Reduced steroids finally but for how long!??!!!

[Sara_A]

I have been on increased steroids now for about 3 months after a long flare kicked off from the sun and just finally got back down to my maintenance dose of 5mgs daily this last week.

Already the last 2days I have started feeling awful with stiffness and joint pain.

Said to my partner today ‘do u want to make a bet on how long it is til I have to increase again!!?’

Despite being on mycophenolate 5 times a day and hydroxychloroquine twice daily!

I’m seeing cons again on Friday but there’s just not much more they can do and I’m having problems from the weight I’ve put on with the increased steroids, I lost 11lbs in weight just before they increased the steroids 3 months ago and was devastated when they increased me.

I have to increase about 4 times a yr mostly anyway and a couple of IM steroid injections too.

I’m thinking the winter isn’t gonna be good!

[Wolf_1]

Hi Sara_A,

I’m sorry you are not feeling well, there’s nothing worse than getting your steroids to where you want them, then BANG! you feel like your body is about to explode! I too are now back down to 5mg of Prednisone, 1500mg of MMF and 2mg of Tacrolimus daily ( I have had a Kidney Transplant due to my SLE) I also take OxyContin 40mg and Oxycodone 20mg daily for the chronic pain for SLE and Fibromyalgia. I firmly believe that the cold weather brings on the joint pain more than usual and yes I agree the steroid increase makes sure you gain weight whether you like it or not! It’s so frustrating that in the warm weather you have to cover up otherwise you cause a flare and I n cold weather it doesn’t matter what you do your joints ache worse no matter what you do!

The life of a Lupus sufferer, your damned if you do and your damned if you don’t!

This is my 20th winter coming up with this insufferable disease, so I know what Santa Claus is getting me this year (although I wouldn’t mind if he wants to keep them to himself for once!) is every joint you can think of PURE PAIN, stiff joints, painful itchy rash, brain fog, mouth and nose ulcers, depression, anxiety, dry eyes, hair loss, chest infections, pleurisy, plantar fasciitis, sticky blood, increased appetite, weight gain, cold chills, hot flushes, euphoria, total sadness, chronic fatigue, sleeplessness, headaches, hypertension, stomach problems, sore throats, irritation, anger, no strength, stressed out and a bloody partridge in a pear tree!

Apart from that, you know you will be fine as always!

Good Health Always,

Wolf_1 🐺🦋😴💤

[Sara_A in reply to Wolf_1]

Ha ha yes! So true! I have just had to roll out of bed and into a bath to defrost/loosen up so I can function and go do my 6 hrs at work. I feel like I’ve been beaten with a baseball bat all over.

Off to gp this aft to discuss yet more tablets for my headaches! Neuro has suggested topiramate as she says I get 4 different types of headaches, trust me to get all of them not just one!!

Thanks and yes will be fine as always!

[Alex97]

Hi, I have been on increased steroids since August 2017. When my skin/eyes flare which is usually between 4-8 weeks I have intravenous steroids, 3 doses of 1000mg in a week and then anything between 40-80 daily in between. Everytime I taper down I get another flare so back to intravenous. My consultant has told me that anything under 7mg does nothing to help the body. Hope you get the right dose to help you.