I was just reading the Prednisone thread and I was wondering, what meds are you on besides prednisone? I am sure you have said it before here but I dont know where.
13 mg pred, having a hard time holding and tapering, MTX 20 mg, Plaquenil, Enbrel 50 mg (1x weekly), Toprol XL, Xtalan (for glaucoma), Nitroglyercin, Albuterol (when needed) Lasix, Diovan, Postassium, Notripline, Klonapin, Mobic, Vicodin, Tylenol, Folic Acid, Calcium, Flax Seed Oil and multivitamin plus eye drops and gels.
Crunchy, what are you up to.
You sound like a walking drug store. Deanna, your poor body probably has no idea what to respond to. Multiple diagnosis suck.
If I ever get my prednisone down and the stupid weight off, that list might just be cut in half. The scary part is always the heart stuff. My younger brother had a major heart attack at 40. My mom and my grandmother both had pacemakers. My sister and I both have mitral prolapse valve. I've already been warned that eventually my leaky valve might need to replaced. This makes doctors really scared to do surgery. Then, last echo showed that my heart was actually thickening. The RD was not that concerned, but the cardiologist was.
For me, it's not just joints and tendons, it's all the systems.
I do get scared when it all acts up. But today, it's not so bad. I'm in a good mood and I'll take that.
I am suprised that you are still on Plaquenil, and that your MTX dose is still so high. How much Mobic are you taking? Also, just curious, how is your BP? Is it under control with the Toprol? Werent you on Remicade with more success at one point?
Plaquenil was added last because I wasn't responding and because I have some Lupus-like symptoms. They just lowered my MTX from 25mg weekly to 20. I'm asking that they either increase it again or increase the Enbrel. Mobic is at 15 mg a day. BP is under control with current meds, but they increased the meds in November.
I was on Remicade before, but even though technically my insurance covers it, I would still be paying over 00 a month for it and I can't afford that. I don't qualify any Patience Assistance any more.
Crunchy, what are you thinking about? The only thing I can see them doing is switching biologics. But what the doctor wants is for me to cut back on work.
You shouldn't be working Deanna. You should be taking care of yourself. It makes no sense. I want you out in the water with me. You will lose that weightI know I shouldn't be working. It scares me the long term effects of all of it, the medicines, pushing it all the time. When does the next crash and burn happen?
But I am just not done with life yet. I shouldn't really put it that way. But I was never good at being the sideliner. And besides all the financial reprucussions of disability, that's what going on disability makes me feel like. I think I would feel exactly like Hutch said that he did when he got approved.
It is like getting the "official" pronouncement, "You are disabled. You are worthless in our society." While I don't believe that is at all true. I have met so many people, even ones who used to be close friends, that think exactly like that. And, our society is designed so that you not only have to perform well everyday, you have to exceed. I have had previous bosses tell me that they didn't care if I had to 16 or 24 hours a day and I should just get a nanny (like them) for my kids.
Of course, I didn't do that. But that is the expectation, work until you drop and then when you drop, we are going to step all over you. If you can't perform, then get out of the way.
So, I keep going. Financially, I am terrified of the process. Then, I have to be honest that the stigma attached to it really does bother me. Maybe if I can at least be honest about that, it is a step closer to accepting the reality of it. It's nice to say one can rise above all those prejudices, but when it hits so close to home that is harder to do.
I know I am not worthless whether I am working or not. And, I know I can still have a wonderful, giving life.
I got kind of excited at the thought of trying for a master's. But then I think of my bad days and the stress of school. Would I be able to do that? And, at the end of the program, would I be able to work?
I am at a loss. I sure would like to know what others think about it. The disease has not stopped its progression in me. I'm tired of having the doctors just shake their heads in frustration and saying they don't know what else they can do for me. I don't feel like a lost cause. I wish they wouldn't treat like one.
HHHMMMM...just thinking....somethings gotta give though. I totally hear what you are saying about not wanting to be treated like a lost cause. Does your insurance offer any coverage for doctors not in your city or state? Maybe there is another doctor out there that knows something new.
I dont know, I feel your frustration. It bothers me that you are trying so hard to make it work and you cant, especially since there are other meds that could be working better for you.
Do you know if they ever give more than one biologic at a time? What about that new one that was just approved by the FDA?
I am frustrated. So, I left a message with the nurse that I am not able to go down on the prednisone any more and would they consider upping the MTX or giving me the Enbrel twice a week because I'm not doing so good.
Now, I'm sure they won't do what I asked because that would be me telling the doctor how to treat me. But it will prompt them to understand, maybe, that things are NOT working for me. I kept telling them that my shoulder was hurting for the past year and that didn't register. So, I called and asked for an Xray. Next thing, I'm getting a MRI and discovering I have the shoulder impingement, bone spur, bone cyst and tendonitis. I know if they had paid attention earlier, a lot of that problem could have been avoided.
Sometimes, they get too rushed or too sure of themselves. Generally, they are wonderful. But their expectations, I think, are too high for these medications.
I'm not giving up just because they can't find a good answer.
I wish I had better answers for you; all I can say is to hang in there! And I guess maybe you will have to stay on the Prednisone for now.I guess I better go get some lacey drawers too. Hey, anything that might help.
Deanna,
Someone on one of these forums said your Doctor is working for you so don't put up with their crap, tell them what you want. Sometimes they think they are God and I know one thing for sure they aren't.
Thanks for encouraging me. I need it just like everyone else here does.