1. < Polymyalgia Rheumatica (PMR)

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?

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issyb | @issyb | Mar 24, 2023
In reply to @evinann "I am experiencing almost the same thing. I feel strongly that it could be GCA my..." + (show)
@evinann

I am experiencing almost the same thing. I feel strongly that it could be GCA my said rate and CRP are both within normal range. I just noticed dark veins coming from the top of my forehead down towards my temple area. I am strongly leaning towards having the biopsy. Can you tell me if the top of your head was also very painful? I don’t experience headaches just had pain on the right side. I can’t seem to get much help from Drs. Too quick to diagnose and give me amitriptyline or gabapentin. Thanks for your help.

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Wow I had the exact same symptoms and went to the emergency room. They admitted me and they did the biopsy. It was not painful at all during or after mine was negative but the prednisone has now been lowered and my headaches are back on the right side as well . I also noticed those veins in the exact same place you were mentioning. I’m in a dilemma as well. I went from 40 mg to 7.5 of prednisone. Just wondering what I should do as well. I’ll keep you posted. Please keep me posted. Good luck.

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evinann | @evinann | Mar 24, 2023

Hi, thanks for your reply. I’ve had so many diagnoses from migraine, post herpetic neuralgia to Trigeminal and Occipital Neuralgia. I feel like I am getting the “Diagnosis and Adios”. My symptoms point to GCA but no Dr has perused that because my labs did not support. I’m not sure what to do next. I’m struggling
with this everyday and keeping to myself because my family is definitely tired of my complaining “my head hurts “.
Did you receive a diagnosis even though you were negative? I’m leaning towards the biopsy so I will know for sure. I’m going to try a rheumatologist as I’ve had no luck with neurology. It shouldn’t be this hard, right?
PS I’m a active, healthy 74 yr old. My only issue is Cervical herniation (ACDF in 2014)
I’m sadly feeling possible age discrimination for the first time ever from the healthcare providers ☹️) I’m not giving up by any means. Stay Positive, it does help!

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oztrax | @oztrax | Mar 24, 2023
In reply to @amptrooper "Hello, I am 43 and have recently become a regular at my doctors office and at..." + (show)
@amptrooper

Hello, I am 43 and have recently become a regular at my doctors office and at the Neurologists office. This all started with a very sore neck. Then a strange twitching behind my ear about an hour later. My jaw felt sore like a stressed out muscle. Then my right cheek started hurting followed by my right temple. The next day I had pain in the back of my head in the crown area along with the other symptoms. Just to touch or to brush my hair or where my hat. My eyes had started having problems weeks before this. I noticed that my eyes would go blurry a lot. Much like looking through water. And I felt a lot of pressure in my eyes. Then my ears started having a lot of pressure. So far since the neck and temple thing started its been 4 weeks and it's only getting worse. I now find myself tired all the time and have a great lack of energy along with the coming and going of the above symptoms. I also discovered that if I rub or touch especially my right temple it will set everything off big time making for a really bad day. I had also notice a tired feeling in my arms and if I try to touch my back with either arm I get a sharp pain and just can't do it. This has never been a problem before so I don't know. At first I just thought I had over done it but is hasn't gotten any better. My wife is a nurse of 11 years and she thinks it is this Temporal Artritis. As in all our searching this is the only thing that my strange symptoms match nearly 100%. It has made sleeping an issue as well as the pain in my temples and jaw and head make laying on a pillow uncomfortable. I have had all kind of blood tests for all kind of ideas the doctors had. They all come back normal except that if you look at the graph you can clearly see some minor changes. I have had an MRI and CT scan to make sure it wasn't a tumor or something and last week I had an EEG. Next month I have a scheduled ultrasound on my arteries. Not sure if he is doing that to check for Temporal Artritis or if you can even really find any clues by way of ultrasound. But at this point my Neurologist says that it can't be Temporal Artritis because I am under 50. I am frustrated and just want to to feel good and get on with life.
As a side note. I am not a normal 43 year old as back in 2008 I was in a major motorcycle accident where the end result was that I lost my right leg, crushed my hip and have 28 screws and two plates holding it together and I lost my entire left back muscle as it was used for a muscle flap in my right leg that I had amputated a year later. I spent several month in the hospital and was only allowed home because my wife is a nurse. So, I am not typically as active as a normal 43 year old man. I sure would like to be though. So I don't know what to do at this point. I do t want to go blind and I sure would like to get a good night sleep. I found this topic just doing a Google search on this topic as I was looking for more info. I guess I though I would go to the community of people who have it and see if my symptoms truly do add up to what yall are or have experienced so that I can determine whether to continue to push my doctors to look into to this. Any ideas, advice or questions are fully welcomed! Thanks so much and many blessings to you all!

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FYI Ashton kuscher (the actor) was diagnosed with GCA/Temporal Arteritis at age 44 ……..

