Lupus Support Group

I had an appt on Friday and thought I posted about it. Did I? If not, here you go.

They lowered my steroids to 20 mg

Off CYTOXAN

Put me back on Plaquineil 200 mg a day

In two weeks start Cellcept.

Seems like a lot on the liver...

My creatin levels are at .6 as oppose to 2-3. (if anyone can explain, please do) She said it was function like a normal kidney.

The side effects from the meds (especially the steroid) were very extreme for me. She said we need to know when to lay off the body. This is time to lay off. She gave me Lunesta for sleep, a diuretic (told me take only if fluid is visible in ankles. The Doctor actually took my labs herself,so I didn't have to walk over to the lab.

I asked her, since I was on all the high dosage, why was I still having so much pain, she responded that sometimes it could be side effects from the meds and not so much lupus. I guess that makes since, I gained so much in such a little time, I probably was hard on my joints to carry it. I feel better today, but still have a lot of water left to get rid of.

My other concern is, if it comes back will I have to go back on the Cytoxan. She seems to think we can control it with the new meds.

I also wonder *with what I already have of the Cytoxan* what other side effects are left to occur, or have they already happen? We will see. I hope a storm has went so I can see a brighter day. I also hope it stays gone for a minute. I feel like I still have a lot of questions but just haven't thought them all through yet to ask...Part of the problem, is I don't think they will know answers yet.

My Rhemuy also felt it was okay to stop the treatment and lower the dose. I called his cell afterward and spoke to him about all of this. He said because I was the high dosages of steroid for a month, we really did need to start coming off of them, but he is going to review my file this weekend. Just had new labs, so curious to see the return results.

Okay Happy SUNDAY! I have dosed off several times while typing this message. LOL I am laughing at myself. Guess I need to go back to bed before the kids wake up. I feel like a narcoleptic by the way I keep dosing. Didn't go to be until 3 am and woke up at 6. I'm just glad I am sleepy and can go.

Reading your post you say your off Cytoxan? How many treatments in all did you have?? I didn't have any water retention and really not much side effects from the Cytoxan except I got horribly sick. I started to feel good and than like you I started getting my same old symptoms back. I am taking 3mgs. of lunesta at night and it seems to help but right now I am not sleeping at all maybe 2 to 3 hours a night because I am having horrible vertigo and migraines....the vertigo was so bad yesterday my brother-in-law was taking a small table that I gave him and I noticed that we still had something under it and as I was bending over to grab the object the vertigo set in and I was starting to fall and my brother-in-law caught me and I got an instant migraine.....was not a good day yesterday.

I am so sorry that your going through so much and know PK that I am praying for you, always.

Eva

PK.... i think i already told you i had really good luck with cellcept. just watch for the lymphoma side effect. and be careful decreasing your prednisone.

PK,

Gratz for getting off the Cytoxan, make sure you look after yourself and get lots of rest, like you don't already know that and be careful with the diuretic you lose potassium.

Take care and hugs to you

Windy

Thank you guys.

Thats awesome news all around! I'm so happy for you...No more Cytoxan YAY! Prednisone was lowered even more...Now I KNOW your happy about that

And your kidneys are functioning at a normal level again...Great news!!

Even though you are on more meds, hopefully that will keep the LN at bay and you will never have to go through that again...