I’m amazed when I stop and think about how many “assistive devices” I now have in my life. I’m not talking about canes, crutches, or walkers (although I own all of those and have used then on occasion after joint surgery). I’m talking about everyday items that I have purposely bought to make my life (with RA) easier.
So if you’ve seen the new Leonardo DiCaprio / Tom Hardy movie, Revenant, you know how brutal it is when the bear does actually get you. I have to say that my situation isn’t any where close to being that bad and that it’s improved greatly just since yesterday. However, the rosy picture I painted with my last “Good News” post has gotten a bit tarnished around the edges.
I took my second MTX injection on Sunday. By the end of last week, some of my regular, bellwether aches and pains (noticeably my ankles and feet) were starting to protest again in the mornings when I got out of bed. I suspected that this was a result of the MTX wearing off. Sure enough, Monday morning after the MTX shot on Sunday, those joints were once again quiet.
That’s the good news.
The bad news is that I woke up with this weird pain in the knuckle of my left index finger. I
don’t normally have pain in a single small joint. (Large ones like knees, yes. Small ones like knuckles, no.) It’s usually all involved like from the ankles and down across my feet or from my wrist to my finger joints. The day went on and the pain got worse. At times it was actually throbbing and it was very sensitive to the touch. Soon there was a red, swollen knot that had come up on this joint. I was afraid that I was getting an RA nodule. I associate nodules with elevated disease activity, so the fact I was experiencing this the day after I’d taken an RA medication was especially worrisome. After I did a bit more research I learned that RA nodules can actually be a side effect of taking methotrexate! Today the spot is not quite as red, swollen or tender. Based on where it is, I also don’t think it’s a separate nodule as much as the joint being swollen out of shape. If it’s still there in a couple of weeks when I see my rheumy, I’ll find out more.
The other bad news is that yesterday I learned my disability claim had been denied. This was a real blow because I’ve basically been without an income since mid-November when I left the workforce to concentrate on my health. However, today when I spoke with the disability company, I learned that the claim status had changed because they were missing a key form/piece of information from my rheumatologist and they couldn’t complete the determination until they got it. So they retransmitted the form to my rheumy this morning and I followed up with the practice to make sure they were on alert to get it turned around. I also asked that they include a cover letter from my doctor that stated that in her clinical opinion the claim should be approved due to my inability to work on a full-time basis. Hopefully when all that gets done the claim will get approved. The good news is that the claim hadn’t been denied because they had determined that I am still well enough to work full time. That determination can lead to protests and all kinds of issues. We may still wind up there, but it doesn’t sound like it at this point.
So that’s the update on the battle as of today. I hope that today is the day you get the bear and not the other way around. Thanks for checking in.
Okay, so I’ve been whining a lot lately. I think I’ve had reason, but whining none the less. But this past week has borne out my long-held assertion that this, too, shall pass. Here are some updates:
- Monday was my first infusion with the doubled Actemra dose as well as my first methotrexate injection. While I was pretty wiped out Monday afternoon, I was no longer hobbling in pain when I got up Tuesday morning. That was the first time that’s happened in more than a year. The most amazing part is not only the pain relief but how much the mind-numbing fatigue has lifted. Not even the dreaded methotrexate brain fog. I have had so much energy and enthusiasm this week, I feel like a new person. I don’t think I realized how badly I felt until I started feeling better. I even sent a message to my rheumatologist on Wednesday afternoon extolling how great I feel. I know it’s early and I know that I have a history of becoming resistant to treatments, but if this great feeling should go away tomorrow, I’ll continue to be thankful for the wonderful week I’ve had. As the old joke goes, “He may not be Mr. Right, but he’s Mr. Right Now.” This treatment plan may not work forever, but it’s working for now and I’m happy.
- My insurance copay for the Actemra, which was $150 under my old plan, has dropped to $50 under the new plan.
