Happy Monday - in the US, it is a holiday so I’m off with the boys and will hopefully spend most of the day outdoors! Today’s post is about last week’s rheumatology appointment which I recognize is probably not interesting to many of you… but writing is (a big) part of how I process things. So feel free, as always, to skip!
Bottom line, I should have sent a mychart message to my doctor letting her know how much I was struggling. I had been calling the nurses line for prednisone refills so as not to bother her. I know how busy doctors are and how many mychart messages they get so I was trying to be a ‘good’ patient. But my doctor said I need to message her when things aren’t going well so we can trouble shoot together.
She wasn’t happy with how high of a prednisone dose I had been on for so long (20mg for much of the last 2 months) and she thinks the flare is in a tendon rather than a joint so that is why the joint injection in April did not help at all. They can inject the tendon, but not until July as you can’t inject the same site within 3 months. So I am switching to a stronger non-steroid anti-inflammatory drug and hopefully that will help with the pain, and I will start tapering off steroids which is going to be a process since I’ve been on a high dose for so long. I can’t wait to be off prednisone because it has wreaked havoc on my sleep and makes me feel super jittery and extra irritable…
The string of flares I have had in the last year+ has made it clear that the drug combo I’m on is not working. We have been switching things up for the last 9 months or so (increased the max dose of a drug (methotrexate), switched from oral to an injection of that drug, changed my super expensive other injection, etc). I’ve known the next option is in-clinic infusions but I was so opposed to this that I wanted to exhaust all of our other options.
But given the pain I have been experiencing lately, I had recently come to terms with the fact that I needed to accept that it’s time to try infusions. I have had such a mental block around them for a variety of reasons. First and foremost, they sound like a huge hassle. Initially I will need them every 2 weeks and they will give the infusion over 2 hours to make sure I tolerate the meds. Eventually they can speed it up to an hour. So all in, I’ll be ‘off the desk’ as we say in our industry for about 3 hours when you factor in the drive, getting the IV set up, etc, but that will decline to about 2 hours eventually. She said patients bring their laptops and work during the infusion. So I can at least keep up with email and such during those appointments. And then once we figure out the right dose and cadence, I could have infusions as little as every 5-8 weeks. Which doesn’t sound too bad, especially if it means I am living pain free. It will be a process to get to fewer infusions but every 1-2 months doesn’t sound terrible. In the meantime I am going to have to do a really good job of tracking how I am doing so I can closely partner with my doctor to figure out the dose and cadence - I plan to use my W222 planner to track symptoms/overall health.
I think much of my mental block around infusions is less around the process (I handle needles/procedures well and have really good veins) and more related to accepting that this means I have a disease that is hard to manage. I can kind of gloss over the fact that I have a chronic illness or be overly stoic about it in a ‘it’s fine, I’m fine, everything’s fine’ way. But sometimes everything isn’t fine which is an uncomfortable place for me to sit.
I have asked my doctor if I brought this on myself by taking on more responsibly at work last spring which means more stress and more travel. She said that is not the case and that if my disease was well-managed, I wouldn’t be having flares, even with an increase in stress and travel. I did have a long flare-free status quo period before we started a family, but since getting pregnant, my disease has been a lot harder to manage. She said this seems to be common among her patient population - it’s unexplainable at this point but there is a thought that pregnancy permanently changes your body and in particular your immune system, so different solutions are sometimes needed after having kids.
So now I wait for insurance to approve this new treatment plan (which is even more expensive than my $1k/week injections!). I’m hoping I can get my first infusion in June.
I am grateful that overall I don’t feel terrible. The hand pain is a major inconvenience and definitely impacts day-to-day life since it hurts to write, shake hands, grasp things, cut up food, etc. But my feet joints aren’t impacted so I can still run and be active. That’s something I wasn’t able to do during the onset of my disease in 2013 so it could be worse. Afterall, running is such a stress outlet and also another way I process difficult things. But I’m crossing my fingers and toes that insurance approves this new treatment plan ASAP because now that I have come to terms with it, I’d like to start it ASAP so I can get back to full health.
18 comments:
Wishing you all the best with the infusions and hoping this eases the pain and calms flares for the long haul.
