1. < Polymyalgia Rheumatica (PMR)

GCA conserns

Posted by aewin @aewin, Nov 27, 2023

Hello, first of all sorry for my bad english. My native language is the hungarian. It is my first post here but earlier i have learnt a lot here, and found a lot of useful information and help about PMR.
I am 49 years old and was dignosed with PMR in August of 2023 and was prescribed steroid 16 mg daily. Now am I on 11 mg and tapering down by 1 mg per month. What i am worry about is that i developed a few symptoms that point to GCA. I have headache both in my temple and forehead area and small jaw pain when I eat and mild face pain similar to sinusitis. The headache is mild, and does not last all day long. I have small focusing problem in my left eye, not blurry vision, but quite strange feeling. I have dry cough for more than a month now. When these symptoms started about a few weeks ago I visited my rheumatologist and she told me that these symptoms are not related with pmr, i would have to visit a neurologist because it is probably an aura migraine. I don't think so, because i never ever had any symptoms related with migraine earlier in my life. I am a very scared because I'm aware of GCA and I am very stressed at the thought I would have it. Can the GCA develop during the steroid treatment of PMR? Or usually the GCA comes when the PMR is in remission and the dosage of steroid lowered? I little bit confused. Thanks for your help.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

ddmo | @ddmo | Dec 9, 2023
In reply to @dadcue "Thank-you for the update. I was wondering what was happening. I know it is probably too..." + (show)
@dadcue

Thank-you for the update. I was wondering what was happening.

I know it is probably too soon to talk about discontinuing Actemra. I have been on Actemra for almost 4 years. Actemra was stopped once because of a lack of supply during a prolonged period of time when there was a problem with the supply chain. I didn't do well when Actemra was stopped. I wouldn't call it a relapse but I did go back on 10 mg of prednisone for a couple of months.

Now there doesn't seem to be any plan to stop Actemra. First my doctor would say we would discuss it at my next visit. Nothing happened at the next visit so I asked again at my recent visit. The answer was, "I could do an infusion every 5 weeks if I wanted to but I didn't need to." That wasn't exactly the answer I wanted to hear.

I'm currently doing an Actemra infusion every 4 weeks and all is well. I got off prednisone again in a couple of weeks when Actemra was restarted.

Jump to this post

just read your situation and I'm considering Actemra infusion... There are so many risks that are quite frightening. I've had pmr (after covid vax and booster ) I then tested positive for GCA. I haven't any vision probs. Pain in temples and back of neck and upper shoulders.
I've always been an active 75 yr old female. I do Pilates every day.(when possible) I've been on Prednisone for 3 yrs and tapering to 3 mg. was doing great until PAIN in temples and a compression feeling around back of head, neck also. Rheum said it was a relapse and could happen even tho I thought I was doing fine. He suggested Actemra Infusion and taper off Pred. I was scared after reading all the info on the infusion.. Could you tell me more about your experience. The Rheumy has me back on 15 mg pred. so disappointed... he tried putting me on 20 but blood pressure was high and i hate pred. thanks for your insight
Dianne

REPLY
DadCue | @dadcue | Dec 9, 2023

@ddmo

Hi Dianne. You may find the following discussion useful. It includes my comments along with a few other comments from other people.
https://connect.mayoclinic.org/discussion/actemra/?pg=1#comment-977608
If you have any questions ... feel free to ask.

As for high blood pressures on prednisone I can say the following. My blood pressures while on prednisone soared to 210/110. I had no prior cardiac history so it was a surprise to be diagnosed with left ventricular hypertrophy (LVH).
https://www.mayoclinic.org/diseases-conditions/left-ventricular-hypertrophy/symptoms-causes/syc-20374314#:~:text=Left%20ventricular%20hypertrophy%20is%20a,cause%20is%20high%20blood%20pressure.
I went from no blood pressure medications to 3 blood pressure medications after being referred to a cardiologist. The cardiologist said my heart was being stretched due to high blood pressure which in turn was causing cardiac arrhythmias. The blood pressure medications made my blood pressures better but still not good.

When Actemra enabled me to taper off prednisone, my blood pressures normalized. I am now off all my blood pressure medications in addition to being off prednisone.

