GCA-PMR awaiting biopsy: I started having left... - PMRGCAuk

PMRGCAuk
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GCA-PMR awaiting biopsy

Rv8apilot
Rv8apilot

I started having left temporal headache and scalp tenderness a month or so ago. Spoke to my GP about it. ESR was 13 and CRP was slightly elevated at 0.98, so he said not likely GCA. Then I developed weird pains in my left elbow, left wrist pain bad enough that I couldn’t wear my watch and aches in my upper thighs. No vision changes. Ophthalmologist friend referred me for temporal artery biopsy, which was done 10 days ago. Local pathologist sent it off for 2nd opinion, so obviously it is indeterminate. Began prednisone 40 mg daily on 2-14, and all symptoms suddenly went away completely. Reduced to 20 mg daily after 5 days and all is still good. Referral to rheumatologist is pending as I am about to move across country. Plan now is to maintain on my present prednisone dose, repeat the markers next week and consider a slow taper. But that depends on biopsy result and symptoms. I live in the US, but this is the best group I have found. People here are much more informed than doctors that I have spoken with.

22 Replies
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Good luck with your biopsy , if you need to ask any questions about it or get some support now or in the future , do post , someone will always be here to chat and give a helping hand xx

PMRpro
PMRproAmbassador

Just because your blood markers were low doesn't mean it isn't GCA - up to 20% of patients never have levels that are out of normal range although they may be elevated for them, my normal ESR is low single figures - 16-18 is very raised for me but still apparently "normal".

If the pred dealt with all the symptoms - that is part of the picture being built up. You are good at 20mg - just keep slowly reducing and see what happens. If symptoms come back go back to the previous dose and wait a bit before trying a smaller step down. It will be interesting to hear the biopsy verdict.

Rv8apilot
Rv8apilot in reply to PMRpro

Thanks so much. That sounds like what I’m thinking. I hate the thought of long term steroid use, but blindness or the complications of this disease seem so much worse.

PMRpro
PMRproAmbassador in reply to Rv8apilot

It isn't half as bad as it is often painted! Pred has given me 10+ years of a pretty good life after 5 years of rubbish! I have no identifiable adverse effects - no diabetes, weight gained and lost with low carb though could do better, no cataracts, no loss of BMD. I'll take that. Most adverse effects can be managed/avoided when you know how.

I too have been diagnosed with PMR and possible GCA. Felt terrible pressure and pain through my forehead,back of my eyes and top of my head. I also had a temporal artery biopsy that was inconclusive. I began to realize that the pain and pressure seemed to always be with me but having PMR always made me worry about GCA. I finally went to a neurologist and her diagnosis was occipital neuralgia. I’ve tried pain injections to relieve the pain but they don’t last very long. Having PMR still makes me afraid of GCA. Could your pain also be occipital neuralgia? Enjoy flying your Vans RV.

I’m calling BS on the “occipital neuralgia” diagnosis. It literally means nerve pain in the back of your head. There are lots of diagnoses that just describe symptoms because the real diagnosis can’t be pinned down. Thanks for your reply. We have a black cat, too.

PMRpro
PMRproAmbassador in reply to Rv8apilot

And one cause of that pain in the occipital region is GCA ...

Blackcatlover
Blackcatlover in reply to PMRpro

That’s why I always worry about GCA. I’ve also had a complete upper vascular ultrasound done at a Boston hospital. They did my whole head,neck, upper arms and chest. I went in during a flare with a terrible headache. Everything was perfectly normal. The Boston rheumatologist thought that the inflammation during a flare resulted in my Occipital neuralgia flaring. I only hope they are right.

As I understand it the Biopsy may not give a definitive answer if you had taken much pred before so don't be too surprised if it is confusing. I refused the Biopsy because I had been on offer for weeks rather than days.

You are right this is the best forum! Good luck from another RVer!

Ach predictive text. Offer = prednisolone!

PMRpro
PMRproAmbassador in reply to Pippah45

One is left to ask how pred can be turned into offer???????? ;)

Pippah45
Pippah45 in reply to PMRpro

Indeed my new little Fire tablet is difficult to fathom - I must keep more of an eye on it! :)

Well, my biopsy came back positive for GCA. I remain symptomatic on a reduced dose of prednisone, 17.5 mg daily. I’m hoping that this disease, like many others, has a spectrum of severity, and that early recognition might attenuate it’s progression and require less steroid than a more advanced case. Markers are not very useful for me, since ESR and CRP were essentially normal from the outset. My PCP will repeat them this week, and rheum referral is pending. Actually I feel better than I have in years, so I wonder if this has actually been going on for a while. I’m 67 and male, and the demographic seems to be more female sufferers of this disease, but that’s the way it is. Has anyone managed GCA with a lower dose of prednisone from the outset? I’m hyper attuned to any little ache or pain now, and ready to bolus myself with a big dose of prednisone , but so far nothing.

PMRpro
PMRproAmbassador in reply to Rv8apilot

Do you mean SYMPTOMATIC - or did the un- get lost?

The pred has no effect on the actual disease process, it is a management strategy to keep the inflammation down to minimise the symptoms in the meantime until the disease activity falls off. There is evidence that the disease process is still active after 6 months at above 20mg and relapses due to over-reduction of the dose of pred are common in the first 18 months at least.

If you are still symptomatic, the disease is still active - and you are on too low a dose. The dose given at the outset is more than is expected to be needed - to reduce the swelling due to the inflammation as quickly as possible and so reduce the risk of damage due to poor/loss of blood supply which can result in permanent loss of vision as the worst scenario but also stroke or other cardiovascular problems due to inflammatory damage to the arteries.

If your markers don't help it is the symptoms that are key - I repeat, if you mean you have symptoms, you also need more pred.

Rv8apilot
Rv8apilot in reply to PMRpro

Oops, yes I meant asymptomatic. I think spell check got me. Thank you. I will consider increasing my dose back after consulting with my PCP later this week.

PMRpro
PMRproAmbassador in reply to Rv8apilot

If you have no symptoms then you are probably fine at that dose - I wrote that on the basis of symptomatic! And then wondered if the gremlins had got at it!

PMRpro
PMRproAmbassador

In view of the fact the biopsy was positive (100% certainty!) - do you happen to know the figures for your ESR and CRP beforehand? I do like concrete examples to offer people struggling with being told you can't have GCA with normal range markers ...

Hidden
HiddenModerator in reply to PMRpro

"ESR was 13 and CRP was slightly elevated at 0.98, so he said not likely GCA".... 😉😁

Hidden
HiddenModerator in reply to PMRpro

Under 1 seems low to me!!

PMRpro
PMRproAmbassador in reply to Hidden

But the ESR could still be raised - mine is about 4 on a good day ;)

Hidden
HiddenModerator in reply to PMRpro

Yes... That's why I conveniently ignored it..... 😅

Rv8apilot
Rv8apilot in reply to PMRpro

ESR was 14. Normals in this lab 0-15. CRP was 0.98. Normal reference 0-0.50, so CRP was slightly elevated. This was a month ago, and I’m having the markers redrawn tomorrow.

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