Do you still have 'flares' even when you are taking something like Mycophenolate ? I ha been feeling so much better taking it but the past few days I have been exhausted with aching joints again. It's so disappointing. I also take Hydroxychloroquine.
I have systemic Sjogrens but felt this was the best place to post. Thank you.
Good question!
Yes, bones...I had a similar experience during my first year on daily myco. Now am at the end of my second year on myco, and better accustomed to managing an individualised SLE treatment plan which employs daily hydroxy & myco & amitrip as my standard daily oral systemic meds, plus low dose pred tapers as & when flares mean symptoms break through enough to be really troublesome (4 week, 10mg prednisolone - decreasing by 2.5mg each week). Otherwise I manage the more normal daily fluctuations in joint, muscle, skin etc symptoms via lifestyle techniques & prescrition topicals
Rheumatology lets me take 3 pred tapers each year, leaving the decision & timing up to me (I always keep my GP in the loop). I'm 62. My version of SLE is relatively mild, I think, but the progression of my multisystem debilitation & secondary conditions (inc sjogrens) are relatively advanced because my lupus is infant onset, but didn't get systemic treatment until 4 years ago, plus I also have been coping with an early onset immunodeficiency (requiring a lot of antibiotics over the years) which started way before taking any immunosuppressive meds. All that antibiotics-taking has of course cause various chronic probs.
Hope something in there is helpful to you. Will be following your replies with interest.
Take care
🍀🌻
Thank you Barnclown for ,your interesting reply. I started taking Plaquenil
two years ago , then tried Azathioprine but that made me Ill so onto Myco.six months ago. It has certainly been good...up till now ! Last week I was the best I've been. I am also Caeliac and I made a bit of a dietary mistake last weekend and I wonder if that was involved too. I was 72 yesterday so I expect my great age doesn't help! I am seeing my Rheumatologist on Wednesday . I have every faith in her and my appointment is brilliantly timed. Will report back.
Hey Ho !
I like the way you're looking at this. I too find diet can make a big diff, and increasingly so with age. I'm in the relatively low myco therapeutic dose of only 1000mg per day. If rheumatology continues to agree, I'd rather stay on that low a dose of myco if poss, and cope with any flares via lifestyle management & pred tapers. I think of this as both a steroid-sparing & an immunosuppression-sparing treatment plan, haha.
Happy birthday (belatedly)! My BD was on Thursday.
How much Mycophenolate are you on, bones-bones? I am so disappointed to hear about your SLE in your Seventies and flares. Perhaps, your dosage is a little too low?
Thank you ashford green. I actually 'only' have primary systemic Sjogren's and am on a dose of 2000 mg of Myco. plus 400mg Hydroxy.
My rheumatologist thinks it was triggered by having German measles in my 30s but it wasn't diagnosed until I had breast cancer drugs in 2001.It didn't start giving me real trouble till about three years ago.So I think I am luckier than younger women...and men ....who have children and struggle with.work ! It's still a bummer !
