Hi everyone :)
I saw my Rheum. dr. today due to very frequent "flares." I have been having them about a week apart, so I was getting a little concerned. Fever, chills, very intense pain. I am thinking this doctor is really good. I have seen him 3 or 4 times, and he spends so much time with me. Today was a 45 minute visit! I am sero negative, but he has no problem with treating me. As I wish all doctors used their common sense and good judgement, he can see all of the symptoms very clearly.
He is trying to put off immune suppresants and gave me Lyrica to try. I am a little apprehensive as I have allergic reactions to most drugs. Is anyone else using Lyrica for SjS? And is it worth taking?
Tomorrow more bloodwork ::) Don't you feel like a vampire sometimes :-[ I know that I am all over the place on this post, but I just couldn't help but think about so many that struggle to find a good doctor. I am thankful for mine, but feel so bad for some of you. Hang in there those that are still searching for a good dr.
Designer
Hi Designer, It's great to hear that you have nabbed yourself a good Doctor.. so many here dont!
Re Lyrica, I do not have it, but have seen it mentioned many times on this site..
I don't think any Doctor would put someone on Immune suppressants first visit, so I'd go ahead and try the tablets he has given you..
If they do cause any unwanted symtoms, stop and get in touch with your Doc..
If he gave you 45 mins of his time , you are indeed a lucky "sjoggie"
Good luck with the bloodwork tomorrow, and hey I'm all over the place most days now, so what, I laugh at myself at times!
Keep in touch as we are always interested as to how anyone is being treated.. Good Luck, Dolly x
Just to clarify, Lyrica doesn't treat Sjogren's. It's a treatment for nerve pain (neuropathy) which may be caused by the SjS, but won't do anything to slow or alter the SjS.
Without going to immunosuppressant drugs, there are DMARDS (disease modifying anti-rheumatic drugs) available, Plaquenil being the most common.
Hi Designer,
I'm sorry to hear that you're not feeling well, but I'm so jealous that you got 45 minutes? Shoot, it would take four visits to get that amount of time totaled; amazing!
I am on Lyrica, but it's prescribed for the fibro/neuropothy pain, and it does help. Didn't you try Plaquenil once and came up allergic to it?
Nope, I don't feel like a vampire, just his victim! ;) :D I have to make another donation myself tomorrow morning too, ugh, more holes in the old body! :D
Good luck and let us know if Lyrica works for you.
Take care -
Patze
Hi Designer-
I'm on Lyrica. Primarily, it was prescribed for me for Fibromyalgia. But also for the nerve pain I have from my sjs and from a prior back injury.
I'm also a luckie Sjoggie. My doctor gives me as much time as I need. I don't mind waiting in the waiting room, because I know that when my time comes, I'll get the extra time, too.
Tracy
Hi there-
I'm on Plaquenil and methotrexate for SJS. More recently, I was additionally put on Lyrica to get relief from trigeminal neuralgia and neuropathies. Well, it helped the TN about 50%. which was my major pain issue as it never let up and engulfed my left eye/face/forehead. I also noticed the Lyrica helped the numbness in my lips (yes) and also some of the "bee stings" I get in my hands and feet, arms and legs. I had to fight ins for 4 months to get it and my co-pay is $95/month. I'll stay on it for a good length of time and then see how I do off it. It's very expensive. Lucy
Hi Lucy,
Hang in there lady and I'll keep the fingers crossed that the insurance will cover most of the cost.
Take care my friend -
Patze
Patze, my insurance covers all but $95/month for the insurance. FYI.....It's not in the drug formulary and maybe it will be soon and the cost will go down. Lucy
Hi Lucy,
Isn't it ridiculous how much these meds cost? :o I know that I spend a good hundred dollars on a months supply of Provigil, I only use it now if I absolutely have to, it's just too expensive.
Patze