Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

Posted by charann2000 @charann2000, Apr 25, 2018

Anyone out there who has been diagnosed with Temperol Arteritis (Giant Cell Arteritis). I am undergoing testing and most likely have it. Would like to know how anyone is doing with it and what type of medications they use and any side effects, etc.

@johnbishop

Hello @jhinia, I would like to add my welcome to Connect along with @654321 @tinkerbell and others. I also have PMR but it is currently in remission. Do you currently take your prednisone dosage all at once in the morning? Can you talk with your doctor about possibly splitting the dosage between morning and evening to see if that might help?

Here is another discussion you might be interested in reading through.

> Groups > Autoimmune Diseases > Autoimmune Diseases and Fatigue
https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/

Have you been tested for sleep apnea? I found out last year that was causing a lot of my sleep issues.
https://www.mayoclinic.org/diseases-conditions/sleep-apnea/diagnosis-treatment/drc-20377636

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Thank you @johnbishop @tinkerbell and @654321 for your response. It really helps to have others with experience to confide in.
The fatigue discussion is helpful and apnea certainly is a possibility. I sometimes wake myself up choking and gagging. It almost always happens when I am sleeping on my back. It was better after loosing 25 pounds last summer so the 10 pounds I just gained on Prednisone will only make it worse again. I normally sleep on my right side. I don't feel like I am waking up abruptly – I just slowly wake and think ahhhh that was a good sleep. Then I look at the clock and realize it was one hour of sleep.

Also good point about splitting the dose between morning and evening. My rheumatologist offered that solution when I met with him but I didn't think much of it because I was taking them in the evening at that point. I appreciate the reminder and will try splitting the dose this week.

My symptoms were pretty classic and luckily my primary physician had just had another patient of his diagnosed with GCA so he was insistent that I have the biopsy twice even though the vascular surgeon was pretty sure it would come back negative.

It started with what I thought was a sinus infection and discomfort in my left eye. Headaches were common both in the temple area and neck/shoulders. Then the jaw pain started. Initially it was just pain when opening my mouth wide to take a bite of food but about a day after that started the jaw pain was intense. 3 Advil every 4 hours would provide about 2 hours of minimal relief. Worst pain I ever had. I was incredibly fatigued. I spent the better part of 3 weekends just sleeping on the couch or in bed. The weeks in between weren't too great either. I ran fevers in the night up to 101 degrees. I would often wake up totally wet from sweat.

Throughout my life I have had ocular migraines. I have one about every year or two and the visual impact lasts about 15 minutes. At the peak of my pain with GCA however I had one that lasted about 30 minutes. I waited for it to end and then went home (10 minute drive). When I got home another one started up. I went to bed and slept through that one. Had I known about GCA and blindness at that point I would have been too scared to sleep.

Thanks again for the support.

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@jhinia

Thank you @johnbishop @tinkerbell and @654321 for your response. It really helps to have others with experience to confide in.
The fatigue discussion is helpful and apnea certainly is a possibility. I sometimes wake myself up choking and gagging. It almost always happens when I am sleeping on my back. It was better after loosing 25 pounds last summer so the 10 pounds I just gained on Prednisone will only make it worse again. I normally sleep on my right side. I don't feel like I am waking up abruptly – I just slowly wake and think ahhhh that was a good sleep. Then I look at the clock and realize it was one hour of sleep.

Also good point about splitting the dose between morning and evening. My rheumatologist offered that solution when I met with him but I didn't think much of it because I was taking them in the evening at that point. I appreciate the reminder and will try splitting the dose this week.

My symptoms were pretty classic and luckily my primary physician had just had another patient of his diagnosed with GCA so he was insistent that I have the biopsy twice even though the vascular surgeon was pretty sure it would come back negative.

It started with what I thought was a sinus infection and discomfort in my left eye. Headaches were common both in the temple area and neck/shoulders. Then the jaw pain started. Initially it was just pain when opening my mouth wide to take a bite of food but about a day after that started the jaw pain was intense. 3 Advil every 4 hours would provide about 2 hours of minimal relief. Worst pain I ever had. I was incredibly fatigued. I spent the better part of 3 weekends just sleeping on the couch or in bed. The weeks in between weren't too great either. I ran fevers in the night up to 101 degrees. I would often wake up totally wet from sweat.

