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Daina Living With It Hello, I'm a 33 year old mother of one four year old boy. I... Send Message Subscribe: Daina

Tuesday, June 02, 2009
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After being on Remicade for nearly a year, I'm really seeing the benefits. I'm still getting the infusion every five weeks and I'm at 700 mg an infusion. I usually have about a week of pretty bad pain throughout that five weeks, but that's doable and I know when it's going to happen. I recently had a...

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Lene Andersen
Thursday, June 04, 2009 at 01:00 PM

Whoa, you have had a hard time of it recently!

Unfortunately, I don't know anything about this - I think you would need a medical degree to be able to advise you one way or another. The only thing I could do is do a search in Google and I'm sure you've done that yourself already. I would recommend that you make an appointment with your doctor to discuss it in more detail - I'm sure they're going to say they don't know anything yet, but al bit of insight into what they're looking for and what the possibilities are it would be better than nothing.

Good luck - please let us know how goes?

re: Untitled Comment
Daina
Friday, June 12, 2009 at 06:54 AM

Hi. MRI was done Tuesday, then had to go back in for more views yesterday. Yesterday at about 4 the doc called to tell me the results were "inconclusive" and she wants to see me on Monday. After talking to a nurse friend of mine, she believes that they probably will want to do a biopsy. Still as nervous as I ever have been.

re: re: Untitled Comment
Lene Andersen
Monday, June 15, 2009 at 12:00 PM

I'll be crossing everything I have for you today. Hope it goes well and that you find the answers you need soon.

hi - and good luck!
Ellen
Tuesday, June 23, 2009 at 02:59 PM

Hi Daina,

I'm wondering if you have to be careful about the timing of the biopsy around the Remicade infusion - I used Remicade very briefly (2 infusions) and was told the first two weeks afterward have a higher risk of infection, and when I went for the infusions, if there was any unhealed break in the skin, I would have to wait.

     I only mention this in case the other (non-rheumatology) doctors are not aware. But you can check with your rheumatologist to get his/her recommendation on that.

     Hope all works out well for you! Sometimes scans show totally unrelated results that may or may not be a problem. I had calcified lymph nodes show on an spinal xray and my chiropractor was afraid I might have breast cancer, but my GP said, no, a lot of stuff gets calcified as we get older, it's not a problem. So I didn't need to have anything else done.

     I don't know how active the thymus is in adults - my recollection is that it's more important and active in children. But keep us informed, we may all learn something from this!

   Best wishes-

re: hi - and good luck!
Daina
Friday, June 26, 2009 at 08:16 AM

Hello! Luckily, I don't have to have a biopsy, or they would have to time it very carefully. The reults came back that everything looks fine on the MRI. The Thymus eventually turns into fatty tissue, and what they saw is just the beginning of that. I still have to have a follow-up MRI in 6 months and a follow-up on the lung nodules in 8 months, but everything looks good right now, and neither my rheumy or I am worried about anything.

Now I have to have a tetnus shot and a pneumonia vaccine, those have to be at least two weeks before and two weeks after an infusion. Since I have an infusion every 4-5 weeks, it gets a little tricky, but that can be figured out:)

Thanks everyone!!

re: re: hi - and good luck!
Ellen
Friday, June 26, 2009 at 09:12 AM

that's great, glad to hear it!