The Lupus Forum banner
1 - 3 of 6 Posts

· Registered
Joined
·
3 Posts
Discussion Starter · #1 ·
I started off with some sort of inflammatory arthritis a year and a half ago. After trying a few different medications without success, my doctor put me on Remicade last summer. I got a little better from it after each infusion, but not a whole lot better. So, the doctor increased the dosage and decreased the time between the infusions. I had the same results. I got a little better, but then would go down hill again. Since I was feeling so awful, my doctor said I had fibromyalgia also so I started drugs for that.

Then, this year started off with a bang. I started having chest pains and dizziness/balance issues. I got frustrated with my doctors and treatment at home so I decided to go to the Mayo Clinic in Minnesota to figure out what was going on. I'm so glad I went there! The rheumatologist told me on the first day that I did not have fibromyalgia. I was relieved to hear that. After a few days of testing, he said he thinks I have something very close to lupus. It's not 100% lupus, but I definitely lean towards it. He also said that he thinks the remicade triggered it. He changed my medication and put me on Cellcept.

I was on it for a few weeks and noticed a slow improvement. Then, I decided to get a mole checked out on my thigh. It turned out to be non-melanoma skin cancer. I had to get off the cellcept to ensure I wouldn't get an infection when they took out the cancer and stitched me back up. I was also put on an antibiotic.

I have gone completely down hill since I've been off the cellcept. I'm so tired of feeling awful and being in pain all day long. I've got pain meds, but it just sucks being drugged up. I also got a nasty cold and sore throat. I started to get better. Now, it's coming back again.

Sorry to gripe so much. It's normally not like me to do that, but I'm just tired of all of this.
 

· Registered
Joined
·
3 Posts
Discussion Starter · #4 ·
Thanks for the welcome. :)

I still need to find a good doctor locally. I'm not too happy with the doctors I was seeing here before I went to Mayo.

I go to the dermatologist today to get my stitches removed. Then, I can start my cellcept again tonight. Lazylegs, I didn't realize how much it was working either until I was off of it. I'm looking forward to seeing where I am a month from now since I had only been on on it for a month. The doctor says it takes a month or two to start showing it's working, and then about 6 months to really kick in.

Yesterday, was better than a few days ago. I was able to walk our dog around the neighborhood. My ribs still hurt but the rest of me wasn't too horrible. Of course, I always end up hobbling pretty badly by the time I come back from a walk even though it's not that far.
 

· Registered
Joined
·
3 Posts
Discussion Starter · #6 ·
Actually, I live in the DC area. I got frustrated with getting worse here so I wanted the best medical care I would find. Mayo Clinic and Hopkins are #1 and #2 in the country for rheumatology. I was going to go to Hopkins but it takes months to get an appointment. I also had some other problems to get checked out (neurological, balance/dizziness), so I decided to go to Mayo. Luckily, my insurance considered it in-network so we only had to pay for the trip and $10 copays for each doctor per day.

I'll be going back for a follow up at the end of May. I don't mind traveling to see a good doctor. I may look for one at Hopkins as a local doctor. It's about an hour away.

After going to Mayo, I realized why they are in Rochester, MN. People are so incredibly nice up there. There is no way a place like that could function in the DC area. I live here so I can say that. ;)
 
1 - 3 of 6 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top