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!
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lucia_m
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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.
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
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.
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
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.
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.
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
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