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MLeeB
@MLeeB

Posts: 7
Joined: Jan 07, 2016

Adjusting to life with temporal arteritis

Posted by @MLeeB, Mar 21, 2016

Would like to hear from people that have gone thru or going thru temporal artritis. I am now going on my 5 month after being diagnosed. It is getting better but very slowly. Is this normal?

REPLY

Hi @MLeeB, and welcome to Connect. I’m Alyse, and I’m one of the community moderators here. I’m glad to hear that you’re slowly adjusting to your recent diagnosis, but can only imagine how life-changing it must be. I found information on lifestyle and home remedies that you may find helpful (http://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/basics/lifestyle-home-remedies/con-20023109).

Also, I’m tagging @donnalc and @lindy – two members who have wrote about temporal arteritis in the past. I hope you all can share your experiences, as well as any tips or advice.

Thank You for connecting me to this thread.

Liked by Alyse Brunella

Am very sorry to learn of your diagnosis. I’ve had Temporal Arteritis (GCA) for 7 years. The length of time for recovery is different for everyone. Please don’t panic and think you’ll be at this for a long time. It’s different for different patients. It is very important to have a temporal artery biopsy to support the diagnosis. The first line of treatment for GCA is Prednisone. This drug will reduce your bone density and has many other potential risks. The goal should be to manage the disease with the least amount of Prednisone possible. Tapers of the drug must be done slowly and with supervision in order to prevent adrenal failure, so never just go off Prednisone just because you’re feeling better or frustrated with slow recovery. Most people improve quickly when Prednisone is introduced. Then recovery slows with the taper. It would be helpful to know more about your diagnosis and meds. Most info on this autoimmune disorder is on elderly patients. I was in my 40s when I was diagnosed, so I’ve come to learn things are different for me. This means protecting bones is much more critical. The link you received is excellent in that it points out how important diet and exercise are to protect you from osteoporosis, high blood sugar (Prednisone raises this) and other issues. Are you seeing a Rheumatologist? If you are not seeing a specialist, you should consider it. Have you had a DEXA scan. This should be done early and monitored regularly to see if you need to be on bone supporting drugs. Please tell me you’re on calcium! It is critical to get enough calcium with Vitamin D3, magnesium and other essentials to protect your bones at least some. Some things you need to do your homework on and that insist on. Did you know you are more prone to infections on Prednisone? This means preventative care like a flu shot is important. Depending on how much Prednisone you’re on, you may need protection from different kinds of Pneumonia. Please take time to keep doing what you’re doing. Ask questions, seek answers and become the best advocate you can be.

Thank you for your post. I ‘am or was a healthy 72 year old until 5 months ago when out of the blue this hit. As most people, I have never heard of this. I had all the TA markers; elevated sed. rate, blood work all over the place, anemic, jaw pain, felt like I had the flu, terrible head pain and the list just goes on and on. Once on the prednisone the pain subsided and the blood markers were slowly returning to normal….sort of. I started at 40 mg. of pred. and now 5 months later I am on 12 mg….. they are trying to get me off the “devils drug”. Every time they reduce the pred. the inflammation markers start to go back up and they increase the pred. to compensate for the elevation in the sed. rate. I have horrible side effects to the pred. My blood sugar, which used to be normal is out of whack, I shake all the time, my nerves feel like they are sitting right on top of my skin, I am in a fog, memory is horrible and I look like I have aged 20 years. I have not gained weight, lost about 12 lbs., probably from burning so many calories a day from the constant shaking.
Besides the pred. I take nothing but vitamins. I am well aware of the damage to the bones so I just keep taking more calcium, Vit D, and magnesium. I eat well, but the exercising (used to play a lot of tennis) has gone out the window as I am so unstable on my feet.
Will this ever end? Everything I have read says this will take up to 2 years to get rid of, and the rummy agrees.

I have been diagnosed via a biopsy with temporal arteritis but have not yet started treatment. I don’t have any of the symptoms so I suspect it was found early though I did have open heart surgery May 10, 2016 for aneurysm repair and arch replacement. I am 72 and ready for cataract surgery plus extensive dental work. My question-does taking prednisone preclude doing these procedures?

