Posts Tagged Rheumatoid Autoimmune Disease
I’ve got something heavy weighing on my mind that I will talk to my doctor about when I go to see him this month, but that I’ll share here now. First, some background.
When I was a small, small child, I had severe Interstitial Lung Disease. ILD is a catch-all term for a systemic scarring of the lungs that leads to a decreased ability to take in oxygen. (I was the toddler with the puffed up cheeks from the combo of prednisone and oxygen, carting an oxygen tank behind me that was my height.)
They tried to find a reason for my ILD, testing me for everything, including AIDS, and even doing an exploratory lung biopsy. But they never did figure out what caused my ILD.
As inexplicably as ILD arrived in my life, a couple of years later, it left. I progressively regained most (at least 70%, and at times over 80%) of my lung function. I went in for annual checkups every year from as far back as I remember until about age 24, when they finally declared ILD a non-issue in my life. This is highly unusual. Many of the kids who were at National Jewish Hospital with me are no longer here, and my parents were told to prepare for my death when I was being treated and seemingly not getting results.
ILD has always hung over my life like this mysterious legend. Much of it happened before I was old enough to remember, but the annual check-ups, and the way it affected my parents and sister were impossible to avoid or forget.
So I was a little surprised to get back from Sundance to the news that my mom’s friend had died from ILD and that her husband believes it was caused from the chemotherapy she received years ago for breast cancer. Were ILD and chemo connected at all? I asked Google and found out that not only is ILD connected with chemo, it’s connected to low-dose chemo. As in the low-dose chemotherapy in the form of methotrexate that many of us RA patients use as a treatment.
The stats are pretty scary. In RA-land, it seems that ILD is so common it has its own name: Rheumatoid Lung or Methotrexate-Associated Lung Disease. About 40% of RA patients will have extra-articular disease involvement, as in RA will effect their lungs, cardiovascular system, blood, etc. About 18% of RA patients have lung involvement and, according to one article, ILD. For those living with ILD and RA, the survival mean is a low 3.2 years. (all these fun facts are from this article: https://www.hopkinsarthritis.org/physician-corner/rheumatology-rounds/round-16-rheumatoid-lung-disease/)
The article went on to say: There have been questions posed as to whether methotrexate can predispose to lung disease or whether patients with pre-existing lung disease who are put on methotrexate will develop lung disease thereafter. There’s no evidence for either of those. The fatality rate of patients with proven methotrexate-associated lung disease is around 17%, and re-challenging those patients is not usually recommended. It’s thought that re-challenging patients with methotrexate may somehow cause a stronger secondary response.
This is reassuring…is there a correlation or not?? There’s no evidence that methotrexate causes ILD (whether pre-disposed or not), yet there are patients with “proven methotrexate-associated lung disease”. Huh.
Here’s what another article had to say about it: ‘Methotrexate lung’ can occur when methotrexate is used to treat rheumatoid arthritis or cancer…Most chemotherapeutic agents can cause ‘chemotherapy lung’, acute ILD with the pathological features of DAD. Incidence is estimated at 10%, although it is difficult to obtain accurate estimates due to the complexities of diagnosis and the small patient numbers involved.
Here’s another study about the correlation between methotrexate and lung disease: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1005365/?page=1
Well, great. I feel like my rheumy could have at least mentioned this! Should I be worried since I have a history of ILD? Was it such a non-concern, my rheumy didn’t even bother to bring it up? Should I try to find something else instead of MTX, even though I seem to be getting results?
Does anyone have any experience with this or knowledge about the correlation between methotrexate and lung disease? All thoughts would be much appreciated!
GRIT: noun – firmness of character, determination or strength of character
I think some people are born with a natural abundance of grit. I think my grit, the will to persevere and the optimism to keep going is learned, practiced and fickle.
I’m still trying to figure out why sometimes I’m so strong and determined, and why other times I want to pull covers over my head and never leave my bed.
I think something about the beginning of October triggered the ostrich response in me. Suddenly I bounced from I can do anything to I don’t want to do anything anymore.
When I was diagnosed with my RAD new disease back in March, my doctor marked autumn as the time when I could possibly be in remission and we’d be looking at getting off the methotrexate, and later the Enbrel. My September doctor’s appointment was instead met with an increased dosage of methotrexate and the news that the MTX may not even be working yet. Doc’s new goal for remission: spring 2013.
