Hi Lynn. I am so sorry to hear this. I dont know anything about it, but I know neuropathy is disease of nerve or inflammation or something like that. Nice doctor. He sounds like he does care.
I went to pain management doc last thursday and i was so thrilled to have a doctor say it like it is, without caring, finally. He said you have lupus and it makes you hurt everywhere all the time!! YES it does. I have had too many docs NOT tell me the real truth, like if they say it to me it will make it worse for me........what?? Anyway.
I desperately HOPE the higher dose helps you!!! Try it, you need it now. I know I have gained 25-30 lbs in the past year!! From the pred. I still not taking the plaq anymore and my ill feeling and tummy are still better. But I am also tapering my pred. just went to 15 from 17.5 today. I am tolerating it ok. Pain doc put me on 30mg extended release morphine, 2 or 3 times a day if needed. Ummm.....needed!! He said my neck pain from having surgery on C56&c6-7 is because when you have surgery the levels below and above the surgical ones have to work harder and they deteriorate then too. But for me, because of it being c5-6 and c6-7 it cant even do that because at those levels there are shoulder blades and rib cage so they cant move at all. Maybe if the new rheum gets me on a better lupus medicine he can see if my neck and back could be helped with injections or procedures, but until lupus controlled he can only give me pain medicine to help it. boo-hoo, I would like to have my whole body of jonts injected-yesterday! I have already had many. Maybe steroid injections will be possible for your mononeuropathy?? I dont know. Or maybe ablation burning) of the nerve would help?? I see new rheum next Tues. and I am scared because if I cant take plaquenil--then what? Chemo? Plaq is like chemo for me, so how would a real drug be on me?? Like methotrexate, or the others?? I dont want anymore drugs to make me feel sicker than the lupus does itself, and I know I am tapering the pred no matter what they say. The weight gain is killing me, so I understand what u say there. people are like--the weight will come off when you go off the pred--guess what? my rheum said i may never be able to stop pred....so hello! I am really bummed about LUPUS! I HATE this for YOU and ME!!!!!!!!!!! NO ONE understands that I have no idea why I am even alive?? Just to freakin suffer, get more diagnoses, more drugs and NO better. I make no contribution to the world--i just suck the hard-earned money and joy out of everything and evryone. GOD love u! I hope you feel better with the docs help soon!! See, this is not helpful to you, I am sorry I am just depressing!! hugs friend, hang in there for me!View Thread
OH........HELLO Lana!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Wisteria Lane............love that street!!!!!!!!!!!!!!!!!!!!!!!!!!! hope u r well.......sorry, i cannot see for crap right now and i dont know why........good Lord,,,what the heck now??View Thread
Oh, yes Pug is right!! I was denied, they said i didnt meet stae disability requirements. I had to appeal. My rheum DID give me a letter, then I won. But I have spendown because hubby makes too much as well/View Thread
Yes, it was a plasma center where they pay you for your plasma, so that would make sense they wouldn't want the serum or plasma.
I will look at these links now......THANKS SO MUCH!! How nice of you. You seem to go above and beyond to help us here, as lupus is soooooo vague, random, crazy and different in it's effect on each individual.
So sorry your sick again!!!!!! That sucks, hope you get better soon!
I had my appt with pain mgmt and he changed my pain med to ms contin (morphine) 30mg extended release so it stays at a constant level instaed of peaking and then falling in relief like the loratab was. Loratab is very short acting he says the main strength is in the 1st hour then it falls off quickly. So it has no chance of helping my chronic around the clock pain. The extended release morphine DOES HELP!!!!!!!!! I have had less to no pain for almost 2 days!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (happy dance1!)
I am a bit groggy but just waiting until that subsides, so not driving or anything till that side effect is better. I only have to take these every 12 hours. He aslo changed the gaba to 800 three times a day (was 600-4 times a day), and muscle relaxer to 4 times a day instead of 2.
If this sticks and still works I might get my life back!!!!!!!!!! wow! I am amazed at the amount of pain relief, and its weird because it stays constant and I am used to it starting to hurt again soon after the frst 2 hours with the old med. He also gave me enough and directions to take it 3 times a day after day 2 if necessary. That makes me feel more secure, in case the pan gets out of control like it is known to do. I am soooo afraid of that, it is sooo hard to get thru. He's also hoping the new rheummy can get my lupus and inflammation under better control. Then IF needed we can look further into my back and neck issues and see if injections may help or not. Next month he wants to take me off celexa (antidepressant) and put me on savella, which is new and helps pain. So, there's the plan, I am happy with it for sure. He is a nice guy and explains everything.
With all hubby and I have been challenged with since his losing job and losing our house....we put it all in God's hands and t seems like this is all His plan now. Everything is working out, seemingly on its own, for the best. The scariest things, like losing home, having to get new doctors, being without a job......we got a new, better home, doctors and job!!!!! Thank the good Lord!! Hubby and I really believe it.
My 2 male dogs got into another bad fight yesterday. Now we are gonna have to put the electronic fence in front yard and keep one up there and the other in back yard fence. The last resort before giving one away. I dont wanna have to do that!!
Well, now fill me in on you...... How are the joints feelin? And how is your leg now??