Skipped MTX per Rheum. Is it normal the butterfly rash is more bright and burning than ever?

[pen727]

And it's like I'm having a bad allergic reaction. Does anyone have headache, allergy symptoms with lupus?

Has anyone had to skip MTX for a week and then experienced a rush of symptoms?

My skin -- especially my face feels like it's on fire. I take MTX on Saturdays, but doc. wanted me to skip so I did. At the same time have been trying to decrease from 20mg prednisone to 5mg.

I made it to 8mgs and stayed there for couple days, 10yesterday. Today 10 -- then another 10 just before I began writing this post. I hate to take that much but am already breathing better and my face is calming a little.

[Hidden]

Hi I have had lupus since 1998 so am an old hand.

If you are reducing steroids you should not try if you have symptoms of a flare. Wait until you have at least a couple of weeks with no symptoms them reduce by. 1mg. Stay on that dose or have alternate days higher and lower for at least a week. Then if you feel ok reduce again. It takes a long time but better than having a flare And having to go back up again.

Your adrenal glands get used to 20mg so you have to do it slowly.

Hope this helps and you feel better soon.

[pen727 in reply to Hidden]

Thank you--yes, you're right--it was so bad I had to go up to twenty mgs. yesterday.

I'm so glad you responded! And am sorry you've been having to deal with this... This... I can't even say.

for so many years.

May I ask you a question?

Sometimes it's so bad I feel close to being comatose. It is such a deep fatigue--I just lie there unable to move or respond, or think even. It feels like being drugged maybe. Do you know about that and what is happening when that happens?

And how do you manage the disease, if that's possible. There are days when I can barely function, and this causes me much anxiety. Feeling insecure, scared about future.....

Do you mind telling me what meds you are on?

Oh thank you so for replying!

pen xxxxxx

[Hidden]

I was put on Plaquenil at first and given a prednisolone injection to damp down the flare which had been going on for a month.

Plaquenil takes up to 3 months to be effective. I managed 2 years with only short doses of steroids but after some big flares I was put on a maintenance dose of 5 mg.

You will start to feel better whe n the meds kick in, although the fatigue is constant just better some days than others.

My lupus is in remission for the time being but I have Sjögren's syndrome as well which is very active at the moment.

I am on Plaquenil 400gms daily

And 10 mg Pred I am going down to 7.5 mg maintenance dose and down to 5 if I can manage it.

Please ask if you need further help. There was no forum like this when I was diagnosed.