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Just Diagnosed with SLE feeling frustrated

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Posted 10/13/2015 2:07 PM (GMT 0)
Hi there,

I have never written in a forum before, but I guess there is a first time for everything.

I was diagnosed with SLE about 1 1/2 months ago. I am definitely feeling frustrated and alone. My husband is being very supportive, so I really can't complain in that department. I started on the Plaquinel last week at about 200mg, and I am supposed to up it to 400mg today. My Rhumetologist figured it might help ease me into the possible side effects. I have definitely been nauseous, for sure! I have not had much of an appetite. I'm so nervous to start taking the 400mg....will I get even more nauseous? When will I start feeling like my old self again? Is this the new me? Ugh.

From what I have read in the forums, a lot of you have been dealing with this for a long time. I guess I am the new girl to the club. Any suggestions or comments are so very welcome.

-Amber

Posted 10/13/2015 2:14 PM (GMT 0)
Your body should get used to the Plaquenil in a week or so.

If you are taking it with food, try taking it without food. Or if you are taking it without food, try with food.

Sorry, I can't remember if increasing the dosage had any effect on the nausea.

Best wishes.
Posted 10/13/2015 6:07 PM (GMT 0)
Hi Amber,

I was just diagnosed as well, September 2nd. I started the PlaqueniL at 400 mg and haven't had any issues but I take it with food. Have you started any other meds or supplements since you started the Plaquenil? I was having some GI issues and was really concerned because I have UC as well but determined it was due to the calcium supplements that I was taking on an empty stomach.

I certainly can understand your frustration and feelings of being alone, you are not! I have been researching and reading as much as possible and that has really helped me. I would highly recommend the Lupus Book. It can be a bit technical at times but it explains a lot about the disease and the various tests and what they mean.

Best of luck to you and I hope you start feeling better soon!

Cheryl
Posted 10/13/2015 8:10 PM (GMT 0)
I feel like a newcomer myself although I was diagnosed 3 years ago.

I don't remember having issues with my plaquinel either, but we're all different. I did have trouble with mtx and had to stop it.

Give it a little more time to see if it's just adjustment.
Posted 10/16/2015 1:22 AM (GMT 0)
I'm new here as well...diagnosed Sept 2 same as Cheryl!

I started 400 mg Plaquenil, (200 am & pm) Sept 3rd. Only a couple hours after I took the 1st dose I was miserable with GI issues (diarrhea, cramping, bloating & gas...so sorry!). Since I'm already on Imuran (immune suppressant) for another autoimmune condition, I was worried that I would be in trouble if I couldn't tolerate the Plaquenil for the SLE.

The good news is that the 2nd day was better and eventually things calmed down...although bloating/gas is still a problem I'm trying to deal with. I have had some nausea that was relieved by Zofran, but that has improved as well.

The SUPER GOOD NEWS is that on the 27th day the bone crushing fatigue I've had since February finally improved!!! I've had more up than down days since then, and think I'm finally seeing the light at the end of the tunnel!

Hope this helps

Post Edited (Amethyst4) : 10/16/2015 1:16:39 PM (GMT-6)

Posted 10/31/2015 4:27 PM (GMT 0)
I was diagnosed last week, I'm learning as much as I can. I also have a very rare condition, Primary Immunodeficient. I get weekly plasma infusions from healthy people's donated blood plasma, which creates my own immune system. Because of this, the treatment plan is just Plaquenil at this point in time.

My rheumy claims it will eventually help with pain and fatigue, working at the cellular level, instead of just a bandaid for symptoms. I hope it helps me!

I'll be spending a lot more time reading all the information here. I've already spent a lot of time at lupus .org. Doing my own research, in attempts to be my own advocate have always been key for me.

I'm in my mid-50's, so no spring chicken here ;) The doctor does believe I've had it most of my life, as I fought juvenile arthritis as a teen.

Here's to all of us gaining the support and information we need to treat our disease the best we can, Cheers!
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