Friday, 20 March 2009

Prednisolone the friend and foe

Many a ‘loopie’ has to take Prednisolone at least at some point and often long-term, to control their symptoms - me included. If you don't take it now there is a strong likelihood it may be necessary at some point.

But Prenisolone introduces yet another lupus paradox: the very drug that saves your life (and let’s face it, regardless of what you feel about it, it does seem to help keep things in check) simultaneously messes you up in one way or another. The only way to describe my own feeling towards it is most definitely as a ‘love / hate relationship’ and I have found this is true for others too.

The alarming potential long term side-effects such as osteoporosis, diabetes or stomach ulcers are one thing, but the future is unknown and we can but hope for the best. Nonetheless, we are still able to take the best measures we can to help avoid such outcomes, such as taking calcium supplements, eating a healthy diet and taking medication to protect the stomach lining.

But it seems the more immediate and pesky symptoms that plague us in our daily lives are the ones that really bother us and give us a sense of righteous indignation. I’m talking insomnia, acne and weight gain for example, not to mention other common nasties like depression and / or ‘mania’. I can’t help but feel any of these is like adding insult to injury!

Still like it and/or loath it, until our dream ‘wonder cure’ is invented (and I am optimistic that one day it will) many of us have not much choice but to live with our ‘friend and foe’ Prednisolone if we want to keep the lupus symptoms under control. All we can do is approach it in a pragmatic way.

I suppose it goes without saying, first and foremost any side-effects should be discussed with your doctor, then take on board their advice. Beyond this, in order to reap the benefits of prednisolone, you have to seek out ways to cope with the side-effects and manage them as best as possible. My success in achieving this has varied depending on the particular side-effect in question. For example, each time I think I’ve cracked insomnia (the kind where after going into a deep sleep you wake up at an unearthly hour say 4.00am, as if you have an inner alarm clock programmed, only to finally drop off again 5 minutes before the real alarm goes off) for it to come back and start plaguing me all over again, so I am still working on that one. With others I’ve had more success. So it is my intention to do a post looking at each side-effect individually and considering how best to tackle it. I am going to kick-off with avoiding weight gain as this is the one that seems to affect most people to some extent and certainly gives rise to the greatest upset. Watch this space.


Mirela said...

Hi Daisy,

oh prednisone (as it is called in Canada where I live) is a drug that I am very afraid of. I am on it right now. As you said, I am not sure whether it is a friend or a foe. Without it I was in pretty bad shape. I am about 164 cm tall and during this flare I dropped to an alarming weight of 93 pounds (used to be between 105-110). I also had swollen lymphs the size of tennis balls and of course could barely walk from the pain in my joints (knees, feet, elbows, shoulders, fingers and wrist). I am not sure why my form of lupus has aggressively attacked my joints. That was the hardest thing for me to accept, as I used to run competitvely, do yoga and snowboard. There used to be almost no athletic challenge I wasn't willing to attempt. The hardest part during my first serious flare-up (started about December 2009)were the questions: "will I ever walk again?", "could this pain get worse than this?", "is life as I knew it completely over?". The doctor wasn't very helpful with these questions. He would always answer with a question: "do I know if I will be run over by a car today?".
Of course I was prescribed prednisone. They started me at 15 mg (pretty low dose). It worked almost immediately because after 3 days, I could walk again. I'd say I felt 60% of my old self again. However, I still couldn't put on even a pound. When on this dose, I tried a 4000 calorie diet and still nothing happened with my weight. As we lowered it to 7 mg it became clear (old symptoms reappeared) that it did not work, that this round of prednisone did not induce the remission that I so desperately wanted at this point. Two weeks ago I was assigned a new dose of 20 mg. Only now did I see my weight increase to 97 pounds. I hope to pass the 100 mark this coming week. I have even started yoga again and my walk is normalizing (I lost a lot of muscle and it feels like I am re-learning how to walk again). I still hope that I will be back at my old athletic self again but sometimes I wonder whether I am setting my hopes too high. Prednisone seems too good to be true. When a drug works this quickly and efficiently you have to wonder what its dark side is. I was always the person refusing to medicate with a pill for a headache, so of course I read and re-read prednisone's side effects. If I would have been even half-functioning I don't think I would have taken this toxic drug. Now I am scared of lowering the dose and I got anxious right before I needed a refill. As you mentioned, I keep taking vitamin D (I am deficient) with calcium and hope for the best. My mother has osteoporosis, so I fear this drug could damage me in that sense. About the skin: pre-lupus I had a very clear complexion. Since lupus my complexion got very weird. I have these small, superficial lesions that scab easily. I don't think it's acne, since these weird lesions are not infected and are only on the surface. Prednisone has actually improved my skin for me (or so it seems). You mentioned skin problems while on prednisone. Did they only come on while taking this drug?
I realized I wrote a "novel" and that I could go on. For example I'd like to find out what you think about its effects on fertility. Most women diagnosed with lupus are of childbearing years and some of us (myself included) might want kids one day. This drug seems to cause some fertility problems but I am not sure how serious or irreversible these are (might depend on dosage, prolonged use etc). OK, I should stop here for now. Thank you for writing about this drug. I'm glad I am not the only one worried about it.


Daisy Seale-Barnes said...

Hi Mirela

It sounds like you have come through a terrible time with some incredibly nasty symptoms. My heart goes out to you cos I've been there, and I know just how frightening it is. It is especially hard to comprehend when you are usually an active person with a very full life.

Your doctor's comments when you asked him about the future sound decidedly unhelpful! My personal view is that once you have a diagnosis your future prospects automatically improve because you can get the right help and acquire the right mindset.

Firstly, we are lucky enough to live in a day and age where there are medicines that can treat the symptoms (OK they certainly have their drawbacks, but we are definitely better off with them than we would be without) and they make things much better (just look at the statistics). Just be sure to keep demanding the best care from your medical professionals.

Secondly, now you know you have lupus, it is vital you factor it into your life (denying it seems to make it worse) and work out your priorities. Then, if you are prepared to make a few adjustments and compromises here and there, you can live a really good life and do much of what you want. It is unlikely life will be EXACTLY the same as it was before (mine certainly isn’t, but then nothing stays the same forever anyway) but you'll definitely be able to have a good life. You may have to take it a bit easier, but I certainly wouldn't throw away your snowboard just yet! Yoga is great and you can find it helpful however poorly you are - I intend to write about this sometime.

The most important thing for you to consider about prednisolone is that by the sound of it has helped dig you out of a nasty hole and relieved your lupus symptoms, which offer a far more immediate threat especially if left untreated. Clearly, my latest post about prednisolone and weight gain is clearly not at all applicable to you (all loopies are unique!) but if you do develop side-effects address them as they come.

With regards to fertility, I am not a doctor but as far as I understand it from my own doctors the risks of uncontrolled lupus on pregnancy far outweigh those of prednisolone that has been well prescribed in reasonable amounts.

If you want to email me personally about anything you can get me on

Take care of yourself and please keep posting – it is nice to get feedback and ideas for things to write about.
Daisy x

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Michelle said...

Thank you for your posts on this. I just started a prednisone treatment after being diagnosed with autoimmune hepatitis and cirrhosis. I'm running scared of both the disease and the treatment, and am trying to manage both safely and healthfully.

I've started a blog of my own focused towards my personal experiences with prednisone, mostly because I can't find much out there that relates directly to liver disease.

I'm linking to this post under my blog's "resources" page. Thanks again. Every personal experience I read about helps me deal with it all.

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