Lately I’ve had a few people ask me how I’m feeling. So I thought it was time for an update..
Well, the good news, is that things have been going very well. I’m on the new medicine now (Remicade) and it is doing its thing. This is a big drug and like all big drugs it has a long list of side effects. A few folks have wondered if the potential side effects are worth it – well for me right now they are. When I think back to how I was feeling this past summer and fall, I’m very thankful to finally be on Remicade. But I’m not naive I know that this likely is not the long-term solution – but for now, I’m able to feel better and hopefully there is some healing going on.
Remicade is delivered with an intravenous infusion – so this means I go to a special Remicade “clinic” where a nurse supervises the entire process. Right now I’m on an eight week cycle but I have a feeling this will change… I’m currently in my eighth week and I’m honestly not feeling that great.
Last week I started to notice some extra fatigue and this week has not been great. A few symptoms are back and the fatigue is quite overwhelming. So overwhelming that I haven’t been able to run or snowshoe this week – and this is a big deal since I always try to be active regardless of how I’m feeling. As a consequence I’ve been taking it very easy this week – not easy to do but I really don’t have any other options (yes, I’m learning to listen to my body).
I have my next infusion on Friday. I’m hoping this helps to quiet down the symptoms I’m experiencing and that in a few days I get my energy levels back. In addition to the Remicade, I’m taking a large number of supplements in efforts to help reduce inflammation and to heal my gastrointestinal tract. I don’t know if these supplements are working or making a difference but I’ll stick with them. I am dealing with some lingering effects from all the darn Prednisone I was on this year – incredible lower leg swelling – to the point where I can feel my calves expanding and stretching the limits of my pants… This is worrisome but so far I haven’t been able to determine what to do about this (if you have any ideas – post a comment). I’m also dealing with very low iron stores but they’re not quite low enough for me to qualify for iron infusions… so this is another thing I have to figure out.
I’ve also started researching alternative therapies. Don’t worry, I’m not going to stop the Remicade and do something radical but I think it is important to know about the other options that are available. Some people get weirded out when I bring up things like FMT but it is a treatment that can work. I’m not “ready” for it yet but I do know people who have done it. There are also various dietary changes that might help as well – I’m always reading and researching these options.
So, this is where I’m at. I’d say I’m doing very well. For the most part I feel good. And most importantly, I’m optimistic about my health moving forward. (Fingers crossed. Knock on wood.)
Sorry to hear about your setback friend. However, you are MUCH better than where you were in the fall. We have no choice at times to listen and rest. In the grand scheme of life, this is a blimp. I”m here for you always…
Thanks Amanda! Agreed this is one little blip. Need to work out the medication kinks. Good news is I met with my doctor on Thursday and I’m moving to a six-week Remicade cycle and the wheels are in motion for me to see an IBD Specialist.