Adjusting to life with temporal arteritis

Posted by MLeeB @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?

@johnbishop

@654321, Is this the book you read? Giant Cell Arteritis: One Man's Exciting Experience by Mason Clark – https://www.amazon.com/gp/product/B0111762UM/ref=dbs_a_def_rwt_bibl_vppi_i0

I have not read the book but reading the intro it seems to be a really good book written from a patient's perspective with a lot of information on both PMR and GCA.

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I will send it to you a s you can read and send it to others who might want to read it.

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@delilah2020

I was diagnosed June of 2020 along with an older case of lyme disease showing up on labs. I started at 20mg prednisone now down to 12mg. Go has me decreasing 1 mg a month. Also on second round of strong antibiotic for the lyme.

I have humps of what I call fat along my lower neck by front clavicals. Doctors did CT scan on lungs. All clear. Next week CT of stomach just to rule out any kind of lymp node leakage involvment causing swelling. Pretty sure it us just prednisone fat from all the steroids. No pain in area. John Hopkins has a good explanation of steroid causes and I appear to be trying out for a body builder competition. It did mention that swelling should go down when you get under 10mg prednisone. Hope they are right.

I also have COPD and have been combating bronchitis for three weeks now. No covid . Good luck @anglebear4.

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Hi Delilah…thank you for your words of encouragement…The humps are sticking with me for a while I guess as I am still at 25mg of prednisone. When I attempt to lower the dosage under my doctor's guidance, symptoms come back and I have to go back up for an extra week….Tomorrow I will try 20 mg. and see how that goes. The rheumatologist called me on Friday and is going to try and fit me in this coming week. He cannot understand why he was not contacted sooner but I told him that my family doctor was making the decisions as to the course of action. Hopefully, he can give me some new insight on things. Do you also still have over whelming exhaustion? Whenever I do anything like a bit of baking, a quick trip to the store or even walking up & down a flight of stairs, I sweat to the point of my hair being wet. I think the is my most upsetting part of this disease…Hang in there and we will get thru this…

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@angelbear4

Hi Delilah…thank you for your words of encouragement…The humps are sticking with me for a while I guess as I am still at 25mg of prednisone. When I attempt to lower the dosage under my doctor's guidance, symptoms come back and I have to go back up for an extra week….Tomorrow I will try 20 mg. and see how that goes. The rheumatologist called me on Friday and is going to try and fit me in this coming week. He cannot understand why he was not contacted sooner but I told him that my family doctor was making the decisions as to the course of action. Hopefully, he can give me some new insight on things. Do you also still have over whelming exhaustion? Whenever I do anything like a bit of baking, a quick trip to the store or even walking up & down a flight of stairs, I sweat to the point of my hair being wet. I think the is my most upsetting part of this disease…Hang in there and we will get thru this…

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I do pretty good. I know if I overdue my overheating seems to happen and I'm then fatigue. Hate grocery shopping as I always feel by the time I get to register I just want to leave the groceries and go. Have the hair sweat really bad to the point of using kleenex to squeeze the dripping out. I always feel people at grocery are staring at my due to it and thinking SHE must have a fever. Have had the head overheating problem before diagnosted with PMT. It seems to happen when I overdue. I have COPD/ Asthma also diagnosed years ago. Also old case of Lymes found on testings in June 2020. Wish I had more than GP sometimes guiding me but he does seems to be helping and knows how to decrease prednison. He has checked thyroid for the overheating but a okay. I often wonder if to much medication causes the overheating? I also want to loose more weight and I think that is the biggest hurdle I could do to help myself even exercising small at first and working upward. Being more aware of bad carbs and sugar in foods also will help us. We will be winners.

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@delilah2020

I do pretty good. I know if I overdue my overheating seems to happen and I'm then fatigue. Hate grocery shopping as I always feel by the time I get to register I just want to leave the groceries and go. Have the hair sweat really bad to the point of using kleenex to squeeze the dripping out. I always feel people at grocery are staring at my due to it and thinking SHE must have a fever. Have had the head overheating problem before diagnosted with PMT. It seems to happen when I overdue. I have COPD/ Asthma also diagnosed years ago. Also old case of Lymes found on testings in June 2020. Wish I had more than GP sometimes guiding me but he does seems to be helping and knows how to decrease prednison. He has checked thyroid for the overheating but a okay. I often wonder if to much medication causes the overheating? I also want to loose more weight and I think that is the biggest hurdle I could do to help myself even exercising small at first and working upward. Being more aware of bad carbs and sugar in foods also will help us. We will be winners.

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Hello Delilah 2020,
Your hormone level might be off, and that causes the head sweats.
My cousins wife had the same problem, back in the 1950 and 1960s. Fay was very heavy about 300 plus pounds. She got a diet doctor, lost 125 pounds, most of her Rx was watched. What also helped was she got very short haircuts, and dressed lightly , even in winter.
It’s possible you are dressing too warm for your grocery shopping.
Have you thought of carrying a small bottle of water that you keep in the freezer?
And lastly, could it be anxiety, or stress?
Hope you get relief, but number one is to lose weight. As you know. Being overweight will cause many health problems.
Funcountess

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Thanks so much for a response. Will talk to my doctor about checking out those hormone levels. I am 69. Yes I alway dress lightly even in my home when cleaning and cooking. Am going well at weight also thank you but we all need to work harder always and keep our bodys active. The cooler winter months will be kinder.