Throughout my life I have had ocular migraines. I have one about every year or two and the visual impact lasts about 15 minutes. At the peak of my pain with GCA however I had one that lasted about 30 minutes. I waited for it to end and then went home (10 minute drive). When I got home another one started up. I went to bed and slept through that one. Had I known about GCA and blindness at that point I would have been too scared to sleep.

Thanks again for the support.

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Hi, jhinia, I am going to jump in and say something right now….any doctor who suggests you get another temporal biopsy I would have doubts about….that is not something you should be putting yourself through twice…it can be very dangerous. I would think that your bloodwork results would be more of a factor at this point in time. It could be a migraine positioned on the left side temple area. The reason I say this is that I had a very severe situation last year which I thought was a sinus related headache in the left temple and behind the left eye. I went to the ER and the blood work results showed some elevations in sedimentation rates, etc., but for a woman my age, 70, I was told that it was not that alarming in that those sedimentation rates are calculated on people much younger. I, too, strongly considered getting a biopsy of my left temple artery but everything seemed to subside. Whenever I get the feeling that it may be coming back, which only happened once since last year, I take two Excedrin Extra Strength Migraine tablets before it escalates and so far that has worked for me. If you had one biopsy recently why would you want to go through that again….I would get bloodwork tests again and take it from there.

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@jhinia – I agree with Charann about not having another biopsy. I have permanent numbness from the cut to the cheekbone. Also, I was told to take my Prednisone every morning and not to split the dosage up. Be very careful on your taper. I had a problem going from 20 mg. It was suggested that I go to 17 1/2 and I had problems and had to back up to 20 mg. After that I went down 1 mg every 2 weeks. This really slowed the taper down but in the end I did get off of it in October 2018.

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I was not too happy about the 2nd biopsy. They did it one week after the first one and the thought of going through that again was pretty depressing. The first one took 7 hours from check in to check out. Even though it is done under local and sedation they prep you like you are going to be under general anesthesia. At least that is how they do it here.

@tinkerbell your dosing info and others I have read have me concerned about getting that fine tuned. Right now I'm just happy to be at 50mg instead of 60mg and I am looking forward to going to 40mg this Friday. I can't imagine being under 20mg and adjusting it one mg at a time. I guess we do what we have to do.

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@jhinia

I was not too happy about the 2nd biopsy. They did it one week after the first one and the thought of going through that again was pretty depressing. The first one took 7 hours from check in to check out. Even though it is done under local and sedation they prep you like you are going to be under general anesthesia. At least that is how they do it here.

@tinkerbell your dosing info and others I have read have me concerned about getting that fine tuned. Right now I'm just happy to be at 50mg instead of 60mg and I am looking forward to going to 40mg this Friday. I can't imagine being under 20mg and adjusting it one mg at a time. I guess we do what we have to do.

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@jhinia – Right now the important thing is to get to 20 mg. You should be able to sleep once you get there at least that is what happened to me. The one recommendation I read early on was to never go down more than 10% at a time after 20. Maybe I should have gone to 18 and it would have worked. I was so upset about the problems at 20 mg to 17.5 that I was scared to do anything else but the 1 mg. It worked and I eventually got off without any problems. Always remember slow is good.

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@geniecm

Looking for input on Giant Cell or Temporal Arteritis. Was diagnosed finally at the beginning of Sept. and am on Prednisone. I still feel awful! 24/7 pounding headache, fatigue, jaw discomfort and neck pain. Will be travelling very soon and am concerned.

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Hello @geniecm,

Welcome to Connect. There is currently another active discussion on giant cell arteritis here that you may want to read through:

> Groups > Autoimmune Diseases > giant cell arteritis
https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/

I’m tagging our Moderator Kanaaz (@kanaazpereira) to see if she can move your question to that discussion for more visability. I’m also tagging a few other members who have talked about giant cell arteritis to see if they can join in the discussion – @kari51, @marylynn, @crhp194 and @morninglory do you have any information that you can share with @geniecm on traveling with giant cell arteritis?

