Does anyone think taking so many drugs may be making then feel worse?

Hey there. Im not on any of the meds you are, although I should probably be on meds for anxiety & insomnia issues. Ive tried Neurontin & Naprosyn for pain but none of it works. I have been on Plaquenil for about 2 yrs now and it is not working either. The only break in symptoms I got was with my pregnancy(my daughter is now 9 weeks old)and once I stopped breastfeeding my symptoms started coming back(that was when she was around 6 weeks old). It took a little while for the milk to dry up and my symptoms aren't totally terrible like they were..yet...but they are coming back nonetheless. I have UCTD w/SLE features(might as well be lupus), Raynaud's Syndrome, GERD, Neuropathy type pain(thats what I tried the Neurontin for) & Epilepsy(were not sure if this is linked to the lupus or not yet however in my opinion it is). Im currently on Plaquenil, Keppra(for seizures), a daily prenatal, daily folic acid supplement, colace, & Zantac twice a day until I figure out if im switching back to Prilosec twice a day or going on Protonix. That is for the reflux. I am starting to get the brain fog bad again and have other symptoms pointing to CNS Lupus but it has not been confirmed. Once my "Lupus" gets back to how it was before I will be the same as you are...too tired..too sick..it either hurts or you're too weak..rashes..ulcers...etc etc etc...With the meds you are on there is nothing treating your actual disease, just the symptoms. Since you cannot take NSAIDs(I believe I cant either due to the reflux...but im also being evaluated for IBD soon as well...)maybe you should mention to your rheumy about trying Plaquenil. The only down side to it is it can give some symptoms that Lupus already presents you with(rash/sun sensitivity, ulcers, nausea, etc)and it usually takes about 6 months to see improvement if its going to work. As I've said Ive been on it about 2 yrs and it hasn't done anything for me. You however may be different. Unfortunately they wouldn't put me on anything to put me into remission before the Plaquenil was given time to "test itself out" with my body(aka steroids/prednisone)so I still suffered through everything even on the meds. I am also sensitive to sunscreens and cannot use any at all so it doesn't help when Im allergic to the sun, fluorescents & computer screens and extreme temps(heat is a killer for me with the rash..even using a hair dryer etc.). So ultimately its your choice if you want to go that route. I had no choice because since I have no real lupus diagnosis they weren't going to treat me with any of the harsher drugs. I would def discuss this with your rheumy especially since you are diagnosed with SLE and just be honest in how you feel and dont give up ...make him/her listen. I am still in the process of getting everything figured out with myself and Im hoping my new rheumy can be of some help as I live in a small town and originally was told I was "fine" and nothing was wrong until I traveled 3 hours away to JHU and found someone who would listen. Now she is leaving due to furthering her career as a rheumy and I cant really keep traveling 3 hrs away to see specialists with a 3 yr old and a 2 month old etc. So hopefully I will find some way to get some answers and I hope that you have better luck! My rheumy didn't even consider testing for CNS until I had another seizure this past january a week after I found out I was pregnant! ....I wish you all the best and feel free to message/email me anytime :) *hugs* God Bless. -Lupie Britt

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Thanks to you both for your responses. I think I tried Plaquenil before. I see on the forum that a lot of people take it and a lot of them complain about hair loss. I do not want to lose my hair. I already feel bad and I don't want to look bad too when I do go out. No, I do not eat well but I do take calcium and a multi-vitamin. I tried to drop down to 1 Darvocet-N per day instead of 2 per day last week and in 3 days I lost 5 pounds and my heart was beating so fast and hard you could see it on the outside of my body. I called my rheumy today and spoke to the nurse about coming off the Darvocet as it has been taked off the market by the FDA on the 19th of this month I think. She told me to stop taking it and that is all. Darvocet is an addictive opiate drug. Finally she agreed to leave a message for my doctor. I feel like you are right about finding a new rheumy. I am lucky to live close to Nashville,TN., and have several doctors to choose from although there really are not a lot of them. I am so sorry Mommy121 that you are not close to doctors. I go to mine every 3 months. My insurance is going to change the first of the year so I will have to wait and see which doctors I will be able to see.

I saw my rheumy two weeks ago and all he does is type in his computer and ask what prescriptions I need refilled. Does not ask questions or check heart or me in any way. I did ask for a prednisone shot and he did give it to me and I have felt somewhat better. Is it safe to take prednisone? How often do you take it?

I was diagnosed about 8 years ago. I took NSAIDS at first and sleeping pills. I can not sleep well. The NSAIDS gave me 3 stomach ulcers so I had to come off of those but they really did help. I also have GERD and irritable bowel sydrome. I finally had to quit my job 3 years ago.

I guess this is our lives now. Thanks.