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Temporal Arteritis And Prednisone...

I was diagnosed with temporal arteritis two years ago.  I had a headache that would not go away, went to the Dr. and my sed rate was 96.  He immediately put me on prednisone, thank God.  The headaches went away in a day.  This was the beginning of a new experience for me, as I swiftly tried to educate myself through the internet about this disease, and equally as disturbing, the treatment.  Prednisone is the gold standard for TA, and at first, I thought it was a wonder drug.  Then came the side effects.  Elevated BP and glucose, moon face, insomnia, shaking, fat pad on the back of the neck and weight all shifting to the stomach area.  Yikes.  Not only have I looked terrible for two years, but have had bouts of fatigue that are such bone crushing.  I have become more of a homebody as I usually do not feel up to anything.  Initially, I thought this would be manageable.  My sed rate did come down, and then with the reduction of prednisone, it went back up.  Withdrawal symptoms from prednisone are in of themselves a horror....but, I was ok, if I could get off this drug....I would suffer the side effects and hopefully, get some sembance of my former self back.  Not so fast.  WIth the reduction of prednisone, slowly reducing the dosage.....my sed rate started back up again.  To my disappointment, my Dr. had to raise the dosage of prednisone again.  Back and forth....reduce and then have to raise the dosage.  Each time, it reeks havoc on your body and mood.  What can you do when you know that the risk of sudden, irreversible blindness is looming large.  From what I have read, the risk of blindness is not as great if you are prednisone......but, if your sed rate rises again even on prednisone....what is the risk then?  You become trapped by the sed rate.....what number will it be this month?  My sed rate is now 67 and I have raised the prednisone to 10 mg.  Took a blood test this morning and will find out the results in a day or two.  Will I have to go higher?????  I have had no headaches for two years since I was first diagnosed.  I have had a tender scalp which is a sign of TA.  I desperately need to talk to others with this disease.....I probably have polymyalgia rheumatica which runs with TA....as I have fatigue and muscle pain.  Please help me by sharing your story with me.  Thank you and may God bless you.

raiderguard raiderguard 66-70, F 23 Responses Mar 8, 2010

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I was diagnosed with TA and PMR 9 years ago, although I started showing classic symptoms for both 14 months prior and kept getting misdiangosed as I was only 44 then and all my doctors seemed to think I was too young for these ilnesses. The strongest advice I can give you is to find a prednisone dosage that alleves all the symptoms and stay on this dosage for at least 6 months to a year. Then, as you are beginning to feel better, lower your dosage as slowly as possible. After fighting roller coaster episodes of pain, I finally learned that this was the only process that works for me, at least so far. When I was finally diagnosed, my sed rate was 150, pretty much through the roof. My dr put me on a very high dosage of steroids but as soon as I started feeling better, which was pretty quickly, she brought me down rapidly. The flares came back with a vengeance. Over the next 6 years, I was going up and down, skipping every other day with higher doses on the alternate day; you name it, I tried it. Finally, I asked my dr to put me at a safe dose where I have room to go up or down safely should I need to, to control the pain. She retstarted me at 12mg. I told her I would only go down 2 mg each year. I am now at 8 mg per day in my 9th year of fighting these autoimmune diseases and I am hopeful I can get down to 6 mg by August; although every time I finally got down to this dosage in the past, the flares came back. Who knows, 8 mg might be what I have to stick with for the rest of my life. I must warn you, though, about another side effect to long-term steroid therapy; it can and most likely would cause Cushing's Syndrome. The symptoms of Cushing's Syndrome are similar to Cushing's Disease; however, the latter is caused by overproduction of cortisol through a possible tumor, usually benign, of the pituitary or adrenal gland. Classic symptoms are some that you have described: round face, usually red; fat pads on the back and usually around the collar bone; weight gain around the torso usually accompanied by purple stretch marks, and extreme muscle weakness and fatigue. Other symptoms might include brittle hair, hair loss on the scalp but hair growth on the face; changes to your skin including the thinning of the skin as well as easy bruising and cutting. You might want to visit an endocrinologist who can take some bloodwork and examine you physically for a diagnosis. The typical therapy in handling these symptoms, believe it or not, are steroids, but in low dosages, if possible. I really can sympathize with all the pain you are going through, on an emotional, mental and physical level. I have a very hard time looking in the mirror now as my physical features have changed so drastically. Like you, I have become antisocial having no energy to participate. I hope you are able to manage your pain at a safe and low level of steroids. If you're able to do this, than a lot of Cushing's Syndrome symptoms can begin to reverse. Please make sure you find out if you have this condition or not . You and all other sufferers of these rare and difficult diseases will be in my prayers that God restores good health.

