[MichelleAnn]

Ive been on prednisone now for 2 different treatments of lupus flareups. Ive weaned from 60mg to 10mg slowly twice over the last 6 months. Now Im back to 10mg for 2 weeks now and the lupus is back. I cant move from the sofa. The pain and fatigue is overwhelming. DOes anyone else have this problem? Im miserable and having a hard time to be nice to my kids and others. Its not prednisone withdrawl. My lupus headaches are back, my tremors, my cognitive more messed up, my hands are not working, sweats and chills, fevers, sores in mouth, I just wonder if anyone else cant get rid of a lupus flare up. It really takes a toll on ur emotional well being. Im miserable....so much to do and cant move. My doctor just repeats the prednisone dosage and when I see her im on prednisone and feel good. I take plaquenil also for over a year. Thanks

 

[cath]

Hi Michelle,

I'm sorry you are feeling terrible.

It sounds like you (and your rheumatologist) need to consider adding another lupus med to the mix - a steroid sparing med or immunosupressant like azathioprine, cellcept or methotrexate for example. It seems pretty obvious that you need a level of treatment equivalent to a decent prednisolone dosage, but of course in the long term it would be good to get off the steroids.

Personally, I found that adding aza to my med coctail really helped. It is for me better even than prednisolone, and much better than just plaquenil in keeping me relatively OK. Also I'm avoiding the side effects of pred now, and have relatively few from the aza.

Time to discuss this option with your rheumatologist I think. A good rheumy should be open to discussing this suggestion - after all it is your health and your body.

X C X

 

[LolaLola]

I do know what you mean as my Lupus has been pretty out of control for a while now. I am at the Hospital soon so am just toughing it out and taking enough prednisolone to make me hairy and hungry. I had really lost track of everything and felt dreadful, sort of lost a lot of hope from my life. Glad to say I feel better on the extra steroids,but can't believe a little thing like that drove me half to despair.
Thinking of you,
x Lola

 

[MichelleAnn]

Thanks!! Last summer was amazing. I did not even know I was sick with Lupus it scared me. I felt cured. As soon as the summer weather broke, the lupus was back full swing and never left. I even was in the sun last summer and swimming at a friends pool. They say Vitamin D you get from the sun is good if ur lupus can stand it. I was hoping this summer would b the same but it seems not. Seems it will b like my other summers a roller coaster. Yes I will discus with my Rheum doctor about other treatments again. She is so against it unless kidneys r involved. so far the kidneys are about the only thing that stayed good inside me and I am thankful. Thank you for the input. I will talk to her again. Maybe when I keep asking eventually her mind will change. She is a good doctor. Just cautious. Day by Day.....is how we have to live. Its a bummer to not b able to always make definite plans.

 

[confused1]

((((((((( Michelle)))))))))) Poor baby, I hear you completely. And you've been sick a very long time. Eons ago when I was first dx the rheumy didn't want to treat me with anything other than short bursts of pred because nothing was involved with my kidneys. Thank goodness a different doctor in my gp's practice was smart and got me onto Imuran and higher plaq doses. It did make a difference. Hang in there and be gentle with yourself. Demand some relief. Get a different doctor if you need. And believe me, I know how hard that can be. Sounds so easy ---- 'Go to a different doctor' --- but in reality it can be just as hard as climbing a great big old mountain.

Please remember that you are important and that your emotions, however fragile, are true. I don't know how old your kids are, but if they are beyond the "little ones" stage, then it may be time for a talk about Mommy and how sometimes Mommy just isn't well. Explain that you love them and never blame them, but that sometimes the beastie inside gets the better of you and then you yelp.

Sorry I can't be more help. Sorry you're having such a hard time. I'll send you good, healing thoughts and prayers and hope for better times.

Hugs,
Sunny