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@delilah2020

I do pretty good. I know if I overdue my overheating seems to happen and I'm then fatigue. Hate grocery shopping as I always feel by the time I get to register I just want to leave the groceries and go. Have the hair sweat really bad to the point of using kleenex to squeeze the dripping out. I always feel people at grocery are staring at my due to it and thinking SHE must have a fever. Have had the head overheating problem before diagnosted with PMT. It seems to happen when I overdue. I have COPD/ Asthma also diagnosed years ago. Also old case of Lymes found on testings in June 2020. Wish I had more than GP sometimes guiding me but he does seems to be helping and knows how to decrease prednison. He has checked thyroid for the overheating but a okay. I often wonder if to much medication causes the overheating? I also want to loose more weight and I think that is the biggest hurdle I could do to help myself even exercising small at first and working upward. Being more aware of bad carbs and sugar in foods also will help us. We will be winners.

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You described my grocery shopping experience exactly…once at the cashier, I just want to get out of there and my hair is like I just stepped out of the shower. I must admit that I am more aware of what food I'm buying. I am overweight but never had these symptoms before prednisone. Losing weight is definitely on my agenda but wish I had more energy to get there…. Today, I lower my prednisone to 20mg. after starting at 60mg. 3 months ago so we'll see how this goes. You are right…we will get thru this and be winners…

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Is vegetarian the best way to go with temporal arteritis?

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Hi @sophie32, you will see that I added your question to an ongoing discussion about temporal arteritis. I did this so that you would be able to connect with other people that are dealing with the same issues as you are. Have you tried going meat free? Can you tell us if it has helped at all?

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@amandaburnett

Hi @sophie32, you will see that I added your question to an ongoing discussion about temporal arteritis. I did this so that you would be able to connect with other people that are dealing with the same issues as you are. Have you tried going meat free? Can you tell us if it has helped at all?

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Meat feee??? I have not heard about that one. Will have to investigate .

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@amandaburnett

Hi @sophie32, you will see that I added your question to an ongoing discussion about temporal arteritis. I did this so that you would be able to connect with other people that are dealing with the same issues as you are. Have you tried going meat free? Can you tell us if it has helped at all?

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Thank you for getting my post to the right place!
I was diagnosed as having Giant Cell Arteritis last week, and my doctor has suggested I change my diet. The health issues I have had, and still have, are osteoporosis, and wet macular degeneration (well controlled by Eyelea). I am not overweight, need no drugs for cholesterol. I did increase the amount of fat & protein in my diet over the past 12 months and then wanted less sugar. My Doctor has suggested a Mediterranean diet with less meat and fat, which I will attempt. I have always eaten a lot of fish, chicken and vegetables, dislike deep fried food. I will miss the fat – especially since I have been reading that possibly elderly brains need more fat. I am 88. I am curious if other people with different diets, including vegetarians, have adjusted their diets when diagnosed with this type of arteritis, and if so, what results.

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@sophie32

Thank you for getting my post to the right place!
I was diagnosed as having Giant Cell Arteritis last week, and my doctor has suggested I change my diet. The health issues I have had, and still have, are osteoporosis, and wet macular degeneration (well controlled by Eyelea). I am not overweight, need no drugs for cholesterol. I did increase the amount of fat & protein in my diet over the past 12 months and then wanted less sugar. My Doctor has suggested a Mediterranean diet with less meat and fat, which I will attempt. I have always eaten a lot of fish, chicken and vegetables, dislike deep fried food. I will miss the fat – especially since I have been reading that possibly elderly brains need more fat. I am 88. I am curious if other people with different diets, including vegetarians, have adjusted their diets when diagnosed with this type of arteritis, and if so, what results.

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Hi @sophie32. I was diagnosed with Giant Cell Arteritis in June of 2019. I hope you are in the care of a rheumatologist for your new diagnosis of GCA. You'll need to be closely monitored for lab work, vision loss, and more. My initial symptom was loss of vision in my right eye, which is a common fear with GCA. I was immediately put on Prednisone to avoid further vision loss. I don't mean to frighten you, but this is a serious disease and needs close contact with a specialist. Perhaps you already have that in place. I'm so glad you have no medications up to this point. Good for you! I'm 85, so we're both up there. lol
Do keep in touch through Mayo Clinic Connect. You'll learn much and have lots of support. Warmest wishes.
Laurie

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@sophie32

Thank you for getting my post to the right place!
I was diagnosed as having Giant Cell Arteritis last week, and my doctor has suggested I change my diet. The health issues I have had, and still have, are osteoporosis, and wet macular degeneration (well controlled by Eyelea). I am not overweight, need no drugs for cholesterol. I did increase the amount of fat & protein in my diet over the past 12 months and then wanted less sugar. My Doctor has suggested a Mediterranean diet with less meat and fat, which I will attempt. I have always eaten a lot of fish, chicken and vegetables, dislike deep fried food. I will miss the fat – especially since I have been reading that possibly elderly brains need more fat. I am 88. I am curious if other people with different diets, including vegetarians, have adjusted their diets when diagnosed with this type of arteritis, and if so, what results.

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@sophie32 You said that you were diagnosed with Giant Cell Arteritis by a rheumatologist and that he suggested that you change your diet. Did he also give you medications to take or suggest a plan of care?

This information may be of some interest
https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758

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