IV steroid drip

[amandamummy]

Hi everyone, hope you all had a good day, I did today and took my babies to the seaside. It was a good day and nice to feel a bit normal. I start an IV steroid drip on Tuesday as my Reumy doesnt understand why i'm still in pain on 60mg of prednisilone and loads other meds. Had Lupus for 18 years and Aps last month. He said to be on the safe side i need the IV as my bone marrow is getting involved and i have just got over Pleurisy also got protein in my urine but he didnt say how much but tested my glycoprotein in my blood. Anyone know what this means. Has any one had the Iv drip and how often will i have to have it. Felt like i was rushed when i saw my Reumy because he was 2 hours behind and wasnt listening to me properly. Been flaring up since October and having more symptoms this time. Also are there any groups in the Doncaster area or is it just Yorkshire.

[uzi41]

Good luck to you, it gives hope to know that you have got through 18 years, thinking about lupus all the time I think how am I going to get through this. Take care... Uzi..xxx

[amandamummy in reply to uzi41]

Thank you Uzi41 not had an easy 18 years but not seen a reumatologist for the last 6 years. Didnt think it would flare this bad though. Hope you are not having a rough time of it too xx

[uzi41 in reply to amandamummy]

Ive been fine for 7 years when I was diagnosed, last 9 months hav gon down hill and am on medication. But today has been bad alot of pain, I think it might be because I am back at work tomorrow. ..take care. Uzi..xx

[Coppernob]

Will be very interested to hear how you get on amanda. I had a short course of IV prednisolone recently (for lung issues). Should have been 3 consecutive days of 1g, ended up being 2 days because of hospital incompetence. But felt spectacular for a while (until shifted onto oral steroids).

Are they planning on making this a regular treatment for you, or a one-off? Or an occasional one-off, as it were, as the need arises?

[amandamummy in reply to Coppernob]

Thank you Coppernob, not sure how many times i have to have it or how much. Just hope it works. I will let you know how i feel when i'm home Tuesday xx

[Shann07]

I had IV steroids in the past when i was first diagnosed 2 years ago, over 3 days admission in hospital and then at the day hospital every 4 weeks for 3 months. It worked wonders for me i was in a bad flare after birth of my son which had effected my lungs and heart. It does take them a while to kick in, but once they did it was nothing short of miraculous. I hope they work as well for you, good luck for Tuesday x.

[amandamummy in reply to Shann07]

Thank you Sophieh, how long was it after the birth of your son that you had a flare. Ive had one when all 3 of mine were just reaching 1. This is the worst though the other two were just joint pains and was on prednisilone for it. I'm on loads of medication now and still the symptoms creep through each day. Hope it works too. What are you on now, Are you still having the IV. Have your lifestyle improved since having it. Hope so xx take care and thank you

[Shann07]

Hi, funny you say all flares happened when your kiddies turned one as I was admitted to hospital on my sons first birthday! I was in a very bad way as lupus was undiagnosed for around 7 years. This was my 4th baby (although lost first 2 at 30 wks) and number 3 was fine as you said i only had joint pains not too bad. After 4th baby lupus took hold of my whole body, i was in hospital for 5 wks, i couldnt breathe and was on oxygen, very scary. Now im ok, yes it has left long term effects, i have pleuritic type pain chronically etc, but on the whole im good. My lupus is very well controlled now im on plaquenil, aspirin, omeprazole, omacor, vitamin D, so nothing too bad. Rheummy did give me Cellcept but i was relunctant to take due to nasty side effects, thank goodness plaquenil kicked in after 4 months! I think your flare is probably cos pregnancy, dont worry they will get it under control iv steroids kicked lupus ass for me lol! Now i have a shot of steroids (iv) when needed (at day hospital) last one a year ago! im proof that you will bounce back with the right meds!! Good luck for Tuesday. PS Beware after IV steroids you will have an appetite like an elephant, take a packed lunch lol!

[rlupus]

Hi Ya

I have got lupus had it for well over 22 years now but the last 3 years have gone down hill i am on 26 drugs driving me made i am quite a complex case though, i have lupus ,ant phoslipids, chronic obstrutive airways, and loads of joint pains, i take anything from 60mg to 120mg depending on how i am most of the time winter is very bad and end up being on 120mg pred,also my warfarin control is bad i have to take 50mg daily and still end up with clots, i have had 18 in legs and 4 in lungs, but i have to keep going its tuff but dont give up.

Keep well

XX

[rlupus]

Sorry was ment to say iv is a quicker way of getting it into your body to help with pain.I have had this done when been admitted to hospital. xx