Normal biopsy

[AverilG]

My biopsy came back normal. Going to see the Dr who diagnosed me on Monday to get a referral to a specialist . He has already started cutting back my steroids at a faster rate. Hopefully the symptoms don't come back.

[jinasc]

That is quite common and your medics should be going on the medical symptoms not a failed biopsy.

So stand your ground, it is your eyesight that is at stake and not any of your medics.

Follow this link and if you have not already read them it will help you understand diagnosis and treatment for GCA.

pmr-gca-northeast.org.uk/as...

In the meantime I would not take any drop of steroids at all.

[AverilG in reply to jinasc]

I will stand my ground for sure.Dr is no better than me. He just studied something I didn't. Lol. I am being very careful and have a great support system with my family. I will keep you posted. Thanks

[SnazzyD]

Hmm. Would want them to explain their rationale for that and not one based on normal biopsy or inflammatory markers (but yours was high) which are known to be unreliable if negative. Symptoms are king. It is possible you don’t have GCA but more evidence needs to be found to avoid putting your sight at risk. Is it worth taking reinforcements?

[PMRpro Ambassador]

All been said already - obviously your doctor is unaware that the TAB is only a confirmation if you are "lucky" enough to get a positive result. Otherwise - all it means is that they didn't find what they were looking for and there are several reasons for that. Symptoms are trumps - always.

[Telian]

My TAB was normal but ultra sound positive, not unusual to get a negative result particularly as you've already started on the pred. Do NOT reduce quickly - you do not say what dose you're on but as you get lower it is a fact that you SLOW the reduction not speed it up or you'll just flare atb.

[AverilG in reply to Telian]

I started on 60mg for two weeks then reduced to 55 now he is cutting me back 5 mg every 4 days. I am going back to see my Dr tomorrow hopefully I will k ow more then.

[Telian]

You should be okay reducing 5mg as you are on a high dose and that has to come down but under strict supervision, in fact many reduce by 10mg at that high dose - I used to reduce by 10mg until I reached 20mg then by 2.5mg until about 10mg - then it was by 1mg - what they call dead slow nearly stop (DSNS) - not more than 10% of your current dose is the reduction guidance. I used to get the headaches when reducing but it wasn't a flare if it went after about a week for me - as you get to know your symptoms you will learn if you are suffering withdrawals or a flare, withdrawals usually go after 2/3 days sometimes a little longer but don't be in a hurry. It was the first thing they taught me when diagnosed.

Best wishes.