That’s actually kind of good news because it means when it starts working, I’ll feel a lot better. But also, really?!?!
I left the doctor’s appointment feeling fine about it, but then October came and all optimism drained out of me. I was suddenly so, so, so done with MTX day and freaking injections. All things gluten appeared appetizing, dairy seemed impossible to avoid, my vitamins made me nauseous, and I felt like if I even had to look at fish oil again, I’d vomit.
What’s the point? What if it doesn’t go into remission? Am I really going to do all of this forever? I don’t want to have this life. I didn’t ask for this. F#@! RAD and all the stupid S**! that goes with it.
I stopped taking the vitamins and I laxed up on the fish oil. I cheated on my diet. But I kept going on the drugs.
My negativity quickly started to annoy the hell out of me. So there I was, standing over my morning folic acid and fish oil supplements, a wave of nausea overwhelming me, and I snapped. Out of it that is.
My grit was back.
What’s the point? The point couldn’t be more obvious or important – it’s my health. Is it worth trading because I’m a wuss about injections, I hate swallowing pills, and the smell of fish oil is gross? Obviously not.
So I’m staying the course. I’m back on track. (Although I am being a bit more relaxed about supplements for my sanity’s sake.)
I’m thinking March is gonna be a great month for me. I’ll be running my first marathon and hopefully I’ll officially be declared in remission and will be breaking up with methotrexate. Maybe Enbrel and I will even get to say goodbye. Here’s hoping.
In the meantime, I’m happy to report that I think the higher dose of methotrexate is starting to work. My compromised immune system and the changing season has led to a cold, but otherwise I feel great. No joint pain, no feet pain, less fatigue, less trouble sleeping. I even went on a 12 mile run a couple weekends ago.
Now I just have to figure out how to keep my grit from disappearing on me again.
I finally met someone who also has RA. She’s the new pharmacist at my pharmacy. She asked me how I like my methotrexate. I didn’t really know how to answer. “Like” seems like a strong, simple word when talking about any drug with side effects. I would like it more if it was obviously doing its job, but I think most my progress is from the Enbrel.
She told me how she’d had a terrible time on MTX. She had done monthly injections (infusions?) and had many of the side effects that are associated with chemo, including losing her hair. She’s now been switched to two other drugs and taken off the MTX and prednisone.
As nice as it was to meet someone with RA, the encounter left me a bit shaken. Her wrists and hands definitely show the signs of RA. And she hasn’t found a drug regimen that works for her yet, meaning it’s still getting worse.
It’s so important to remember that you are on your own journey. Her experience isn’t mine and doesn’t have to be. It’s so easy to get caught up in the horror stories. To see the disease path as inevitable. But it’s not. It’s really and truly not. If you’ve just been diagnosed, know that there are more drug options, more knowledge on the disease and more medical breakthroughs and research happening than ever before. We have a ways to go until we understand RA or have a cure, but it’s an exciting time in medicine.
Seriously, before you read another blog post or go to another support group, take a deep breath and remind yourself that you ARE a beautiful and unique snowflake (or at least your RA is ;).)
I think that authoring this blog has really helped me open up about my RA. A lot (not all yet, but maybe I’ll get there) of the shame and nerves that came with “admitting” to someone that I had this disease have faded.
I’ve had two recent experiences telling a date about my RA. The first time I’d ever told anyone about my RA aside from close friends and family and doctors was on my second date with a very sweet guy (maybe a little on the early sign, but I don’t think there are hard and fast rulles with this). We were at a pretty nice, new restaurant, where, being gluten and dairy free, I couldn’t eat half the menu. I asked the waiter about some gluten-free options and happily chose a modified scallops dish.
My date kept inquiring about my diet, giving me ample space to drop the RA bomb. “Are you allergic?” No, not exactly. “Are you trying to lose weight?” What? No…
Finally, toward the end of dinner, I brought it up. The timing was probably a bit odd, given all the opportunities he’d presented me with before. At any rate, I said something along the lines of, “Since you were asking earlier, the reason I’m on this diet is because I was diagnosed with Rheumatoid Arthritis in March.”
Ka-boom. The RA bomb had landed.
I went on to explain that the elimination diet helps you determine if an allergy or sensitivity to a certain food is making your symptoms worse.
