Hi all,
I hope you're all managing ok. It's a manic time of year.
I'm having a bit of a rough time at the moment. And having a bit of a dilemma over whether to take a course of prednisolone or not..
I'll try and summarise.
I've been flaring for months due to med overhaul, and since September have come down with a number of things- a skin infection that required six weeks of antibiotics, followed by two weeks of nausea and sickness due to a drug interaction wrecking my stomach. I just about got over that for a couple of days and have now come down with flu.
I haven't felt this ill in years, I think I'm quite run down.
Because I've been ill for a long time, my infliximab infusion hasn't been given for over nine weeks now. My inflammation is now really bad (eyes and joints).
My med team have suggested a course of prednisolone, since I'm off all other meds.
The dilemma is I know from previous experience that prednisolone really impacts my mood. It can make me feel quite low and stressed.
I'm already very low at the moment being quite run down, teary alot, im having major stress at work, and then last night I found out someone I'm very close to (my age, in his 30's) has been diagnosed with cancer.
I feel like I'm really pushing myself to try and keep myself together, and I'm worried that steroids would make things much tougher if I add them in at this time.
But equally I have my Consultant who is keen for me to start them because my condition is so bad, theyre concerned, and with having flu I can't go back on any immune suppressants until I'm much better.
I know I have to make the decision myself ultimately, its hard when you feel quite alone and overwhelmed.
Apologies for the very long message,
I'm having personal counselling as I'm aware I'm feeling quite alone, and it's helping me cope, but I'm still having the dilemma over the steroids.
(I'm taking steroid eye drops, but its not controlling things at all)
Do any of you find you can tolerate lower doses of steroids mood wise? They've suggested I take 30mg a day :-/,
Best wishes,
N
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Go easy on yourself, this is a difficult time for you, and I hope you are able to reach a decision one way or the other before too long. Sometimes the indecision is the worst bit!
It's many years since I took oral pred and, back then, they didn't give such high doses. I think, in your situation, I'd want to chat to someone in the know to ask, firstly, if the 30mgs was necessary or if a lower dose might work. I'd also want to know how long I'd be expected to stay on a high dose. It might be that, with a lower dose, you'd gain the benefits without the unwanted side effects but I really don't know. I'm only surmising.
Your GP might be your first port of call.
Good luck and let's know how things are progressing. You are not alone. We're here with you.
It's a good point about balancing things out.
If I'm well enough I'll hopefully be able to go back on my meds Christmas week, and they'll take a while to kick in, if I have them.
I think going to see my GP for a chat is a good idea. He retires on Monday, but there will be a locum in place. I think I'm just struggling to make a decision probably mostly because I'm so tired.
(I was awake all night coughing again which my neighbours must've loved..!)
Starting on a lower dose, or perhaps for just a few days to see how I go might be a good compromise. I think I can probably just stop them if I've been taking them for less than 5/6 days.
I've made myself rest today completely, to give my body a chance to start to fight this off, and I feel calmer for having done that.
Thankyou for your kind comments and support.
I hope you can come to a decision that's right for you, PetiteN.
Feeling quite poorly today to be honest, very faint, nauseous and wobbly now, so I've been in bed since 3pm.
I think I'll be trying to get an emergency gp appointment tomorrow to discuss the steroids, as well as being a bit concerned about this virus.
I live on my own, but my Mum has been phoning twice a day to check on me which is good.
Hope you both had an OK weekend.
Hi,
Sorry about the delayed response. I've been pretty ill, it floored me a bit, but I'm definitely on the mend! :-) Im functioning again, just waiting for the cold to go. I think I've bought half of the contents of Boots over the last couple of weeks! ;-)
I spoke to my GP briefly, but they didn't really know what to advise, so I haven't started the prednisolone, as I was sure it would actually make me feel more low.
I've turned a corner, so that's helped me feel a bit better mood wise. Unfortunately I can't have my infliximab infusion next week, as I'm still full of cold and still coughing a bit, but it's not worth the risk. It's been postponed three times now I think by Christmas I should've kicked this virus completely (hopefully!) So my next infusion won't be until the new year.
Three months off all meds now, so it's been tough, but I've coped somehow, and I'm looking forward to things being alot better from January onwards, just trying to look forward really.
Thankyou for your listening ears both, I was feeling pretty bad for a while, and it does help to sound out your thoughts doesn't it.
Nearly Christmas :areindeer: :-)
Thankyou.
Yes I definitely feel more like myself again :-)
I think this long, rough period has made me develop my coping strategies even more actually, which is quite empowering, as you said.
I hope you have a lovely Christmas :xmas_cool: