New to GCA...biopsy next week

[lgonzalz356]

Hi all! I currently have Sjogren's Syndrome and Fibromyalgia but have been having extreme headaches, scalp, face, eyes, ears, gum/teeth, neck, and shoulder pain. I honestly thought it was CoVID and got tested. It was negative thank goodness. I had a normal follow up visit with my Rheumatologist last Thursday and mentioned this to her and she suspected GCA but said I was young (54) to have it. I am from the US but she asked about my ancestry which is a third northern European so she ran CRP labs and said she'd call me with the results. She called yesterday to say my inflammation levels are up so she sent me over to a surgeon and Im scheduled for a biopsy next Weds. Ive started on 40 mg prednisone. Hoping for relief. Its been a real struggle to work. Still trying to process all this. Ive never heard of GCA until last week. Anyways its nice to be able talk things over with others who know how you feel. 🙂

[SheffieldJane]

Hello and welcome to the forum. I think you will find it a big help. Two points. 54 is not especially young to have GCA. There are plenty of people in their 50’s on here and people younger than you. Admittedly the majority are probably older. The other thing is that although you are receiving the much needed treatment and relief ( hopefully relief) the Prednisone will interfere with the accuracy of the biopsy results, possibly giving a false negative. I would be inclined to argue about the necessity for one. Sometimes the answer seems to be that it is routine. If it is not going to change your course of treatment, why have an invasive procedure? If an Ultrasound Scan was available, I would opt for that. In the right hands it is just as effective and not invasive at all. Be prepared for your bloods to normalise as well. This does not mean that you are better. It is just Prednisone working.

It will be difficult to work. You may wish to describe the particular challenges your job throws up in the face of this disease. People can share their experiences then.

[Janstr in reply to SheffieldJane]

I agree with Jane re the necessity of having the biopsy. It is invasive and as it can return false negatives, treatment has to be based on clinical symptoms (ie the treatment is the same with or without a positive biopsy result). The only advantage I could find for having the biopsy is that if the result is positive, this is a definite diagnosis.

[Horsewhisper]

Hi there, I’m 52 and was diagnosed with GCA earlier this year. An ultrasound proved conclusive and I am currently on Pred and Methotrexate. I too, found it increasingly a struggle to work and have dramatically cut back on my hours and the parts of the role I perform. Due to the nature of GCA (the pain, fatigue, other constitutional symptoms etc) along with the shock of the diagnosis, I eventually found it much easier to work around the condition, rather than against it. Rest, relaxation and self care are really really important to help you manage your lifestyle and cope with the effects of the meds and the symptoms of the disease. Perhaps after you have had the biopsy or scan and you do get a GCA diagnosis, it would be a good idea to chat with your employer to see how some changes could be made to help you. Good luck with everything and keep us posted.

[SnazzyD]

Hello, there’s so much to say but I’ll limit it to agreeing with SJ that with GCA symptoms rule, not the biopsy that is known to give false negatives. If you want to know why, just ask. I was 54 on diagnosis 3 years ago. I had a negative biopsy 8 days after Pred and had normal bloods before it but the management was the same and here I am 3 years later on 0.5mg Pred. With hindsight I would have declined the biopsy which is pretty invasive on the basis it wasn’t going to change my management. This is an exasperating condition because unless you get the holy grail of a positive test, it’s all educated guesswork, though many have not been diagnosed even with diagnostically significant history and suffered as a result. So, often people are thrown into having their lives comprehensively turned upside down on what feels like a hunch but it is what it is. I owe my sight to Pred.

There is so much to learn regards side effects and disease course. Do start a very low carb diet now to avoid weight gain and high risk of diabetes. If they do carry on with Pred and say you need bone hardening drugs, demand a DEXA scan first (if your plan allows it or you can afford one). I did as have others and it turned out I didn’t need the meds, but just calcium and vitamin D. I would ask for a VitD test as this has been implicated in not helping autoimmune diseases and also without it your bones will struggle. Mine was in my boots so I had to have three months of high loading doses, then maintenance levels.

Anyway, do read lots on here. Search topics. Ask questions. 🙂

[PMRpro Ambassador]

Hi and welcome!

I do wish they'd get up to date - the guidelines say "over 50" and the medical literature has also warned for years about missing a diagnosis of GCA because of being fixated with age.

How long have you had the fibro? Has any of that improved with the pred?

[DorsetLady PMRGCAuk volunteer]

This might give you a bit more info -creakyjoints.org/education/...

And also have a look at this - for now and what’s the future holds if you have GCA-

healthunlocked.com/pmrgcauk...

[tangocharlie]

As others have said, if you're on 40 Pred for more than about 5 days that could mean tests could give a false negative. Is your doctor aware of that? It's tricky because you can't afford to take risks and not start steroids if it is potentially GCA.

[lgonzalz356]

Thank you all for your thoughts and information. 🙂 I talked to my doctor about the ultrasound vs biopsy and she said there is no one specialized in the area to do the ultrasound which is why she is doing the biopsy. She explained after the results they will determine diagnosis taking into consideration not just test results but symptoms as well so I guess we will see.