reduced prednisone

[Numptybrain]

I’m now reducing prednisone from 20mg to 15mg only second day and my stomach has swollen like a balloon making it very uncomfortable for me to move around. I really don’t know what to do. Has anyone else suffered this?

[DorsetLady PMRGCAuk volunteer]

No can’t say I have, but I doubt the reduction from 20mg to 15mg has helped your overall wellbeing.

[agingfeminist]

If you weren't on pred would you go to the doctor with this sudden change? I think the answer is yes. Don't blame everything on pred...dropping the dose is unlikely to cause this odd effect. Has it happened before? Have you changed your diet in any way? perhaps share with GP.

[Numptybrain in reply to agingfeminist]

You are right, my stomach looks like I am about to give birth and it’s painful too, it’s abnormal. I’m ringing GP today for advice.

Thanks

Wendy xx

[PMRpro Ambassador]

Don't think it is something you can blame pred for - medical advice needed really.

But it is recommended tapering steps be not more than about 10% of the current dose - that is 25% and is likely you will feel some effect. A reduction from 20 to 15 may well be common in normal short term use of pred but it rarely works well in PMR and it is usual to go via 17.5mg and even that is hard going some times.

[Numptybrain in reply to PMRpro]

It’s what rheumatologist put me on one month 20mg another month 15mg then tapering but my stomach is huge and hurting and I feel swollen. My left ankle keeps swelling all which didn’t before. I rang my GP practice and some new receptionist told me to ring my rheumatologist! I argued with her but she wasn’t having it so I’ve left a message with rheumatology but goodness knows if they get back to me in the meantime this strong woman is now a blubbering mess. My breathing is worse than ever so not sure if the fluid on the lungs is worse.

Wendy x

[PMRpro Ambassador in reply to Numptybrain]

Well I know what I would do faced with that sort of idiotic response from a receptionist!!! Complaint time with a suggestion she may need some retraining ...

If you have breathing problems, how bad are they? Bad enough to justify 999? Sudden abdominal swelling might also be associated with fluid so whatever the receptionist thinks - with your history I don't think the rheumy helpline is appropriate.

Only you know how bad it all is - but I don't think it is unreasonable to call 999.

[Numptybrain in reply to PMRpro]

I’m so fed up with being admitted to hospital, I’m checking my oxygen is 92 so would justify a trip to pleural clinic although I do have an appointment for Friday for them

[PMRpro Ambassador in reply to Numptybrain]

Under the circumstances, that receptionist was totally out of order. At present, I'm sure the pleural clinic would rather see you now than as an emergency admission!

[Numptybrain in reply to PMRpro]

Pleural can’t get me in but are trying to contact rheumatology nurses for me and have advised I attend urgent care so looks like I have no choice but to sit in hours of waiting.

[Viveka]

There's also 111 for advice if you don't feel it's an emergency. Also, suggest get back to surgery, list symptoms, don't link it to pred as the headline, and if the receptionist still won't help ask to speak to practice manager. Appointments will be gone but need assurance about tomorrow.

[marionofnorwich]

Are you taking accompanying medication such as Alendronic Acid? Either that or Lansaprazole made my stomach balloon out so much that I now have an umbilical hernia

[Numptybrain in reply to marionofnorwich]

Yes allendronic acid and lansaprazole, my stomach is still enlarged but respiratory are saying it could just be the lining of my stomach is inflamed with Serositis.

Thank you for your information

Wendy xx

[marionofnorwich]

I stopped Alendronic Acid. My stomach blew up the first few times I took it but at that point everything was new and I couldn't really tell what was what. But it did settle down but eventually I found out that I didn't actually need AA and taking it as a precautionary drug has definite downsides so I asked for a DEXA scan which showed I didn't need it. The Lansaprazole gives me over soft and sticky poops so I have stopped that too and I take live yoghurt with pred. I don't have any stomach symptoms so have fingers crossed that my stomach is OK. Now I pay more attention to my gut biome than my pill box - but that is just me!

[Numptybrain in reply to marionofnorwich]

unfortunately my Dexa scan showed severe osteoporosis so I definitely need to take it and unfortunately I may end up on prednisone indefinitely to control the amount of inflammation in my system.

[PMRpro Ambassador in reply to Numptybrain]

Just because the inflammation is high just now, doesn't mean you will be on pred forever and they may find a better medication to reduce the amount of pred you need.

[Numptybrain in reply to PMRpro]

I hope so it’s took over a year and numerous hospital admissions to get to this point and the relief I felt yesterday when they told me the fluid had reduced was overwhelming, I’m still on a very long road to recovery as I am very breathless because of deconditionng due to numerous infections on the way etc but Rome certainly wasn’t built in a day and I’m sure my stomach will sort itself out eventually, it’s just more uncomfortable than anything else and unfortunately putting more pressure on my already damaged spine.

Thank you for being so understanding and explaining things, I have really struggled with all of this, especially the anxiety of not knowing if it was mesethelioma at first. I’ve definitely been put through the mill.

Wendy x