*Hugs*
Oh Lisa! First of all, I completely understand about your block about the IV. Not only is it a huge pain in the ass (yikes, and you are SO busy) but it also is saying that hey, I have a disease, and it's not at the moment well managed. That is a very hard thing to come to terms with. Also, I understand the feeling of guilt about bringing it on yourself. I am glad the doctor was able to reassure you that this is NOT the case. I have exactly that tendency too, to say "it's fine, I'm fine" until I am really NOT. I totally get this.
But now that your hand (literally) is kind of forced, I am happy to know that the medical team is doing something to manage it. You are such a busy woman with so much on the go, and being in chronic pain and with disrupted sleep from the steroids is just not something you should have to deal with. Hopefully this will help, and as you say - better the hand than the feet. Good luck! xo
Oh Lisa, this is rough but I'm glad that you're moving forward with the infusions. I am guilty as charged about all of the things that I "don't want to bother" other people with, and it never works out well. The time between now and your first treatment will fly by, and you'll have relief soon.
It sounds like you have a great plan and are going into this with open eyes-- which is wonderful. I also have an autoimmune disease (psoriasis), and pregnancy changed my body's response to it in a HUGE way as well. My BFF has been recently diagnosed with RA, and she feels very similarly to you re: injections and both the way that makes her feel as a patient and also how she can balance them with her small business and 3 kids. This post is very relatable to lots of people.
Oof, Lisa, this is rough. I have lupus, which is very active at the moment, and it's so annoying. I find the sporadic and unpredictable nature of it quite difficult. At the moment, both my pointer fingers are sore. Hoping the infusions might help.
Lisa, this sounds frustrating and stressful and exhausting. I'm really glad that you and your doctor have come up with a new plan, even if the infusions have some disadvantages.
I am also so pleased that your doctor assured you didn't bring this on. I totally get the guilt associated with that -- but I hope it is comforting to know that this isn't a You Thing, this is just the state of the RA at this moment in time, and you are taking steps to manage it better.
Now hopefully the insurance GETS RIGHT ON THIS (omg, the insurance side of all of this ALONE has got to be so infuriating).
First, I want to say that this post made me go to my derm's online portal and send a message that basically said, "I'm not doing well!!" with my psoriasis. I've been trying to white-knuckle it myself for so long (one of the treatments we've talked about is injections IN MY SCALP, but I'm at the point where I will do ANYTHING to get this under control).
Second, dealing with an autoimmune condition is just a beast, isn't it? I totally understand not wanting to bother other people (are you a 1w9?!) because I'm the same way. But I'm glad you were able to have an honest convo with your doc and figure out a new treatment plan. And you were able to get the reassurance that your condition isn't due to your job/travel/stress levels, but it's just what it is. I'm sure that was relieving to hear!
Good luck and I hope you'll continue talking about all of this because it really helps. <3
my heart goes out to you reading this post! first, i hope you know you ALWAYS can use the portal if your treatment plan isn't working - that's exactly what it's for! Never feel like it's bothering someone. If the doctor feels like that's too complicated for a portal question, they will just ask you to come in. I don't think any dr would want to NOT know if a patent was not doing well on their medications! and i'm sorry that you ended up on steroids for so long. that is TOUGH!
very much hope you can get the new treatment approved ASAP and that it really helps. I know i have definitely seen patients with conditions like JIA or IBD be hesitant to move to stronger treatments because they just don't want their condition to be at that level, but then i've also seen those kinds of treatments help SO SO much (and sometimes the side effect profiles are actually way better than things like chronic steroids!). thinking of you and sending healing thoughts + vibes!!
I am so sorry Lisa that you've been having issues with your treatment and I can understand the frustration about figuring it out... with yourself, your doctor, the insurance, etc.
It's hard to accept that you have a disease that needs to be managed and I can imagine that it's harder to accept if you have to go in for infusion than 'popping pills' at home. I do hope that this is the right path for you though and that you'll be pain-free. I am so glad you can still run/be active as this is such a huge mental outlet for you.
Oh goodness, Lisa. I'm so sorry. This sounds like a lot. I've been on prednisone for asthma and upper respiratory infections and the lack of sleep is staggering. I don't know how you are functioning. Both my pinkies are messed up. They feel broken most of the time. I take a medication, but lately I've been so busy in the mornings that I forget. I am also so grateful that it hasn't impacted my feet so that I can run and workout. AND - I'm also with you on the 'well, it stinks that I have celiac', but when SIBO was diagnosed and is difficult to treat - it really is challenging. I don't want to take the med they have me on, but I'm also afraid to stop taking it. I feel the same way with Reg's epilepsy. Most days I feel like, Oh - we're managing this. Then when we found out that he had a neuro cognitive issue on top of that? Well, I have moments where I feel so lost and hopeless. He made $100 caddying today, but lost the money before he even got to his car. He can't remember what he did. Eek. I hope the infusions help. Sorry you're dealing with this.
