Despite my kind of terrible afternoon at my Remicade infusion, I did get to finally see my rheumatologist after waiting over four months to get an appt. with him. Luckily his clinic is in the same building as the Remicade clinic, so I got to hobble over with my i.v. pole to see him. I finally can feel a bit more hopeful about things because he spent is time with me, asking me how I've been and listening to everything I said-- I was just honest with him and told him that I just want to feel better, even just a little because its been so long now that I haven't been able to live a normal life. He actually seemed a bit more sincere this time. The best part is that he has now offered me some more options for treatment.
He wants to keep my going with the Remicade every 6 weeks, but has now increased it up to 900mcg, to see if the extra dose helps at all (he said it can only be increased one more time because 1000 is the top maximum safe dose), and he wants to start me on a new immunosuppressant drug called "Cellcept"-- he just can't start me on right away because its very expensive and needs approval through our health system first. So overall, some good did come out of this rough day.
I am just very worn out from it all, and dealing with an increase in pain and fatigue from the Remicade... but hope that I wake up tomorrow morning a bit better than I am now.
Just wondering is anyone else is on or has tried "Cellecept"? and if it seems to help any? and also how well did you tolerate it? I'm a bit worried just because every other immunosuppressant drug I've tried has made me more miserable and the Methotrexate seemed to actually set me back.
Hope everyone else is doing relatively well
-Jenna
-Jenna
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behcetshurtsbeyondwords
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I have just come off cellcept, unfortunately it caused more harm than good firstly I came down with a terrible flu and cough that seem to last forever I had to go on antibiotics so came of it until I recovered I then started it again and within 5 days it had caused fly like systems again resulting in another chest infection it went in Like that for 3 months I have now been advised by my BD specialist to come off it.
Not everyone will suffer the same side effects and could work for you which I hope it does.
So sorry about the experience you had a the hospital and I hope your feeling a little better.
Yes, your advice is very helpful. Ultimately, you are right, we can't always go by what others say about a med. I am going to try it because otherwise I'll just be sitting here doing nothing else to help myself when there is other help being offered. I guess it can be nice to hear of how it worked for others, but really meds treat every person differently.
I started cellcept around a year ago and it has been BRILLIANT! one of the few drugs that have been amazing and have particularly helped my eyes (I have bilateral uveitis and swollen optic nerves) but cellcept has helped me get a little bit of vision back in my right eye.It also works great as a compliment to remicade
I personally think it is a great med if you can try it on yourself.I really do think it is dependable on the person whether you have liver function problems from it,at my worst while taking cellcept I was also on amitriptyline,60mg steroids,pregabalin,fentanyl patches,sodium valproate,celebrex,colchicine,tramadol,oramorph,zomorph,omeprazole,paracetamol and remicade every 4 wks and my liver function tests are always ok.I do know it is different drugs absorbed different ways but atleast a few were through the liver too and I was completely fine on it.
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Humira anyone?
10 years of BD
Is emotional coldness and heartlessness a common symptom??