Would like to connect with people that have or is going through this. Diagnosed a year ago and does not seem to be under controlled.

Hi @MLeeB. It’s great to hear from you again! I merged your question into an existing thread you started back in March. @donnalc, @lindy, @prednisone4gca and @crhp194, do you have any suggestions for @MLeeB on how to manage temporal arteritis?

@MLeeB, what progress have you had (if any) since your last post on Connect?

@alysebrunella

Hi @MLeeB. It’s great to hear from you again! I merged your question into an existing thread you started back in March. @donnalc, @lindy, @prednisone4gca and @crhp194, do you have any suggestions for @MLeeB on how to manage temporal arteritis?

@MLeeB, what progress have you had (if any) since your last post on Connect?

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I have aortic giant cell arteritis. It can be cured with a combination of prednisone and methotrexate according to Mayo. The prednisone is for the inflammation and the methotrexate is for the auto-immune disease of giant cell. Apparently it takes about a year. Women seem to be more prone to auto-immune diseases. In addition to giant cell, there are many other auto-immune diseases such as psoriasis. I do have psoriasis. There’s a web site about auto-immune diseases which I think is arrda.org which lists many of these auto immune diseases.

I’m 23 I’ve been having a chronic headache for over a month about a month ago i had a unilateral headache on my right side accompanied by a swollen artery right past my hairline that i cant visibly see but i can feel with my fingers pulsating. I went to urgent care where a doctor told my i had temporal arteritis regaurdless of my age and sent me to the ER where they gave me a headache cocktail and took a ct scan which was clean but did not take a biopsy or blood and sent me home telling me it was a tension headache, unsatisfied i went to my primary who felt the artery and just told me it was tension and sent me home with instructions to take vitamin d, drink more water, and exercise to reduce stress. I have done all of these exercise makes the swelling worse so i dont like doing it because it feels uncomfortable. so its been a month nothings changed except there is not really any pain i just feel pressure where the vein is and sometimes over my eye and sometimes in my ear. sometimes there is no pressure and i feel perfectly fine other times like today it feel super uncomfortable and it gives me anxiety. I do not have a tender scalp or jaw pain or a reduced appetite i sleep just fine and my vision is fine other than sometimes my right eye can feel slightly strange sometimes, also sometimes i feel like weird tingling on my scalp in various places and feel nerve twitches in my face or fore head and weir chugging in my veins? what should i do?

@ducksman1122

I’m 23 I’ve been having a chronic headache for over a month about a month ago i had a unilateral headache on my right side accompanied by a swollen artery right past my hairline that i cant visibly see but i can feel with my fingers pulsating. I went to urgent care where a doctor told my i had temporal arteritis regaurdless of my age and sent me to the ER where they gave me a headache cocktail and took a ct scan which was clean but did not take a biopsy or blood and sent me home telling me it was a tension headache, unsatisfied i went to my primary who felt the artery and just told me it was tension and sent me home with instructions to take vitamin d, drink more water, and exercise to reduce stress. I have done all of these exercise makes the swelling worse so i dont like doing it because it feels uncomfortable. so its been a month nothings changed except there is not really any pain i just feel pressure where the vein is and sometimes over my eye and sometimes in my ear. sometimes there is no pressure and i feel perfectly fine other times like today it feel super uncomfortable and it gives me anxiety. I do not have a tender scalp or jaw pain or a reduced appetite i sleep just fine and my vision is fine other than sometimes my right eye can feel slightly strange sometimes, also sometimes i feel like weird tingling on my scalp in various places and feel nerve twitches in my face or fore head and weir chugging in my veins? what should i do?

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Hello Ducksman1122, welcome to Connect. I merged your discussion post with an existing conversation called, “Adjusting to life with temporal arteritis.”

Here you will find other members, like @MLeeB, who are experiencing things similar to yourself and may be able to offer their thoughts on some of your symptoms. You may also wish to read through the older conversation Temporal Arteritis, found here http://mayocl.in/2fb1JSF, for more thoughts from other members on your diagnosis.

