Having a flare

[Susanmod]

Started on 40 mg in April for GCA. Was down to 11/10 mg and went on holiday for 3 days. Obviously did too much and head aches quite bad. I've taken 15 for 3 days - should I have taken a higher dosage? Not got appt with rheumy for awhile. Should I phone rheumy up or am I being impatient ??

Grateful for some advice.

[Deb61]

Hi Susanmod

You should call your rheumy and let him know what is going on. You will need to have your ESR and CRP done ASAP!

[Stkeyna]

Hi, i have recently gone through a similar scenario i.e. suffering from gca and have gone to 40mgs but having just seen an excellent rheumy I now feel that I should have held out at a lower dosage. The reason being that personally I get the same symptoms from high doze prednisolone as I do from gca i.e. headaches dizziness and feeling unwell!! So for me one blurs into the other.

We are all different and this is so difficult as you don't want to be taking more pred. than is necessary. I think if I suddenly got severe headaches then I would quickly increase dosage. Personally all my blood tests over last four years have been fairly normal whether I have been poorly or not!! I think you just have to rest as best as you can and try and judge your symptoms while also trying not to get too stressed - which of course can add to the headaches.

My rheumy gave me a booster needle injection of pred. which has allowed me to now get down to 15mgs. Apparently it reacts differently in the body and allows the pred. In tablet form to be reduced more quickly.

If you can speak to your rheumy it might help. It all depends on how experienced they are. I have met quite a few and my new one is the first I have felt comfortable and confident with!

Good luck!

[Nethyman]

I had a similar experience when trying to get below 20 mg Prednisolone, since May 2016.

The new guidance is not quite ready for publication, but the recommendation is 60mg Prednisolone for GCA until symptoms go away and then reduce by 10mg each 2 weeks. See Scottish website of Bhasker Dasgupta's slide presentation from Glasgow. pmrandgca.org.uk/research-a...

As others have said speak to your rheumatologist as soon as possible and get advice.

I am still at 50mg, taking 25mg every 12 hours, as this works for me, but we are all different.

I hope we can both get on top of this without too much further pain.

Best wishes

David

[PMRpro Ambassador]

To have GCA and have reduced from 40mg in April to 11mg by October is a pretty fast reduction. It is very common to have relapses during the first 18 months after diagnosis of GCA so this isn't unusual. A study done in London/Southend a couple of years ago shows there is still evidence of inflammation in GCA and other forms of vasculitis even after 6 months at doses above 20mg/day. As long as there is inflammation - it can resurge if the dose of pred is not high enough.

I don't care what the recommended reduction schemes say superficially. they can only be adhered to IF THERE IS NO RETURN OF SYMPTOMS, but this is rarely emphasised in the rubrics. I'm delighted to see that Prof Dasgupta included this in at least 2 stages of his suggested reduction scheme.

In this suggested reduction

rcpe.ac.uk/sites/default/fi...

you would have started higher (as Nethyman also says is now being advised), taken 6 months to get to below 20mg and a further 3 months to get to where you are now. That higher dose period might have made a big difference and you would still have been at about 15mg - and in PMR and GCA those few mg can make a BIG difference. This group say that this type of reduction has resulted in flare rates of 1 in 5 instead of 3 in 5.

If you have a return of symptoms you must contact your rheumy asap to see if he would prefer you to go higher. If you aren't on enough to manage it, the inflammation can easily get out of control and you would be into a real flare which could be far harder to manage again.

[DevonMichael]

Hi I started with 40mg on June 20 for GCA and I am now down to 15mg. I have just seen the rheumatologist and asked what I should do in the event of a flare in the future when I go to the lower levels. He advised that I should go back to the previous dose. Eg if my current 15mg dose did not work I would return to 17.5mg for a month and then try again.

Good luck!