I am 26 yrs old and for the past 7 months i have has HORRIBLE headaches, jaw pain, blurred vision, eye pain, neck and arms hurt and can out a shirt on and have to change it cause i sweat so much. I have been in and out of the doc. and they cant figure out whats wrong with me. I got blood work done and my levels for infection and inflammation was high. could I have TA?

I have only recently been diagnosed with temporal arteritis. I was put on prednisone two days later. My sed rate dropped from 118 to 81, Two days after I started the prednisone.Then one week later was at 34. I can't quite figure out why if my numbers dropped so drastically I also continue to be on an unbelievably high dose of prednisone. I was told to take 60mg the first 2 days then 40mg daily and continue on this dose until I see my Doctor in 4 months. 4 months!!! That is an incredibly long time at this high dose and am baffled by my Doctor's.seemingly cavalier attitude about my diagnosis. Did your numbers drop off quickly or over time?

NS58, You may want to join a more active support group for TA (GCA - PMR).

I suggest: http://PMRandGCA.forumup.co.uk

and http://health.goups.yahoo.com/group/giantcellarteritis

For more information, visit my web page: http://frontal-lobe.info/gca/gca.html
where you will find a GCA experience video and a book.

No need to be frightened, just get all the knowledge you can. (I'm 92 with GCA 4 years)

Wow! I only found out last week 4/2013 that I have TA and probably PA also. I'm only 55! Sad part, I was given a clean bill of health in Feb. Everything I had read up to this point about the disease is scary, but sounded manageable....or so I thought. I'm very frightened at this point. Blood work, eye exams. I had no clue the toll it could take on my life. I plan to fight with healthy habits which I already had, but it sounds as if that in itself may be a task. I am not ready to give up my life!! I need some positive input. Someone please! My prayers for all of us who battle this disease. I wish everyone the best.

I'm into my 8th month of confirmed TA AND SOUND ALMOST LIKE YOU! I'm 63.

I have been diagnosed with possible temporal arteritis. I am 58 and was healthy till last fall when I had what I thought was an inner ear infection. Then this spring after a month of jaw pain ( didn't do anything as I hate dentists ) I developed a severe and constant headache. After several trips to my Doctor and emergency he took my sed rate. It was 76 . Immediately I was pulled off work and started on 60 mg prednisone. Miracle drug I thought!! Then the temporal biopsy came back negative and he started rapidly reducing prednisone. Two weeks later I was admitted to hospital for one week..Saw another neurologist and left hospital with the original diagnosis. Now I find that they are still not certain. I cannot work as I am easily fatigued and become shaky if too tired. So I am waiting for long term disability to be approved and am living with the side affects of prednisone and living with my kids. My sed rate is checked biweekly as it goes up and seemingly dependent on how much activity or sleep I get. Every time it spikes the Dr ups my prednisone and then starts trying to wean me off again. I started this drug in February and at present am on 25 mg once daily. I am tired of everything and especially tired of being so weak. Last year I was hiking several times a weak and was known at work as one of the strongest and hardest workers. I am a care aide. Now I get tired and unsteady if I walk too much. I went shopping last week for an hour and suffered two days with a headache. Sounds like what I am experiencing is normal with this disease, but so un-normal to most healthy people. I guess one day we all will be headache free and off the terrible side effects of a drug that is curing us with a bit of living death.

