Where I am, how I got here and what’s next

Tags

, , , , , , , ,


I was diagnosed with RA in July 2008. It’s been a pretty rocky six and a half years since then. In all, I’ve had nine surgeries since my diagnosis including three joint replacements, a revision to the shoulder replacement, two rotator cuff surgeries, two knee arthroscopies, and a disc removal and spinal fusion. My home furnishings have expanded to include grab bars in the bathroom, my own rolling hospital tray table, and a continuous cold therapy system.

My New Year’s resolution this year was to stay out of the operating room and, unless you count my SI joint injection which included anesthesia, I’ve made it so far.

Needless to say, my RA has not always been well controlled during this journey. I’ve systematically worked my way through most of the biologics on the market as follows:

Drug Type Start Stop
Methotrexate 35 mg DMARD 7/12/2008 9/15/2008
Humira TNF Blocker 1/15/2009 8/12/2009
Simponi TNF Blocker 8/12/2009 12/9/2009
Enbrel TNF Blocker 12/9/2009 4/18/2011
Enbrel + 10 mg leflunomide TNF Blocker/DMARD 4/18/2011 2/1/2012
Orencia + 10 mg leflunomide T-Cell/DMARD 2/1/2012 10/16/2013
Cimzia + 20 mg leflunomide TNF Blocker/DMARD 10/16/2013 3/19/2014
Xeljanz + 20 mg leflunomide JAK Inhibitor/DMARD 3/19/2014 8/28/2014
Remicade + 20 mg leflunomide TNF Blocker/DMARD 8/28/2014 Present

I’ve only been on my most recent medication, Remicade, since August. You start with three loading doses/infusions. After my second loading dose wasn’t producing the desired results, my rheumatologist increased the dosage. Then after my first “regular” infusion, she increased it again. She said she wasn’t going to increase it a third time.

So after more than three months of feeling like I was pouring the $16,000 per infusion down the drain, I saw my rheumatologist this week. We agreed that we needed yet another change. There are only three current biologics that I haven’t been on: Actemra, Kineret, and Rituxan. She suggested Kineret. Who am I to argue? It’s one of the original biologics so its effectiveness and safety record is well established. And it’s not a TNF-blocker which five of my “failed” medications were.

I have hope.

The bad news (at least to me)? It’s a daily injection. (Yuk.) I’m not looking forward to that. In addition, there is a high incidence of injection-site reaction (ISR) and, given the daily injection, there’s not a lot of time for recovery before the next injection is due, although evidence suggests that these become less severe and/or disappear after about four weeks (that’s 28 injections).

Kineret also contains citric acid which means that the injection stings. Every day. I don’t think you ever adapt to that. And since it has to be refrigerated (and it’s a daily injection), I have to figure out how to travel with it. I used to be able to figure out my travel and medication schedule to avoid the situation, but with a daily injection, there’s not much choice. The bit of silver lining in this cloud is that it comes in a latex-free, prefilled syringe with a tiny needle. The needle is a 27 gauge for those of you who appreciate those things (and I do).

I know a lot of people need to take injections every day (insulin-dependent diabetics come to mind). Instead of being such a whiny baby, I should be grateful that I have choices in medicines and a rheumatologist that is willing to recognize when a treatment plan isn’t working and to suggest alternatives.

I am. Both. (A whiny baby and grateful.)

We still have to go through the insurance approval dance and all the paperwork. Once I get started on it, I’ll certainly update the blog with my experience.

So that’s where I am at the moment, how I came to be here, and what’s next on the agenda.

Hope that wherever you’re going, however you’re getting there, and whatever comes next in your life brings you many blessings.

Thanks for checking in.

Congrats are in order!

Tags

,


Wow. For the fourth year in a row, Healthline has included me in their Best Health-Related Blogs along with some of my other favorite bloggers. It’s actually a contest where you can vote (twice a day) on Facebook and/or Twitter. (This means I can’t vote for myself or my other faves because I neither tweet nor, uh, “Face” — or is it “book”?)

http://www.healthline.com/health/best-health-blogs-contest

Here’s a link to the site where you can check it out. You can sort the entries by alphabet or enter the name of the blog you’re looking for. In the unlikely event that I should win, the $$$ will go to one of the very deserving charities that Andrew Lumpe has identified on his “Giving Tuesday” post.

Congratulations to all the bloggers that were recognized. There are some great ones on a wide range of health-related topics. You should explore them!

Thanks for checking in.

Busy times

Tags

, , , , , ,


Wow. This post is going to be all over the map (literally) as a lot has happened since my last post.

