Reducing during Covid-19

[bunnymom]

I had assumed that with the stress of social distancing and the virus I wouldn't try and reduce any further. I just had to go back to 6 a few weeks ago after reaching 5.5 and feeling the pain creeping back. I was going to give it another go after a month. What are others doing? Are you still keeping to your reduction plan or putting it all on pause as you feel there is "too much stress in the air"? There are relativity few cases of the virus in our area so I am in a different place than many of you. Thanks for you support and wisdom as always. BTW this is the lowest I have ever been been dose wise and may be what I need at this time. Last year at this time I was at 7.5.

4 years 6 mg PMR

[PMRpro Ambassador]

I have to say that I work on the assumption that EVERYONE might have the virus - it just gets scarier when the numbers rise locally. It is felt here that up to 80% of people who have the virus don't know. That's a lot of people.

But in your case, since you have just not managed a reduction, I'd give it a rest for a couple of months before having another go.

[bunnymom in reply to PMRpro]

That was my original plan so I think I'll keep to it. Even after 4 years there is this little voice that mentions to me maybe I could go lower. Overall I'm happy about how I feel (80%) and look. Much better than last spring.

[YuliK in reply to PMRpro]

I just wish that there were more Covid19 tests available to put peoples mind at rest.

Let’s pray that someone will find a vaccine ASAP.

YuliK 😷

[Arflane97G]

Still keeping to reduction plan, fortunately all going well and am down to 4.5 mg, plan to reduce by 0.5mg a month now. Have husband and son at home who go out once a week to shop, otherwise they just go out to exercise ( husband can work from home and son is home from uni for the foreseeable future) and my lovely yoga teacher is teaching 3 classes a week via zoom. Keep in touch with friends and family via phone, Skype, WhatsApp etc. Have house full of books and games and wool so keeping busy and keeping exposure to the news at a minimum. Take care

[Marijo1951]

I reduced from 6 mg to 5.5 mg five days ago. At that time I was feeling relatively okay. The only difference is that the deathly fatigue has hit me even harder than usual, but there's no increase in pain or stiffness.

[SheffieldJane]

I have dropped to 3 mgs. The life of a carefree sloth seems to help my PMR symptoms.

[Grammy80 in reply to SheffieldJane]

Wow, Jane, good for you!! I've been off the Actemra for almost two months now but still at 12 mg of methylprednisolone. The virus is off the charts in Indiana (although my old home of Maine is getting fairly bad too). My life is MUCH less stressful here and I do rest a lot. I'd like to discuss tapering next time I see the rheumy. However, I don't think I'll go back on the Actemra. Take care! xo

[SheffieldJane in reply to Grammy80]

Take great care with the virus. I expect we’ll be at the head of the queue for the vaccine. Glad it is less stressful there. What decided you about Actemra in the end? X

[Grammy80 in reply to SheffieldJane]

No decision on the Actemra yet. I see the rheumy on December 1. When I saw him last month, I'd just been clear of the staph infection for about a week, so he just wanted me to stay with the program. My bloodwork does not show any inflammation, and I feel good but suspect I'll be starting to taper from the 12 mg of Medrol. I'm not sure what he'll say about the Actemra, I've only seen him twice, and one visit was an emergency.

I wonder??? Has anyone ever been treated with Actemra alone with no steroids? Is there any benefit to that? We'll have lots to talk about on 12/1.

💖💖

[PMRpro Ambassador in reply to Grammy80]

For GCA there is the risk that tocilizumab alone might not be adequate to reduce the risk of loss of vision quickly which currently makes it unethical since pred is known to do that if given soon enough. I think there has been one person on the forum on it alone - but don't ask me who.

[Grammy80 in reply to PMRpro]

I was hoping you would respond~~thank you. I hope you enjoy your holiday. xo

[PMRpro Ambassador in reply to Grammy80]

Holiday? What holiday?

[Grammy80 in reply to PMRpro]

Thanksgiving was what I had in mind🤔Is that strictly an American thing in November?

[PMRpro Ambassador in reply to Grammy80]

US only! We just get bombarded by Black Friday rubbish offers ...