I am 69 and was diagnosed July 2012 after headaches and tender, swollen arteries. My primary care physician didn't think I had anything, because my sed rate was normal. My eye doctor suggested a biopsy that proved I had the disease. I started on 80 mg of prednisone and have been gragually reduced down to 20 mg two separate times, only to have a flare of swollen arteries in my head. I am now taking prednisone (30 mg) and methotrexate (10 mg, once a wk) and seem to be symptom free of the TA. I also have polymyalgia rheumatica. This is a frustrating and scary disease and I can see it takes many different forms, ba<x>sed on reading the stories here. <br />
.

I was diagnosed with GCA/TA?PMR in august of 2011 in the ER. The doc started me on steroids that night 60mg by injection. I was told to follow up with Kaiser the next day. I was then referred to a rheumatologist but before I could get to see one I had to call 911 because I was having heart problems. Turned out the steroids caused me to have Atrial fib and almost killed me. The problem was the interacted with other medication I was taking. Well, now that all that is over I have been on 60 mg for 7 months off and on. I get down to 40 and have symptoms of both diseases again and back up to 60 again. This latest time we have tried to bring me off steroids have included methotrexate. It make you feel like death. I was able to get to 35mg of steroids a day when after a week here came the headache and stiffness. This was the worst headache since I was diagnosed. Guess what? Doc ups me to 60 mg again. I am so frustrated with this disease. It is horrible. I dont look like myself anymore, I have a moon face, fat stomach, high bp, high blood sugar, high cholesterol, and cushings syndrom if there is a side effect to the steroids I have it. Seems like the side effects are worse than the TA?PMR. My sed rate is higher than it has been since I was diagnoised. Has anyone else had problems coming off the steroids? I am only 51 and feel like I have a life time of living to do but at this rate Im not sure...

I had all the symptoms of TA for many years, before diagnosis. You can't go by SED rate. Mine had been very low, and so, even with all my symptoms, no doctor ever suspected the disease. Because of my symptoms, I was sent for many MRI's, CT scans,Xrays, and other useless tests. Finally, when I told my symptoms to a new eye doctor, he immediately said, "I strongly suspect that you have Temporal Arteritis," and said that I shold be on a high dose of prednisone, even before the biopsy was made. I had the biopsy, and did, indeed have TA. It's been seven years since I started the prednisone treatment, and am still wracked with misery constantly. Because the diagnosis came so late, my eyes have been damaged. Retina surgery, (done before the diagnosis of TA,) only made the conditiion worse, and pain and constant discomfort in my eyes makes life difficult. When I lower my intake of prednisone below 5mg every painful symptom returns. The pain is not only in the head, but nearly every part of me....eyes, different parts of the head, ears, jaws, neck, arms, hands, legs, and feet. I was an active, athletic, vital person, but am unable to do everyday tasks now. Therapists and doctors tell me to be active...................."Get out and walk, swim, etc." No one understands. "Doctoring" seems so futile. They seem to have no understanding. Perhaps the Prednisone has kept me from going totally blind, but feel that the effects of that drug have done considerable damage.

I am 26 yrs old. Yes, 26 and I was told Temp Ar is usually diagnosed in people over 50. I was diagnosed with Temp Ar. in Oct. 2010. I was a healthy, vibrant woman who excersized everyday and was an honor student. When I was diagnosed I had the headaches from he!!. I was bedridden and couldn't move for days. I was given an x-ray and CT scan then was put on prednisone. The prednisone made the symptoms for Temp Ar go away but then gave me new symptoms (i.e. gain weight, insomnia). I have been off the prednisone since March 2011. Now I have new symptoms. Headaches are back, blurred vision, fatigue, dizziness, inability to concentrate, body aches, cough, excessive sweating, and other symptoms that come and go. I am still suffering and can't work. I have issues doing routine daily activities because I am so tired and in pain most of the time. My doctor has never spoke of a sed rate? He may have gotten it done but maybe he just didn't tell me about it because there are blood test that I've just done. Will this Tem Ar get better? Can anyone tell me if they got SSI disability benefits with Temp Ar? Will I have to get a biopsy done? I have been suffering from this for over a year any information you can give me will help.