First, I had the major honor to be invited (and attend) Creaky Joint’s Joint Decision Empowerment Summit in Boston which brought together some of my favorite bloggers, members of the Creaky Joint team, and supporters from Jansenn Biotech, Inc. (who also sponsored my travel arrangements for the trip). The bloggers included:

  • Angela Lundberg—Inflamed: Living with Rheumatoid Arthritis
  • Amanda John—All Flared Up
  • Cathy Kramer—The Life and Adventures of Catepoo
  • Leslie Vandever—RheumaBlog
  • Dina Neils—The Titanium Triathlete
  • Leslie Rott—Getting Closer to Myself
  • Mariah Leach—From This Point. Forward.
  • Eduardo Flores—Rheumatoid Arthritis Guy
  • Rachelle Crow-Hercher—Spoonless Mama
  • Brittany Johnson—The Hurt Blogger

If you aren’t familiar with these amazing people, you should check out their blogs. Their perspectives, wisdom, and insights about life with RA are certainly worth your time.

There was a lot of laughter and a lot of tears but mainly there was a determination not to let RA beat us and lots of brainstorming about what kind of education/information needs to be made available to those living with RA. (One of the most powerful statements I heard was from RA Guy who eschews labels and said, “When I’m in the doctor’s office I may be a patient, but otherwise I’m someone who lives with RA.”)

Immediately upon my return from Boston, I had my Remicade infusion. This is the first one after the three loading doses. After the first two loading doses, my rheumatologist raised the dosage from 6 mg/kg to 7 mg/kg because the lower dosage wasn’t being effective. When she stopped in during this infusion we discussed the fact that the Remicade still didn’t seem to be working even at the higher level, so she increased the dosage again to 8 mg/kg. She said she wouldn’t go to 9 mg/kg. I really can’t tell any improvement so we may be switching treatment options yet again. (Sigh.) I’m running out of options. I see her again in the middle of December and we’ll make a decision then.

I also finally got to see the pain doctor about my compressed SI joint. (Let me tell you, traveling with that condition is not the most fun I’ve ever had.) He agreed with the assessment from my orthopedic surgeon and my neurosurgeon that an injection in the joint would be a logical place to start. If the injection worked for the pain, then the culprit was, indeed, the SI joint. Otherwise, we might need to investigate other potential causes. As it turned out, there was an opening the next day for the procedure, so I went in and had it done. The procedure is done with a deep joint syringe under a fluoroscope so the doctor can see specifically where to put the medication. This is important not only to ensure the anesthetic and steroids reach the right spot, but because there are a lot of nerves that need to be avoided in that area. Good news. The injection nailed the pain. This is not a cure, but a temporary measure, so I will need to go in every so often to have the injection done again.

As good news as this is, I told a friend that it’s a lot like making a clean spot on a dirty floor. The one spot that doesn’t hurt (my SI joint) makes it especially obvious that all my other joints are swollen and in pain from RA. I’m to the point that my hands and ankles wake me up at night. No amount of Tylenol, Tramadol, or hydrocodone seem to be able to help me achieve a good night’s sleep.

So by the end of the week, I was feeling like a pin cushion. They had to stick me four times to get the IV for the infusion started. For the SI joint procedure, they put you under light anesthesia and it took two sticks for the IV plus the actual injection sites. Ouch.

On top of all this activity, I’m in the midst of two major projects that have me sitting for long, long hours in front of the computer. All the stress and inactivity isn’t helping the RA but, as a self-employed consultant, there is no such thing as “bad” work.

But it’s the holiday season and I’m looking forward to Thanksgiving next week. No great plans. Just kicking back with my husband, having lunch at a favorite restaurant, and perhaps hitting a movie afterward.

I hope your life has been busy with good things and the forthcoming holiday season brings you and yours many blessings. Thanks for checking in.

 

 

SIgh

Tags

, , ,


Now it’s the  SI (sacroiliac) joint — where the spine (sacrum) joins with the pelvis(ilium).

About six or eight weeks ago I started having lower back issues. As this coincided with

Sacroiliac Joint

Sacroiliac Joint

changes in my RA medicine and drops in my prednisone dosage, I thought I would give it some time to resolve itself. I figured I’d just pulled something doing something I shouldn’t, but I honestly couldn’t remember anything.

Finally I went in to see my ortho guy. X-rays revealed a compressed joint on the right side. While the left side joint showed a dark line on the X-ray indicating cartilage/space in the joint, the right side was a white line indicating that the two bones are rubbing against each other.

