Mayo Clinic Connect
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?
So I had the Ultrasound on my arteries yesterday. They had the results posted on my online chart in just about an hour. The results were that everything was "normal". So glad that even though I am currently sitting here in my recliner with one of those I shaped pillows keeping my head which is sore to the touch from touching the back of the recliner and my jaw is sore to the point that my wife says I don't open it all the way to talk and, my cheeks hurt, eyes are watery and blurry and feel like someone is trying to push them out of my head from inside and my temples feel swollen and hurt to the touch, that everything is fine and normal! So it's all just Normal! That must mean that everyone has this exact same thing happening to them too. I should just stop nothing the doctors and forget and live with this. So glad that I can finally move on from this because it's all just Normal!
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Don’t give up , you could request for a follow up and they can refer you to further testing with perhaps another Specialty or different testing
Liked by John, Volunteer Mentor
@amptrooper can you get a second opinion? I would be asking the doctors if it's all normal then what is causing these symptoms. I agree with @soteloli – don't give up. If they are not helpful then I would be looking for another doctor.
I somehow lost the post I had been writing you. Having a normal biopsy doesn’t prove that you don’t have GCA. I had been on prednisone for a few weeks before they scheduled my biopsy so mine also came back as normal . My rheumatologist said that the clearest sign that I had GCA was that within a a few days of being on prednisone I felt so much better. Hang in there and if you feel like the doctors aren’t listening make an appointment with another one. Having a good working relationship with your doctor can help you get through a lot of the ups and downs
Sorry if I posted twice on this. I just can’t find the first one
Liked by John, Volunteer Mentor, Lisa Lucier
@amtrooper….how frustrating! Just a thought. Look up trigeminal neuralgia and see if you share these symptoms. Type one presents with electric type shooting pain. Type 2 is an awful ache caused by the nerve, which has 3 main branches, with many branches off the three. Affects the jaw, teeth, cheek, eye and brow, forehead and scalp. Something to consider. Oh and may not affect all areas mentioned…but may. JMJ
@amptrooper – I understand what you are going through. I kept going to doctors in Orlando and no one knew what was wrong with me. Finally my husband took me to the emergency room at Mayo Clinic in Jacksonville, FL. They diagnosed me in 1 and 1/2 hours and the biopsy was scheduled the next day. Do not give up. Remember that this can cause blindness. Have you had the Sed Rate and CRP. My Sed Rate was only 38 and they believed that I had a really bad problem. Do you have a really bad headache. It is interesting that you had an ultrasound. The Neurologist that was taking care of me said that an Ultrasound would not show anything. Where do you live?
@amptrooper – I tapered off of my Prednisone in October and around Thanksgiving I started having jaw pain. I got in touch with my Neurologist thinking my GCA was back. They did the testing and my tests (Sed Rate and CRP) came back normal. They told me to see my Internist. After seeing her, I asked for a referral to an ENT because of the jaw pain. The ENT decided I had TMJ and told me not to chew on the side that hurt. My pain is now discomfort that I can live with but I read online to use ice and heat and message in front of the ear. You might want to see an ENT for the jaw pain. The ENT said they could refer me to a Maxillofacial surgeon. I said I did not want surgery but they said the doctor does more than surgery and would just diagnosis and help with the pain. Mine is getting a little better with the ice packs and heat and massage in front of the ear. Mine is just on the right side. I also went to my eye doctor because of pain in right eye. She said everything looked fine. I don’t know if you have seen an ENT.
@amptrooper A friend had what her Dr thought was THE but she went to bed dentist for another problem and told him about the pain Dentist checked her teeth with X-Ray anf d found an abscess on her molar after removal and antibiotics she is fine so suggesting to also don't rule out your dentist
I was just diagnosed with temporal arteritis yesterday after years of everyday headaches. This past week has been the absolute worst it has ever been as the vessels in my neck and head got so inflamed and my blood pressure was at stroke level. Now on prednisone but can't get into neurologist for follow up till next week. Looking for advice in the meantime. Headaches not bad but still really hurts my neck and head to lay down on the pillow at night. Any suggestions as to pillow types? Neck still gets very stiff and hurts too. Also anything suggested for how not to reaggravate those vessels? Sitting or lying positions, etc? Just starting to learn to deal with this so any everyday living suggestions would really be appreciated.
I can not give you any advise on a pillow type but I had this in the beginning and after being put on prednisone in 24 hours the pain was all gone.
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?
I was diagnosed with giant cell arteritis/temporal arteritis over 3 and a half years ago. The steps your dad’s doctor has laid out for you sounds exactly like what happened to me. First I would like to ease your fear about anesthesia. I was just given shots in the temple to numb the area and the doctor took the biopsies and stitched me up. So far that has been the easiest part of this disease. I was put on 60mg of prednisone before I ever had the biopsy and have to say that I felt better within 48 hours. The problem comes when you have to reduce the dose of the steroids. I did fairly well until I got down to 20 mg. After that through trial and error We have learned that if I go down more than 1mg a month or sometimes 1/2 mg I start to have more inflammation and pain. I have been on a new drug for about a year now called Actemra which is a shot one day a week . The theory was that maybe it would allow me to get off the prednisone quicker but that has just not been the case. The up side is my bloodwork has been great while using the shot, but I still have relapse type issues but without the corresponding rise in c-restive protein or seed rate.
I wish your dad all the best
Please don’t give up. If it is temporal arteritis the consequences for going untreated can be devastating. Also I hope you can seek a second opinion. I see someone else warned you about not relying on a ultrasound. I was also told that an ultrasound would not show if you have this disease. I was told that a biopsy is the only definitive way to diagnose this problem. Best of luck to you
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?
I have polymyalgia rheumatic which sometimes travels with GCA. I have also been on high doses of prednisone. At the time of diagnosis, I had the beginnings of cataracts in both eyes. Within six months, I needed cataract surgery. Prednisone is like fertilizer to cataracts. My ophthalmologist removed the cataracts, and my vision was vastly improved. I have, however, had further vision problems related to the dosage or prednisone. If you have time for research, you might want to research what prednisone can do to vision.
The rheumatologist I consulted at the Mayo Clinic in Jacksonville, FL, told me that I needed to quickly report any vision changes to my doctor and to have my ophthalmologist regularly check my eyes. What I have learned is that many ophthalmologists no know more about prednisone's affects on vision than what I have found online. I am considering seeing if I can get another appointment with Mayo.
May advice to you is to do extensive research and to become an assertive advocate.
Liked by John, Volunteer Mentor, Lisa Lucier, geniecm
@rachelp I am a nearly 80-year-old diabetic who needs cataract surgery but can't have it because of the high dose Prednisone I have been taking for GCA since I was diagnosed in January 2020. Although I am currently taking 3 diabetic meds, the Prednisone has caused very high blood glucose test results that often run as high as 395 no matter what I eat. That can cause blindness and other bad issues for a diabetic. Have you found good sources for info regarding Prednisone and vision changes?
I am hoping that the combination of the Actemra injections I have been getting for 4 weeks and the recent addition of the 3rd diabetic medication will help me get to a lower dosage of Prednisone
@bt56 Are you still taking Actemra? Has it helped?
I am a diabetic who just had my 4th injection and have high hopes it will help lower the prednisone dosage because it has elevated my blood glucose test results to dangerous levels. I could use some good news.
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