Anyone have monoclonal antibody treatment - I hav... - PMRGCAuk

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Anyone have monoclonal antibody treatment - I have COVID and don't know do I take my prednisone?

bluegirl7 profile image
12 Replies

Hi all, Found out today I tested positive.My primary has set me up to have monoclonal antibody infusion tomorrow am because of PMR and also my age - 71. But I forgot to ask if I should take my prednisone. I am down to 2.25. I read in a journal last year that they tried tried treating COVID patients with Pred and if they were severely ill it helped but if only mildly ill it made them much worse. Something about the immune system doing a reversal or something.

Anyway, I am not sure if anyone at the Center or my primary will know what to tell me. I am trying to reach my rheumy but I think he is away. The idea is to prevent me from getting symptoms and sicker.

Anything anyone can tell me is always appreciated. I just remember when I started on prednisone 3 years ago that we should never skip a dose that we could have a heart attack or something. I am tired and not thinking clearly. I had the test only because we were going to Canada!! Cancelled that today!!! No vaca for another year!! I am vaccinated - 2 shots of Moderna last February and I made antibodies - in May I had 2232 so maybe they have helped me not to have symptoms.

Thanks anyone and everyone!

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PMRpro profile image
PMRproAmbassador

If you have Covid then the normal procedure for us would be to follow the sick day rules and increase the pred dose because of adrenal concerns. Nothing to do with heart attacks. You have also to remember that those observations were made in otherwise healthy people - which we are not. Not taking your pred would increase the risk of adrenal insufficiency problems. The body needs a spike of cortisol to help it deal with the infection.

From my understanding of the MAB treatments the pred wouldn't affect them at all - the antibodies are already created.

Edited by admin: PMRPro is referring to the "Sick Day Rules" that some rheumatologists in the UK use. You need to discuss any change to your medication with your own rheumatologist.

SnazzyD profile image
SnazzyD

So sorry about the trip! Firstly you can ask that question when they give it to you. The prescriber and giver has to check all that stuff out. Secondly the Pred and antibody treatments are doing different things. Steroids don’t attack the virus proteins but is given to support the body which can into a state of unhelpful inflammation, particularly in the lungs. It’s very commonly used so shouldn’t be an unusual issue for the medics. If anything they may increase it or add in a different one and that dose is not very much.

As PMRPro explains, skipping a dose, even one that small is not a good idea.

Also, try to get off the panic spiral - You have no symptoms, that’s great!

Chris_1236 profile image
Chris_1236

I was just released from hospital last Fri evening after being admitted with covid and acute respiratory distress. I have been on a pred taper for several months for PMR and was at 25mg when admitted.

The ED immediately administered an infusion of Regeneron MAB. This did nothing unfortunately coming too late. My sat. levels dropped to the low 80s and I was started on 3L O2.

Long storyshort, I ended up at 15L before it was over. I also too 6 infusions of Remdesivir and 6 abx cocktail infusions.

During this time, the doctor upped my pred to 40mg. There were no interactions and the elevated dose helped very much.

I presently have lung damage which should heal with time. And I was able to immediately taper back to 25mg and resume my long taper for PMR.

I asked for and was given Fenofibrate at a rate of 145mg/day. This drug appears to alter the metabolism of the lungs to reverse the effects of covid. 48 hrs after my first dose, I was off of O2 and back on room air with 95% sat. Your mileage may vary of course. Here's a link for more details on this:

medicalxpress.com/news/2020...

I hope this helps. Your experience will be different no doubt.

Chris

PMRpro profile image
PMRproAmbassador in reply to Chris_1236

Glad you are improving - but I do have to ask:"I have been on a pred taper for several months for PMR and was at 25mg when admitted."

Are you sure it is PMR you have? 25mg is the top of the starting range for PMR - if you needed significantly more than that, then the diagnosis of PMR must be questionable.

Chris_1236 profile image
Chris_1236 in reply to PMRpro

It's a bit of a story. My pcp originally diagnosed me and prescribed a quick 40mg taper. That nailed it for a few days. Then back it came. So she did another quick taper. This didn't produce any durable results. At this point she put me on 30mg for a month.

Always the symptoms responded immediately.

In the meantime I found this site and began tapering. I got down to 5mg and everything was controlled. Then I dropped to 2.5mg and things exploded.

later after more research here, I realized that I was drive too hard for 0mg. So I went back to 30mg and started a long taper.

It took months to see a rheumy. When I did get in, she was in such unbelief that a 52 year old could have PMR symptoms that she couldn't focus on the issue. She did code my diagnosis in her notes as PMR and said to keep on my taper working towards 10mg for now.

Next week I will drop 5mg to 20mg.

Thank you for your concern!

Chris

PMRpro profile image
PMRproAmbassador in reply to Chris_1236

Why on earth it is beyond doctors to CHECK how to manage PMR? PMR is a chronic disorder, it lasts at least 2 years for 80% of patients - and the others who manage to get off pred in under that are at a higher risk of relapse. The guidelines say "over 50" as the age range - and a rheumy who is unaware of such facts needs some retraining.

I'm sure you have realised by now that your 5mg drops are pushing it - not more than 10% of the current dose is much more comfortable and likely to work.

Chris_1236 profile image
Chris_1236 in reply to PMRpro

Right on the 10%. I'll probably do two drops of 2.5mg rather than one of 5mg.

I was amazed at the lack of knowledge on the part of the rheumy.

My pcp I can understand. She's never had a case and so we were fishing at first.

Thankfully I have not suffered any prednisone side effects to date other than moon face. I realize that is unusual.

PMRpro profile image
PMRproAmbassador in reply to Chris_1236

Your PCP can't have many elderly patients then! It is the most common cause of rheumatic symptoms in the over 60s.

Chris_1236 profile image
Chris_1236 in reply to PMRpro

She doesn't. She's quite young and just recently moved to the direct-primary-care model of business. I like working with her. She is very open to listening to her patients and is not stuck in "The book."

She will learn.

This is a wonderful site!

PMRpro profile image
PMRproAmbassador in reply to Chris_1236

She will - and if she wants some reading, we'll happily join in!

PMRpro profile image
PMRproAmbassador

"I don't think the sick day rules apply to COVID cases"

Why on earth not? The sick day rules are for any infection/trauma and whatever. And there are at least 2 or 3 people on the forum who were admitted with Covid last year and immediately had their pred dosage increased in line with the Sick Day Rules of doubling up to a maximum of 20mg.

MrsNails profile image
MrsNails

There is a Section in the Sick Day Rules that pertains to Covid-19 Infections but obviously this would be done in conjunction with your Dr as you’d be taking advice if you have Covid-19

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