Steroid infusions

[Harold123]

I have just had a steroid infusion, and I am feeling really fatigued, can’t move off bed, how long does it take to kick in or give some relief. Is it normal to feel so bad after an infusion. I had 750mg. Hope someone can help

[DJK99]

Hi Harold - sorry to hear that, hope you have some help there? All I can say is I had oral Prednislone the other month for a month.. and the first week I felt utterly awful... drained and asleep alot of the time. Apparently it's meant to give you energy... er, that I did not find! I started to feel better by the third week... but was in a flare of SLE when I started it so maybe that was it. Anyway, I hope you feel better very soon. Drink lots of water ie 2 litres a day for a man (if appropriate for your diagnosis) as I found this had a positive effect on my energy levels and symptoms generally... not bottled water which is dead... tap is fine. All the best D

[Harold123 in reply to DJK99]

Hi DJK99,

Thank you for your reply, I have taken steroids by tablet before and I did not feel too bad. I had this by drip going into my vein, I thought I would get some energy from it, but I actually can’t do anything, I am sleeping all the time. What I would like to know is, does this get better when the steroids kick in. Maybe someone who has had this would know!

I’m feeling a bit desperate at the moment

[DJK99 in reply to Harold123]

Hi Harold - this sounds pretty awful. I'm so sorry. Yes, hopefully someone relevant will respond. Wishing you speedy improvement. Best wishes, Deb

[Harold123 in reply to DJK99]

Hi Deb, I really appreciated your reply, it’s so good to hear from someone, sometimes lupus can really get you down, and most people don’t understand it, I know we all go through bad times, and it’s so nice to have you talk to me

Thanks Anne

[DJK99 in reply to Harold123]

Ahhh Annie... not Harold! Sounds pretty major having intravenous.. Supposed to be a total "shot in the arm" and certainly was for my ma with the Big C. It's drugs though so not going to work for all I guess. Especially if you have organ involvement? I hope it starts to feel like it should soon.. do you have access to a Lupus Nurse? Or just email your Consultant - mine is very accommodating. Or call nhsdirectvand they'll get a nurse to call back. Please don't suffer on your own. I know ut's hugely isolating... that's how I wound up on here today.. . no one but fellow Lupus or with similar conditions understand I find -and fair enough ie how can they? Keep drinking water and eat as pure a diet as you can I say - lots of spinach, veg, fruit and clean protein - and no alfalfa.. always brings on bad flares for me. Apologies if I'm not being helpful.. I truly hope someone writes back who has been through your current situation. Best wishes, Deb

[Harold123 in reply to DJK99]

Thanks Deb,

I hope you are feeling a bit better yourself, it’s tough but nice to know we are not alone

Thanks for advice, I’m drinking loads of water, I’m starting to feel a bit better

Anne

[maye1]

Hi Harold,

I have not had IV steroids. I had a double dose by IM injection and started to see improvements after 12 hours. I agree with the above post - contact physician. I would also call a pharmacist - will be quicker and can sometimes be a better resource.

I hope you start to feel better soon.

[athi0110]

Hi Harold,

I have had a few of those a few years ago. I used to feel worse after the injection (I remember that I struggled to walk for a few meters on my way back home) but slowly, with time I felt better. So, do not dispair! Hope you will start feeling much better soon.

[Harold123]

Thanks for all the reply’s, I’m actually starting to feel better. At least I can stay awake for the day 😂 not easy this lupus