Have pharmacy, will travel

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It seems forever since I posted. My husband and I just back from an almost-three-week adventure and the couple of weeks prior to that were very busy with work and getting ready for the trip (more about that below).

Happy Pills store in Barcelona

Happy Pills store in Barcelona (sells candy “pills”)

One of the “joys” of having a chronic illness is making plans around your medication schedule. As we were going to be gone for such an extended time, I had to make sure that both my husband and I had enough of our prescriptions to last us (per the Hobbits) there and back again. Part of the issue was that both of us had just started new medications so it was going to be too early for a refill but we’d run out during the trip. I’d managed far enough ahead on our other medications that I got refills right before we left, so we had a full supply to see us through on those.

With prescription medications (especially specialty medications such as Xeljanz) there are limited options for addressing this. With my husband’s new medication, I could have gone to our local pharmacy and had some extra pills “loaned” to us against his next refill. I’m not sure if all pharmacies do this, but our local pharmacy will make some accommodations in special circumstances like these or if, for example, a physician refill authorization is late in coming. Since the Xeljanz comes from my specialty pharmacy, this was not an option.

As noted in earlier posts, I got both a two-week sample from the manufacturer and my doctor’s office provided a sample bottle as well, which was enough to solve my problem. For my husband, I took a cue from my Xeljanz experience and called doctor’s office. They had originally provided a small sample bottle of the new medication, so I asked if they could provide us a couple more to see us through the vacation, which they did.

I have to say that switching to Xeljanz when I did was very opportune. Otherwise I would have to figure out how to manage my pre-filled Orencia injections through multiple security screenings and keeping them cold over the course of trip. I had already decided to take one injection early before we left on the trip then just be late for the next one scheduled for two weeks later. Fortunately I didn’t have to deal with that situation.

We take 18 prescription medications on a daily basis.

We take 18 prescription medications on a daily basis.

Together, my husband and I take 18 prescription medications on a daily basis (plus a plethora of vitamins and supplements). On top of those (which got placed into the daily pill minder boxes), there was another bag full of the “occasional” medications that I needed to take along, just in case. Those included such things as prednisone, prescription pain relievers and muscle relaxers. In addition to those prescriptions, there was yet another bag full of “travel” medications that our new doctor had prescribed including Cipro, Tamiflu, and something to address stomach viruses. We had most of a bag of just prescriptions.

But about the trip … It was terrific.

From Dallas we flew to Miami Beach where we spent the night. The next day we boarded the Norwegian Epic for an 11-day trans-Atlantic cruise from Miami to Barcelona, Spain with a stop on day eight at Madeira, a Portuguese island where the wine by the same name is made.

The cruise was wonderful with great food and lots of fun things to do (especially in the evening), but I remarked to my husband that it reminded me what living in a luxury retirement home must be like. As we were on the ship day after day after day, things got pretty routine and revolved around meal times. One of the highlights was a guest lecturer who does documentaries for PBS who spoke on the history of the railroads, Grand Central Terminal (which I love), and the Packard automobiles.

Alcove in the Catedral de Barcelona

Alcove in the Catedral de Barcelona

After the cruise we stayed a couple of days in Barcelona. We had visited once before a couple of years ago when we were on our last cruise, but this time we figured out the subway system which made getting around to all the sites a whole lot easier. Barcelona is an amazing city and one of the cleanest cities I’ve ever visited. Renown for its Gaudi architecture and Picasso museum, we spent a large part of a day visiting the beautiful Catedral de Barcelona.

From Barcelona we traveled to London. We used to spend Thanksgivings in London, but haven’t been to London since 2012, so we couldn’t miss the opportunity of being on that side of the Atlantic and visiting it again. Last time it seemed like the whole city was under construction for the Summer Olympics and the Queen’s Diamond Jubilee celebration, so it was nice to visit again to see the improvements since last time. I’m pleased that many of the subway stations are becoming “step free” making the city more accessible to those of with mobility issues. We visited some favorite haunts and restaurants, took in a showing of the latest Jeeves and Wooster play which is classic British humor, and stumbled into the premier showing of Godzilla in Leicester Square just as the stars made their appearance on the red carpet. In all, a good time.

The trip was capped off (thanks to airline points) with a first-class return on British Airways which is the closest I’ll ever get to being treated like royalty. As an American it was almost embarrassing to be treated to that much service. But it was my birthday so I enjoyed every minute of the 10-hour flight back to Dallas.

