Steroids and increased vulnerability??

[Allydee]

Hi - I started hydroxychoroquine 7 weeks ago and also been on 1000mg of naproxen. My energy levels improved in the mornings but my knee joints didn’t and also felt so weak by 3pm (which you can’t give into when you live on your own with two lively dogs). I asked the GP to go back on another 3 week course of steroids to see if that would help. I have been working from home but do have the option of going into a (COVID safe) work environment but because I read on the UK lupus website that steroids can increase vulnerability I chose to stay at home. However, the stress of dealing with work at home alone is having an impact on my mental health and I want to get out the house and go into work. Not sure what to do?? Any advice or experience appreciated please

[Spanielmadlady]

Hi hydroxchloroquine can take up to 6 months to get it's full effect.how long have you been on steroids ? as short courses dont Interfere with your immune system as much as long term.im steroid dependent after being on them for over 6 years.i live with 2 lively Springers.sounds to me like you need to nap to give yourself a boost for the rest of the day x

[Allydee in reply to Spanielmadlady]

Many thanks for your reply... I had no idea the hydroxychoroquine could take that long, I thought by 12 weeks I would feel the full benefit!! I’m only on a short course of steroids so I’m going into work tomorrow how do you keep your dogs entertained when you’re too drained to play?

[Spanielmadlady in reply to Allydee]

It takes 8 weeks to start to work and 6 months for full benefit.although they are seniors now they are both still energetic.we go out in a morning which is our main walk.im lucky I live near the beach so they can play and run without me having to walk too far.i will often come home and need a nap.then its round the block after tea.a play in between if I can manage it. X

[Allydee in reply to Spanielmadlady]

Luckily I have a dog walker during the day, but after work they want to play and be entertained for a couple of hours... they’re 10 year old jack Russell’s and still demanding!!!

[Spanielmadlady in reply to Allydee]

Millie is 11 and hyper and marley is 10 and is more sedate but just doesn't want to stop.my son will take them out if I'm not well enough but they wont play with him 🙄.I limit their play after tea to about half an hour then toys go away x

[PMRpro]

I think the story on steroids has changed since the start of the pandemic - steroids are being used to treat Covid - and if you are admitted while taking steroids your steroid dose is doubled in most cases (depends what dose you are on of course). No-one has any immunity to Covid unless they have already had it so in terms of catching it it doesn't really make much difference - the role of the immune system is then to fight it off and there were concerns there but they have faded since steroids have figured in management.

As someone else says - short term steroids are a different matter when it comes to the long term effects on the immune system anyway.

[Allydee in reply to PMRpro]

Thank you - lots of confusing information out there so really good to hear it from people who understand!!!

[heatherevans28]

As noted above, hydroxychloroquine takes months to work fully. I am horribly allergic to it unfortunately but it took over 3 months of taking it before it built up enough for my body to have that reaction. For some it can take a full 6 months to work properly.

It's important to say that the guidelines for those of us more at risk of severe illness from covid are currently no different to those who are not at any increased risk. However the old rheumatology guidance for being extremely vulnerable (shielding etc) is still available if you wish to search for it. When it comes to using steroids there was 4 week minimum stated for increased risk, as well as a dosage of 20mg or more. I am unsure what dose you are on but if it's for 3 weeks then you would not be classed as being in any greater risk of severe illness from covid, than you were before.

If you were on another immunosuppressant then this dosage would have been 5mg or more, but the 4 week rule still stands. Hydroxychloroquine is not an immunosuppressant so do not worry about that.

If you are able to stay at home then I know the government are encouraging it, but it's your decision to make. Maybe going into the office for one or two days a week is an option? Or maybe it's best for you to be in the office everyday. Either way, please don't let this short dose of steroids dictate that choice for you.

[Allydee]

Thank you they gave me a steroid card as it’s the third lot I’ve been on in 4 months... at least for now I can move better on the stairs...