- According to my scales (my doctor’s is slightly different), I’ve lost 15 pounds since I started on my weight loss journey. As a result, all my labs are looking good. Cholesterol is down. Triglycerides (which are the bane of my existence) have dropped by half, well into normal limits. The glucose intolerance I developed appears to be under control with results at healthy levels. All this happened over the holidays where I succumbed to more temptation than I should. The really, really good news? The exceptionally expensive drug that I’ve been taking to support this journey is now covered by my new insurance, so I can afford this investment. (My cost dropped from $1100 to $35.) Of course, I still have to lose more weight than I’d like but I am encouraged by these early results.
- I think I’ve worked through all the (ridiculous) insurance/COBRA issues that cropped up and have my 2016 insurance plans in place as they should be. There are still weird, errant things that have popped up. For example, I got a letter from my December insurance carrier with a bill for $222 for premiums for December. The website clearly shows my payment for more than $600 and fully paid coverage through December 31. No clue why I got this letter and the insurance rep says it was sent in error. Errors like that tend to result in denied insurance claims. And while we’re well into January, I have no doubt there are some miscellaneous claims from last month floating around cyberspace. So I’m still holding my breath but I have paid my premiums through the month of February (for not only health but the previously missing dental and vision coverage), and I am hopeful everything is finally solid.
- I had my follow-up visit with my spine surgeon. My TLIF surgery is healing nicely. I have a follow-up in four months at which time I’ll hopefully be released. At this point, though, the surgeon did clear me to do the stretches to help resolve some issues I’ve been having with my IT band, so I should be able to improve that situation as well. Those stretches tend to torque the spine and my physical therapist was very hesitant to have me do those until I got clearance.
- There are still some things unresolved. The big one is that my disability claim that I filed in November is still “pending”. This means I have had no income since I left the workforce. Under ERISA regulations, they have two more weeks to make a determination. I have no doubt they are looking for ways to deny the claim so I have started my search for a benefits lawyer so I can appeal the decision.
All in all, 2016 is starting off well. As they say in the securities business, “past performance is not an indicator of future results.” This means that just because things have gone well in the past doesn’t mean they won’t go to hell in a handbasket in the future. I’m, if not smart enough, at least experienced enough to know that things can change in a heartbeat. But I at least have hope and that’s a good thing.
I hope your new year also bring you hope as well as health and happiness. Thanks for checking in.
I couldn’t figure out what to title this post. It could be a lot of things including, “Why I Love My Rheumatologist”, or “Take That, RA!”, or even “The Hail Mary.” Better I should just fill you in.
Even though I haven’t always expressed it in this blog, I have been very discouraged. My RA hasn’t been well-controlled since Xeljanz stopped working for me more than a year ago (August 2014). Since then I’ve been through Remicade infusions, daily Kineret injections, Actemra injections and, most recently Actemra infusions. It’s not that we haven’t been trying, my RA is just stubborn. And I must tell you, going from drug to drug to drug without success (on top of everything else that’s happened the last year) has taken its toll. Treatment has been further curtailed because my liver enzymes have been frequently elevated, leading to backing down on my medications and a series of lab tests and a liver biopsy that, fortunately, eliminated any concern of liver disease.
Yesterday I had my appointment with my rheumatologist. I purposely moved it earlier in order to see her before my infusion scheduled for next Monday. I started the conversation by telling her how discouraged I’ve been and that I haven’t had a day that I’ve felt really well in over a year. I also told her that if this the new reality of my life and she told me that, I would accept it, but I couldn’t continue on the way we have been. I needed to either resign myself to not feeling well or we needed to do something to improve the situation.
She pulled up my labs on her laptop and, turning the computer so I could see it, we went over my test results, the notes from my liver biopsy, and my treatment history. We talked about treatment options. We both agreed that we need to see if we can enhance my results with Actemra because, other than Rituxan, I have “failed” on every other biologic on the market.
Pretty much across the board, medical protocol is to start with the lowest dosage of a drug and increase in small increments until you achieve the desired results. This is what we’d been doing for the last year without success. We needed to get the situation under control. I told her we could always back down if liver enzymes or other factors dictated it.
