I did a search and really didn’t find any discussions about Cyclosporin A. Is there anyone taking it, tried it, success, reactions? I have to admit this is probably the nastiest one recommended yet. With starts of 50% kidney problems, 1/4 high blood pressure and 48% liver reaction I am probably going to decline this one. The information she gave me also said that it should not be taken for more than a year on average so even if it works it has a time limit. I like to consider myself an open-minded person so any input would be very appreciated.
Scary. Too scary for me, but hopefully someone here has had experience with it. You're so young I can see where you don't want liver/kidney damage. The blood pressure can usually be controlled, but still--the less meds, the better. I'm 20 years older than you, and I still shy away from meds that could harm me. I always have the thought that so what if something helps my pain but causes my liver to fail? I'd be really sorry if that happened! On the other hand, if the pain is overwhelming, why would we worry about anything else?
Before I started Enbrel, every possible SE or risk was foremost in my mind, until I couldn't take the pain anymore. I've been lucky--I wish one of the biologics would help you more!
I agree GrandmaJ! All of the drugs I have tried have had scary pamplets with overwhelming possible SEs ( mtx, sulfa, enbrel, humira) but these are real statistics not just possibilities. Bios seemed scary too but wow they are so easy to take regardless of the injection. I do agree my life could improve with an addition but at what cost? I feel like I fit in an odd category as well because of the type of work I do, I’m not ready or in a financial place to change that so a ton of energy is spent getting through my day. That leaves little for my family or time off meaning my quality of life is drastically effected. The fact that usage of this drug has a time limit to it is a huge deterrent, yet even the idea of having a whole year of life other than just work is tempting. At what cost though? I am only 41 and writing off that much function on major organs doesn’t make sense either. Thanks for the reply I appreciate it!
I can’t comment on the drug but when enbrel gave me more problems than I had in the first place I was swearing never again! Sometimes the risks are too high - I know you love and need your job but I would seriously think long and hard about something with potentially long term complications for short term gains. I’m hopeful that better options will come along in the future …
Thanks, Golfnut! I am thinking along the same lines. There has to be a different option I can add if she wants. I have gone through MTX and sulfas but would like to keep on with humira but my rheumy seems adamant that I either add to it or move on. I can’t seem to get her to wrap her head around my career field and what it entails. It’s a rock in a hard spot without it I would not qualify for insurance or assistance of any kind for minimum of 6 months. I am trying to get approval to go back to school for an additional degree but so far it looks like I would still have to work full time and do that on top.of it and still support my kids but my employer would pay tuition. How does one suffering from PSA ( not fully controlled) do that? My million dollar question right now. Anyway, you are very right this drug long term has no place in my life. I honestly threw the question out just in case I was missing something from the thought process.
I really admire the way you seem to handle these challenges and indeed your whole attitude. However all the admiration in the world wouldn't make the situation any easier.
I've always thought that as rheumys are known to pay more attention to our ability to function rather than pain, they must surely be prioritising keeping us up and going - able to work, able to care for ourselves and to attend to our responsibilities.
I agree that your disease control needs very careful thought and of course there's no way for us to know whether cyclosporine really is the best way to go at this point. The fact that you suspect that your rheumy doesn't fully appreciate what you're up against does ring alarm bells though. What did you mean when you said that she's adamant that you either add to (Humira) or move on? Is that as in move on from this rheumy? Or move on to another bio? Surely there are other bios that would be more sustainable options than cyclosporine seems to be.
I can see you've got big ambitions and I've got a feeling you'll get there, in time! Meanwhile, here's a few suggestions that will undoubtedly be things you've thought about or do already, but anyway. How about looking for a couple of extra hours a week for PsA-relieving activities? Might one of your children, your partner or a friend be able to free up that bit of extra time for you? The things I'm thinking are the sort of things I neglected while doing a 70 hour a week teaching job, such as going to bed even 15 minutes earlier, taking a regular stroll, hiding away with a book or the tv in between tasks at home, an extra bit of exercise such as swimming or yoga, just sitting down in the living room guilt free while chaos unfolds around you ..... and so on & so forth! I know you are aiming to do more work rather than less, but it could be that a bit of slowing down here & there would have a healing effect.
And I've probably asked this before, but is there any chance of finding a different & better rheumy?
Rachael said:
Thanks, Golfnut! I am thinking along the same lines. There has to be a different option I can add if she wants. I have gone through MTX and sulfas but would like to keep on with humira but my rheumy seems adamant that I either add to it or move on. I can't seem to get her to wrap her head around my career field and what it entails. It's a rock in a hard spot without it I would not qualify for insurance or assistance of any kind for minimum of 6 months. I am trying to get approval to go back to school for an additional degree but so far it looks like I would still have to work full time and do that on top.of it and still support my kids but my employer would pay tuition. How does one suffering from PSA ( not fully controlled) do that? My million dollar question right now. Anyway, you are very right this drug long term has no place in my life. I honestly threw the question out just in case I was missing something from the thought process.
OMG Sybil! I have more to say thanks! I don’t have time this morning to respond to this appropriately. You hit the nail on the head but its 5am and I have to be at work early this morning. Arg! 3 day weekend though, yippee!
I'm feeling a little guilty about exaggerating .... it might just have been a 60 hour week! Enjoy your long weekend!
Rachael said:
OMG Sybil! I have more to say thanks! I don't have time this morning to respond to this appropriately. You hit the nail on the head but its 5am and I have to be at work early this morning. Arg! 3 day weekend though, yippee!