Steroids and effects on bone density

[Maceygrey]

Hi all. I have just joined this group in this category of crohns

I have suffered with crohns for approx 2 yrs. diagnosed Nov 2017 following colonoscopy. I’ve just had my 2nd hip replaced 4 wks ago. first one done in May! It’s been quite a year !!! My crohns flared up just before I went into hospital and has been dreadful ever since which you can imagine is a challenge on crutches !. It had calmed down as a result of being on the keto diet for 2 months and I was really hoping to manage it with diet. I am on lansoprazole and pentasa and cocodamol for hip pain which takes the edge off crohns pain.

My consultant for crohns wants me to go back on steroids (I had 3 courses last year - 2 made me ill (cortiment / budesonide) one worked (prednisolone) but I was hyper so much so I sprained an ankle, fat and had moon face).

My hip consultant was alarmed at my steroid use and suggested a DEXA scan which revealed osteoporosis and osteopenia in both hips and a suggestion of brittle bones. He suggested steroids are bad for bones and my bones are bad.

I was prescribed alendronic acid to increase bone density but these made my crohns worse.

So, I appear to have to decide which peter to rob and which paul to pay (for those of you old enough to be familiar with the saying).

I am sending off a stool sample today. My last one had a calprotectin score of approx 500 and I’m sure this one will be the same or higher. In the meantime GP has suggested I double up on lansoprazole (am and eve) and given me anti sickness tablets as I feel sick all the time (spent weds eve being sick) and hardly eating. I’ve lost 1 stone (down to 8) and of course need to keep my weight on and energy up to improve hip replacement recover. I have some complan as a short term solution not very keto friendly but focussing on eating anything I can short term.

I am at a loss as to what to do and just wondered if any fellow crohns sufferers have had similar experiences or thoughts on steroids and risk re bone density. If my present symptoms don’t calm down I feel I will have to give in an take steroids. As you all know living with constant tummy cramps and diarrhoea is bad enough but throw in post hip replacement joint pain and it becomes even less tolerable.

Apologies for long post and thank you if any of you have managed to read it and offer any thoughts.

This disease is so horrible and I am aware there are others suffering worse symptoms than mine who have had major surgery - I truly admire you all.

[FRreedman]

The problem is that each consultant only looks at the bit of your body that they are responsible for, and none or very few take into account the whole body (YOU). Personally, as the steroid course is usually short and sharp, and knowing just what those pains feel like, I would go for the steroids but ask that they keep a close watch on your bone density etc.

[Maceygrey in reply to FRreedman]

Thank you so much for taking the time to reply. I agree with you 100%. I will no doubt give into a course of steroids at least I will have some respite from the pain and who knows it might kick me into a period of remission. Best wishes x

[Shoeysmum in reply to Maceygrey]

Hi Maceygrey

Oh dear, you certainly have had a year of it haven't you? ;(

I have UC and it was this time last year that I had my second flare up which just went on and on and on. Due to this I was given my first ever course of steroids (prednisalone). It should have been an 8 week course but I misunderstood the instructions and took them for 9 weeks. At the same time my GP had the forethought to also put me on a course of Vitamin D which, as you may know, helps to improve bone density and I guess negates that side effect of steroids that is inclined to whittle away at our bones. I've taken vitamin D3 ever since together with vitamin C.

Like you, I also suffered massive side effects whilst on pred including my T2 diabetes going totally out of control and sleeping very badly. There were so many side effects that I made a list of them to inform my UC consultant at my next follow up appointment. He never batted an eyelid and seemed most unconcerned. I decided the man was past his prime!

My point is that if you haven't been given vitamin D by your GP you should either buy your own as they're not expensive or ask your GP to prescribe them for you whilst you're on steroids.

Good luck xx

[Maceygrey in reply to Shoeysmum]

Thanks so much for your reply. Sorry to hear you too have had such a horrible time. Yes I am on D3 and Calcium tablets and I drink full fat milk. Have been taking these since last year although with all the tablets we have to take I do sometimes forget. I hope your situation improves xxx

[NL88]

Maybe SCD Diet can help

[Maceygrey in reply to NL88]

I’ll look into that many thanks. I was doing well on the keto diet - high fat low carb - but this got messed about when I was in hospital. I gather when in Ketosis our body produces natural anti inflams which can of course help with our inflammations. Thank you for your reply. Much appreciated x

[saj12]

With steroids you should have been prescribed vit D/ calcium such as accrete d3

[Maceygrey in reply to saj12]

Yes I am taking Vit D and calcium supplements- this was suggested by my consultant. I hope they help my bones sufficiently to not need the alendronic acid tablets. Thank you for replying. X