› Forums › General Melanoma Community › Infliximab and Hi to friends in the US!
- This topic has 12 replies, 4 voices, and was last updated 9 years, 3 months ago by
Jubes.
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- December 16, 2016 at 7:35 pm
Hi all
i just wanted to tell you that I am leaving today (from Sydney, Australia) to visit my son and his family in New York and it makes me feel a bit closer to all you wonderful folk from the USA who answer my posts here! Two years ago we did not think I would see that second grandson be born and I am just so grateful to modern medical science and my amazing team of doctors. Not to mention my orchestra who have put up with my long absences from work. I almost feel like trying to make an appointment with dr Weber in New York just to see him in person!!
i am ned now after lung resection and we will pet in January to see if disease has progressed anywhere else
the only issue I have now is that my muscle stiffness seems to be returning now that we have stopped the infliximab maintenance (out of abundant caution) my doctors say there is no evidence that infliximab has caused progression in the many cases they have used it for colitis but we are being careful and have noted my progression after infliximab for other patients information. Has anyone else had experience with infliximab for joint and muscle pain? What do you take for these symptoms if you don't take infliximab ??
thanks
anne-Louise
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- December 16, 2016 at 7:55 pm
That's fantastic news! Yay! New life is always a wonderful thing to see… particularly when you've had a glimps of exactly how precious and fragile it is! I would definitely reach out to that doc. That sounds like a cool experience for both of you… even if it's only a quick hello and maybe a warm cup of coffee. ; )
Sorry to hear of the return of joint pain. ARGH! My rheum has me on 500 mg of Sulfasalazine twice daily. It has helped a lot, but took about 5 weeks to really take effect. I'm back to about 90% of normal. Rather than bump the dose, I'm trying to fit yoga in a little more often, some walking, cycling, basically anything to stay loosened up, but not put too much stress on the joints. I think I can handle that final 10%. It's sooo much better than the agonizing pain of every little movement! Thankfully, I have only been hit on the right side….. cervical spine, shoulder, elbow, fingers, hip, and knee. Can't imagine how crushing it would have been had it hit both sides equally.
Have a safe and wonderful trip!!!
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- December 16, 2016 at 7:55 pm
That's fantastic news! Yay! New life is always a wonderful thing to see… particularly when you've had a glimps of exactly how precious and fragile it is! I would definitely reach out to that doc. That sounds like a cool experience for both of you… even if it's only a quick hello and maybe a warm cup of coffee. ; )
Sorry to hear of the return of joint pain. ARGH! My rheum has me on 500 mg of Sulfasalazine twice daily. It has helped a lot, but took about 5 weeks to really take effect. I'm back to about 90% of normal. Rather than bump the dose, I'm trying to fit yoga in a little more often, some walking, cycling, basically anything to stay loosened up, but not put too much stress on the joints. I think I can handle that final 10%. It's sooo much better than the agonizing pain of every little movement! Thankfully, I have only been hit on the right side….. cervical spine, shoulder, elbow, fingers, hip, and knee. Can't imagine how crushing it would have been had it hit both sides equally.
Have a safe and wonderful trip!!!
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- December 16, 2016 at 7:55 pm
That's fantastic news! Yay! New life is always a wonderful thing to see… particularly when you've had a glimps of exactly how precious and fragile it is! I would definitely reach out to that doc. That sounds like a cool experience for both of you… even if it's only a quick hello and maybe a warm cup of coffee. ; )
Sorry to hear of the return of joint pain. ARGH! My rheum has me on 500 mg of Sulfasalazine twice daily. It has helped a lot, but took about 5 weeks to really take effect. I'm back to about 90% of normal. Rather than bump the dose, I'm trying to fit yoga in a little more often, some walking, cycling, basically anything to stay loosened up, but not put too much stress on the joints. I think I can handle that final 10%. It's sooo much better than the agonizing pain of every little movement! Thankfully, I have only been hit on the right side….. cervical spine, shoulder, elbow, fingers, hip, and knee. Can't imagine how crushing it would have been had it hit both sides equally.
Have a safe and wonderful trip!!!
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- December 16, 2016 at 8:14 pm
Hi Anne Louise,
Love hearing good news stories – they help lift my spirits and look to aslightly longer time horizon than the one day at a time which works when things are a bit tricky.
Think I have probably posted this before but might be useful in your case ?
See page 13 in particular as the drug to supress joint pain was a step down from yours and used a different pathway. Might be worth passing on as tocillizumab seemed to work for this patient.
Happy holidays and delighted to hear you have recovered enough to fly to see the family.
Best of wishes
Deb
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- December 16, 2016 at 8:14 pm
Hi Anne Louise,
Love hearing good news stories – they help lift my spirits and look to aslightly longer time horizon than the one day at a time which works when things are a bit tricky.
Think I have probably posted this before but might be useful in your case ?
See page 13 in particular as the drug to supress joint pain was a step down from yours and used a different pathway. Might be worth passing on as tocillizumab seemed to work for this patient.
Happy holidays and delighted to hear you have recovered enough to fly to see the family.
Best of wishes
Deb
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- December 16, 2016 at 8:14 pm
Hi Anne Louise,
Love hearing good news stories – they help lift my spirits and look to aslightly longer time horizon than the one day at a time which works when things are a bit tricky.
Think I have probably posted this before but might be useful in your case ?
See page 13 in particular as the drug to supress joint pain was a step down from yours and used a different pathway. Might be worth passing on as tocillizumab seemed to work for this patient.
Happy holidays and delighted to hear you have recovered enough to fly to see the family.
Best of wishes
Deb
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- December 16, 2016 at 10:15 pm
Hey Anne Louise,
Yay for you and your trip to peeps in the Big Apple!!! I knew you could do it! I am not much of an expert re rheumatism generally other than anti-inflammatories are typically prescribed. Melanoma and kiddo's are more my area!! HA! Weird combo, right? Anyhow, hopefully your arthralgias can be controlled before they get too debilitating this time!! Mostly just wanted to let you know how happy I am for your NED status and a great trip! Love, celeste
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- December 16, 2016 at 10:15 pm
Hey Anne Louise,
Yay for you and your trip to peeps in the Big Apple!!! I knew you could do it! I am not much of an expert re rheumatism generally other than anti-inflammatories are typically prescribed. Melanoma and kiddo's are more my area!! HA! Weird combo, right? Anyhow, hopefully your arthralgias can be controlled before they get too debilitating this time!! Mostly just wanted to let you know how happy I am for your NED status and a great trip! Love, celeste
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- December 16, 2016 at 10:15 pm
Hey Anne Louise,
Yay for you and your trip to peeps in the Big Apple!!! I knew you could do it! I am not much of an expert re rheumatism generally other than anti-inflammatories are typically prescribed. Melanoma and kiddo's are more my area!! HA! Weird combo, right? Anyhow, hopefully your arthralgias can be controlled before they get too debilitating this time!! Mostly just wanted to let you know how happy I am for your NED status and a great trip! Love, celeste
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