HealingWell
Search Close Search
☰

What Works?

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/14/2011 12:29 AM (GMT 0)
This is my first post....Wondering if anyone might have any feedback. I was initially diagnosed with SLE in 2008..I was placed on Plaquenil which helped, but made all my hair fall out and turn orange. Then told I did not have Lupus, that it was Lyme Disease, then it was Osteoarthritis....Now, as of 8 mos ago, it's SLE. I have been on Methotrexate, which initially helped, but then I had a relapse about 4 months ago. I was then placed on Arava 10mg, which has been giving me diarrhea,chills and just feeling like poop.

Thinking about going back on the Plaquenil even it makes me go bald.
Any suggestions out there for the right mix of meds? Thank you so much.
Posted 12/14/2011 2:09 AM (GMT 0)
Sorry, I'm just getting started with plaquenil (June this year).

I've heard Cellcept is good. Has your doctor mentioned it yet?
Posted 12/14/2011 5:20 AM (GMT 0)
Welcome Kernal to the hw forum. I am sorry I am not much help as I am not familar with SLE. However I think that you will find alot help from this forum. The members have been helpful and uplifting, so I am sure you will recieve some great advice. I will keep you in my prayers.


Bless you, Amy
Posted 12/14/2011 4:41 PM (GMT 0)
Kernal,

When is your next appointment with your rheumy? Lupus responds to treatment different for all of us, so I would make a list of your concerns and ask your rheumy for advice on your next visit.

Personally, aside from itching, plaquenil has been like a sugar pill for me. I haven't noticed any side effects or benefits from taking it the last 6 months.
Posted 12/14/2011 11:39 PM (GMT 0)

Thank you for your responses - I truly appreciate it. I spoke with my rheumy today and he stopped my leflunomide because of the side effects. I will look up the Cellcept - I am hearing so many things regarding treatment since I started reaching out. I met someone who takes and IGg infusion and says that it really helps. He wants to put me on prednisone for the pain and inflammation but it makes me crazy in the head - just being honest. So, now he is increasing my methotrexate until the arava is out of my system - two weeks - and we start again. Anyone ever use Benlysta?

If I can be of any support to anyone, please let me know. Thanks for taking the time to respond. It makes me feel like I am not alone. God Bless.

Karen

Posted 12/15/2011 4:28 PM (GMT 0)
((Hugs))

This forum has been a life saver for me.  There are people in all stages of the disease, some recently diagnosed, some dealing with lupus for years.  Everyone is quite generous in giving their time and attention to your concerns and thoughts. 

If it hadn't been for this forum, I wouldn't have made a list to take to my rheumy to discuss my symptoms and concerns.  I also wouldn't have felt as secure about voicing my concerns and thoughts to my doctor. 

I feel like I'm in charge of my treatment now, and that's a good feeling!!

Posted 12/17/2011 12:50 AM (GMT 0)
BEW - you are right.....I have definitely written information down to take to my rheumy....it has been such a blessing. And I have been a ton of my own research so can empower myself....I know the docs do the best they can, but they just do not have all the answers and never will. My rheumy has only been in his specialty for two years. He is very sweet and compassionate....but I am not sure if he is on the cutting edge...although he did offer me Benlysta and a lot of doctors aren't doing it yet.

Thanks for the Hugs - sending one right back to you:)))

Karen
Posted 12/17/2011 10:29 PM (GMT 0)
Geez...please excuse all the above typo's. I am embarrassed!
Posted 12/18/2011 12:30 AM (GMT 0)
That's okay. I have spells of forgetting how to spell simple words and I'm a teacher! :)))

I blame the lupus. I used to have a mind like a steel trap. I think lupus is warping the metal some. ;)
✚ New Topic ✚ Reply