Aloha, I have been having tremendous headaches, eye pull pain and jaw pain only on the left side. Went to 2 optomologists and they both said it had nothing to do with the eye but felt something was putting pressure on my optic nerve. The pain was so bad one day I couldn't take it. Went to emergency and they gave me a cat scan and it was normal. Ordered an Mri for me an MrI and I am waiting for those results. After looking at different types of neuritis all your symptoms sound alot like mine. Mahalo for all your imput. I will let you know when the results come in. Must get off the computer and lay down.

I have been recently diagnosed with PMR and GCA. My sed rate was taken by the lab by mistake over a year ago, I have had several tests since and they average over a 100. Even though I had the joint pain and stiffness, (doesn't everyone) I felt pretty well otherwise. Decided instead of chasing the labs anymore that it would either go away or rear it's head. About a month ago I started getting the temporal pain, jaw and face pain, sensitive scalp and just on all over not feeling so well. I decided not to do the biopsy since the treatment would be same weather it was positive or negative. I was put of 60 m of predisone and the temporal headaches and joint/ tissue pain disappeared quickly. I have days where I feel really good, but mostly feel very ill. I am still on 60 m (starting my 5th week)and my sed rate is at 67. Do I have something else going on here? I am really concerned about the long term high dose. I am 53 and need my bones to get me through another 20 years Is it the disease that makes you feel bad or the side affects or is there something else going on Help?

I'm 43 and told I have a low liklihood of having temporal arteritis but I have a small lump on my forehead, jaw pain.....

My symptoms began with a soft lump in the top of my head and within a few days that lump became very sensitive to the touch. From that point my forehead became deformed and disfigured on one side. MRI was taken but came out OK. A few days later I had symptoms of having a Heart Attack and was rushed to the Hospital. Was admitted and stayed for 7 days while they tested me for everything under the sun. My Blood Pressure and Glucose was through the roof. SED rate was above 100. Started out on 60mg of Prednisone per day, 5 months ago now I'm down to 10mg but the headache will only go away for 4 hours. I'm also taking Motrin 800 mg. to control the pain. <br />
The side effects of Prednisone is part of the reason i'm now takng BP, Heart & Diabetic medication. The Biopsy came out negative but all the symptoms are there...this is really frustrating. I'm 56 years young and usually very healthy but this has really taken a toll on my life and very depresseing. Is there any one else out there who have had the symptoms of lumps appearing on the forehead and around the ear and back of the head?

Hi I have just joined this site and have been reading of your experience. Can I ask how you are now.

My husband's doctor felt for the swollen artery along his scalp and down into his neck. That's how he knew what it was. There was a lumpy artery on one side and normal smoothness on the other.

My symptoms began with a soft lump in the top of my head and within a few days that lump became very sensitive to the touch. From that point my forehead became deformed and disfigured on one side. MRI was taken but came out OK. A few days later I had symptoms of having a Heart Attack and was rushed to the Hospital. Was admitted and stayed for 7 days while they tested me for everything under the sun. My Blood Pressure and Glucose was through the roof. SED rate was above 100. Started out on 60mg of Prednisone per day, 5 months ago now I'm down to 10mg but the headache will only go away for 4 hours. I'm also taking Motrin 800 mg. to control the pain. <br />
The side effects of Prednisone is part of the reason i'm now takng BP, Heart & Diabetic medication. The Biopsy came out negative but all the symptoms are there...this is really frustrating. I'm 56 years young and usually very healthy but this has really taken a toll on my life and very depresseing. Is there any one else out there who have had the symptoms of lumps appearing on the forehead and around the ear and back of the head?

Hello <br />
I just found this site, My husband was diagnosed with probable giant cell arteritis in November He has had several spells of facial pain and ultra sensitive scalp (not even able to touch hair without pain). One time also severe pain in the ear as well. This was put down to ear infection ???. However when he had what we thought was a virus as he had high temperature shivers shakes but no other symptoms in November we finally had to go to doc as pain was so bad he did not shave or want to brush his hair. Saw a trainee GP thinking it was neuralgia but she was concerned and ordered a blood test. <br />
Had next day call from her to come in urgently as ESR 68 & CRP 139. She contacted the rheumatology next day then called to say get to surgery for scrip for steroids (40mg to reduce every month) and apt with hospital on Friday. (Biopsy ordered but cancelled twice) but 2 wks later tests well down after 7 weeks tests back to normal levels. We are so grateful that she picked up on this as we are sure that was the cause of the severe ear pain last January. If this is correct he is soooo lucky his eyes were not affected. <br />
Oh his weight is up 6kg since end of November to apt on 13th January and still rising.:-(<br />
Seems that the signs of scalp tenderness and pain can often be missed.( male nurse and doc ignoring that bit on previous visits.)<br />
Thanks for reading and best wishes to all of you suffering from this nasty disease. <br />
Jean x

