Private biopsy?

[Curlacious]

Hello everyone,

I've had two months of GCA-type pain and a week of pain resembling PMR. It's debilitating, and I'm not closer to a diagnosis.

I've had multiple blood and temporal ultrasound tests, all normal.

I cannot take steroids so my hope is to (a) secure a diagnosis then (b) push for tocilizumab.

I have a PET scan booked for next week to diagnose me but I've discovered the radioactive tracer has a fluorine element that can severely injure me (I suffer for fluoroquinolone toxicity disability).

The rheumatologist ordered this but he cannot give me a biopsy.

Is there a way I can do a biopsy privately? Does anyone have experience of this?

Thanks!

[PMRpro Ambassador]

Don't put too much hope in the TAB - it is only positive in well under half of patients and if it is negative they go on symptoms so you would be no better off. I can't see why the rheumy can't request a biopsy. It IS still a standard procedure.

[Curlacious in reply to PMRpro]

Yes, it's a coin toss really. But the risks for me personally with a biopsy - compared to PET or a steroid trial - are negligible. And IF positive then it's irrefutable evidence I can move forward with. The doctor said he can't order a biopsy, needs connection to a hospital and I am not in his area.

[DorsetLady PMRGCAuk volunteer in reply to Curlacious]

When you say The doctor said he can't order a biopsy if you mean GP or rheumatologis? The former makes sense, but the latter doesn’t -or is he private as well?

[Curlacious in reply to DorsetLady]

Rheumatologist, Dr Hughes.

[DorsetLady PMRGCAuk volunteer in reply to Curlacious]

Have you seen him privately? That may be why’@

[PMRpro Ambassador in reply to Curlacious]

If you saw him privately - he can't request one on the NHS. You'd have to see a surgeon privately I suspect.

[Curlacious in reply to PMRpro]

Yes that's right. He can't refer me to one as such, it's done in a hospital setting.

[SnazzyD]

Are you sure it is the fluoro- bit that is the problem? I too suffered from Quinolone antibiotics and had another bout of tendonitis at the end of my Pred journey some years later. The PET scan did nothing to me.

The temple scan may not show anything up if your large vessels are involved so a PET scan is a really good thing to do. Might mean a biopsy is extra non-useful too. Mine was negative and they still treated me as GCA due to my symptoms and response to Pred.

[Curlacious in reply to SnazzyD]

Fluoride is an issue for most floxies after a quinolone reaction. But everyone is different, not everyone does. The big no-nos are steroids, NSAIDs, fluoride and more quinolones. It's good to hear you were fine with the PET scan.

Yep, the biopsies seem very hit and miss. Did you have anything show up on the PET scan? Or was that taken for another purpose?

[SnazzyD in reply to Curlacious]

I thought Prednisolone is a non-fluoridated type steroid.

My PET scan result was useless because I had already been on 60-40mg Prednisolone for 3 weeks.

[Curlacious in reply to SnazzyD]

Prednisone is indeed non-fluoridated, but for some reason is still harmful. And the radiotracer dye in a PET scan contains fluorine, which is the element that fluoride comes from.

[SnazzyD in reply to Curlacious]

I’d love more information on this; it isn’t anything I’d ever thought about and perhaps I should. The thing with substances is how parts are attached, in what form and what they are with that decides bioavailability rather than the fact it is present. So I’d like to see what is written about this.

Perhaps my Quinolones during chemo were made extra bad by having Dexamethasone along side.

I hope you are not presented with a devil and the deep blue sea choice! It is already difficult for you isn’t it? If you do have a large vessel involvement it is perilous not to have treatment. If you can’t get that treatment without definitive proof then it might be worth risking a one off tiny amount of fluorine containing substance with actually unknown risk (compared to extended high blood levels of Q’s) for a PET scan that might save your life.

[Curlacious in reply to SnazzyD]

That's right, the substances are one thing - how they attach is another. It's way out of my comfort zone to understand! Its quite likely a fluorinated steroid increased your chances of a quinolone reaction. And yes, you're right - all in all it's abouut mitigation of risk, among a sea of bad choices. The unknown risk of a PET scan is probably better than the risk of untreated LVV.

[Manihiki]

After a negative biopsy seven years ago I was still diagnosed with GCA because of symptoms. This year another flare and on low steroids my rheumatologist scanned my temporal arteries and they were 75 percent inflamed. A definite diagnosis. I would not have a biopsy!

[Curlacious in reply to Manihiki]

Ok, this is good to know! I'm leaning towards risking the PET scan. So you finally had a diagnosis with an ultrasound?

[SnazzyD in reply to Curlacious]

The thing with a PET scan is that it shows up all your large vessels and any other thing in the body that is using a lot of glucose to maintain itself such as inflammation or a tumour. A biopsy or ultrasound are much more limited. So it is a much bigger bang for your buck.