Archive for category Symptoms
You Don’t Know What You Don’t Know
Photo courtesy science.nationalgeographic.com
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.
(https://www.hopkinsarthritis.org/physician-corner/rheumatology-rounds/round-16-rheumatoid-lung-disease/)
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.
(http://www.nature.com/bjc/journal/v91/n2s/full/6602063a.html)
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!
Running and the Sundance Film Fest
Posted by My RAD Life in Dealing, Drugs, Fitness, RA/RAD, Running/Marathon, Symptoms on January 20, 2013
I ran the longest I’ve ever run this weekend – 17 miles! My marathon training friend and I combined a 5-mile race, a 2-mile in between run, and a 10-mile race, for one epic morning.
The run went pretty well. I was worn out after, and my legs definitely started feeling it around mile 13 or so. The great thing is that all the aches and soreness seems to be normal “I just ran 17 miles” pain, not Rheumatoid Arthritis pain. And that makes me so happy to be sore. 🙂
On another note, I’m going to the Sundance Film Festival next week. This will be my second year going. I have mixed feelings about the event last year. It was a couple of months pre-diagnosis, and I was struggling to be normal and figure out what the hell was wrong with me. My feet were aching, my mood was low, and my energy was pretty non-existent.
The streets of Park City were snow-filled and icy, which made walking on uncooperative feet and poorly-chosen shoes one of the worst experiences of my life. Despite all that, we saw some great films and apparently I had enough fun that I signed up again.
This year’s gonna be a little different. First off, my feet are way better than they were a year ago. Second, I’m only packing ridiculously not-cute, but totally ice/snow appropriate shoes. Third, I can’t drink.
As Sesame Street would say, “One of those things is not like the other!” That’s right, not drinking at Sundance is really not something I’m particularly looking forward to. Drinking is kind of part of the Sundance culture – where celebs drink and bars and clubs literally pop up over night. So everyone I’m going with is understandably excited to party. Hopefully with Joseph Gordon-Levitt. 😉
I, however, just got back a blood test that shows that my over-worked liver enzymes are once again elevated. This is a fun side effect of taking Methotrexate, which happens to be a chemotherapy drug that’s pretty hard on your liver. So, that’s fun.
My friend was excitedly talking about the parties and how our friend is psyched to be ending a detox with a drink-fueled weekend at Sundance. Great. So I told her that I was worried that the whole thing was going to be drinking and I may be seeing more movies than all my friends to avoid the bar scene. To which she replied, “You’re not drinking??!!?” Uh, yeah, still got that disease goin’ on…and still on that drug…which you know because we hang out all the time…so, yeah, I’m not drinking.
I’m trying to look on the sunny-side though, because I’d rather be sober and enjoying Sundance pain-free, than be drinking to try and dull the pain in my feet, making it all the more difficult to walk (go denial-style logic!).
Joseph Gordan-Levitt and Tony Danza posing for pics at this year’s Sundance. (January 18, 2013 – Source: Larry Busacca/Getty Images North America)
23-year-old cyclist Jack Bobridge reveals he has RA
23-year-old cyclist Jack Bobridge reveals he has RA
& is managing well with medications… I like this article because it a) breaks the stereotype that RA only affects menopausal-aged, inactive, overweight women; b) is incredibly brave of him to “come out”; and c) is hopeful because his meds are allowing him to continue cycling and live the life he wants. Cheers to that, Jack!
Never, Never, Never Give Up
Posted by My RAD Life in Dealing, Fitness, RA/RAD, Running/Marathon, Symptoms on January 10, 2013
Happy new year everyone! Today, I feel like 2013 is going to be a great year!
I guess that between the holidays and being stuck in a bit of a flare without the energy to put a positive spin on it or the desire to add to the negativity you often find online, I didn’t have much to say over the last month since my last blog post. At any rate, it’s a new year and I’m back!
Let me catch you up on both my RA and my marathon training. Over the last month or so I’ve been having more inflammation and pain in my feet. The three smallest toe joints in each foot have been pretty stiff and painful. It wasn’t hurting more with running, but it was making me just not want to go running. Or do yoga. Or do much of anything at all.
Despite all that, I’ve started my ski season. It makes my foot, especially my right foot, extremely angry and swollen to ski. It’s a little reminiscent of last year’s ski season, before I knew I had RA, but thought my feet mysteriously had grown because it was such a painful struggle to put my boots on (Nope, they were just majorly swollen with RA!). At least this year my boots go on fine. I just start to feel them swell and press on the boot about halfway through the day. (Yeah, yeah, maybe I should lay off the moguls, powder and trees, but where’s the fun in that?) It’s a little disappointing that I’m not just “cured”, but I’m grateful to be back on the slopes.