We also have another conversation on GCA, (also known as temporal arteritis), which you might wish to view:

> Groups > Stroke & Cerebrovascular Diseases > Adjusting to life with temporal arteritis
https://connect.mayoclinic.org/discussion/would-like-to-hear-from-people-that-have-gone-thru-or-going/

@geniecm have you discussed your concerns about travel with your doctor? Just wondering if they might have some suggestions. I have polymyalgia rheumatica (PMR) that is currently in remission. From what I understand it frequently is associated with GCA.

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@geniecm

Looking for input on Giant Cell or Temporal Arteritis. Was diagnosed finally at the beginning of Sept. and am on Prednisone. I still feel awful! 24/7 pounding headache, fatigue, jaw discomfort and neck pain. Will be travelling very soon and am concerned.

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Hello. 4 years ago, started losing eyesight in my rt. Eye for temporarily, then returns after 4 or so minutes and also jaw pain when chewing. My doc sent me to hospital for a diagnosis. However since I did not have headaches, hosp. Doc said was probably TMJ for jaw and migraine head ache for eye. Fortunately my own doc thought I should have had a biopsy, and a few months later that was done at another hospital, confirming CSA. I was put on 60 Millagrams of prednisone and a month later methotrexate was added. After 3 months lowered to 50 Mil. Then slowly lowered next 4 years until now on 1/2 Mil. I was given blood tests every 6 weeks until last summer. Now I get blood tests every 12 weeks. I still have my eyesight and have not had any temporary loss of eyesight in 4 years. And no jaw pain. Next week I go on 1/2 milligram of prednisone every other week, then doc said we will work on getting off the methotrexate. I was 77 when I got GCA, and I am now 82. So hang in there. I have visited with a few others on mayo conn., and the hard part seems to be getting th correct diagnosis. Then it seems like most of us get over this thing. But it takes awhile. Most seem to be well in 2 years or so. Diana

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@elderdiana

Hello. 4 years ago, started losing eyesight in my rt. Eye for temporarily, then returns after 4 or so minutes and also jaw pain when chewing. My doc sent me to hospital for a diagnosis. However since I did not have headaches, hosp. Doc said was probably TMJ for jaw and migraine head ache for eye. Fortunately my own doc thought I should have had a biopsy, and a few months later that was done at another hospital, confirming CSA. I was put on 60 Millagrams of prednisone and a month later methotrexate was added. After 3 months lowered to 50 Mil. Then slowly lowered next 4 years until now on 1/2 Mil. I was given blood tests every 6 weeks until last summer. Now I get blood tests every 12 weeks. I still have my eyesight and have not had any temporary loss of eyesight in 4 years. And no jaw pain. Next week I go on 1/2 milligram of prednisone every other week, then doc said we will work on getting off the methotrexate. I was 77 when I got GCA, and I am now 82. So hang in there. I have visited with a few others on mayo conn., and the hard part seems to be getting th correct diagnosis. Then it seems like most of us get over this thing. But it takes awhile. Most seem to be well in 2 years or so. Diana

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I meant to say 1/2 milligram every other day.

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Looking for input on Giant Cell or Temporal Arteritis. Was diagnosed finally at the beginning of Sept. and am on Prednisone. I still feel awful! 24/7 pounding headache, fatigue, jaw discomfort and neck pain. Will be travelling very soon and am concerned.

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I have only GCA which causes no symptoms. It was found during open heart surgery at Mayo in 2016. For GCA, I have been on prednisone and methotrexate. Tapered off the prednisone but continue to take methotrexate. Luckily , I have had little to no side effects from either med. I do not have temporal arthritis which does cause symptoms. However, the meds are similar. The meds seem to take care of any symptoms rather quickly. I hope the best for you. Just want you to know that life can still be the same even with these two diseases.

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Nice message. Yes it is aggravating but not debilitating to have this condition. I only have temporal Arteritis thank goodness and not GCA. Been on prednisone foe several years . So glad it s something that can be treated.

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@654321

Nice message. Yes it is aggravating but not debilitating to have this condition. I only have temporal Arteritis thank goodness and not GCA. Been on prednisone foe several years . So glad it s something that can be treated.

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My understanding is that t
Temporal Arteritis and Giant Cell Arteritis are the same. Please explain the difference. .

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