@ducksman1122, have you told your primary care physician about the symptoms you experience when you try to exercise? When you become uncomfortable and then experience the anxiety, does the anxiety make the pain worse?

Not sure if I’m posting this in the right place or not, but I have a question re a bilateral biopsy I had on 2 arteries near my temples. The doctor said he tied them off and took the middle sections. He said that I can do without those arteries operating because I have enough others that supply the blood to those areas of my face and head.

My question is this, what happens to the blood that is flowing to that artery that’s been tied off? Where does it go if it’s not possible to complete the flow?

@mzdisney

Not sure if I’m posting this in the right place or not, but I have a question re a bilateral biopsy I had on 2 arteries near my temples. The doctor said he tied them off and took the middle sections. He said that I can do without those arteries operating because I have enough others that supply the blood to those areas of my face and head.

My question is this, what happens to the blood that is flowing to that artery that’s been tied off? Where does it go if it’s not possible to complete the flow?

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Hello mzdisney, and welcome to Connect. Thank you for sharing your concerns regarding your bilateral biopsy due to temporal arteritis. I moved you discussion to an already existing discussion on temporal arteritis so that you could Connect with other members who have had experiences similar to yours.

I would like to invite back @crhp194 @prednisone4gca who have discussed biopsies in the past.

@mzdisney, did you discuss these concerns and questions with your doctor? Are there any other concerns that you have about the procedure that was performed? Some members discussed that relief was achieved, but it was slow, how has your pain been since the bilateral biopsy?

@mzdisney

Not sure if I’m posting this in the right place or not, but I have a question re a bilateral biopsy I had on 2 arteries near my temples. The doctor said he tied them off and took the middle sections. He said that I can do without those arteries operating because I have enough others that supply the blood to those areas of my face and head.

My question is this, what happens to the blood that is flowing to that artery that’s been tied off? Where does it go if it’s not possible to complete the flow?

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Wish I could help but I have aortic giant cell arteritis. It was found during open heart surgery so I wish I had answers for you but alas I do not. But if I were you, I would return to your doctor and ask him/her your questions. Good luck to you!

Likelihood of temporal arteritis? My dad – who is 94 – has been experiencing symptoms for over a month. They involve a headache or discomfort near the top of his head and going down to an area behind his left ear near his neck. We happened to be at a doctor’s appointment last Tuesday and temporal arteritis was mentioned. We are in the diagnosis process. The doctor prescribed prednisone. This provided some relief though the symptoms have not disappeared. The doctor also referred us to a surgeon who has scheduled a procedure tomorrow for an artery biopsy.
Is this the right approach? I am concerned about the procedure at dad’s age though he is generally fit and active. I am also concerned about his going under anesthesia. There is some history of significant sensitivity and he has experienced both very high and very low blood pressure. I have heard the biopsy can be done with a local but the surgery center seems to be scheduling more extensive sedation.
Anyone have feedback?

@aberon22

Likelihood of temporal arteritis? My dad – who is 94 – has been experiencing symptoms for over a month. They involve a headache or discomfort near the top of his head and going down to an area behind his left ear near his neck. We happened to be at a doctor’s appointment last Tuesday and temporal arteritis was mentioned. We are in the diagnosis process. The doctor prescribed prednisone. This provided some relief though the symptoms have not disappeared. The doctor also referred us to a surgeon who has scheduled a procedure tomorrow for an artery biopsy.
Is this the right approach? I am concerned about the procedure at dad’s age though he is generally fit and active. I am also concerned about his going under anesthesia. There is some history of significant sensitivity and he has experienced both very high and very low blood pressure. I have heard the biopsy can be done with a local but the surgery center seems to be scheduling more extensive sedation.
Anyone have feedback?

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Hello @aberon22, welcome to Connect. Thank you for jumping in to the discussion about temporal arteritis. I am glad you were able to find this discussion on your own. I understand your concerns about your father and undergoing anesthesia.

While we wait for some of the other members to chime in, would you mind sharing if you told your concerns about anesthesia with your physician and surgeon? Did you inquire about being able to do it with a local because of your concerns with previous low/high blood pressure?

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