Not to worry. It only hurts when I stand, bend, sit, or lay down. Other than that, I’m fine. I’m working my way through bottles of pain killers, NSAIDS, and Voltaren gel.

In the meantime, my ortho guy is sending me on to my spine guy and indicated that an injection in the SI joint is probably in order. These are done by interventional radiologists. Hopefully I’ll get an appointment with my spine guy this week and the injection scheduled soon. Other treatment options include physical therapy so that might be in my life too.

In other news, still waiting for the Remicade to “kick in.” I’ve had my three loading doses, but so far not much, if any change.

I hope the “sighs” in your life today are from happiness. Thanks for checking in.

Time Thief

Tags

, ,


There’s been a lot of discussion about the cost of RA treatments. It’s no secret that biologic medications run in the thousands of dollars. Add in physician and therapist appointments, lab tests, and radiology costs and the dollar amount can be monumental. While costs can be staggering, from an individual standpoint, there is help in the form of insurance, public assistance, and programs offered by drug manufacturers to help offset these costs. But RA steals something more precious than money – it steals time.

Read the rest of the post here: http://rheumatoidarthritis.net/living/time-thief/

Third loading dose of Remicade

Tags

, ,


Two days ago, on Monday, I completed my third and final “loading” dose of Remicade leading into the regular schedule of an infusion every six weeks. Because I hadn’t responded to the first two doses, my rheumatologist increased the Remicade from 6 mg/kg to 7 mg/kg (an approximate 16% increase).

This morning I flared. This is not the best sign that the Remicade is or will be working well.

The infusion went well. It was a different infusion nurse and, as much as I liked the first one, I liked this one better. She got the IV started on the first stick (which NEVER happens) and I didn’t have any side effects during the infusion. As I’d had a headache previously I took some Tylenol ahead of time. The infusion did make me very tired and I wound up going home and sleeping the rest of the afternoon.

I did pretty well yesterday, but this morning I woke up at 2:30 with my ankles and wrists severely hurting. Then the “real” flare started and seemed to move from the bottom of my feet up through my knees, hips, back and shoulders. I felt like if I moved, I would cry it hurt so bad. I finally got back to sleep around 5:30 and when I woke up at around 8:00, most of the severe pain had passed although I was very, very stiff and I was still sore when I moved around.

Part of it may be the fact that my prednisone dosage has dropped from 10 mg to 5 mg a day, but it’s still not a good sign to have a flare after having such an intense dose of biologic medication less than 48 hours previously.

My next infusion is scheduled for mid-November with my next rheumatologist appointment in mid-December. However, if I continue to have issues, I’ll move that appointment up earlier. It does take time for biologics to work so I still have hope that I will start showing improvement.

I hope whatever your day holds it brings both health and happiness. Thanks for checking in.

When You Can’t But You Do Anyway

Tags

,


… While employees with sick leave benefits have some flexibility to take the day off (as long as it’s not too often), others have to make a choice of going to work or not getting paid. RA sufferers who are also caregivers – moms and dads and those taking care of aging or ill family members – are probably the most conflicted. Like the commercial says, sometimes you just can’t call in sick …

Read the full post at: http://rheumatoidarthritis.net/living/cant-anyway/

More, more, more

Tags

, , , , ,


I hate more drugs. Sometimes it seems like all I do is manage my and my husband’s respective drug therapies and it seems like I’m always swallowing a pill. But sometimes, I guess, more is better. We’ll see.

I saw my rheumatologist last week. It was the first appointment after the first two loading doses of Remicade. Per Remicade’s website, the recommended dosage for RARemicade is 3 mg/kg of body weight repeated every eight weeks after the loading doses (loading dosage is one infusion at weeks 0, 2, and 6). Because I’ve “failed” at previous treatments, my rheumatologist started me at twice the normal dose (6 mg/kg) with anticipated infusions more often (every six weeks rather than every eight).

In some ways, the rheumatologist appointment was good because I was in terrible shape. Don’t you just hate it when your RA conveniently takes the day off when it’s time to see the doctor? It’s kind of like when your car quits rattling when you see the mechanic. There’s not much to talk about. But this time when I saw the doctor, my joints were swollen, I was in pain, I was fatigued, my hip bursitis was back, and I’d put on 15 pounds thanks to the interim prednisone supplement. The first two loading doses of Remicade clearly hadn’t had much, if any, effect. While I understand and accept that it can take several weeks for biologic treatments to start working, I have to admit disappointment that with each passing day I seemed to be getting worse. (Note that I’m also on 20 mg of Arava/leflunomide in addition to the prednisone.)

