Irritable Bowel Syndrome Message Boards | Had a GREAT doctors appt this morning!

Wow, I LOVE this new doc!! I saw a new rheumy doc this am, a woman, for a second opinion. She was wonderful! I had handed her my 4 page typed out summary of the last year and she was just amazed at the lack of care I have received! She actually listened to me, spent an entire hour with me, than had x-rays done and spent another half hour with me!

She believes I've had RA for probably 5-7 years, minimum. She absolutely believes thats why I can't carry a pregnancy. The x-rays showed bone erosions in 8 fingers, 6 toes, both knees, shoulders, hips and the little bone at the top of my spine. I have about 20% of the cartilage left in my knees and she said the deformities in my fingers will not go away. She was very blunt but very "real" and very caring. She said she is amazed that I'm even making it to work everyday.

She was part of the clinical trials for all the biologic drugs for RA. She said that since I already have organ involvement, we need to be super aggressive. She is increasing the steroids, not real happy about that but she said if I don't get the swelling down, I will have permanent nerve damage. I started crying and told her I was already fat and she hugged me and said not to even give that a second thought right now. She said the steroids change your metabolism and make you store fat, that I WILL gain weight no matter how careful I am and its ok, that we will deal with the weight later. She is doubling the dose of the Enbrel injections and Imuran I'm on. I'll do this for a month. Than, I'll take a few weeks off the Enbrel and than start Humira instead.

Basically, "normal" people produce a particular protein, people with RA produce WAY too much of this protein. The Enbrel tries to "mop up" the extra protein and the Humira actually stops the production of this protein. My body can not tell healthy tissue from foreign tissue so my body is attacking itself, eating all the bones and soft tissue. Its attacking my babies when I do get pregnant, thats why I can't carry a baby.

She said the increase in medications my make me feel sicker to begin with but she believes that within 6-9 months, I should be feeling a lot better. She said if not, then we will have to go to a cancer drug and remicade and one other drug thats pretty nasty. She is saving that for the "if everything else fails" because it would pretty much mean that I won't be able to ever even try to have a baby because the drugs are so toxic they cause birth defects, even after you have stopped them. She said MAYBE next spring, if I'm in remission, we could try to get pregnant but she said I'd have to brace myself for another loss, she said as far as my disease has progressed, even once its under control, maybe a 40% chance of carrying a baby to term.

She is calling in a script for some pain patches for my chest. She said my breathing is way too shallow because of the amount of swelling in there and its got to be controlled. She said I have a 50% chance of getting Lymphoma from the drugs and the fact that I have RA increases the chance as well.

All in all, a bit of grime news. However, I feel better already knowing that I'm not crazy! When I told her it took so long to get treated and kept getting told I was just depressed, I thought she was going to explode! She said if I WASN'T depressed, she's be worried! She said with all the pain, the miscarriages, the fact that no dr has treated my properly, she was amazed that I wasn't in a funny farm!

She said there will be more pain and weakness and sickness from the medications but that if I can stick to it, that she promised she would do everything possible to get me feeling better and improve my quality of life.

I go in tomorrow morning for some more blood work and she will call me if that shows anything else. I'm SO glad I made this appointment! Just having the validation that I'm not crazy helps a lot. To actually see the damage on the x-rays makes me feel justified in my complaints. Its funny how a doctor can tell you how bad something is but also make you feel so much better about it!

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Taking it one day at a time.....

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