So, starting immediately, this is the new protocol:
- Double the Actemra infusion dosage from 4 mg/kg to 8 mg/kg. First infusion is in three days (assuming insurance approval).
- Add 15 mg of methotrexate via injection weekly (as opposed to the 20 mg. of leflunomide that I was taking at one time and had to stop because of liver issues). Include folic acid to help offset the side effects.
- Monitor labs every four weeks to make sure we’re not blowing out my liver or have other concerns.
She also gave me a steroid injection in my left hip. For the first time in months I got a good night’s sleep without constantly tossing and turning or waking up in pain due to the bursitis.
Yes, it’s a lot of drugs. But for the first time in over a year, I feel encouraged and hopeful. As I told my rheumatologist, if we can get things under control, we can start backing down, but now that Hail Mary pass is what we need.
I appreciate you for coming along with me on this journey and the support you’ve given me. Hopefully this start to the new year will be the start of better health for me. Thanks for checking in.
When I was a little girl, I hated getting shots. Annual vaccinations for school were bad enough but when you were sick and had to go to the doctor, it was even worse. That was because when you got a shot (as opposed to, for example, that great cherry-tasting cough syrup), that meant you were REALLY SICK. That’s what our friends said: “She was REALLY SICK. She had to get a shot and everything.”
The first time I gave myself an injection was in the hospital after my hip replacement surgery. As a precaution against blood clots, knee- and hip-replacement patients are routinely prescribed blood thinners for a period during recovery. The new oral medications hadn’t yet been introduced, so the drug of my surgeon’s choice was Lovenox® which is a daily injection, administered in the abdomen. By this time I was old enough to quit being quite so squeamish getting shots given to me by others, but never in a million years did I ever imagine actually having the courage to stick a hypodermic needle into my own skin. (I swore I’d never become a drug addict because I could never stand to give myself a shot.)
Read the rest of this post at RheumatoidArthritis.net here: https://rheumatoidarthritis.net/living/hurdles/
I posted earlier about the discussion we had at the recent Joint Decisions’ Empowerment Summit** concerning communicating with your doctor. The clever people at Joint Decisions and Tonic Life put our discussion points into a great infographic. Both the blogger and their blogs are listed so you can get further acquainted with this talented group of people (if you aren’t already). I hope this is helpful for you as you prepare for your next appointment.
**Janssen Biotech, Inc., paid for my travel expenses for the summit. All thoughts and opinions expressed here are my own.
I recently read an interesting article about how humans formulate words that connect and convey internal physiological/physical situations to the outside world. A couple of early examples would be the infant crying when they are hungry or in pain morphing into the toddler who can actually say “hungry” or “hurt”. Humans also learn words that convey external situations to internal feelings, like “hot”.
It struck me that this process does not stop as we grow. In fact, this early development helps define our reaction when we hear others say those words. The word “hurt” may conjure up the pain of a skinned knee for one person compared to more traumatic pain for someone else.
In addition, I realized we continue to connect both our emotional and physiological feelings to specific words as we have new experiences. For example, since my RA diagnosis seven years ago, I’ve had conversations with or read many discussions by patients concerning the infusion experience. The words used by (and therefore both the emotional and physiological impact on) patients varied greatly depending on the infusion environment. Probably the most extreme examples are the experiences discussed by patients who undergo infusion in a highly clinical environment, often side-by-side with terminal cancer patients who are also receiving infusion treatments. Compare this experience to patients who receive infusions in a more private, comfortable setting. The people in the clinical environment use words like stressful, depressing and discouraging. Those who receive their infusions in the other setting use words like calm, easy, and reassuring. I can’t help but believe that the same word, “infusion”, conjures up a completely different response and imagery from the two groups of people. Given the demonstrated effect of both stress and positive thinking on medical outcomes, I can only wonder if the less-clinical environment also helps support a more favorable response to the medication.
