding sound in my neck when I turn my head either way ... does anyone who has GCA have these symtoms ?

I have seen optician twice in the last two years as I am losing my eyesight . It first started with double vision . My ocular pressure is high and when I saw the eye hospital they said there was nothing wrong with my eyes ! A year on and I have been to opticians again to find my eye sight has got worse and pressure is still high . The optician said it is definately not glucoma as my field vision is fine .

I have seen a neurologist 4 times and each time his tests show there is nothing wrong with me .

I have a brain scan arranged in December [ only waited 8 years for one ] but the headaches and face pain are getting so bad ... I can't relax at all ... Im like a cat on a hot tin roof ;)
Im on 70mg of Amitriptyline , 500mg Tegretol twice a day , Co-codydramol and naproxin as painkillers . Nothing is working :(

Could I have Giant Cell Arteritis ? The docs diagnosed Fibromyalgia and A typical face pain but I can tell you there is nothing ' typical ' about this pain I am in and Im scared Im going blind .

They say GCA may be genetic and I traced early deaths [ bewteen aged 46 - 52 ] going back to 1800s on my family tree , all connected with vascular disease ! My own mother has ' neuropathy ' which was diagnosed about 5 years before she got Diabetes ! She had a scan and although there was a dark patch at the back of her neck nothing was ever really done or explained . She also suffers from extreme sweating , as does my eldest daughter who is only 24 ! Do ESR blood tests have to be high levels to have GCA as my ESR level is 3 and what is ' normal ' ESR ' levels ?

Can a CT Scan show GCA ?

Post Edited (pain.com) : 11/27/2012 5:59:49 AM (GMT-7)

Posted 7/20/2014 1:37 AM (GMT 0)
Anybody out there with temporal arteritis????
Posted 7/22/2014 8:45 PM (GMT 0)
I have temporal arteritis, went on prednisone for four months, finished it and the symptoms returned. the rheumatologist I saw said he will not treat me unless I have the temporal artery biopsy, which I know I cannot do (they do it when you are awake and I have trauma issues) and so here I am waiting to stroke out or go blind. So frustrated.
Posted 7/22/2014 9:01 PM (GMT 0)
I'm sure you're more than frustrated! I'm a big sissy but did fine with the biopsy, as the needle wasn't bad at all and the doc kept up a patter (about food, as he caught on that it's my favorite topic) throughout the procedure and I had a light covering over my face so couldn't see a thing.) But I'm thinking your issues are not just being a sissy like me....Why the hell can't the rheumatologist put you out or at least give you something that will relax you all to pieces?? I didn't go to a rheumatologist for the biopsy but to a surgeon that did that procedure. He was a gem. In Westchester County NY. Can you see another, more understanding, rheumy? As I understand it, and I have read forty-two zillion articles on this disease, one is to immediately be put on Prednisone even if there is the slightest suspicion of TA, way before the biopsy is done. I'm thinking - get a new doc. Pronto. I don't guess you want a photo of my incision......Nan
Posted 7/4/2015 6:01 PM (GMT 0)
11/2013, at age 67, I was TAA biopsy positive. (Biopsy did not hurt. Local anesthesia) PMR also suspected. History: serious fatigue for seaveral years, shoulder pain, got neuro virus 12/2012, getting sick often; headaches, dragging, disorganised, low level depression. But continued working at full speed (crashing at the end of the day). Bad Flu symptoms hit 10/25/13. After 15 days of unbelieveable body and head pain and heart attack symptoms went to hospital. EM RM doc ruled out heart, brain, stomach, and lung disease. Tested for Flu, and inflammation markers. Both positive/off the charts. A rheumotologist was sent in. She asked if my scalp was sensitive. It was so sensitive I could not touch it. She said she believed I had TAA and PMR. possibly triggered by the flu. She said I needed to be on 60 mg Prednisone to control side effects of TAA (stroke & blindness). She said that if the pain did not go away within hours then the diagnosis would be revisited. I was sent home with a RX..got it filled..took the meds...the pain subsided in 6 hrs. I scheduled an out patient temple biopsy. It was TAA positive. I took steriods for 19 months. In 12/2013 began taper as per instruction. I am, today, 4 days off prednisone. I think I am in remission. Time will tell. I believe there are common threads to this disease but each person may have a unique event based on their own body. My hair curled, big toe nails (still) painful, still some fatigue. Lost 12 lbs quickly at beginning then gained 20 over 19 months. Was ravenous on drug. Appetite now normal and face swelling gone. Slowly loosing the weight eating no sugar, lo carbs. Waiting for energy levels to lift. Had bad GERD through this but that is gone. I got great care from my docs. They called shots right.
Posted 7/4/2015 6:25 PM (GMT 0)
Hello! Sounds like you're doing very well! Your illness was far worse than mine. I had severe headaches, weird optical auras, pain when chewing - the usual stuff. I've been on prednisone for 19 months and am now down to 3 mg (I was on 60 for many weeks at one point). I went to 2 mg but the morning headaches came back so upped it to 3, and oddly that small increase helped. I no longer look like a chipmunk, which is nice, but I understand the pads of fat on the tummy are mine to keep. I found that when a bad headache shows up, if I press on the area where the biopsy was, the pain instantly leaves. My rheumatologist thinks that may be acupressure. So you're off prednisone! I hope it goes well for you!
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