Steroid side effects: These are serious and... - Vasculitis UK

Vasculitis UK

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Steroid side effects

AmyS1 profile image
7 Replies

These are serious and the impact is often forgotten

Obesity

Diabetes

Cataracts

Osteoporosis requiring expensive medications eg teraparatide

Adrenal insufficency which is very serious

Mental health issues due to moon face etc

Insomnia etc

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AmyS1 profile image
AmyS1
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7 Replies
DorsetLady profile image
DorsetLady

True they are serious, but many drugs have serious side effects.

But for me - I was diagnosed with Giant Cell Arteritis (GCA) in 2012 after 18 months of excruciating pain and loss of sight in right eye…they gave me back my life and most certainly saved the sight in my remaining eye.

After 4 & half years of steroids, now off them and GCA in remission since 2016.

Yes I did put on weight, but now weigh less than I did before steroids.

No diabetes,

Cataract replacement on left eye - good as new,

No osteoporosis, despite being in susceptible group,

No Adrenal Insufficiency,

No mental health issues - although had I lost complete sight it might have been different,

Insomnia - for about 6 weeks when on high doses, now sleep a good 8 hours a night.

No after effects from steroids, and feeling better than I have for last 10years…

Bcol profile image
Bcol

It is important to remember that these are only "possible" side effects and not "definite/actual" side effects which may/will affect some but not others. Even for those who are affected there are ways to minimise and/or control the effects. As with all medicines you have to balance the actual side effects with the resulting improvement/cure of the illness. If living with the illness is a better option for you than the actual side effects then that is worth a discussion. For me, Pred took me from being carried into hospital in agony and unable to move, to having a relatively normal life back with no side effects at all as at this time.

AmyS1 profile image
AmyS1 in reply to Bcol

Please note these have actually been experienced by myself. The reason this has been requested by John Mills is to support nice approval of Avacopan a new medication more effective than steroids without the side effects.

Boss302Fan profile image
Boss302Fan in reply to AmyS1

The thing I take issue with is alarmist type comments and a push for acceptance of a drug under study. I also not sure I believe in the zero side-effect statement as that would be a first and darn hard to prove for everyone in the world.

True there are numerous potential side affects for prednisone, some more likely probable than others and some can be quite serious. Often most are controllable with other medications and of course the longer one is on prednisone the more likely the issue and severity of the side effects.

However, let’s let the FDA and EMA(?) do their due diligence and decide whether to to issue full approval after phase 3 studies. Let Doctors, Rheumatologists etc become educated about the drug and decide upon is usefulness, risk and prescribing instead of lobbying for its use?

I believe it should be the purpose of this site to make users aware of new drugs under study, links to research information and findings, so if approved (FDA has allowed limited use) so they can interface with their physicians.

It’s starting to sound like a lobbyist for the medication. Why?

PS: Seems there may be a liver toxicity issue and also Pfizer is also working on a pathway. Suggest those interested do an internet search and note date of publishment.

ir.chemocentryx.com/news-re...

pubchem.ncbi.nlm.nih.gov/co...

Bcol profile image
Bcol

Hi Amy, I hadn't noticed it was the reply to John's request for information.

DorsetLady profile image
DorsetLady in reply to Bcol

Just looked at original post - replies to that have been turned off, Perhaps a reference to the original post would have clarified that this one was a reply and so slightly less confusing.

Bcol profile image
Bcol in reply to DorsetLady

Yey would have helped, never mind . Perhaps I need to come off the Vasculitis site might stop me getting confused!!

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