REPLY
marilynredder2367 | @marilynredder2367 | Dec 10, 2023

I would go with the GCA theory. I had PMR and was off prednisone for six months when my ESR went up to 85. I had a temporal biopsy which came out negative but was treated for GCA and apparently that’s what it was. We are now going back to 2015. I have had several relapses, and I am still on prednisone and.Actemra.

REPLY
redboat | @redboat | Dec 14, 2023
In reply to @nyxygirl "Hello @redboat I was also wondering how you were ! What an informative story -- so..." + (show)
@nyxygirl

Hello @redboat I was also wondering how you were ! What an informative story -- so NO GCA - but you were/are Prednsione -non responder for PMR ? did you retire ?

Jump to this post

Hi @nyxygirl, thanks for your message. In terms of the GCA diagnosis, the doctors say I have "presumed GCA" or "non-cranial GCA". I think they call it this because imaging has never revealed it, but my symptoms and blood tests results were so much worse than what is usually seen with PMR. The truth is, all they really know is that I had a tremendous inflammation event. It had many PMR-like symptoms, extraordinarily high inflammation blood markers (CRP was measured at 347 mg/L), and multiple other inflammation symptoms that aren't easy to explain. Fortunately, the treatment regime (first Prednisone, then Actemra, aka tocilizumab) has been effective. Especially the Actemra is working well. Unlike Prednisone, Actemra has no side effects that I can feel, so there's no rush to get off it. Blood tests do show a part of my immune system, known as C4 complement, is below normal, which is expected with Actemra. I guess this makes me more vulnerable to infection. Also, Actemra does slightly raise my liver scores, but they are still in the normal range.

REPLY
jabrown0407 | @jabrown0407 | Jun 18 6:00am

Mt ophthalmologist told me to run, not walk, back to her if I had even one symptom of GCA. ER rooms do not have the equipment to test for it visually, rheumy's also often downplay the problem, only my ophthalmologist took it totally seriously. She went so far as to give me her personal cell number to call if I had any symptoms.
My rheumy told me that she screened for it once and said nothing to me since I apparently did not have symptoms I believe PMR patients should be informed that it is possible, at any time, and to be on the lookout, taught the symptoms and the proper action. My ophthalmologist said it is one of the very few eye problems that is considered a true medical emergency.
GCA can cause permanent eye damage and blindness. Why would anyone fool around when that is a possible outcome? OK, some of us would overreact and worry needlessly. If that is the worst outcome that a warning of this type has, then isn't it worth it?

REPLY
1 reply
Teri | @tsc | Jun 19 1:29pm
In reply to @jabrown0407 "Mt ophthalmologist told me to run, not walk, back to her if I had even one..." + (show)
@jabrown0407

Mt ophthalmologist told me to run, not walk, back to her if I had even one symptom of GCA. ER rooms do not have the equipment to test for it visually, rheumy's also often downplay the problem, only my ophthalmologist took it totally seriously. She went so far as to give me her personal cell number to call if I had any symptoms.
My rheumy told me that she screened for it once and said nothing to me since I apparently did not have symptoms I believe PMR patients should be informed that it is possible, at any time, and to be on the lookout, taught the symptoms and the proper action. My ophthalmologist said it is one of the very few eye problems that is considered a true medical emergency.
GCA can cause permanent eye damage and blindness. Why would anyone fool around when that is a possible outcome? OK, some of us would overreact and worry needlessly. If that is the worst outcome that a warning of this type has, then isn't it worth it?

Jump to this post

A doctor friend told me to go to the ER immediately if I had any visual disturbance. Informed about a patient's history of PMR/GCA, the ER doctors treat with IV steroids, based on what I've read from others posting about this in Connect
I was diagnosed with GCA. Had it once, was off prednisone for a year and a half, then relapsed. Currently taking 20 mg of Prednisone, down from 40. Before diagnosis, I had two incidents of visual disturbance: I could only see white out of my right eye. I thought it was from working on the computer too much. I didn't have any permanent damage to my eye, fortunately.
You're right, @jabrown0407, anyone with PMR needs to be informed of the symptoms of GCA and be on high alert to seek treatment if they experience any visual disturbance.

REPLY
View MoreView Less
Please sign in or register to post a reply.