Prednisone and bone pain - Withdrawals or AVN?

Hi there.

So, I'm 28 years old, and have until recently been a runner and horserider. Absolutely zero pain or joint issues prior to being on Prednisone. So arthritis isn't a good option for me either, needless to say...

I know... But going from a fit and active person to a geriatric in the space of a few weeks (thanks to Prednisone) seems a bit extreme. Trusting it'll pass.

Thanks - I am also hoping that, considering the time frame, it must be withdrawal (unless my bones are breaking at a freakishly fast rate). I also seem to be getting some tendon pain. It feels exactly like tendonitis, but only lasts for a few minutes at a time, before disappearing (and sometimes reappearing entirely elswhere). It's the most bizarre thing. I truly hate this drug. Wish I'd never taken it. Never again. 

Why were you prescribed prednisolone? Is it for a chronic auto immune condition that may flare again? Maybe there are alternative drugs? That said most drugs that tackle inflammation come with side effects. Prednisolone withdrawal is horrible, can and does create sporadic weird sensations in different parts of the body. Think of how natural cortisol works. It's the fight or flight hormone. Think about how our bodies normally react in stressful situations. Our head, heart and legs feel weird. And that's with normal and natural cortisol levels. You have had a temporary boost to those levels to tackle inflammation and now your body is trying to get back to normal but the signals are all awry. That's how I try to think of it. It does get better.

I was put on it as an 'experiment'. I developed peripheral neuropathy last year along with some other strange issues, totally out of nowhere (as an otherwise healthy, young and fit person with no known illnesses) and despite undergoing a host of tests, they can't find a single thing wrong with me. They seem to believe that it's something of an autoimmune nature - hence the test to see if the Prednsione would influence my symptoms. I am obviously upset, as I was at least still able to maintain some level of activity beforehand. Now, I hurt everywhere, which I didn't before.  

Have you had the bone pain specifically? How long did it take for your withdrawals to subside? Thanks for the encouragement - much appreciated.  

I'm not an expert but I do know that peripheral neuropathy can have many causes some of which may be inflammatory and should respond to steroid treatment. It's unfortunate that no one had managed to pinpoint what is causing your PN so you still don't have a resolution.

Oh, yes. Bone pain was a very unpleasant side effect of taking the drug. I was very ill this time last year (I have Crohn's Colitis) such that oral steroids weren't working so I had to have the drug administered in hospital by IV. That really did make me feel unwell - maybe it's a truism that you have to feel really lousy before you start to feel better. Once out of hospital I went back to oral steroids at a higher dose than yours then did a very, very, very slow taper. I know from experience that my symptoms can reoccur if I taper too quickly. It took a good six months to feel well again.

You said that medical tests have not identified anything wrong. Have you considered lifestyle and diet as contributory factors?

Yes, so frustrating... So, needless to say, this was really the last thing I needed. I was already in a panicked state about my nerves - now, this as well. All of my mobility is just under attack. I don't know what I'll do if it turns out to be AVN.

I have made major dietary adjustments for the last 3.5 months - zero gluten, grains, dairy, soy and sugar (honey only on occasion) - no cheating or eating out, and I have policed every food label. I gave up wine for a while too, but then reintroduced it, because I felt I should at least still be able to enjoy *something*. I was actually also worried about this recently, as I was told it's okay to drink alcohol while on Pred. I was on holiday for a week at my highest dosage, and had wine every day (normally max 2-3 times per week). Concerned that this might've contributed. In any case, the diet has done nothing, and the neuropathy has continued to progress (except while on Pred, which did actually help to some extent). 

I have a gastroscopy and colonoscopy lined up for next week, as I do actually suspect it has something to do with my gut - although my digestion hasn't been massively problematic. I've heard of many people with IBDs/Celiac developing neuropathy first, before any digestive symptoms occurred. So, worth a shot. 

G;ad you're feeling better! Health is such a tricky thing. I always, always appreciated my health and mobility, despite my young age. So to have it taken away like this seems doubly unfair.  

I was on steroids for 2 years before I had 4 spinal fractures and an Osteoporosis diagnosis. I've never had withdrawal pain as I know of though, and I was on VERY high doses at the beginning of my treatment for Vasculitis. Now only take 10mg a day, along with MTX and Truxima (Rituximab biosimilar)

My gastroenterologist also reckons I'm wasting my time, but I've read some bizarre accounts of 'silent' IBD/Celiac (i.e. other weird symptoms but no digestive issues until several years later). Also, those with neuropathy report that they never returned to baseline despite dietary intervention, so... it's possible. 

No orthopedic issues. I had a full spinal MRI earlier this year, with no problems identified. Any no pain prior to Pred. So there is no way that this is a coincidence. 

Unfortunately, I also hoped it was an anxiety thing at first, but even the neurologist said that no amount of stress can induce nerve infarction. However, stress can trigger a host of weird health issues - especially autoimmune diseases. Neuropathy is a symptom of an underlying illness/defect, so it's all about finding what that is. Ironically, I long to 'only' suffer from neuropathy... these joint pains are worse by far.  

Have a look at my updated post below. Your thoughts on the new symptoms are welcome.