This is so tough. I really hope the new treatment will work well for you and will give you some relief.
You already mentioned this to me, so I knew you had made this decision. It sounds like it's absolutely the right course of action, and once you get used to the infusions it won't impact your life that much. As a matter of fact if it manages the RA better, your life will drastically improve. Just getting off the prednisone should help tremendously- not getting good sleep is awful. I actually know people who have terrible anxiety/panic attacks from steroids, and you've been on a high dose for so long.
I hope you can get moving forward on this ASAP!!!
Aw this sounds so hard and I totally share the mindset of just trying to power through hard things or blaming yourself. I'm so glad you shared your struggle and are talking to your doc to take the next step. You got this. Sending many many hugs your way!
Thanks for sharing Lisa, this seems such a challenge to having to deal with it for life. I'm glad that you've overcome a mental barrier to accept that you'll have to do infusions and that is not as bad as you thought. you can take advantage of those hours to listen to audiobooks? or just relax and recharge? Important to accept and make the best out of it, and you won't have that much pain.
I'm the type of person that while loves to google about everything, always go to doctor for the smallest thing because I trust specialists judgement and afraid of missing the right timing for the treatment. obviously health care is much easier to get in Jakarta, it's a phone call away or even an email away, I know in the US is more difficult so it's natural that you just keep doing what you thought would work. I'm glad that your doctor caught it up and is proposing new ways to deal with it. hope it goes well.
Lisa - I'm a long time reader and maybe a first time commenter? I can't remember. I don't comment on blogs as much as I should anymore! Anyway, just wanted to say that I can truly empathize here and you articulated so well something I'm personally going through so I appreciate your out loud processing :) I also manage a chronic autoimmune condition (that strangely manifested after pregnancy and childbirth. SO WEIRD.) and it is hard for me to have flares that I can't just power through. When I need to change treatment I tend to feel avoidant or a bit fearful because it's like I have to admit to myself then that I am dealing with something that needs to be "managed." It usually takes my doctor or my husband gentlty saying "Hey, it seems like you are struggling more than you should." Of course all of us folks managing chronic conditions KNOW we are managing something, but it always feels a bit scary when something has to change. It can be an emotional rollercoaster, which is not what any of us need when dealing with something physical. Sigh. Anyway, no advice just glad you are taking the next steps and seem to have really good support. My hope is that you find relief and that it's easy.
I feel for what you are going through and really hope that by now, the new process is approved and you are on your way towards a more pain free existence. I applaud your patience, even though to you it probably does not seem like you are being patient, but I am sure not only the meds are making you irritated, but the situation in general is! I have heard of pregnancy causing other changes, so that kind of makes sense that it would also affect your RA, but that does suck, since you were on a good track before.
Good luck with the logging; when I had to do the elimination diet, I had to log everything and write down what I ate, how it affected me, blah blah blah, and it was sometimes so frustrating as it was hard to find a pattern. However, it must be done, as we humans have a hard time remembering things for real, and need to write them down! My friend who is in the Mars experiment has to write down EVERYTHING, every grain of salt she puts on her food, every squat she does, every packet of coffee she drinks. She is in the experiment for 13 months and is on her 12th month and I think she is ready to be done with that, although she said she doesn't mind logging the food and having the accountability to herself. I know your thing is different, but perhaps tracking will be positive in some ways?
I'm so sorry! I know that all of this is frustrating! I'm glad that insurance approved the infusions and you are going to be able to get started on this updated treatment!!! Hopefully as time goes on they are doing more research and developing better and better treatments!!!
Lisa, this is so hard to read, I can't imagine living it. I hope that the insurance did the right thing (sigh) and that you have started your infusions. And most of all, I hope they HELP! Your doc sounds like they are the right person to guide you through this process, which I hope is reassuring. You don't know me, but I'm keeping you in my thoughts as you navigate this shift in your management. Thank you for sharing.
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