Was diagnosed with RA and receiving treatments only to find it was Lupus 2 years ago. Now, I find out that all the meds I've been taking for trigeminal neuralgia were for naught as I actually have scleroderma! Very frustrating! Anyone have similar experiences? I worry about all the unnecessary meds I've taken these past few years.
What meds were you on? A lot of the same meds are used to treat different auto immune issues. And you can have more than one auto immune issue. The beginning of my diagnoses was similar, I have RA, Sjogrens and Lupus. Alot of flip flopping and testing. Do a little research of your own, and discuss with your Doc. Hope everything goes well for you!
Hi Stacy. I am on prednisone, plaquenil, methotrexate and Topamax. My new rheumy who diagnosed the scleroderma said to stop taking the Topamax as it is having no effect and I don't have the trigeminal neuralgia. Both sides of my face are numb as are my mouth, tongue, teeth and forehead. I've been on lyrica, neurotin and other anti seizure meds for the trigeminal neuralgia diagnosis. My neurologist refused to consult with my rheumy as he said it was a waste of his time and obviously my lupus was spreading and that was why the facial numbness was spreading as well. What has been your experiences with meds, etc?
I've been on the same meds except for Methotrexate and Lyrica. The Topomax was prescribed before I was diagnosed with Lupus or RA. I had killer migraines, was on it for a year. It did help quite a bit, and I had no real side effects from it. I have been on Plaquenil for only a month, was given Prednisone to help control symptoms till Plaquenil kicks in. Rhumey said it could take a few months to see any results. Sorry for the conflict between docs, that's pretty unprofessional in my opinion. I think as long as you are keeping everyone informed of whats going on and what you're taking, you should be ok. Remember to speak up if you are unclear about anything, or feel something is not being taken seriously. They work for you. It does sound like you are on the right track. just remember their is no magic pill that will cure you, its all trial and error. And time, it takes a lot of time to work these strange and frustrating illnesses out. I wish you luck and relief soon!
Thanks Stacy! Yes, can be very frustrating, that's for sure:)