Lupus

Pepe · 09-02-2009, 12:45 PM

Hello

Thank you all for your help with my Lupus question. Unfortunately, I just got back from the Rheumatologist and it is definitely Lupus. I'm a little sad. All they really have to offer are the drugs I have already taken and did not help me. Imuran, Cellcept and steroids. There is another drug, but it is on the list of medications that exacerbate MG, so that is out of the question. For now the Dr. just wants to monitor my levels. So, at this point, I don't know when my hair will stop falling out. I took Erin's suggestion and started the Nioxin. It makes my hair feel wonderful, but it takes a while to work, so it is still falling out. I am hopeful.

maryec · 09-02-2009, 01:16 PM

Pepe
So sorry you have overlap diseases! My grandmother had Lupus, & gout, she had a hard time with her kidney's, liver, & heart, rashes, & fatigue. I hope they can get it under control for you.

rach73 · 09-02-2009, 01:19 PM

so sorry to hear that the Lupus has been confirmed.

Hope the hair loss stops soon. I have been through the same thing myself this year, and its not nice.

Thinking of you.

Love
Rach

erinhermes · 09-02-2009, 04:03 PM

Hi sweetheart!~I am so sorry to hear about the additional disease....

Does your dr. have any sort of "plan" of attack?

Big hugs, thoughts and prayers are headed your way!
Love,
Erin

Quote:

Originally Posted by Pepe

Hello

Thank you all for your help with my Lupus question. Unfortunately, I just got back from the Rheumatologist and it is definitely Lupus. I'm a little sad. All they really have to offer are the drugs I have already taken and did not help me. Imuran, Cellcept and steroids. There is another drug, but it is on the list of medications that exacerbate MG, so that is out of the question. For now the Dr. just wants to monitor my levels. So, at this point, I don't know when my hair will stop falling out. I took Erin's suggestion and started the Nioxin. It makes my hair feel wonderful, but it takes a while to work, so it is still falling out. I am hopeful.

dog lover · 09-02-2009, 04:14 PM

Pepe,
I'm so sorry to hear that you will have to deal with Lupus too on top of your MG. Try to keep your spirits up even though it is sooo hard at times. My cousins wife has Lupus, she was diagnosed at 18 when she was pregnant with their daughter. She has had alot of ups and downs over the years but is still is a tough one. She is now 44 years old! I always tell her she is a TRUE fighter. Know that you are in my thoughts and prayers.
Kendra

Nicknerd · 09-02-2009, 04:27 PM

Hi Pepe,

I'm so sorry that you have to deal with Lupus on top of the MG...I hope that they can find the right meds. to get it under control...If it's any consolation, from what I've read about Lupus hairloss, the hair usually grows back...Please know that you are in my thoughts and prayers.

Nicky

AnnieB3 · 09-02-2009, 07:47 PM

Dorothy,

I'm sorry you have lupus, on top of MG. And you think you needed to be well-educated about MG!

Lupus can be a bit more complicated. Here are some of the Florida sites for Lupus. There's the main Lupus Foundation site (national), a local group that splintered off and another group I'm not so familiar with.

http://www.lupusfl.org/

http://www.lupus.org/webmodules/weba...rida_home.aspx

http://www.doroughlupusfoundation.org/about.html

Is the "other drug" that may make MG worse Plaquenil? Some people with MG can take it.

http://arthritis.about.com/od/plaquenil/a/plaquenil.htm

There is also an over-the-counter supplement; a natural anti-inflammatory that you can bring up with your rheumatologist:

http://www.lyprinol.com/home.htm

It is invaluable to try to make it to some Lupus support groups in your area. There's nothing like the firsthand experience from someone else with lupus.

I suppose you know to stay the heck out of the sun. It can flare lupus quickly. Even sun that comes into a car while you are driving! Because of that, you need to take extra vitamin D along with calcium (more than most people take). And some people get their windows tinted to keep some of the harmful rays out.

Did your doctor, or primary doctor, check your baseline kidney function? Do a UA to look for protein? If not, that's something that needs to be done regularly, even if you don't have symptoms. Your primary doctor can work with your rheumatologist (or not).

The MOST important thing with lupus is to bring up any new symptom to your doctor right away.

Pampering your immune system will help. Sleeping more when you feel worse, eating good foods, etc. I'm sure you already know this stuff but I had to put it out here anyway.

Lupus is different for everyone. I've known people who do okay and, yes, there are some who die from it. You should be aware of all the possibilities so that you will be proactive about your health as much as possible.

I'm sorry you have to deal with this. I hope you have a good support system and family to help you. Give this some time to sink in. It's a lot to think about.

Annie

Pepe · 09-02-2009, 08:55 PM

Thank you all for your thoughtful words, it really helps. Annie, thank you for the valuable information. Right now, there is not really a plan, just to monitor me monthly. She wanted to go the Imuran, Cellcept route but I did not tolerate those medications. Then the plaquenil, is on list the MG's can't take. So, she told me to think about steroids. Again, I didn't do well with them. I'm going to check into the over the counter supplement that Annie suggested and bring it up to the Rheumatologist. I hope you are all doing well. Erin, I'm glad that your port procedure went well. I've been sending thoughts your way. Thanks again to all.

ConnieS · 09-08-2009, 11:17 PM

Hi Pepe, am so sorry to hear about your diagnosis of Lupus. As Annie mentioned, do let the doctor know of any new symptoms or things which have gotten worse or better. Its absolutely essential, my girlfriend had lupus diagnosed at age 25, so I know what its like. Once hers flared up, it was just unstoppable. Please do take care of yourself!!!!!

Pat 110 · 09-09-2009, 09:01 AM

Hey Pepe,

I'm so sorry you have to deal with this on top of the MG. I hope the Dr. will find the right meds to get it under control. I understand how upsetting it is to still have your hair falling out, but it will grow back. Hang in there and know we are all here for you. Take care and I will keep you in my thoughts & prayers.

Hugs,
Pat