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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Top 10 Search Results for "Acthar Gel"

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New Medication
A MyLupusTeam Member asked a question 💭

Hello everyone I was wondering if anyone takes Quinacrine and if so how does it work for you. I just added this to the other handful of medicines I take. They added this because I've been in a flare for about a month now and my skin is really being affected. Please let me know. Thanks

A MyLupusTeam Member

I read up on the Rituxin and says it is for RA. Have they checked you for that? I think I’ll mention this to my doctor because I have been hurting so bad lately. I just have to find something that… read more

Has Anyone Taken Rituxan
A MyLupusTeam Member asked a question 💭

Now on top of all my medications I'm going to be taking Rituxan. I was wondering what is anyone's experience with it.

A MyLupusTeam Member

I had Rituxin to treat my ITP a few years back and put me into remission until December and now I’m a roller coaster with platelets again and just diagnosed with lupus. I thought the Infusion was not… read more

Does Anybody Else Deal With Constant Belching And Gas Pain That Gets Into Your Chest? I Already Take Reflux Meds But This Is Something New.
A MyLupusTeam Member asked a question 💭
A MyLupusTeam Member

Oh I'm so glad I'm not the only one who feels like they're having a heart attack until I can get that big burp out !! I keep ginger ale, club soda, and ginger chews by my bedside table. Sometimes I… read more

Nose Sores
A MyLupusTeam Member asked a question 💭

Does anyone suffer from nose sores? I constantly have sores in my nose. They are very painful at times and bleed. It used to be just occasionally but now it is almost constantly. I have used antibiotic ointment, hydrocortisone cream, calendula gel, etc. and nothing really seems to help. Very frustrating. Anyone else suffer from this?

A MyLupusTeam Member

I eat live active cultures yogurt and take L-lysine 1000iu a day and then when the mouth ulcers start I increase the L- lysine to 2000 a day.

Has Anybody Taken Cellcept?
A MyLupusTeam Member asked a question 💭
A MyLupusTeam Member

Wow, that is awful! My experience with most drugs is that I usually get the rare side effects that affect 1% of patients. 😕

Periods
A MyLupusTeam Member asked a question 💭

Do any of you have problems with your periods? I get mine every 21- 24 days lasting 5 days. It wipes me out every time. Fatigue, headache, all over body pain.

I also have had blood clots so my options are limited on controlling them

Went to my gyn and she gave me the following options:

Mini pill
Depo Shot
IUD
Ablation

Anybody had any of these help. I really want to stop my periods all together. I'm 34 and done having kids.

A MyLupusTeam Member

Depo shots q 3 months usually stop your peroids...kkc why no hysterectomy you could leave ovaries?

Stomach Emptying Problems
A MyLupusTeam Member asked a question 💭

Does anyone have problems with stomach emptying
I was at the GI yesterday an they think that could be causing some of my pain,weight loss, lack of hunger an always feeling full
They just don't know if they will ever be able to tell if it's from meds or GI problems.
Today after thinking about it I believe it tho because yesterday I ate 2 spoons of peanut butter an 1/2 a sandwich an I was stuffed. Today at noon I was starving an could only eat about 1/4 cup of pasta salad an 1/2 cup of soup… read more

A MyLupusTeam Member

I also have gastroparesis it's the worst I also have it lost weight I was diagnosed with this before I found out about the Lupus now they seem to think I've had lupus longer than my diagnosis date… read more

Has Anyone Felt Like Their Throat Is Swollen? I Feel Like I Can’t Swallow My Food.
A MyLupusTeam Member asked a question 💭

I have been having trouble swallowing food, it feels like it’s stuck in my throat and my throat feels tight as well. Has anyone had this problem?

A MyLupusTeam Member

C.R.E.S.T. five different things you will have to look it up but it doest this to yur throat

Mixed Connective Tissue Disease
A MyLupusTeam Member asked a question 💭

Is MCTD different from lupus, or just a diagnosis given when Dr's aren't certain of lupus yet? Or could I have lupus and MCTD?

A MyLupusTeam Member

I had anti-u1rnp & anti-sm. The anti-sm is specific to lupus. Mixed connective tissue disease came in for me, because of the u1rnp antibody, and I have clinical features similar to polymyositis and… read more

Acthar Gel Injections??
A MyLupusTeam Member asked a question 💭

Has anyone been prescribed Acthar Gel Injections for Lupus Nephritis?? I'm having horrible side effects on Prednisone and my Nephrologist suggested Acthar as a non-steroid alternative. I'm having trouble getting my insurance company to approve it, but still hopeful that I can obtain it and get some relief. I know it's a very expensive drug, but has anyone had any good/bad experiences with it??

A MyLupusTeam Member

I've just done my 4th injection. 2x wk 1 mL. No noticeable difference as yet. My ophthalmologist is actually who prescribed for my anterior scleritis but I'm hoping to get a two-fer and it also… read more