He just nodded, asked how I was feeling. Then he asked if it was hard to do physical things, and immediately apologized for his invasive question. I didn’t mind it though, it’s a fair question. I hadn’t heard of RA before my diagnosis, but if I had, it would have probably surrounded the disability/disfigurement horror stories of the disease.
So I brushed it off, saying, “No, it’s really under control with the meds. I barely notice it.” Yes, that’s kind of a lie. It’s not totally under control and I do notice, in fact, I’m probably hyper aware of all symptoms.
I figured that if we kept hanging out, it would inevitably come back up.
I’m happy to report that the world didn’t implode. He didn’t run away and never call again. He didn’t treat me like a victim. It just was a fact.
The second time was similar, but the window wasn’t diet, it was drinking. Since I’m on methotrexate, which is hard on your liver, I’m not drinking much (my doc says 4-5 drinks per week – no, not all at once! – is fine). So we were running, and he was talking about wanting to not have any alcohol for 30 days, so I talked about how I really wasn’t drinking much either.
Then, ka-boom! The RA bomb once again landed.
He asked questions about my treatment and I answered honestly, and hopefully without any trace of shame. I even told him that my symptoms aren’t totally under control, but that clinical remission is my goal and hopefully where I’m headed.
Again, he didn’t run screaming for the hills. He did call me again.
Lesson learned. Your honesty and courage allows other people to react in a similarly courageous, empathetic way. So, no more shame. Thank you blogosphere for allowing me to reach this point. From here on out, I’m owning it. I’m no longer admitting to a shameful thing, I’m informing someone about a part of my life.
I wish I had had enough foresight to take before and after photos, but unfortunately I didn’t. After two cortisol shots, my left wrist is almost back to normal!
A bit of history: I hadn’t verbalized it, but pre-diagnosis I noticed that there was something odd about the bone of my left wrist – there seemed to be two little boney wrist bumps where there really should have only been one. I didn’t really spend too much time thinking about it. Just a little, huh, that’s funny. Fast forward to my first rheumatologist visit: my doc – “How long have these rheumatoid nodules been here?” me – “Say what?”
Of course, him pointing them out and giving them a scary name only brought them to the forefront of my mind. As I began treatment, they didn’t seem to be going down. Then, several months ago, they seemed, in my mind anyway, to be getting worse. Where there were once two smallish bumps, there were now three merging into one massive, swollen, misshapen wrist.
Whenever I caught a glance of it, my mind immediately leapt to the gloom and doom thinking of, oh my god, the disease is getting worse, treatment’s not working. Then there was a little voice in my head telling me I was embellishing both the severity of the physical deformity and what it meant to my disease prognosis. Both voices were making me a bit crazy.
Needless to say, I started wearing some big bracelets. Out of sight, out of mind, right?
Well, not exactly. My next rheumatologist appointment rolled around and I asked if he thought my left wrist was getting worse in an off-handed way. He didn’t say yes, but he just said, “I’ll shoot medication directly into it, that should work better.” Right. In my doc speak, that means yes.
Before I knew it, he was spraying cold numbing spray on my wrist and poking two massive needles of cortisol into either side. Truly, it didn’t hurt much. If you ever have to do this, it’s really nothing to be afraid of. It was more psychologically painful than anything (that’s right, I’m still not used to needles). The spray feels a bit uncomfortable and my wrist stayed kind of numb for awhile after.
Other bad news (at least I take it this way), my doc and I decided to raise my dose to eight Methotrexate pills per week (up from six) along with weekly injections of Enbrel. It’s hard not to be discouraged, because when I first saw my doctor, he threw out early fall as the time we may be able to have my RA in remission and take me off some drugs. The new time is March 2013. Just in time for my marathon for those of you who are faithful readers.
I’m trying to replace discouragement and disappointment of my progress with optimism. And hey, if I’m going to be on this crazy toxic drug, I might as well be taking enough for it to be effective.
I guess I was a bit shaken after my appointment (I need to stop going to these things alone), because I got into an accident with a parked car while parking at my apartment. I was trying to not use my left wrist, which wasn’t something my doctor told me to do but between the shots and the numbing spray, it felt weird to use it. My car is hurting worse than the other guy’s. For those of you who think you might be getting this procedure, bring a friend to drive you home.
The good news of all this is that my wrist is back to the size and shape of a normal person! No more big bracelets (unless I wanna wear them – they are pretty). No more constant reminder of my disease! Yippee!