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Another newbie

562 Views 5 Replies 4 Participants Last post by  so_darn_tired
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.
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Hello there :) and welcome!

I think that with all that little lot you have a perfect right to feel rather fed up and to have a bit of a rant! Things do sometimes seem never-ending and that is incredibly frustrating.

It sounds like you have a good relationship with the new rheumy and that is good. I hope that you can soon get back to feeling a whole lot better.

sending loads of hugs and positive healing vibes,


Welcome to the forum.

Sometimes I wonder if Cell Cept is helping at all, until I have to go off of it. It really does make a difference for me. Hopefully you won't have to be off of it for too long. Meanwhile pamper yourself until things improve. After all of your frustration you deserve it.

Take care,
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.
It sounds like you live fairly close to me (Iowa). I travel 1-2 times a year up to Rochester because my parents still live there ;)

You have every right to gripe - you've certainly been through a lot recently with lupus, medication changes, skin cancer, etc and still struggling to find a good doctor locally. Top that off with a nasty long lasting cold and that can really be the last straw sometimes!

You can search our "Find a Doctor" forum to see if there are any recommended doctors anyone here knows of already, or start your own thread there as well if nothing pops up. Good luck with everything!
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. ;)
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