I am pleased to say that I did extremely well over the trip, even with all the tramping around cobblestone streets in Barcelona and London. I was sore and my joints were starting to be a bit swollen after Barcelona so I took a low-dose of prednisone while in London (three days of 10 mg, followed by three days of 5 mg) which seemed to calm things down. I can only conclude that the Xeljanz is working because the issues I had been having on Orencia are no longer there and I barely thought about RA the entire time I was on the trip. I have a follow-up visit to my rheumatologist next week, so we’ll see what she has to say. (My one concern is that I put on 13 pounds after starting the drug, the majority of which was before the trip, so I can’t blame cruise-line food.)

So, back home again. I apologize to those bloggers that I follow who posted some wonderful posts in my absence. There were connectivity issues on the ship and while traveling so while I got to enjoy the posts via emails for the ones I subscribe to, I wasn’t able to post a comment. Now to get caught up on work and laundry and all those other parts of my life that didn’t go “on hold” just because I was gone.

It’s great to be back. I hope whatever adventures you’ve had in your life have been good. Thanks for checking in.

 

More Xeljanz Adventures


So on my way over to the rheumatologist’s office to pick up my Xeljanz samples, my specialty pharmacy called me and said that my real prescription was ready to be picked up. I was expected a two-week supply from my doctor and was pleasantly surprised to find a full 30-day bottle. (This was on Friday.) So, after picking up the prescription, I have 60 days in stock plus the two-week sample from the company that arrived yesterday (Tuesday).

Then Friday afternoon I got a letter from my insurance company saying that my authorization had been denied because I hadn’t been through the step therapy program of Humira and Enbrel before going to Xeljanz — which I had but on a different insurance. I’m reasonably intelligent and I”ve dealt with insurance and doctors so  my head was telling me that pharmacies just don’t pass out expensive drugs unless they’ve cleared the insurance hurdles. But emotionally it felt like quite a blow because it seemed like I had already spent so much time trying to sort everything out.

So Monday rolls around and I’m trying to figure out who to call first — the pharmacy, the insurance company, or my doctor. Fortunately, Monday afternoon brought a second insurance letter stating that my doctor had already provided the information and that the drug, in fact had been approved.

But wait there’s more.

Tuesday, the people from Xelsource call me. Xelsource is Xeljanz’s patient support arm. They confirmed that everything had been approved, touched base on the co-pay card, and informed me that Pharmacy X would be mailing me my prescription. I thanked them, but I told them that I had already picked up my prescription from my regular specialty pharmacy, and they said, “Fine.”

Today the people at Pharmacy X called me. They needed to clarify something and were more than a bit surprised to learn that I had already picked up the Xeljanz from another pharmacy and, as such, my insurance surely wouldn’t approve a second prescription. I told them I didn’t know how duplicate prescriptions got sent/approved, but that I have an appointment with my rheumatologist in May and that I would ask about it.

So first I couldn’t get a supply of Xeljanz for love or money and now I have people falling all over themselves making sure I have more than enough.

I’ve only been on the drug for a few days so it’s too early to know if there are any positive effects. I had some stomach issues over the weekend which was a bit troubling since that’s one of the known side effects of Xeljanz. However, I’m also taking an NSAID and prednisone and about six other medications, most of which can cause stomach upset. So even with the Protonix I take, it’s not surprising that my tummy rebels a bit.

So that’s where we are. I have enough Xeljanz to see me through the trip and hopefully everything is established so there won’t be issues going forward getting the prescription filled.

I hope whatever adventures you have going on are wonderful. Thanks for checking in.

Xeljanz Update

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Some progress. (Fingers crossed.)

I spoke with my rheumatologist’s office last week and they had submitted all the paperwork to Xeljsource which is the patient support arm and (I believe) the direct pharmacy for Xeljanz distribution. So I called Xeljanz.  After I had gotten through the maze of the “push this button” maze, and spoke to a human, they were quite pleasant and helpful. Yes, they have the paperwork (finally). Yes, it’s in process. No, there’s no way to estimate how long the insurance approval will take. Yes, I’ve been approved for a (free) two-week sample of the drug which they will try to expedite.

There is a timing issue here. I will be out of town at the end of the month and if I don’t get the prescription filled soon, then it will expire while I’m traveling. Hopefully the two-week sample is in addition to the full month, which should be more than enough to see me through my travels.

Today my rheumatologist’s office called me. They have received some samples of the drug. I can go by their office and pick them up, so by tomorrow I should have my first dose of Xeljanz. About 10 minutes after the call from the rheumatologist, Xeljsource called me back to confirm that my two-week sample will be delivered on Tuesday. So between them and my doctor, I should have about a full month’s supply to get me started. (For free!)

Even though it’s a pill form, it’s every bit as expensive as the other biologics that weigh in (depending on your pharmacy and prescription) between $2000 and $3000 per month, so getting a free month is, indeed, a blessing.