Combine my mad ski foot with lack of sleep because of an unexpected, but welcome holiday houseguest, and RA symptoms seemed to be creeping up on me.
Then, like I like to do, I pushed myself a bit too hard. After a week of Christmas parties (read: not enough sleep) and a day of mogul skiing, I decided to go on a 10-mile run with my two Barcelona marathon training buddies. My pace is slower than theirs, but I tried to keep up anyway, and the run was pretty rough. My foot didn’t feel great, I accidentally hyperextended my knee on a steep downhill, and the cold weather and wind made my normally-dormant asthma flare up.
After that, my marathon training started feeling pretty damn stupid. And there’s nothing like seeds of doubt to make everything – from pain to happiness to stress – worse.
I knew I needed a break. I took two weeks off of running completely, only skiing twice (foot wasn’t exactly happy about the skiing). I spent the time doing holiday stuff, eating and relaxing. It felt good to rest, but a little dispiriting. In all that resting, I was secretly giving up on the marathon.
Then last Saturday rolls along. My training buddy and I were supposed to be at 16 miles (wtf, right?!), but my feet were hurting (especially the right one) and just the thought of one mile was enough to make me want to go back to bed. But, I didn’t. I strapped on my running shoes and drove to meet her. I warned her that one mile might be my limit and she could be on her own, and she agreed that I should prioritize my health.
So, we took off. Mile one felt good, mile two great. We got lost in conversation, and suddenly we were at mile eight. I started playing music, and miles 10-14 literally had me grinning. It felt SOOO good to be running. My feet felt fine. Honestly, it was so weird. The last two miles were a little rougher, but totally manageable. Nothing like the miserable 10-mile run I’d done over the holidays.
16.4 miles later, I felt great. I mean, beaming ear-to-ear, exhilarated, and feeling for the first time in nearly a month that a marathon was possible and not the dumbest idea I’d ever had.
Another bonus from my awesome run: I woke up the next day and my feet DIDN’T HURT. I don’t really have an explanation for this. Maybe the run and the stretching after actually stretched them out in a way they needed. Maybe my flare just ended (topic for another post, but my symptoms seemed to disappear with my waning hormone cycle – read: period). Whatever. I didn’t care too much why, I just felt great. AND I’ve continued to feel great all week – my mood and energy levels are way better; I’ve done yoga, weights and a six mile run.
Moral of the story: please don’t give up. Or, in the brilliant words of Winston Churchill, “NEVER, NEVER, NEVER GIVE UP.” I feel like it really is that simple.
Sure, listen to your body. Take a break if you need to, but don’t get sucked into that creeping, enticing lazy, depressive apathy that can take over your life. Strap on your shoes, go for a run (or whatever that activity is that makes you feel happy, powerful and strong). Just never, never, never give up.
RAD Fish Oil
Posted by My RAD Life in Dealing, Diet, RA/RAD, Symptoms on December 10, 2012
Fish Oil!!
So there’s some science to the obscene amounts of fish oil my naturopath has me consuming… yeah!
Thanksgiving Update: So Many Things To Be Grateful For
Posted by My RAD Life in Dairy/Casein Free, Dealing, Diet, Drugs, Fitness, Gluten Free, RA/RAD, Running/Marathon, Symptoms on November 29, 2012
My Thanksgiving and the last week has been awesome, and I’m so grateful for it.
My marathon training had been off to a slow start as I was dealing with some symptoms, fatigue being one of them. It was really hard to motivate.
My last two long runs – 10 and 11 miles – have been great. I did the second long run on Thanksgiving with my parents’ dog. She’s a great motivator & keeps me going fast.
So now I’m feeling like a marathon may actually be a possibility for me. I’ll be getting X-rays in February, so I’ll be able to see if I’m doing damage, but so far I feel great. I love the feeling of getting out and running. I’m so grateful to live in a place with such awe-inspiring running trails.
Then I spent the rest of Thanksgiving cooking – 2 gluten-free, dairy-free pumpkin pies, 1 gf, df pumpkin bread, and a grilled zucchini/squash salad tossed with garbanzo beans and olive oil. Yum! My family was very supportive of my restricted diet (with a little teasing, of course!). I am consumed with gratitude for my supportive family and friends.
Also, perhaps one of the biggest things I’m thankful for: my symptoms have been really minimal. AND, I’ve gotten the hang of the syringe, so self-injection is finally pretty painless. The verdict: I definitely like the syringes better than the pens. Way less pain, bruising, swelling and uncertainty.
I hope you all are off to a great, pain-free start to the holiday season.