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 24, 2023

@evinann Your story sounds so familiar and upsetting. Doctors just don’t know autoimmune diseases-at least, the uncommon ones. I’m glad that your spirit is positive and you’re going to keep looking for answers! When I got sick with my autoimmune disease, I thought it was a stroke so I begged for an MRI. When I finally got one, none of the doctors knew what they were looking at. Finally, one neurologist knew what it was but didn’t know how to treat it. Luckily, my husband had researched the university medical center and we went there. The doctor there, recognized the lesions on my brain, and started treatment.
So, yes, I would recommend that you find a good rheumatologist and go to a large medical center! I included a link to help you find a doctor.
https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist
Please stay in touch and let me know what happens.

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Teri | @tsc | Mar 24, 2023
In reply to @evinann "I am experiencing almost the same thing. I feel strongly that it could be GCA my..." + (show)
@evinann

I am experiencing almost the same thing. I feel strongly that it could be GCA my said rate and CRP are both within normal range. I just noticed dark veins coming from the top of my forehead down towards my temple area. I am strongly leaning towards having the biopsy. Can you tell me if the top of your head was also very painful? I don’t experience headaches just had pain on the right side. I can’t seem to get much help from Drs. Too quick to diagnose and give me amitriptyline or gabapentin. Thanks for your help.

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Hi @evinann, I noticed the top of my head was tender when I touched it. That lasted a couple of weeks. For months, though, I had a very stiff and sore neck, which extended halfway up my head on the left and right sides of my skull, and short stabbing pains on the right side of my face from my ear to my nose. Also, a couple incidents of not being able to see out of my right eye, which lasted about 20 minutes. Also an itchy torso for a few weeks and a dry, nonproductive cough.
I had started with symptoms of PMR about a year prior to all this, but my inflammation markers were low and it was not diagnosed until my lab work showed anemia.

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cadenise1 | @cadenise1 | Nov 19, 2023

I am about to have a bi-lateral adrenalectomy and will be taking prednisone. Any advice on dealing with the negative side effects?
Thanks

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2 replies
pag1949 | @pag1949 | Nov 20, 2023
In reply to @cadenise1 "I am about to have a bi-lateral adrenalectomy and will be taking prednisone. Any advice on..." + (show)
@cadenise1

I am about to have a bi-lateral adrenalectomy and will be taking prednisone. Any advice on dealing with the negative side effects?
Thanks

Jump to this post

Insomnia is a problem for me. I am trying Sleepy Time tea at various times to see if it helps. (Just before bedtime, one half hour -45 minutes before, 2 hours before.) So far, I had the best luck with one half hour before ( 1 time). However, I seem to fall asleep quickly but wake up at 3 or 4. Still working on it. Good luck.

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pb50 | @pb50 | Nov 20, 2023

I just ended a 16 day course of prednisone. I have RA and recently had surgery for lung cancer and have Rib and diaphragm pain. Prednisone relieves it almost immediately. Sadly it comes at a price because once the prednisone is done the symptoms return. I love the nasty stuff. It gives me energy, elevates mood, relieves pain …. BUT it makes me want to pull a chair up to the fridge. 🙄

I don’t sleep long anyway, so I took it at about 5 am and added an Tylenol pm at night to get at least 6 hours sleep. Seriously that’s the only side effect for me. Long term I’d have an issue due to increased hunger. But I would stock up on low calorie food if I were you. .

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 20, 2023
In reply to @cadenise1 "I am about to have a bi-lateral adrenalectomy and will be taking prednisone. Any advice on..." + (show)
@cadenise1

I am about to have a bi-lateral adrenalectomy and will be taking prednisone. Any advice on dealing with the negative side effects?
Thanks

Jump to this post

@cadenise1 There are so many side effects to prednisone and everyone reacts differently. My sister, who also has an autoimmune disease, got the rounded ‘chipmunk’ cheeks, but I didn’t. Her bones remained healthy, but I developed osteoporosis. Fatigue is something almost everyone gets.
To avoid osteoporosis, add calcium to your diet. If there will be time before the surgery, ask your PCP for a referral for a DEXA-scan to check the baseline health of your bones. The scan is then repeated every two years.
Fatigue: you don’t fight it, you manage it. https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
Avoid people with infections. Get your vaccines! Wear a mask in crowded places.
OK. My fatigue is taking over so I need to rest! I’m sure that other members will join the discussion soon.
Why are you having the adrenalectomy?

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2 replies
pb50 | @pb50 | Nov 20, 2023
In reply to @becsbuddy "@cadenise1 There are so many side effects to prednisone and everyone reacts differently. My sister, who..." + (show)
@becsbuddy

@cadenise1 There are so many side effects to prednisone and everyone reacts differently. My sister, who also has an autoimmune disease, got the rounded ‘chipmunk’ cheeks, but I didn’t. Her bones remained healthy, but I developed osteoporosis. Fatigue is something almost everyone gets.
To avoid osteoporosis, add calcium to your diet. If there will be time before the surgery, ask your PCP for a referral for a DEXA-scan to check the baseline health of your bones. The scan is then repeated every two years.
Fatigue: you don’t fight it, you manage it. https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
Avoid people with infections. Get your vaccines! Wear a mask in crowded places.
OK. My fatigue is taking over so I need to rest! I’m sure that other members will join the discussion soon.
Why are you having the adrenalectomy?

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So true Becky. As is true for virtually every drug and every underlying condition, we are all wired differently.

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