not sure what happens now?

[Cfmad298601]

so, about 10 days ago I had my biopsy, after being on 40mg pred for a couple of weeks. Result was a bit inconclusive, I’ve also had my Rheumy consult with a helpful lady and a couple more rounds of bloods since, which show esp reduced to 23, down from 71 & crp to 19 from 117.

They did send me to the eye clinic same day as I had some flashing in eye a few days before, they confirmed there wasn’t any apparent damage to the optic nerve etc, phew.

The hospital has sent me away with 3 months supply of pred, continuing on 40mg for a couple of weeks more, then gradually tapering every 2 weeks to about 2.5 in January.

symptoms are much better I only notice minor jaw and head ache in morning (24 hrs after previous pred dose) which seems to improve when next dose taken.

But not sure what happens now, I have no more appts on the horizon, should I assume I will be advised to attend more blood test to check progress, is this at my GP, or the hospital? Do I wait, or do I arrange appts?

Also, on another note……sorry, if it’s to much info…but I’m getting uncomfortably constipated.

Is there any otc stuff I can take whilst on pred to “speed” things up. I drink at least 1.5-2litres water daily and have a reasonable diet already.

Thank for all you help

[DorsetLady PMRGCAuk volunteer]

Hi,

I guess you meant no apparent damage to optic nerve as you’ve said phew!

If so, that’s good, but as you are still getting jaw & head pains (albeit relieved once Pred taken) that does indicate GCA even though biopsy was ‘inconclusive’….so I certainly wouldn’t be thinking about reducing until that has gone completely.

Giving you 3 months supply of Pred and a mandate to reduce every 2 weeks in not good enough….you need to contact GP initially and discuss way forward…and ask about further Rheumy appointments.

How much were told to reduce each time? Two weeks on one dose is not always long enough to know if okay before you step down to lower dose, and if the reduction is too big, it’s difficult to know what your tipping point was to start a flare -which is highly likely.

You do need regularly blood test, but symptoms, or lack of them are the real key to reducing….

As for constipation- I found grapes, prunes or figs did the trick…also found magnesium citrate supplements had desired, or undesired affect!

Please contact GP at easiest opportunity- and get things sorted.

[Cfmad298601 in reply to DorsetLady]

thanks, yes the eye test, Ive edited the post now (hadn’t had my morning cuppa yet!)

the instructions are to continue on 40mg for two weeks, then 30, 20, 17.5, 15, 12.5 and 10 at 2 week intervals…….then continue as prescribed

[DorsetLady PMRGCAuk volunteer in reply to Cfmad298601]

Can only reiterate what PMRpro has already said absolutely bonkers…

1. No reducing until all jaw pain/ headache completely under control

2. Some may be able to reduce 10mg a time..but certainly not everybody -5mg a time -and preferably longer than 2weeks. As I said it can take that long for you to know reduced dose is enough to control current activity of disease.

I know guidelines “suggest” the regime you’ve been given - but they say 4weeks at initial dose before tapering AND as long as all symptoms resolved.,

3. Once 25mg is reached successfully, then 2.5mg reductions

You do need to have a sensible discussion with your GP, with regular appointments..

When I had my GCA (before covid, so do appreciate a lot easier to get GP appointments and my circumstances were different -look at profile) - I always had bloods tested and an appointment to discuss how I felt in myself before I tapered.

That is how it should be done - and there is no excuse now that it cannot.

[Missus835 in reply to Cfmad298601]

That reduction seems way too fast, for either GCA or PMR. Wee bits at a time has worked for me. Constipation....I can't eat oatmeal (porridge), it makes me gag, but I do make myself an apple crisp, divide into small containers. Freeze it. Very little sugar ( and I use demerara), practically no flour, olive oil, mostly oatmeal, apples, raisins and cranberries. Makes a very delicious little breakfast and keeps me very regular.

[PMRpro Ambassador]

"The hospital has sent me away with 3 months supply of pred, continuing on 40mg for a couple of weeks more, then gradually tapering every 2 weeks to about 2.5 in January"

Well that is a piece of nonsense in suspected GCA!! If they are going on symptoms for a GCA diagnosis that taper is risky. What did they mean by "a bit inconclusive"? Were they signs of infiltration (which would happen in GCA even if the giant cells weren't seen? Just because a GCA biopsy is "negative" if doesn't mean it isn't GCA for several reasons. If you have symptoms still - you shouldn't be reducing yet.

nhsinform.scot/tests-and-tr....

If adding suitable fibre to your diet doesn't work there is a range of different types of laxative explained in the link above. Lactulose used regularly is good - just don't expect it to work overnight and increase the dose because you think it is doing nothing! And whatever you choose, drink plenty, especially if you are using a bulk-adding formulation as they need liquid or you will get more constipated not less!

[Cfmad298601 in reply to PMRpro]

sorry, I was the one using the “bit inconclusive” as the Rheumy had said the biopsy results hadn’t confirmed GCA but added that this wasn’t unusual. Everything is pointing to GCA and they seem to be working on that. This being all new it seems like the last 3 weeks has been crazy, lots of appts, hospital tests, drs phone calls, back n forth etc and then I get given what seems like a suitcase full of preds and alls gone quiet 🤷🏼‍♀️

[PMRpro Ambassador in reply to Cfmad298601]

I stick by my comment then - if they are (quite correctly) assuming it is GCA, then that taper regimen is crackers UNLESS they have also started you on tocilizumab! This isn't a disorder where you take a high dose of pred for a few weeks and taper off it. GCA is a chronic autoimmune vasculitis although it does tend to burn out and go into remission for most people. But NOT in 4 months - much more like 4 YEARS. Do be on the watch for any GCA symptoms reappearing - stop reducing and possibly go back up.