Emotions and Other Sharp Things
Posted by My RAD Life in Alternative Medicine, Dealing, Doctors, Drugs, RA/RAD, Running/Marathon, Symptoms on November 15, 2012
No, it has nothing to do with this post, but this baby hedgehog is waaaay cuter than any of the sharp things in my life. Give me a baby hedgehog over acupuncture, blood tests and Enbrel any day!
I went for my second acupuncture appointment a couple of nights ago.
I would love to say that it was an enjoyable, healing, relaxing experience. But, in truth, my heart was racing and blood pressure was high before the needles even came out. I’m not sure why – it wasn’t so bad last time.
So my heart was racing, and I was sweating, and my acupuncturist and an observing student (who I had recently met at a party and who now knows way too much about me – awkward!) were sticking me with needles, and I was talking myself down from a panic attack.
Weirdly, the needles hurt more this time than the first time. I felt each one going in, and some of them felt uncomfortable as they were in my skin.
After the acupuncture, they gave me earnest tips on how to improve my circulation – ginger foot soaks, chi generating hand exercises…
They were well-meaning and those things might actually work, but in that moment I was so overwhelmed. How many things can I try? What other ridiculous suggestions is the world going to throw at me?
So leaving the acupuncturist, I just felt depleted. Every part of me felt heavy and I felt overwhelmed with emotion.No matter how much you do, how many new things you try, how much sleep you get, how kind you are to your joints, how much effort you put into positivity, there’s always one more – one hundred more – things you should be trying.
It was enough to make me want to curl up in a ball under my covers and cry.
The following morning I saw my rheumy. The report was more of the same – I’m improving, I’ll improve more. Things will get better.
I’m due to get X-rays in February and am very curious to see how those will go.
He did say that he’s doesn’t think going down on meds before my marathon (March 17th) is a good idea, which is disappointing, but I understand the reasoning. I don’t want to not be able to do the race, and I don’t want the race to do more damage than good.
I told him about the problems I’ve been having with the Enbrel pen (button not depressing correctly, bruises and welts, etc.) and my wonderful, amazing, patient, kind, God-send of a nurse gifted me four Enbrel syringes to try out. I am about to do my first one (post for tomorrow!) and am so nervous, I’m procrastinating by writing this.
The beauty of the syringe is that you have complete control of when the medication enters you and how fast. The downfall is that you have complete control and you get to see the whole thing. AHHHHHH!!!!!
I’ll let you know how my injection goes…
Needles
Posted by My RAD Life in Alternative Medicine, Dealing, RA/RAD, Symptoms on November 7, 2012
This isn’t me. I wasn’t nearly this calm.
I’m way overdue for a post, and realized I never told you about my acupuncture experience. So, here goes…
Acupuncture has always really freaked me out. The needles! Ack! But in my determination to let myself try anything to feel/get better, I felt like I couldn’t ignore this option any longer.
A friend of mine is actually training to be an acupuncturist, so she suggested I go to her school’s clinic on a day when their “auto-immune expert” was working. Going to a school clinic keeps the costs really low, and having a teacher there ensures that I’m getting someone who’s really knowledgeable.
So, I went. You can’t really feel the needles, but it is a kind of scary process. I found it impossible to relax and when I accidentally looked down at my legs, I got a bit freaked. The needles don’t hurt being taken out either.
I did have one needle, placed in the front of my left shin (supposedly on the autoimmune line or something), that felt really uncomfortable. A dull, throbbing sort of uncomfortable, not a sharp pain. The acupuncturist took the needle out based on my reaction before I even had to ask.
Afterward, I felt really dazed and emotional. Driving back to work, I realized my thoughts were drifting to a friend’s death I hadn’t thought about for quite awhile. I looked this up later and some sites do say that it’s common to have acupuncture stir up old traumas.
Another thing was that my left wrist hurt, which was where I was hurting the most before the acupuncture. But now it was hurting in a slightly different, burny way for about a day after. A couple days after that, my wrist felt fine, I felt lifted – like emotionally lighter – and a little bit better physically. Weird.
I’m going for my second appointment in a couple of weeks, so maybe I’ll be able to better see and articulate the benefits more clearly then.
You ARE a Beautiful & Unique Snowflake
Posted by My RAD Life in Dealing, Drugs, RA/RAD, Symptoms on September 22, 2012
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 ;).)
No More Needles
Posted by My RAD Life in Dealing, RA/RAD, Symptoms on September 17, 2012
Maybe this is the answer to my last blogpost on the woes of self injection. Replacing needles with lasers and a puff of air? Sign me up!!
http://techcrunch.com/2012/09/13/no-more-needles-painless-laser-injects-drugs/
-
You are currently browsing the archives for the Symptoms category.
My RAD Life 