Worried about prednisolone and azathioprine

[Caramia1964]

Well had a face to face with rheumatology yesterday after feeling dreadful for most of this year. Had bloods , urine and stool specimens put away prior to appointment and more taken whilst there. She has started me on prednisolone until end of year, then planning to add in azathioprine. Said my lupus is more active which I suspected. Also have to be referred to neurology and she is requesting an MRI scan of my brain after I had a brain tumour removed 3 years ago and have been having nausea , morning headaches and increasing vertigo again. Was also started yesterday on a CPAP machine for sleep apnoea so all go ! Has anyone got any advice on prednisolone and azathioprine? Am s little anxious about them to be honest but couldn't go on the way I was feeling! I had just joined slimming world last week and lost ,7 lbs in first week but I guess I may have to kiss goodbye to weightloss now !? I am going to try and be very strict and not succumb to hunger pangs with it if I can !

[PMRpro]

Being on pred doesn't inevitably mean weight gain, If you cut carbs, especially processed carbs and added sugar and limit certain fruit and veg, then it can reduce and even avoid weight gain altogether.

Slimming World is often a bit carbohydrate heavy for people on pred but there are people on the PMRGCAuk forum who still lost weight while on pred but it had to be adapted a bit - is there a version with lower carb? Most of us just cut carbs - lots of info online. I like this site:

dietdoctor.com/

which has good pictures that make it easy to remember what is lower and what is higher carb.

[Minnskimoo]

Hi.

I have been on prednisolone for three years and initially had a phase of the steroid ‘ munchies’ but somehow it levelled off and I didn’t put too much weight on at all - mainly a slightly fuller face. No Botox required. 😐I suppose it depends on dosage and the individual as to how we are affected. I am now tapering and my hamster cheeks have all but disappeared and now I feel a tad slimmer without trying. So I must have put a small amount without realising! On the upside, they have helped me to a point and given me some welcome respite from some unpleasant symptoms .

Hoping you get some relief and reassurance.

💐

[Potatoheat]

Hi Caramina.

I have been on azathioprine since 2006 . Had high dose of steroid while it was kicking in then stopped . Back on them now on a very low dose. My Lupus is fine really so it does work !

I get the usual aches and pains and migraines but ok otherwise. My main problem is a very irritable or unpredictable bowel. Not everyone gets that tho. Did put on a bit of weight when I first started a high dose of steroid but that gradually came off as the dose came down . It was more the chubby face than actual weight. It will make you feel great and very hungry to start so watch that.

Now been told I should take calcium for longterm steroid but I'm having trouble tolerating it. Hopefully they will stop yours once the aza is working. They did with me . Hate taking so many toxic pills but to lead a fairly normal life I guess it's worth it.

Hope you manage to settle down with it , stay safe in these horrible times❤

[Caramia64 in reply to Potatoheat]

Thank you so much for that information , I am glad it’s working for you . Fingers crossed 🙏. Keep safe too 👍x