Bit of a GCA dilemma

[PMR2011]

Hello, as ever so grateful for this forum! Not sure anyone has been in a similar situation but here goes.... Diagnosed in 2011 with PMR, then GCA in 2017 (hoarseness was a symptom). Have been on weekly Actemra for a year and off Pred since January, feeling good. Almost 4 weeks ago got a cold. Lasted a few days, lost my voice, so I held off on Actemra for 10 days. Have continued with hoarse voice (total of 3 1/2 weeks now) with Actemra at 10 day interval again. Is it the cold or is possibly GCA flare? Should I stay at 10 day interval or go back to weekly with Actemra? Feel fine otherwise. Any thoughts?

[PMRpro Ambassador]

The Actemra may be making it harder for your body to fight off the infection - it is a major immunosuppressant. Something to discuss with your rheumy I think. Not sure what they do with biologics in RA.

[Sandradsn in reply to PMRpro]

So GCA can appear years after pmr starts,even if pmr 'under control'?

[PMRpro Ambassador in reply to Sandradsn]

Afraid so. Remember the cause of the symptoms we call PMR is not "under control", just the inflammation being created.

[Sandradsn in reply to PMRpro]

Oh yes🙄

[polymy in reply to Sandradsn]

I was diagnosed with pmr in 2015 and have just been diagnosed with GCA last week so very definitely you can.

[PMR2011 in reply to polymy]

Yes, my PMR was well controlled on 3-4mg of Ored when GCA readers it’s head. Tho I believe my case is more Largd Vessel vasculitis as my symptoms were more generalized (fevers, deathly fatigued, hoarseness). It was definitely discouraging. Where I had PMR for so long then GCA I do wonder if I’ll be a “lifer”.

[PMR2011 in reply to PMR2011]

Okay, that should be Pred and reared!

[csy50 in reply to PMR2011]

My story is similar. PMR for 4 years and on 3mg pred when started to feel very unwell and breathless and GCA large vessel vasculitis diagnosed. Seven years later, with some mild PMR flares as I reduced the pred, into remission (? burnt out?) and 18 months later nearly able to join club zero (taking 1mg every 4 days! Any comment PMRPro? Is this doing anything?) having used the dead slow nearly stop reduction method from 6mg and finding each reduction resulted in a different set of muscle aches and tiredness which I believe was due to my body not liking the lower doses of pred and then latterly due to low cortisol levels as my adrenal glands started working again. Synacthen test showed they were able to work after 12 years on varying doses of pred. So no stage of the journey with PMR / GCA is easy but I hope this story gives encouragement to other "long timers". Never give up hope. I have had to change my lifestyle from frantic to a more relaxed one but am enjoying it more so that's a plus!

[PMRpro Ambassador in reply to csy50]

It MIGHT be doing something - one lady was on 1 in 3 days of pred, stopped it and the stiffness came back. If it were me I would just keep extending the days between VERY slowly and staying on each new version for a month or two to be sure! It is totally harmless at that level but you never know what PMR might do!

And good to hear that the adrenals are functioning after so long on pred.

[csy50 in reply to PMRpro]

Thanks Eileen - I will continue to go steadily, slowly increasing the 0 days although it is tempting to speed it up.

[Sandradsn in reply to polymy]

Sorry to hear that polymy😦

[maria40 in reply to Sandradsn]

Yes, mine appeared nearly ten years after diagnosis with PMR. So I'm still on the Pred reducing treadmill.

[Blearyeyed]

The Actemra is a immunosuppressant so does increase you likelihood of an infection and the time it takes to get rid of it.

There is a fine balance to getting the drugs right when you have an infection with GCA/ PMR on these drugs between taking enough at the right time to stop the infection increasing a flare of symptoms and allowing your body to fight the infection itself.

You haven't mentioned wether your infection is bacterial or viral , and what your other symptoms are now apart from hoarseness , so it is quite difficult to tell wether you may be suffering more from the infection or a flare with " cold like" symptoms now the infection has had chance to pass.

That is information that you can discuss here , but most importantly with your Rheumatologist who has more experience of how to regulate Actemra while recovering from an infection.

They may be able to return you to the weekly Actemra to deal with any flare up that will have happened in the PMR , even if the GCA is controlled , and be able to prescribe you with other medication to help clear the infection that is lingering on.

It is definitely worth having a phone back consultation with your Rheumatologist and then getting them to contact your GP with any additional prescription info they might need so you can get over this more quickly.

Take care , Bee x

[PMR2011 in reply to Blearyeyed]

Thanks Bee. No other symptoms, just the hoarse voice which is why it’s so confounding. Am having some blood work (checking thyroid and Interleukin6). Will see what that shows, then determine which of my specialists to see to sort this!