Read the rest of this post here: https://rheumatoidarthritis.net/living/the-power-of-words/
- I told people that when I “retired” I was going to learn how to use Twitter, call the dishwasher repair guy and finish my second book. I haven’t done any of the above. As the great American humorist, Erma Bombeck, often said, “Life is what’s happening as you make other plans.”
- Two weeks ago (the first Monday of my retirement), I had my first Actemra infusion. I’ve been on the self-injectable version but it wasn’t quite doing the job. I’d feel better for a couple of days, then it would wear off. My rheumatologist suggested that we switch to the infusion because she can adjust the dosage. This in lieu of changing drugs yet again. The only biologic that I haven’t been on is Rituxan. If I also “fail” on that, I am out of biologic options. So far, I haven’t had good results after the infusion. We started on the lowest dose and it hasn’t seemed to helped at all. Fortunately since I’m not working full time I can take it a bit easier.
- I am also thinking that I will discuss with her adding back in another DMARD, perhaps going back to methotrexate which I hate because of the brain fog. Although now that I’m not working, I will be better equipped to deal with that situation.
- Per my earlier posts, my liver enzymes have been elevated. As I expect that we will increase the Actema and that will probably cause even more issues, I went to see my gastroenterologist to see what might be done to help support my poor, overworked liver. I really love this guy and his realistic approach to medicine and after some discussion, he recommended that we do a liver biopsy. He said that the best thing we could do is rule out there is any disease causing the elevated liver enzymes. In my particular case (and I would surmise in many RA patients as well), autoimmune hepatitis can’t be discounted without the test. Once we do the biopsy and rule out liver disease, then my rheumatologist can increase the RA meds. Even though my liver enzymes might be “high”, the “safe” range is expanded. The liver biopsy (which doesn’t sound very pleasant as you are awake when they do it), is scheduled for about 10 days from now — right before my next infusion.
- Scheduling the biopsy procedure was greatly complicated by my current insurance situation. At the end of November I changed from my company paying the group insurance to COBRA where I pay the premium, which I did right before Thanksgiving. Unfortunately due to the holiday, the premium was showing paid on the COBRA site but on the eligibility part of the system, it showed my coverage ended on November 30 and so therefore they wouldn’t verify benefits for a procedure being scheduled in December. Didn’t matter that they could check and that I paid the premium, without their computer system having that checkmark, nothing was going to happen. I spent hours on the phone on November 30 to no avail. Patience actually paid off. The very next day, on December 1, everything had percolated through the system and I was shown as having coverage through December 31. That’s the good news. The bad news is that my COBRA coverage is changing plans effective January 1 and I have to be enrolled and pay the COBRA premium on a new plan which then has to percolate through the system before I can verify coverage for January. Sheesh.
- While I have coverage and fully paid deductibles, I had made an appointment with my ortho surgeon to order some physical therapy for my (replaced) left knee. In the meantime, I have developed severe pain in my left heel. Consulting Drs. Google, WebMD, and MayoClinic.com, the symptoms are consistent with bursitis of the Achilles tendon, but unfortunately also with a torn Achilles tendon. The bursitis is easy. The torn tendon is not. If that’s what it is, it could require surgery and will require 12 to 16 weeks in a cast. I find out tomorrow what’s going on there.
- In the meantime, I have filed a disability claim with my former employer’s disability insurance plan (to which I had paid in more than $1,000 in premiums this year) as I retired because I am no longer able to work full time. That was almost three weeks ago and I’ve yet to get a determination. They keep asking for further information from my doctors and I can see a long, drawn-out process where they deny and I appeal. In the meantime, I have no income coming in past my final employment check. It’s very frustrating.
- That being said, I do have retirement savings and I have a meeting next week with my tax attorney to figure out which (very small) pile of money I should start tapping first. There are trade offs between tax consequences vs. growth and I’m smart enough to know that while I could probably figure it out, I’m better off asking for help from someone who does this for a living.