To me, changes needed to be made and my rheumatologist obviously agreed because she was the one who spoke first. In the short term, she’s reduced my prednisone to 5 mg/day to help slow the weight gain, but she also did a steroid injection for my hip bursitis to help calm that down, especially since we’re cutting back on the daily dosage. That did help, almost immediately.

In the longer term, she increased the Remicade infusion to 7 mg/kg. Other than a bit of a headache during the infusion, I haven’t noticed any negative side effects (or any positive ones for that matter), so I don’t know why I get nervous about upping the dosage. I trust my doctor and the Remicade site indicates that dosing can be as high as 10 mg/kg every four weeks. I just keep thinking that with all these drugs that I take, that there is some tipping point where my body will rebel at all the chemicals I put into it.

In addition to the changes to Remicade and prednisone changes, my rheumatologist has prescribed Tramadol for pain. She prescribed it early on in our relationship but I quit taking it because I took it at night and felt “hung over” the next morning. This time it seems to be controlling the pain but without so much of the after effects. Of course, I’m consulting now rather than having to show up at a corporate office every morning, so even if there is some carry over, there isn’t as much impact to my daily life.

So more Remicade, more pain medication, less prednisone. Two steps forward, one step back. (Or is it the other way around?)

I hope your day is filled with more of whatever makes you happy. Thanks for checking in.

My new iPhone6

Tags

, , , ,


I thought I’d diverge from the usual health-related topics of this blog and just put a few comments out there about my new iPhone6 and my experience with the Sprint retail store.

I looked online for information about the phones both from Apple and what my carrier (Sprint) offered and decided to go into a Sprint store so I could talk to real person.

I wound up getting the iPhone6 rather than the iPhone6 Plus due to the sheer size of the instruments. I have small hands and handling the smaller version is going to be enough of an issue without choosing the larger one. I did get the 64MB of memory rather than the 16MB, which is probably overkill for me, but I tend to load up on books and movies when I travel.

I wound up getting the model with the silver back which has a white face rather than the one with an all-black face like I prefer — simply because that’s what the store had available. I don’t really care one way or the other it’s just going to take some getting used to.

Transitioning was easy. All my contacts and settings were basically transferred from iCloud right down to the wallpaper on my phone. I did have to re-download my Kindle books from the cloud and input the password to my mail accounts (and I’m assuming any other apps that I use) the first time I used them. I also had a bit of a time synching Bluetooth to talk to my car, but nothing really too taxing. Of course when I first tried to synch with my computer, I had to upgrade to the latest version of iTunes, but that was a minor inconvenience as well.

Overall, I like the phone. The buttons are rearranged a bit to make it more usable in the larger size, which is good. I haven’t tried out the new camera/video yet which is supposed to be one of the hottest new features. The other notable new features include faster processing and longer battery life. Any addition to the battery life will be greatly appreciated as my old 4S would run out of battery after then end of a full day (or even not-so-full).

I have to admit that while my Sprint sales rep was very personable, he really wasn’t that knowledgeable.

  • I had to tell him that Sprint offered a minimum of $200 trade in against an iPhone6 (he originally offered me $142 or so for my old model).
  • It took him a couple of tries to get the option that I wanted for purchasing (purchase the phone outright — which was basically covered by their buy-back offer), and sign-up for a two-year contract at their ridiculously low $50/month.
  • He somehow managed to add in a $5/month international calling fee, which I then had to call Sprint customer service to remove. (I didn’t see the final bill until I got home and saw the email.)
  • While in the store, I wanted to do a final back up to the iCloud. (I hadn’t anticipated actually buying a phone today), and he “connected” me to a wireless network that wasn’t really working, so I wasn’t able to do that. Fortunately, the phone was recently backed up and I don’t think anything was lost.
  • He kept trying to sell me Sprint’s insurance plan and I kept asking about AppleCare+ because I like going to the Apple stores for support. I wound up not taking the Sprint insurance and he didn’t sell me the AppleCare+ so now I have to either call Apple or go by a store within the net 60 days.

Honestly, I did more selling/explaining about the programs and phone than he did.

It will take time getting used to the larger format and I need to buy new chargers and other accessories since I moved from a 4S to a 6. The Sprint store I was in was pretty sold out of most of those items, as I imagine many stores are at this time. I was just amazed that I could walk in off the street and buy one.

I think this will work. I carry my phone in my purse which is fine. My husband, however, carries his phone in a holster on his belt and I’m not sure he’ll like the larger size.

We’ll see. Thanks for checking in.

Follow

Get every new post delivered to your Inbox.

Join 173 other followers