Finally saw Neurologist

[Rowboat]

Ok so here is the story I have 4 specialists sitting on the fence. Pulmonologist, Rheumatologist, Neurologist and Pathologist. They are not sure that my classic symptoms and biopsy results are TA. The answer, hopefully next week I go for a biopsy of my left temporal artery (right one showed lymphocytes, mild treated temporal arteritis with diagnosis of MILD ADVENTIAL INFLAMMATION )

Ok so they say that at65mg of pred I should be pain free, just not happening. So they will biopsy the left, hope they don't hit a skip bit, then the 4 to 7 day wait for results then if positive pulse IV pred or something. If negative they will try and work out why I have the pain. Is it going to be another 18 month loss of my life?

I am just so over this whole thing.

The doc was good but

Anyway I am off for the night and hope everyone elses day was better.

[PMRpro Ambassador]

Sometimes people need more - up to 100mg/day i.v. can be used!

What doctors often forget is the variation in bioavailability (the amount of your dose you actually absorb): it is quoted as 70% for steroids but it varies from 50 to 90%. If you are a 50% person - you aren't getting the full 65mg.

[DorsetLady PMRGCAuk volunteer]

Hi Rowboat,

As you've already had one positive biopsy why are they doing another? If you've been on 65mg of Pred for some time, then it's likely to be a waste of time anyway.

I agree that at 65mg you should be pain free, but are you doing your bit as well? Reading a previous post you seem to be carrying on life as normal, and I'm afraid with GCA that's not really possible, certainly at the start.

As I've said to someone else, just because you've started Pred please don't think everything can return to normal - it can't - you still have the underlying GCA, which is a serious illness, the Pred is just controlling part of it - the inflammation caused by it, not the illness per se.

From your posts I would think the original built-up inflammation is not properly under control (maybe in your case the original dose of Pred was not enough) so each day's new batch of inflamed cells are just adding to the mix and the Pred cannot cope.

I explain it as follows - the Pred is like a plaster cast on a broken leg - the plaster doesn't mend your leg, but it helps protect it whilst the bones mend on their own. So you need to adjust your lifestyle slightly to accommodate that.

Make a conscious effort to slow down a bit, no matter how alien that may be, and see if that has any effect, or maybe contact doc and suggest you up the Pred a bit.

Do hope you feel better very soon.

[PMRpro Ambassador in reply to DorsetLady]

I agree with everything DL has said.

[jinasc in reply to PMRpro]

Me too.........................

[Rowboat]

Thanks all and you are right. I am bad . As soon as tax paperwork is sorted hopefully by tomorrow if I am still in this much pain and not booked for biopsy I am going to present at the emergency department.

[Rowboat]

In fact not doing the tax will change the appointment. Husband is being weird . If the pain stays this bad tonight I will go to the emergency room, the endone is just not helping enough.

[Rowboat]

Ok I am still here :). Hopefully will hear about when biopsy is today. I am now officially on go slow . You guys are a great help thank you

[SheffieldJane]

You've had all the wisdom just wanted to send you a hug. This is the very hard bit, I hope there is a resolution very soon!