Temporal Arteritis or Giant Cell Arteritis

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.

Liked by captainkenny

@tinkerbell

@charann2000 – I was surprised to see you back on this site. Have you had any vaccines recently? My neurologist at Mayo said to be very careful with vaccines. I had the flu vaccine after I got off of Prednisone and had some problems and thought my GCA was back. They took Sed Rates and a CRP and they all came back okay. Still have a little discomfort.

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Hi Tinkerbell, About two months ago I had the first Shingrix Vaccination….it left my arm (left arm administered into for the vaccination) terribly sore for about two months down to my fingers feeling a bit stiff or numb. I think that perhaps the Pharmacist who administered the Shingrix did not shake the vaccine as much as needed and that is why I got sore. Aside from that, nothing of more recent than that. My senior flu shot did not affect me at all and that was in mid-September. Also, I never went on Prednisone or anything except a RX nasal spray once a day. It could be that we are getting older and even routine vaccinations hit harder. I know that when I get a cut it takes way longer to heal especially in the legs due to slower circulation in the legs associated with aging. Glad to hear that you are off of Prednisone….the less drugs in your system the better you are off in the long run.

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@charann2000 – I have decided not to get the new vaccine for Shingles. I figured it would probably set off the GCA again. Glad you are doing okay. Take care of yourself.

Liked by elderdiana

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Thanks, Tinkerbell, you also!

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@tinkerbell

@charann2000 – I have decided not to get the new vaccine for Shingles. I figured it would probably set off the GCA again. Glad you are doing okay. Take care of yourself.

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At my last appointment at Mayo in Rochester, I asked my rheumatologist doctor if I could have the shingles vaccine. I have both GCA and PMR. He urged me to have the shot. I also take methotrexate and prednisone. Had both shots and other than a slight headache I got along fine. FWIW. Just to help others to make a decision.

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This is my first post so I apologize if I am in completely the wrong place or if my question has been answered a million times before. I searched for a Giant Cell Arteritis group and I searched each of the 14 pages in this thread for "sleep" but did not find much discussion relative to my concern. So here goes. Thanks for your patience.

In April after the second biopsy I was diagnosed with GCA. I have was on 60mg Prednisone from early April until a week ago when they dropped it to 50mg.
My biggest problem is insomnia. It may be slightly better at 50mg than it was at 60mg but I'm still really struggling to sleep.

I go to bed dead tired and fall right asleep. I then sleep one or two hours and I wake up. Usually I can go back to sleep at that point and sleep another hour maybe two before I wake up again. The third time I wake up (now about 2:30am) I get up and take a chewable melatonin. Back to bed and after a little tossing and turning I can usually zonk out for another hour. The 3:30 wake up is the worst. I may take another melatonin and try to get back to sleep but I rarely fall back to sleep at this point.

I never had any trouble sleeping before the GCA and Prednisone. I could sleep 7 or 8 hours straight and wake up feeling fine. Now 4 or 5 hours sleep in a night with only two interruptions is a good night sleep. I'm trying to finish my last three months of work before retirement and I feel like I'm just dragging myself through the day and trying not to fall asleep at my desk. I had a productive and enjoyable career and I really hate the feeling that I'm limping too the finish line.

Can anyone point me to discussions about dealing with Prednisone induced insomnia? I'm not finding much on the web about it. The only advice I have been given is "take it in the morning". Thanks.

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I am so sorry. Prednisone is terrible. I have been on it for several years . Hang in there until it comes down . Do you have symptoms from your g c a ?

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@jhinia

This is my first post so I apologize if I am in completely the wrong place or if my question has been answered a million times before. I searched for a Giant Cell Arteritis group and I searched each of the 14 pages in this thread for "sleep" but did not find much discussion relative to my concern. So here goes. Thanks for your patience.

In April after the second biopsy I was diagnosed with GCA. I have was on 60mg Prednisone from early April until a week ago when they dropped it to 50mg.
My biggest problem is insomnia. It may be slightly better at 50mg than it was at 60mg but I'm still really struggling to sleep.

I go to bed dead tired and fall right asleep. I then sleep one or two hours and I wake up. Usually I can go back to sleep at that point and sleep another hour maybe two before I wake up again. The third time I wake up (now about 2:30am) I get up and take a chewable melatonin. Back to bed and after a little tossing and turning I can usually zonk out for another hour. The 3:30 wake up is the worst. I may take another melatonin and try to get back to sleep but I rarely fall back to sleep at this point.

I never had any trouble sleeping before the GCA and Prednisone. I could sleep 7 or 8 hours straight and wake up feeling fine. Now 4 or 5 hours sleep in a night with only two interruptions is a good night sleep. I'm trying to finish my last three months of work before retirement and I feel like I'm just dragging myself through the day and trying not to fall asleep at my desk. I had a productive and enjoyable career and I really hate the feeling that I'm limping too the finish line.

Can anyone point me to discussions about dealing with Prednisone induced insomnia? I'm not finding much on the web about it. The only advice I have been given is "take it in the morning". Thanks.

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@jhinia – Hi from Tinkerbell. I finished my taper for GCA last October. I had a terrible problem sleeping from 60 mg. To 20 mg. I was told to try lavender oil on my feet. My feet smelled good but it did not help with the insomnia. I went down 10 mg every 2 weeks so you just need to hang in there. Also, I had never had problems sleeping until I got on the Prednisone. It seems to be a common problem. If you have any other questions I will be happy to try to answer your questions. I was on Prednisone 1 1/2 years.

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@tinkerbell

@jhinia – Hi from Tinkerbell. I finished my taper for GCA last October. I had a terrible problem sleeping from 60 mg. To 20 mg. I was told to try lavender oil on my feet. My feet smelled good but it did not help with the insomnia. I went down 10 mg every 2 weeks so you just need to hang in there. Also, I had never had problems sleeping until I got on the Prednisone. It seems to be a common problem. If you have any other questions I will be happy to try to answer your questions. I was on Prednisone 1 1/2 years.

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Are you still on prednisone tinker bell ?

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@jhinia

This is my first post so I apologize if I am in completely the wrong place or if my question has been answered a million times before. I searched for a Giant Cell Arteritis group and I searched each of the 14 pages in this thread for "sleep" but did not find much discussion relative to my concern. So here goes. Thanks for your patience.

In April after the second biopsy I was diagnosed with GCA. I have was on 60mg Prednisone from early April until a week ago when they dropped it to 50mg.
My biggest problem is insomnia. It may be slightly better at 50mg than it was at 60mg but I'm still really struggling to sleep.

I go to bed dead tired and fall right asleep. I then sleep one or two hours and I wake up. Usually I can go back to sleep at that point and sleep another hour maybe two before I wake up again. The third time I wake up (now about 2:30am) I get up and take a chewable melatonin. Back to bed and after a little tossing and turning I can usually zonk out for another hour. The 3:30 wake up is the worst. I may take another melatonin and try to get back to sleep but I rarely fall back to sleep at this point.

I never had any trouble sleeping before the GCA and Prednisone. I could sleep 7 or 8 hours straight and wake up feeling fine. Now 4 or 5 hours sleep in a night with only two interruptions is a good night sleep. I'm trying to finish my last three months of work before retirement and I feel like I'm just dragging myself through the day and trying not to fall asleep at my desk. I had a productive and enjoyable career and I really hate the feeling that I'm limping too the finish line.

Can anyone point me to discussions about dealing with Prednisone induced insomnia? I'm not finding much on the web about it. The only advice I have been given is "take it in the morning". Thanks.

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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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@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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