Lupus

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Anyone taking plaquenil... i would like some insight.

Anyone taking plaquenil... i would like some insight.

Anyone taking plaquenil? I used to take plaquenil about 6 years ago and lots have changed for me since i was taken off of them. I was only on them for about a year long with voltaren and some other stuff. My new dr recently put me back on plaquenil alomg with humira injections, lyrica and cytoxan and idk what to expect with the plaquenil. I would love some insight or your stories on this medication. Thannks!

A MyLupusTeam Member said:

I’m taking Plaquenil and have taken it for many years. No problems or side effects. You need to get eye exams regularly. I believe most people with… read more

posted 16 days ago

I have my first cytoxan infusion tomorrow. any ideas what to expect?

I have my first cytoxan infusion tomorrow. any ideas what to expect?

A MyLupusTeam Member said:

Hi Everyone...I started Cytoxan therapy on Monday for my Nephritis and other than being tired, so far I feel okay. They don’t give me as much fluid… read more

posted about 1 month ago

Could others share experience with cellcept and cutoxin?

Could others share experience with cellcept and cutoxin?

My Lupus is no longer being controlled well with prednisone and Imuran. Plus having ling term side effects with prednisone. My vision is being affected; have serious double vision and am being sent to a neuro-opthamologist to confirm cranial nerve involvement, eye muscles attacked (we already know this) , and neuro involvement. So doc is changing me to cellcept in a week and plan will be to change to cytoxin when neuro-opthamologist confirms neuro… read more

A MyLupusTeam Member said:

How did your visit go? And about the gabapentin, what issues cause you the desire to get off of it? Wondering as Ive been on it for years as it helps my… read more

posted 5 months ago

Is there anything you can do to help stop hair loss?

Is there anything you can do to help stop hair loss?

The worst hair loss I've experienced in the past was due to medication (Imuran and Cytoxan). Hair loss stopped pretty much as soon as those medications stopped. I'm currently experiencing heavy hair loss just due to lupus activity I presume. Chunks come out in the shower, while brushing my hair, and I'm pulling hair off my clothes and body that have fallen out throughout the day. I'm currently on 5 mg of prednisone and 400mg of plaquenil. Does increasing dosage… read more

A MyLupusTeam Member said:

I was also told to try Biotin supplement....

posted over 3 years ago

Does anyone have advice on how to get rid of mouth lesions?

Does anyone have advice on how to get rid of mouth lesions?

The doctors don't seem to have an answer for this. My mouth, mostly the roof and my tongue just gets really raw and red and even water burns it. Sometimes steroids work but I've just finished my 3rd round of prednisone (starting with 20 mgs for 4 days and weening down 5 mgs evry 4 days.) It will clear up mostly but 2 days later it's back with a fury. The doctor mentioned a drug (cytoxin?) but he said it can make you pretty sick and it costs $300! Can't… read more

A MyLupusTeam Member said:

Thank you for your suggestions for the mouth sores. I will for sure get some Magic Mouthwash, so at least I can eat! No way on the menthol & saline… read more

posted over 2 years ago

Abdominal swelling

Abdominal swelling

Does anyone experience (or have experienced) abdominal swelling? For a month now, my stomach has been very hard and sticks out to the point where my belly button hurts and even looks like it's trying to pop out. I know it's not constipation because I have no problem with that. I eat plenty of vegetables and fruits, and drink plenty of water and dandelion tea. It's just painful because it feels very very hard to the touch, almost like muscle (except I have no abs), and feels like my stomach is… read more

A MyLupusTeam Member said:

@A MyLupusTeam Member I beleive the lupus rash can be as extreme as rosecea yours may be something else

posted 9 months ago

Has anyone else experienced a flare up of low platelet counts? What kind of treatment are you doing to fix the issue?

Has anyone else experienced a flare up of low platelet counts? What kind of treatment are you doing to fix the issue?

I feel normal and fine except for the occasional fatigue here and there and achy joints and back, but lately I've been bruising like crazy. I don't remember hitting anything or bumping anything but I wake up with new bruises every day all over my body. I know that means my platelets are low. So I've been getting blood work done, everything with my blood is good except for my low platelet count of… read more

A MyLupusTeam Member said:

I receive IVIG every 21 days. I've been on them since 2014. Was on them every 30 days for about 2 years, but this past year got bumped to every 21 days… read more

posted 9 months ago

Anyone use Cytoxan for treatment of Lupus with ILD.

Anyone use Cytoxan for treatment of Lupus with ILD.

A MyLupusTeam Member said:

Interstitial lung disease and lupus from the NIH: Abstract
Systemic lupus erythematosis (SLE) is a heterogenous disease of unknown etiology. It is not… read more

posted about 1 year ago
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