Follow up appointment

[Poppylop]

Hi all, I had my follow up appointment today to see how I was getting on with the steroids, the Dr was pleased pretty much all my muscle pain had gone, but because I've got quite bad indigestion and feeling sick he told me to double up on my omaprazole and maybe split my steroid dose into two doses with a couple of hours between doses, what are anyone's views on this?, I told him i still had a few headaches but he didn't seem concerned about this. he said he thought I should have had an appointment come through for my scan and possible biopsy, he got on the phone to the Nuffield hospital in Oxford, gave them a bit of an earbashing, they said they would be in touch, this afternoon they rang with a date 19th september, this seems a long way off, or is this normal, I rang the doctor this evening, couldnt speak to the one i saw today but was told that nothing bad will happen in those two weeks because I'm already on the steroids, as I was worried it was a bit of a wait when it's supposed to be an urgent referral. When they rang with the appointment i mentioned it was meant to be urgent, she said I had been fast tracked and that was the soonest date they could give me, would have preferred to get it over with .

[HeronNS]

Not much I can say except the chances of a useful biopsy are reduced the longer you have been on pred. There are many false negatives in any case, and the usefulness of a positive biopsy is really only to prove the diagnosis in case in the future the doctors backtrack on the diagnosis, which they seem to have a tendency to do! What scan are they proposing?

[Poppylop in reply to HeronNS]

I think he said an ultrasound, then if that comes back negative then they will do a biopsy, if it comes back positive i won't need the biopsy

[HeronNS in reply to Poppylop]

Sounds interesting. Do let us know how it goes.

[Hidden in reply to Poppylop]

You are quite lucky to get a scan. I don't want you to have GCA, but if you have it's better to have evidence in the long run. I was just reading that it's well tolerated by patients and you can ask questions. Whether you'll get answers would be dependent on Dr I suppose. I don't know if it's a better diagnostic tool after starting pred but I will have a look round or someone else may come alone who knows.

[SnazzyD]

I think I’d need strong justification for a biopsy that far into treatment. Keep in touch.

[sennetta]

My view is that I wouldn't touch the PPI (omaprazole) with a barge pole and I would go away and research another way of dealing with the indigestion.

[Telian]

Hi Poppylop,

You can change from Omeprazole to Ranitidine - ask your doctor to prescribe it instead it’s easier on the stomach. I took Omeprazole for 5 years without problems then started to get lots of tummy ache for no apparent reason- have been okay since on Ranitidine.

Having a biopsy on pred will most likely be negative. I had one only 3 days after starting pred for GCA and it was negative. I had an Ultrasound on the day of diagnosis which was positive. My Rheumy prefers US to a TAB (Temporal Artery Biopsy) The problem is not everywhere has the expertise to carry out US. Hope you have the scan as they are more reliable. I’ve never split my dose of pred so can’t comment on that. With GCA it’s isn’t recommended but I know some with PMR do. You need a correct diagnosis to enable appropriate treatment.

What are your headaches like and do pain killers help? GCA does not respond to any painkillers. It’s a headache like no other!

Easier said than done I know but try not to worry as stress will not help your condition.

[Poppylop in reply to Telian]

Hi Telian, my headaches are not really bad, they are more annoying than agony, they can be around my temples, on top of my head, forehead or behind my eyes, where painkillers are concerned, they don't help a great deal but I've only been taking two co codamol a day, one in the morning and one at night because if i take more i start to get constipated, I don't have a tender scalp anymore. I know what you mean about stress, because I've had a few weeks of worry because i didn't know what was wrong with me, the stressing has made me feel quite unwell at times.

[Telian in reply to Poppylop]

Try paracetomol, they don't take it away but will deaden the pain. My headaches were R sided, my affected side, and I couldn't lift my head up it felt so heavy accompanied with nausea. I also had visual disturbance which would come and go until the sight went totally - miraculously it came back! I was fast tracked and diagnosed with GCA the same day. The timing was right and 50mg pred saved my sight - plus my excellent GP for being so alert.

Stress isn't good for anyone - try some deep breathing exercises and remain quiet for as long as you can - it will help your body relax. You can do the deep breathing anytime anywhere once you've got the right technique.

Hopefully you'll know something very soon. Please let us know how you get on.

[PMRpro Ambassador]

I would want to know whether a negative biopsy would alter the way they treat you - the u/s is probably more likely to show something than the TAB. The recommendations for fast-track are seen in 24-48 hours and biopsy soon after commencement of steroids. By the 19th September the likelihood of finding anything in a biopsy is very low.

A negative TAB doesn't mean it isn't GCA - it means they didn't find what they wanted which is the same thing.