[Grammy80 in reply to PMRpro]

😉 I was just bubbling over with holiday spirit and lost my head. The marketing knows no boundaries~!! xo

[SheffieldJane in reply to Grammy80]

Aren’t you being thankful for getting rid of us (Brits) or is that something else? 😂

[Grammy80 in reply to SheffieldJane]

You are funny....if it weren't for all of you~~~where would I be? xo

[PMRpro Ambassador in reply to Grammy80]

[SheffieldJane in reply to Grammy80]

Let us know what the advice is. I am so glad that you feel well!

[bunnymom]

Did you see the video of the sloth being carried around to meet the other zoo animals? The dolphins were quite glad to see him.

[Devedaaee]

I’m transitioning from PMR to RA, and drug wise from pred to MTX. On the BSR scoring that makes me a 3 and high risk, as my pred is currently at 8. So I’m keen to get it down below 5 to reduce my score to 1. That might not be so easy, bit of a Catch 22...

[PMRpro Ambassador in reply to Devedaaee]

Um - as I understand it, being on an immunosuppressant such as methotrexate immediately takes the risk to high in terms of "will I catch it?" and it isn't the current dose of pred that is significant - it is your history over the previous few months, which contributes to adrenal response to severe illness. By the time you get to 5mg one would hope the risk will be considerably less.

[Grammy80 in reply to PMRpro]

I visited my internist yesterday....and that is exactly what he told me Pro~!

[Hidden in reply to Devedaaee]

I agree with pmrpro...the dmards like mxt are the ones that shift you through the flow chart to high risk even if you are below 5mg of pred. I am on a dmard and like mxt shod be stopped if you get infection and is the pain potential reason you probably got the infection. Even on it you cant rush the taper despite no pmr. You might get lower but given mxt ...it's seems more important is social isolating washing hands etc.

[Devedaaee in reply to Devedaaee]

Thanks both. I was going by the BSR scoring system which gives 1 for MTX and 2 for 5-20 pred. I’ll admit I don’t understand why though...

[PMRpro Ambassador in reply to Devedaaee]

Which bit don't you understand?

[Devedaaee in reply to PMRpro]

I don’t know why these drugs are scored in this way.

[Hidden in reply to Devedaaee]

In this crisis it's the way they impact and manage the immune system and/ or inflammation from what I can see. So if you take mxt, at 50x the dose you are on it is used to suppress immune systems for certain cancers. The dmard I am on, mycophenolate, suppresses the immune system at higher doses as part of transplant rejection protocols. A lot if these drug were designed for other illnesses but have found to help others.

You need to check out Rheumatoid arthritis forum and sites too to see the impact of that condition so early in mxt treatment.

[PMRpro Ambassador in reply to Devedaaee]

Because they suppress your immune response - pred does at higher doses, mtx does it at any dose. When you are on mtx you are more likely to catch infections and less likely to be able to fight them off - which is why you are told to not take your weekly dose if you do catch something more than just a slight cold and definitely if it needs antibiotics.

In Covid-19 all they can do is support the patient until their own immune system can create enough antibodies to fight it off - and it has to do that from scratch. We have no innate protection against it from having had it before and there is no vaccine, nor will there be before next year. So the only effective protection is not getting it in the first place.

The pred is a bit different although it has some immunosuppressive effect. Over the months you have been taking it it has led to a suppression of adrenal function. When you have an infection (or trauma or illness) the normal response by the body is to produce a spike of adrenaline to help the organs fight to keep the body going but after long term pred that response is absent for many people, even at very low doses it doesn't recover well. Even after stopping pred altogether after tapering slowly it is often up to a year before this response functions reliably. So whatever you do trying to reduce the pred dose faster than you should, that historical effect remains for a long time. And reducing the pred too fast puts you at risk of a flare of the PMR and that in itself is a risk factor when you are in the ICU.

[Devedaaee in reply to Devedaaee]

Thanks again, both. Very helpful!

[Marcy47]

Just before Covid 19 started I had reduced to 6.5mg after 4yrs. Then I started to get painful hips and thighs again so upped my dose to 8mg for 2 weeks. This was enough to banish the pain after half an hour in the morning. This week I am alternating 8/7mg and will see how it goes. Hoping to be down to 5mg by August when it will be 5yrs since it started. Good luck xx