GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

Keep tapering until you are down to .25 mg daily. I stopped Prednisone at 1mg 2x daily on Dr. approval and had a very uncomfortable withdrawal. Redid from 20mg for two months and had very few (if any) problems.

I was diagnosed Oct 16 2023 was started at 60 mg, now at 2 mg, will finish prednisone in 5 days, on Actemra shot weekly, experiencing knee pain, thinking of getting gel injection.

I seem to get finger/arm and leg cramps when I am dehydrated--maybe? It's almost unbearable! They subside within 20 minutes. I also take a spoon or 2 of yellow mustard. I don't know if it's been the "cure" or if the cramp/s have run it's course but maybe it's what help/ed. Good luck! By the way, as a child I always had severe leg cramps too. My mom would get warm compresses on them which seemed to help. Warmth does seem to help also.

Congratulations! That is wonderful! You must be very happy with all the progress that you made. I had to get the biopsy for GCA because of blurred and double vision when I was diagnosed with PMR. So they automatically started me on 60 mg of Prednisone. Fortunately, I did not have GCA. I am now down to 3 and 2 mgs of Prednisone every other day alternating. I was wondering if you currently have any symptoms of either GCA or PMR, and are they going to transition you to another form of treatment/medication? Because I was experiencing pain while weaning down from 10 mg to 7.5 and again from 7.5 to 5 mgs and then from 5 to 4, the doctor wanted to put me on Kevzara. Since weaning me down from 3 to 2 mgs I had no pain and I'm feeling okay. So I'm wondering if I would even need another medication at this time? So does your treatment plan look like for you?

I have PMR and worry about getting GCA. Did anyone who got CGA get ear aches as a symptom? Thank you

I was first diagnosed with PMR in August, 2023, and I was also worried that I would have or get Giant Cell Arteritis. So I'm right there with you. I even had the biopsy for it due to have 6 out of the 8 of symptoms along with the PMR. My biopsy results showed I was "least likely to have it". After that I never worried again. FACT: Only 10% of people with PMR get Giant Cell Arteritis. Whereas, 50% of people with Giant Cell Arteritis get PMR. So your chances are a lot less than you probably thought. Here are the symptoms of Giant Cell Arteritis according to the Mayo Clinic Website:

Generally, signs and symptoms of giant cell arteritis include:
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Persistent, severe head pain, usually in your temple area - My temple pain was caused by grinding my teeth - TMJ.
Scalp tenderness - Alopecia - Anxiety
Jaw pain when you chew or open your mouth wide - Again grinding my teeth
Fever - PMR
Fatigue - PMR
Unintended weight loss - Did not have
Vision loss or double vision, particularly in people who also have jaw pain - Had double vision - not sleeping and very tired from PMR - was left undiagnosed for 3 1/2 years (my eye doctor did not find anything wrong upon examination)
Sudden, permanent loss of vision in one eye - did not have this symptom.

In a nutshell had 6 out of 8 symptoms and still did not have GCA. If you are still concerned, talk to your Rheumatologist and/or General Practitioner. Many things can cause ear aches from something as simple as needing to clean your ears to sinus infections to ear infections, etc. Good luck and hope you feel better soon. Don't worry, everyone's in the same boat here just trying to figure things out.

Rheumatologist thought I had GCA but am grateful I was "least likely to have it". I was originally at 60 mg of Prednisone back in August, 2023 when I was first diagnosed with PMR. Now I am down to 2 mgs daily. My weaning regimen so far has been:

60 mgs to 40 mg since I didn't have GCA
Fast Forward: From 10 mg to 7.5 mg had some side effects
From 7.5 to 5 mg had terrible pain that went away with Advil (cleared using Advil with my Rheumatologist). Only had to take one dose
From 5 mg to 4 mg had some pain again. Took Advil once.
From 4 mg to 3 mg had some pain again. Took Advil once.
From 3 mg to 3mg and then 2 every other day alternating. No pain and no Advil
From 3 mg & 2 mg to 2 mg for the next month - No pain and No Advil so far.

I just switched Rheumatologists and my new doctor just put me on the 2 mgs although he wanted to go down to 1 mg, I was not comfortable with that so he went to 2 mgs. I figure slow and steady will win the race, so I'm continuing to take my time with the weaning process. I've come so far and am trying to avoid any bumps in the road. Good luck.....you are doing great! Hoping for the best for you!