My father was diagnosed with TA this morning. He is 72and has all the symptoms but never picked up by any doctor. He has blurred vision and is in pain. Any advice from you all would be great. He is a diabetic as well..

You've had bad luck with GCA and its treatment. The evidence for methotrexate use is very weak. <br />
Do you need the Fosamax? Have you had you bone mineral density measured? All active drugs have side effects. You might add my experience to your research: http://frontal-lobe.info/gca/gca.html.

My rheumatologist put me on methotrexate. He tried to wean me slowly off the prednisone but I had a flare out the wazoo (the ice pick in my temple and the eye pain which is very scary and the polymalgia of course). I've been on the methotrexate since June 26 and have weaned down to 10mg of prednisone. So far no flare. The "meth" leaves me a little tired all the time. I can still work but am on moderate duty.I do have to take b/p meds, folic acid, fosamax, extra vitamin d, calcium and daily vitamins. Now All I need to do is lose about 10 lbs. Thats going to be hard because the "meth' and the "pred" make me ravenous. Lots of salad I guess. I get very depressed but try to take each day as it comes. I work hard to keep from feeling sorry for myself which can be a real drag on my family and friends. They are real supportive but don't need to listen to me whine all the time. I also work hard to stay positive which helps. I research for any latest news about this disease and look for ways to help myself get better or be better. The only problem that really bothers me is the facial nerve damage from the biopsy. My right eyebrow dropped and won't move so now I can't give the evil eye to my husband, kids, or grand kids. I will be 60 in about a week and have had this since I was 58.

Maybe your doc is not tapering the pred. slowly enough? My SED rate was also 96 and I ws put on 60 mg. of prednisone. My SED is now normal (got TA in June 2009) and I now decrease 1 mg. every month after I alternate every day for two weeks with the new mg. and the old mg. before the next decrease. I didn't go that slowly until I reached 10 mg. Good luck. <br />
Why am I still having head and neck pain?

That's really interesting about your tapering of the Prednisone. I'll have to remember this technique if my husband has to go on it.

I have been diagnosed with Temp. Ar., about 2 weeks ago. I had been experiencing terrible headaches, sometimes dizzy, tender scalp, and lots of muscle pain. My primary Dr. didn't seem to think it was anything to be concerned about. She kept blaming it on sinus problems. After I contacted Bronchitis 3 times in 3 months, I was really worried. I told her I couldn't live like this. I had many sleepless nights, and I mean, Literally, no sleep at all. Finally she ordered blood work.<br />
I went to a Rheumatologist, who reviewed the blood results, and my SED rate was 75. My whole upper body was in pain. She immediately diagnosed me with the Temp. Art. I was put on Prednisone, 5 mg. in the a.m and 5 mg. in the p.m. My pains went away within 2 days. I get a mild headache sometimes at night or on awakening. Nothing that I cannot put up with.<br />
Now I am wondering if I will be on this medication long term. I have a blood clotting disease, and am on Coumadin for the rest of my life. Therefore, I cannot take any anti-inflammatory medication, or any over the counter drugs. I am sort of stuck between a rock and a hard place.<br />
I dread the thought of getting real fat. I dread more, the thought of going blind. I am a young 73 yr. old female, and have worked until a month ago, in a School. My neighbor is in her 80's and I knew she had said she was going blind. I didn't know why, but yesterday, asked her daughter and she told me that her Mom has Temp. Art. !! I can't believe this. I never, ever heard of this condition, and now my neighbor has it also. How ironic is this.<br />
Good luck to all who are suffering with this disease and the effects of the medication. If anyone has any thoughts or ideas, you can email me at yorky36@aol.com Thank you. God bless