Hi,
I am GCA/PMR patient and currently taking 35mg prednisone and Actemra once a month. I have just tested negative for Covid after 5 days of testing positive. I am experiencing muscle aches in thighs and slight headache and eye ache. Looking for opinion on whether to up prednisone and treat symptoms as a Flare? If so, by 5mg? or much higher?
Thanks for any help.
1988jtb
NO WAY am I going to suggest anything to do with meds etc will leave that for the wise ones on here!But if you are really worried about,it,can you contact your doc or Rheumy and ask them?You are on a really high dose of pred so that is a real safeguard but hopefully somebody will jump on soon to give you their expert opinion.Trouble with GCA it makes us all a bit paranoid at any symptom doesn’t it,but please don’t think I am decrying what you are going through.Hope you soon get advice on here,xxx🌼😜
Thanks. I am going to reach out to Rheumy today, but today is day before holiday here so probably not too much hope for quick reply. But have to try. You are so right, GCA just makes us paranoid over every headache. Thanks again.
Also stress,muscoskeketal problems can cause this,I have a combo of both,but I just take a deep breath,make my self realise that if I am getting too concerned,there is always a reassuring person or persons ready to jump on and allay those fears or tell me that I am right to be concerned.Scary ain’t it,but you have the magic pred who is going to be your friend for a while yet.Good luck with phonecall,but please remember you will get very,very sound advice on here,they have all been/ going through it.Not a bunch of snake oil sellers or charlatans!Good luck!xxx💐😜👍
Being on such a high dose of Pred, I wouldn’t like to tell you what you should do with your dose. But I will say it is also completely normal for Covid to give you these symptoms for a week or few. I know, I’ve had it enough times and it isn’t ‘just a cold’ where one expects to feel markedly better after a week. It does like the sinuses and you can have a dry sinusitis that can give you headaches and eye pain without the mucus. This is why I wouldn’t suggest you go higher from an already high dose as a knee jerk reaction. You also need to see if they want to pause the Actemra too. Do you have a hotline to someone who can advise?
Thanks so much. This is my "first" round with Covid and luckily I was mostly asymptomatic. I did take an antiviral- Lagevroi (as vs Paxlovid) so that might have helped. I will try to reach doctor today, but it is day before big holiday here (Thanksgiving) so I don't expect a reply until at least Friday or most likely Monday.
As far as Actemra, I do monthly IV and next one is not due till the 11th of Dec.. So hopefully my blood work will be clear by then. We'll see. Thanks so much.
Out of interest, there is a phenomenon whereby there is a rebound of Covid after antivirals have finished in some people. There are various notes about this online but one version can be found on page 16 of the medical professionals info sheet. I’ve also seen it said that it happens in 1 in 5 people and different times after the antiviral had finished.
Have you tried ordinary painkillers to ascertain if it just after effects of Covid? Not sure exactly of of procedure of in US, but have you also asked about antiviral drugs - Paxlovid for example?
This link contains information on flare protocol should you require it, but you probably do need advice from rheumatologist on the situation -plus as SnazzyD suggests check on Actemra .
healthunlocked.com/pmrgcauk...
Thanks for your quick reply. I had forgotten about taking an ordinary painkiller and seeing reaction. Good-great- idea and I will try today. As far as antiviral, yes I was on Lagevroi (as vs Paxlovid) for 5 days. Just finished Monday, so that should be added protection.
I am going to call my doctor, but as I mentioned above, today is day before holiday here so probably not too much hope for quick reply. But will try.
I am not due for next Actemra IV until the 11th of Dec. so hoping my blood work is completely clear by then. In any case, I will reach out to Rheumy and get her take on this. Thanks again- It is so good to have someone to speak with about this illness. My spouse is wonderful but I know it is very wearing on him too.
Immediately after Covid I would be more likely to put it down to the Covid infection. However, since it is GCA we are talking about, I would be inclined to seek advice from your rheumy. And usually you would be told to pause the Actemra - or are you on monthy infusions?
Thanks so much. Yes, with GCA I tend to be very paranoid and watchful of every headache. As I mentioned above, I will reach out to Rheumy but it is day before major holiday here, so I don't expect response at least until Friday/Monday. In meantime I will try DL's suggestion on painkillers and see if that works.
With Actemra, yes I am on monthly infusion and next one isn't till Dec. 11th, so I am hoping all will be clear by then. I truly appreciate you taking time to respond, it is so comforting to have persons to talk with about these situations. Thanks again.
So you are still just in the first half of the Actemra cycle? That should he helpful from both aspects really, you can't stop the infusion effects for the Covid once its done but it is at its max for the GCA,
your primary doctor should be the one to answer that question. I never take medication without the advice of a doctor.
Symptoms of a GCA Flare?
Prednisone or GCA flare
GCA FLARE WITH PLUS NEW AUTOIMMUNE DISORDER
GCA Flare
