Looking for reassurance

[Ann-1]

Diagnosed with PMR in April this year, symptoms were well controlled on 10mgs of preds. Unfortunately, following a month of increasingly worrying symptoms I’ve now been diagnosed with GCA and preds have now been increased. I realise these are early days in my journey but wondered about others experiences at this early stage, in particular symptom control. From early morning until preds kick in again I have returning discomfort. Is this usual and acceptable or a sign my dosage needs increasing. As this is only my 1st week I’m inclined to sit tight and see how things develop but hoping for some words of wisdom from you lovely ladies.

[DorsetLady PMRGCAuk volunteer]

Hi

You don’t say what your dose has been increased to - that would help us gauge whether it’s enough if not.

For some it does take longer - but if you are at the right dose, then I would have expected a significant improvement within a week or so.

[Ann-1 in reply to DorsetLady]

As I had no visual symptoms I’ve been started on 40mg. I have improved dramatically but should I be looking at 100% symptom control 24hrs or is that unrealistic?

[jinasc in reply to Ann-1]

Ann were you started on 10mg when you were first diagnosed or higher?

How long have you been on 40mg?

Is the headache, jaw pain, etc OK and is it more PMR pain?

I know it is difficult to be hit with one and then the other quickly but we will help all we can.

[Ann-1 in reply to jinasc]

Hi, I’ve only been on 40mg a week now, prior to that had been tapering from an initial 15mg for PMR but had to go back to 10mg due to flare. This then remained stable at that dosage for a month before GCA symptoms began. In my case the GCA symptoms are quite distinct from PMR as they are all from the neck upwards 😳 so definitely GCA creeping up early morning.

[DorsetLady PMRGCAuk volunteer in reply to Ann-1]

Further to jinasc questions - what in particular is still not relieved? You should expect at least 70% improvement overall - some do get 100% and fairly quickly - but not everybody. Plus 40mg is the lowest start dose for GCA - you may find you need a little more if it’s not doing the job.

[PMRpro Ambassador]

It depends which symptoms are creeping up in the morning - but I'd say you might need a bit more for a while as 40mg is bottom of the ladder for GCA. They don't really recommend splitting the dose for GCA but it does sound as if the dose you are on now isn't suppressing the inflammation for the full 24 hours.

[jinasc]

Ann, both PMRpro and Dorset Lady have answered what I thought it might be............too low a dose so a call to Rheumy or GP seems necessary.

Also, I was told, when first diagnosed with GCA, never to split the dose. Take it as early as possible after 2am.............so if you wake up at say 5am...........cuppa tea, slice of bread, tablets and back to sleep. Then when you do get up............a warm shower (not hot warm).

This gives the pred time to work and then warms up those muscles............you do not need to use soap etc either. Saves the natural oils in your skin.

Now I am aware that every one is different, but when I was diagnosed - 60mg and complete relief within 24 hours. Mind I did not have PMR.

Do keep coming back.........as I said, we will help all we can.

[Rimmy]

It is a little confusing I think when first you get PMR diagnosed and start an appropriate dose for that and then down the track GCA appears and its really a whole new ball game. I agree with the resident 'experts' having been through this myself - 40mg has likely not been enough to get the inflammation under control if you have any significant symptoms after a day or two. There is an argument to 'whack' it with a really 'high' dose of say 80mg for a few days and then taper fairly 'fast' down to say 50 and slower from there. PMRpro often advises a slow taper at lower levels as then it is easier to pinpoint the more 'exact' amount your body needs and not to 'overshoot' the right level at the time.

Best wishes