- Thanksgiving was good, quiet, fun. My husband and I went to our neighbors for Thanksgiving lunch. She made most of the meal. I made my world-famous chorizo cornbread stuffing and a vat of my sinful gravy. So much for my diet.
- But, because of my Saxenda prescription, I’ve been eating less and have lost about 7.5 lbs in the past month. I had started back to working out in the pool, but due to the pain issues in my heel have postponed any more workouts until I see my ortho doctor. I’ll do the physical therapy for my knee (if he prescribes it) at the same hospital facility where the pool is, so I am hopeful that will keep encouraging me to work out. Assuming I’m not in a cast.
- I am now 19 days and counting before I can quit wearing my brace which supports my recuperation from spinal fusion therapy. Being free of this encumbrance will be a terrific Christmas present.
I think that brings you up to date. Everyone has been asking me how I’m enjoying my leisure time and, frankly, I’m not sure how to answer that question because I really haven’t had any leisure time to evaluate. I have been able to take one or two afternoon naps over the last couple of weeks and just knowing that’s an option is wonderful.
I hope that whatever updates are happening in your life are blessed and reflect the wonderful holiday season we’re entering. Thanks for checking in.
Like many RA patients, there is often a gap between how I feel and what my lab results or other tests actually show. This is compounded by the fact that I am R factor negative, meaning that a standard test for diagnosing RA comes back normal (even though I’ve lost three major joints to the disease). Therefore, whenever I get physical evidence about a condition that correlates to what I feel, it feels like a victory.
I recently made the difficult decision to leave the workforce. I’m still struggling a bit on whether to describe myself as “retired” or, as I left largely to deal with my health, as “disabled”. I’m not much of one for labels of any kind so I’m ignoring the discussion at the moment. I’ll figure it out later when it becomes important to things like disability claims.
One of the things we all know is that stress is not only an issue unto itself, it generally magnifies other issues you may have. For someone with RA, it can trigger flares and increase fatigue. I wear a Fitbit HR which, among other things, tracks my heart rate which is a pretty clear indicator of stress.
In the picture to the right, the recorded resting heart rate of 101 bpm (which is extremely high by any standard) was my final Friday at work when I was scrambling with my team to get a major project out the door. This high heart rate is a direct reflection of the amount of stress that I was under leading up to my “retirement”. (You can see the upward slope leading to that final day.) Since that time my resting heart rate has dropped steadily. Yes, it’s still high. However, the dramatic decline headed back to more normal levels once I eliminated the stress of work from my life is amazing. To me, this is just visual proof that I made the right decision.
My immediate focus is to get my health back into reasonable limits. I am working on my weight, my heart rate and stress levels. All these things will positively impact not only my RA, but also my blood pressure and cholesterol and triglyceride levels. Being more physically fit will increase the overall quality of my life.
I wish there were Fitbit monitors for other aspects of my life that would automatically track the pain in joints, the number of times my fingers are swollen, or other indicators that my RA is active. Someday there very well be. Until that time, I’ll use the tools I have to help track my progress and celebrate victories like this one.
Wishing you victories both large and small in your life today. Thanks for checking in.
I happen to already be registered with Focus Pointe Global which does medical research — everything from surveys to clinical trials. They are currently looking for participants in an upcoming study on RA. I’ve included the details below. Links are provided to register and/or ask questions.
Focus Pointe Global, a National Medical Research Company, is currently looking to speak with people living with Rheumatoid Arthritis for an upcoming research opportunity. There are no sales involved and all information collected during the research process will be kept confidential and used for research purposes to help those in the healthcare field better understand the needs and challenges of living with RA.
By participating, you will be able to give direct feedback to professionals that can actually make a difference. Participants will be compensated for their time and efforts. This opportunity is available nationally.
If you are interested, please click this link, sign up, and fill out the short survey and you will be contacted within the next month: http://bit.ly/RAStudy
If you have any questions, please email: firstname.lastname@example.org