View Full Version : Questions about my Meds???

05-25-2011, 04:32 PM
i know I'm new to lupus being diagnose in January of the year.. my doctor has me on plaxinel 2 X a day. and he also has me on Gabapentin 2 X a day. and i i feel they are not really working for me. i have been on plaxinel since DEC and started the gabapentin in February. He also gave me Oxycodone for a pain as needed.. the oxy he told me not to use is everyday. and its a low dose. and no more then one a day.. but last night i was in so much pain that i broke down and took two.. and it helped. ( of course i was stoned and feeling great LOL) I'm in pain everyday!!! I need something for everyday use. what can you guys sugest i can ask my doctor to put me on for everyday use for pain. i need more and I cant get my Dr to do more for me.. My MD told me to go see my Rheumatologiest one more time, and tell him i need something, and if he doesn't give me something she will refer me to a new rheumatologist,, How ever my MD said that the rheumatologist i go to is a very good one.. i want to go on Prednisone but he wont put me on it.. i need something and i just don't know what to ask him to put me on to try. any suggestion???

05-25-2011, 04:50 PM
Hi Tracy,

The medicine balancing act is a really hard one. They work and work to get it all worked out and then our bodies change and it starts all over again. The plaquenil 2X a day is correct. It takes plaquenil several months to work but it does work. It doesn't "fix" everything though. Usually we are started on plaquenil and if that isn't working they add in low dose steroids. I say usually because many doctors don't like to use steroids because they are so harmful to our bodies but they do work. I have read, and had several doctors tell me as well, that one test to know if it is Lupus or an AI disease is to see if steroids make it feel better. AI DIseases respond very well to steroids, other things don't respond as well. a low dose of steroids would usually be your next step. If it gets really bad a trip to the doctor or the ER for a shot of steroids always makes it more manageable although never doubt how bad they are for you. I had one doctor tell me that steroids make you feel good all the way to the grave. Very true and they have nasty side effects but the goal is to get the flare under control and then taper down until you don't need them again.

That is my 2 cents worth. Hope you feel better soon

My current doctor knows my history and how much I am trying to stay off of pain killers so I go through tons of steroids. When those and the plaquenil stopped working Methotrexate was added to the mix. It seems to be helping but I am still at a higher dose of daily steroids then I would like.

05-25-2011, 04:59 PM
back in Dec he tried me on steroids for a month to see what would happen .. he said if i felt better on it, then he was pretty sure i had lupus.. well after the month i felt so much better, then he took me off it.. it was the only thing that seemed to help me .. and he is fighting me about putting me on steroids.. but it helped.. i need my life back and what I'm taking now isn't working.. put me on a low dose of steroids and then monitor me for the side effects. give me a yearly bone density scan. do blood work a few times a year.. but i need the steroids right now.. i just don't understand why he wont put me on it for a little while to help me..

05-25-2011, 08:28 PM
What I am about to suggest has worked for my daughter and I in the past. Think back to December. Make a list of your symptoms BEFORE taking prednisone, then indicate on the list which things improved or went away while you were on prednisone. Then make a list of your current symptoms and how they are affecting your life. If you have a job, is it affecting your attendance or job performance? Are you able to take care of things at home? Do you think you might need to apply of disability? Think hard about what will realistically happen if you don't get help. Take the list of symptoms before, during and after prednisone and give it to him, asking that it be put in your chart. Tell him specifically what you cannot do because of your illness, and how prednisone helped you to do those things when you were taking it. If he still won't give you prednisone, it's time to look for someone who WILL help you. Sometimes it seems like doctors have a little checklist - like you have to come back a certain number of times with the same complaint before they will do anything. If you can't get an appointment in a reasonable amount of time, mail him your list along with a short letter, asking if he will help you.

We have found two different kinds of rheumatologists: the "textbook diagnosis" ones and the the ones who recognize that lupus and AI disorders are very complex. The textbook guys seem very reluctant to give a firm diagnosis and start treatment. The realists acknowledge that medicine is an inexact science and that patients need to be treated to improve their quality of life. The trick is to find the second kind of doctor. Sometimes the doctor's website gives a little blerb about their philosophy. There are lots of (free) sites where people rate their doctors. Some doctors will allow a free "interview" before you start care with them. ALWAYS check your state medical licensing website to make sure there are no complaints or restrictions on their license. I'll post a couple stories about that another time.

I hope you are successful in getting your current rheumy to listen. Let us know how it goes!

05-26-2011, 08:18 AM
That is perfectly said Gizmo! Nothing else to add