Back on prednisolone

[lucia_m]

Hi all. Just wanted to have a little moan as I’ve just started my third pred course of the year and feeling a bit sorry for myself. I don’t feel that symptomatic, just a bit tight and coughing a bit, but my peak flow is pretty low - doctor thinks it’s due to a seasonal allergy (fungal spores).

I’m already on high doses of inhaled steroids and lots of other meds - I wish they would do the trick as I’m sick of these recurring exacerbations, and I worry about the side effects of repeated pred bursts. I’m seeing a consultant in a couple of weeks so I’m hoping that’ll help. In the meantime am fed up!

[emmasue]

I know how you feel. I've just come off a high dose only to have to go back up again. I had flu B in March and since then I haven't been able to get well and stay well. It's so frustrating. I hope you feel better soon.

[Lisacharman]

I also know how you feel I have had 5 weeks clear of steroids since jan 2018 and spoke to consultant today and now staying on 30mg until I get the mepo so I have all the side effects weight gain etc etc xxx

[EmmaF91 Community Ambassador]

I too know how you feel... I’m meant to be on a maintenance of 10mg but have only hit that level 2-3 times this year - got excited in June as we discussed slowly reducing to 0 but then the summer hit and I was back up to 30/40mg for a few weeks 😞.

If you’re on pred constantly (aka multiple tail off courses a year) it may be worth asking about gastro-resistant pred (it’s red/sugar coated). It can help lower the risk of GI issues if nothing else! Otherwise, increase calcium intake, take multivitamins and hope for the best.

Hope you start to feel better soon x

[lucia_m in reply to EmmaF91]

Thanks for your reply, what are GI issues please?

[EmmaF91 Community Ambassador in reply to lucia_m]

Sorry - GI - gastrointestinal (ulcers/heart burn etc)

[lucia_m in reply to EmmaF91]

Ah, thanks

[Lisacharman in reply to EmmaF91]

I am on all the bone protection medication and my maintenance dose is not going to be anything Lowe than 30mg but it is looking more like it is going to be40mg I am being referred for mepo but consultant called to see how I was today and to book a ct scan as she was going through all of paperwork she needs to refer so not great news that it hasn’t been done I will ask about the coated pred I am on lansoprazole due to other medication i now take 28 tablets in a morning and another 32 throughout the rest of the day so I am quite covered I hope good luck and I hope you feel better soon xxxxxxx

[lucia_m]

Update: took the first lot of pred around 12 hours ago and it’s made such a difference - my peak flow’s up 50% and my chest feels really clear and open, for the first time in weeks actually. A reminder that pred does have its uses! Kind of wish I could sleep instead of bouncing off the walls but I guess you can’t have everything.

Thanks for your support everyone - makes such a difference being able to post here where people understand what you’re going through.

[mackro]

Meantime consider some light breathing exercise to excite your lung. It helps flushing-out the phlegm or mucus which is probably responsible for your coughing and chest tightness.

[gamba]

I understand - pred really affects my mood and I dread it! Hope you feel better soon x

[omahjoa]

I have been on pred since October 2016. Every time we reduce I get sick so up we go again. Its a constant roller coaster. Been approved for Mepolizamub. Just waiting for a,start day. Hoping this will mean eventually I will get off pred. Hope you get things sorted soon hun xx