Hello, Have you ever gone to the doctors office only for them to tell you that there is nothing wrong? That was my day today.
Today I went to visit my nephrologist. I got good news and bad news. The good news is that my kidneys are fine. The bad news is that I'm "no longer eligible for cellcept." It just so unbelievably frustrating to hear that. I know that its a good thing, but in another sense its not. Its frustrating to know that I'm going to have to keep waiting to get worse before I can get better. I'm tempted to give up on my meds altogether. At least when I start to get really sick then the doctors will actually believe me and I wont have to wait to get anymore sick. I'm sick of having to wait to get more sick. I already dont feel good and am in mid-flare mode. It just never seems like its enough. At least my cardiologist believes that Im really ill. Still, I'm done with every form of medication except wellbutrin and xanax since I know I cant stop taking those without getting ill very very quickly. I havent actually started my new heart medication so technically I could just go and return it to target, or I could just keep it.
I know people say that there is a possibility for blood cancers and other really bad side effects from cellcept or cytoxan, but is it any better than having to take prednisone for 3+ years? I cant even get below 10 mg without going on full flare mode.
I want to be lupus free as soon as I can and I am not buying the whole "Lupus gets better with age" bullpoo that my nephrologist tried to sell me earlier today. I know lupus, Ive had it since I was 14, it hasnt exactly "gotten better with age".
Anyway, I just wanted to vent. Its been a very trying day.
I have so been where you are. It's like free fall in slow motion. I hate it! It doesn't seem very effective to have to wait until your health deteriorates sufficiently to get the help you need. And I have often thought the same thing. If I just quit taking my meds then I will get really bad again and then maybe someone will take me seriously. It is very hard to be so sick on the inside and look so well on the outside. I have found that I feel better once I just let the frustration and sadness wash through me, rather than fighting it. I am sorry and I hope you feel better soon.
All of these medicines for Lupus are toxic. They should only be used for organ threatening Lupus. The side effects from long term use of Prednisone affects your bones, wt gain. I feel for you I know this disease can be so overwhelming. I've had Lupus for 22 yrs it seems to be getting better. I flared up much more for yrs but now less flare ups. I also take Cellcept 1,000 mg & 5 mg of Prednisone. It takes a while to wean Prednisone especially if you've been on it for a while. Be patient you will get better. God Bless
My vote is to get a better doctor. Perhaps one at the university level. I’ve been on steroids for 23 years so I could raise my daughter. Otherwise I would have been unfit bedridden parent and her abusive dad would have received custody. It also happens that those steroids kept lupus out of most organs except for linings of lungs, chest and heart. Doctors here are now taking this pro-active.approach since I opted for it so many years ago. Now I’m going to try Benlysta and hope to reduce steroids more. But I did what I had to do at the time. Really didn’t expect to live this long so life is all gravy now even though so painful. Don’t give up, just get a Doctor that believes in lupus but more so believes in YOU! Good luck and much love, Sheri
I am glad that you can vent here! We are here to support each other. Sometimes a good vent and/or cry helps us so that we can then take a deep breathe and bravely keep on keeping on. Hang in there and I pray that all of these wonderful posts from the awesome people here will help lift your spirits today. :)
I totally understand and I use to get so frustrated with my doctor but then I use to think they were just trying not to give me any more meds than necessary. But usually that is where the next visit was a disaster and I was so sick and we would have to start over again. I almost wanted to exaggerate so that we could just be consistent. No wonder my family doesn’t believe me that I am sick. I learned to be more prepared with history and not just that day stauts for doctor’s visits the roller coaster did not happen as much. A good doctor makes all the difference.
I know all too well how u all feel. That’s the point of this group I guess. We understand each other. I so wish the people in my life really believed me when I say I’m suffering. But they think im just complaining I wound up in the ER thurs from side effects I’m having from the benlysta infusions I just started 6 weeks ago. I hope they go away and this new med helps. I’m running out of options and hope
I wish u all the best. And I really pray we all feel better soon. We don’t deserve this misery