Your post makes me feel so much better!!! I have tMJ so I figured jaw pain was that. Just the idea of losing my eyesight has me paranoid I guess. I am going to talk to rheumatologist about it this week. How does a biopsy show you are the “least likely” to get GCA? Thank you!!

Anyone who would even think of the possibility of losing their eyesight, would be very nervous and paranoid. That's normal. If they didn't, then I would be concerned, LOL.

The biopsy shows what your chances are of having GCA, not "getting" it. I believe the results would either read "least likely to have it, likely to have it, or most likely to have it" as it was explained to me by the surgeon who did the biopsy. Let your Rheumatologist know your symptoms right away upon onset, and let them tell you whether you need a biopsy or not, because your Rheumatologist knows exactly what to look for (I had the TMJ but I also had really bad double vision on an off and my eye sight was blurry, but looking back, I was also in a lot of pain, in bed a lot and watching TV to pass the time). I'm sure they have treated quite a few cases of PMR and GCA, especially PMR since COVID-19 which was when the onset of my symptoms came into play.

Make sure if you ever have to get the biopsy, ask your Rheumatologist and Surgeon questions about the procedure, suturing of the biopsy area, recovery and what you can and can't do, when you will have your results, etc. Also check the surgeon's reviews. The only thing I was upset about with the procedure was when I was just about ready to go in for the biopsy, someone told me the surgeon is not a "Beautician" which at the time I found funny and I even laughed. I didn't care if he had to shave an inch of my temple area. I'm not a vain person. What she should have said was "that he was not a Plastic Surgeon"; he did a really bad job on suturing (uneven and skin over lapping and bulging). Not much affects my son either, but the look on his face told a thousand words. I asked him to take a picture with his phone so I could see it. He said are you sure, of course I was sure. I was just waking up from the anesthesia so not much was bothering me at the time. But let's put it this way, Frankenstein could have been my father, LOL. It took a while for the area to get somewhat back to normal, and now I can only feel a one inch groove on the side of my face, especially the left side. You can't see it, but I am just extra careful to clean that area. I wish someone had told me this info before I went into the procedure.

So regarding GCA. Upon onset of GCA symptoms, a person should immediately get to a doctor. Not just to call them but actually to see them. As time goes on the chances of going blind increases. I believe my doctor told me I had about 10 day at which any point, if I had GCA I could go blind. However, remember your chances of getting GCA are only 10% if you have PMR. So the way I see it, if I keep my PMR under control, then I won't have to worry as much about the GCA.

You never mentioned where you are with your treatment? Are you on Prednisone or are your symptoms not that severe yet where you haven't received treatment?

I'm providing all this info for you not to make you more nervous or paranoid, but so you are informed. I wish someone had told me this prior to my biopsy. I would have been more prepared or maybe even have looked for another surgeon.

This is the way I feel. Life is a journey and along the way we all encounter bumps in the road. How we handle those bumps is what builds character and strength. Just be the best person you can be.

I know this is long winded but I hope it helps!

I can't understand why I wasn't ever diagnosed with GCA. I had all the sign and symptoms of GCA during my 25 years of being treated with prednisone. Maybe all the prednisone prevented GCA but it didn't prevent PMR from being diagnosed.

I had facial pain and severe headaches which were caused by trigeminal neuralgia. My case of trigeminal neuralgia wasn't autoimmune related but it sure flared up when my inflammation levels were elevated.

After 25 years with trigeminal neuralgia, a surgery mercifully stopped my facial pain and headaches. Prior to the surgery, the neurosurgeon wondered what I used for pain. Normally the surgeon said he saw a list of pain medications "a mile long" for trigeminal neuralgia but he didn't see anything for pain on my medication list. I told the surgeon that I only used Prednisone but he looked skeptical when I told him.

My entire left side of my face and scalp is now numb and tingling. I don't feel anything on the left side of my face when it is touched. The left side of my face is merely uncomfortable instead of having excruciating pain.
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344#:~:text=Trigeminal%20neuralgia%20(try%2DJEM%2D,as%20a%20chronic%20pain%20condition.
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I had visual disturbances galore which mostly occurred only in my left eye. I would also wake up in the morning with vision loss but my vision loss was never permanent.

My vision loss was caused by eye inflammation which was treated with 60-100 mg of prednisone. Emergency visits with my ophthalmologist were commonplace for me to treat an aggressive type of uveitis which was autoimmune related.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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The nice thing about frequent urgent visits to my ophthalmologist was the reassurance that there wasn't any evidence of GCA.

It was ironic when I was approved to receive Actemra for PMR, the recommendation was to treat me "as if" I had GCA.