GCA future?

[Spanky2019]

Can't research thoroughly yet. Am I correct in that with initial high dose pred 40 or 60 mg the gca symptoms are covered up by the side effects of pred? Though different, one is nearly as bad as the other?

[jinasc]

Sorry I do not quite understand your question.

The pred saves your sight and is absolutely necessary, the high doses are to control all the symptoms and enable you to manage the inflammation.

GCA only does not give you the pain that PMR people encounter in every muscle in their body.

Have both, then both with be relieved at the high doses and as you come down, then muscle pain will kick in at a lower level than it would have been when first diagnosed with GCA.

That is how I understand it.

[Spanky2019 in reply to jinasc]

I have a lot to learn and don't want to be ungrateful for healing powers of pred. I've only seen neuro ophthalmologist not rheumatologist yet. Shoulder pain, that we thought was rotator cuff problems & lower back & recent hip pain I attribute to overwork was totally gone in 4 days of pred. Suspect I will get diagnosis of pmr once I am fully evaluated. My mom had pmr for years & on prednisone. As close as I was to her, I never fully appreciated the pain she endured. Feeling emotional about that. I have other multiple other issues she also had, esophageal dysmotility, Gerd, hiatel hernia, aortic regurgitation. I'm turning into my sweet mommy, but I have a larger support system and resources which should help. Mainly today just trying to adjust to shakiness, weakness and still blurry/painful eye.

[SnazzyD]

The high doses cause the inflammation to recede so that the GCA symptoms should go if the dose is high enough. The side effects of Pred at that dose level can feel as intense but are not the same. For example you can feel very weak and wobbly, amongst other things. When I started on Pred for GCA I was normal apart from the head pain as the worst symptom. Once on Pred the pain went, my eyesight came back but I felt very unwell and debatably worse than before. This improved as the dose went down. Is that what you mean?

[PMRpro Ambassador]

Depends on the person - and no pred side effect is anything like as bad as the ultimate potential adverse effect of GCA: blindness.

For the moment, accept that you have a serious systemic illness and the pred is reducing the impact it has on your body, all over, not just your eyes. And behave like a poorly person as that will help the GCA too.

PMR can be a symptom of GCA when untreated, it isn't a case that you have two different diagnoses. The dose required to manage GCA will always also manage the PMR bits until the dose falls to well below about 15-20mg. Some people get "just" PMR symptoms, some "just" symtpoms typical of GCA - and before treatment some get both.

[Spanky2019]

As always, great helpful information.

[DorsetLady PMRGCAuk volunteer]

Hi

“Am I correct in that with initial high dose pred 40 or 60 mg the gca symptoms are covered up by the side effects of pred?”

No you are not correct - yes the GCA symptoms should be covered up, but that is because the Pred is working on the inflammation in your body caused by the GCA - and inflammation is what is causing your pain and stiffness.

The side effects are not covering up anything - they are completely new problems caused by the medication, and although at the time seem as bad as the GCA symptoms they are not! As you reduce your intake of the medication the side effects will diminish.

I know, I started at 80mg, and you can feel disoriented, hyper active, have blurred vision, but as your body gets accustomed to all that cortisol charging around, and as you reduce it will, and does get better.

You have to tell yourself during those moments when you wonder if it’s worth it - yes it is, these side effects are temporary; loss of sight through GCA is permanent!

Me - got the Tshirt!