In the meantime, I’m “gimping” along with my 20 mg of leflunomide, the 7.5 mg of meloxicam (NSAID), and temporarily, some prednisone. Hopefully the Xeljanz will kick in quickly with few side effects.

So that’s the update on the drug situation. Hope you’re doing well. Thanks for checking in.

 

What do you do when you can’t?

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From One Big Happy comic strip, March 25, 2014.

From One Big Happy comic strip, March 25, 2014.

We’ve all been there. The day you have something important — or even not-so-important — to do is the day you flare. Or the day you’re especially suffering from fatigue. Or the day the side effects of the meds really start kicking in. Or just the day you feel so overwhelmed with dealing with the disease that it’s hard to deal with anything else.

Sometimes we just get up and go anyway, with varying results depending on how well we can actually function. Other times we (once again) beg off with some excuse or other, then wind up feeling guilty on top of feeling bad.

But that’s mainly the physical effects of RA. What about the mental outlook?

I’ve been paid a major compliment. I’ve been asked to submit a guest blog. No details here to spoil the surprise, but I was very pleased. I mainly do this blog for myself but as a wonderful consequence I’ve made some great friends and occasionally something about which I’ve written has resonated with other people dealing with similar situations. The fact that someone else wants me to contribute toward their efforts on education about this disease is, indeed, flattering.

The topics they are suggesting are all positive. I get it. With all the negative, scary information out there, it is truly helpful to know that real people have overcome challenges and have victories (however large or small) over the disease. I was especially taken by Pollyanna Penguin’s “Life in the Day” post where she contrasted her life today with when she was first diagnosed. Her life is certainly not perfect, but through treatment and her own determination (and wicked sense of humor), she’s doing better.

My problem is that mentally, right now, I’m not in a good place to do something positive. As posted earlier, the Cimzia hasn’t been working. The Arava and Mobic are “supplemental” so they’re not supposed to carry the main load of combatting the disease, so for some time now I’ve been without mainline treatment and it’s catching up to me. It’s scary because I can sit here and tell myself that this is what my future is like — constant pain, chronic fatigue.

My doctor has switched me to Xeljanz but, due to a mix-up getting my recent cholesterol labs to my doctor, I haven’t yet started on the drug. Now that I’ve (hopefully) gotten the lab situation straightened out, we still have to go through the insurance approval process and then it will take a minimum of weeks and possibly months before the Xeljanz provides any improvement. In the meantime, I’m like the boy in the cartoon — it’s really hard to get excited about getting out of bed in the morning.

I intend to do the guest blog. In my case, it’s a mind-over-matter situation. (If you don’t mind, it doesn’t matter.) And I do have plenty of positive things to provide the fodder for the piece, I just need to remind myself of them.

Until then, I hope whatever gets you out of bed in the morning is a good thing.

Thanks for checking in.

 

 

 

 

 

 

 

The X-Factor

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Those of you who are young enough to remember high school algebra know that “X” stands for “unknown”. And that’s kind of where I am right now — in unknown territory (not high school algebra class … except in those dreams where I haven’t studied for the test).

But first I want to say a sincere, “thank you” to all the support and encouragement I received from my earlier “Discouraged” post. That really meant a lot.

As reported earlier, I didn’t feel that Cimzia was working and had moved up my appointment with my rheumatologist. That appointment was yesterday.

Honestly, yesterday I felt so bad it was hard to get out of bed to go to the appointment, but at the same time, it’s good to go to the doctor when you’re actually exhibiting symptoms. She examined my poor swollen joints and asked when my last Cimzia injection was — which was only four days previously. (Cimzia is scheduled every two weeks, so it should have been in full force.) So she agreed that it wasn’t working. That was the easy part.

Finding the alternative was the hard part. We discussed Rituxan (rituximab) which has been shown to be helpful to patients (like me) who either didn’t respond or quit responding to TNF inhibitors. (My list includes Humira, Simponi, Enbrel, and Cimzia not to mention Orencia which is T-cell inhibitor.) I have some hesitation about Rituxan (along with everything else I haven’t tried) and major reservations about any infusion therapy because of my lousy veins. I really appreciate the time that Andrew gave me to discuss his personal experience with the drug. I didn’t say “no” but my rheumatologist is perceptive enough to understand when I hesitate. So the discussion turned to Xeljanz.

Thus the second “X Factor” for Xeljanz.5_mg_bottle_r_lr

Like any powerful drug there are benefits and downsides to it which I discussed in excruciating detail with my rheumatologist. Interestingly, she participated in the early clinical trials of the drug so she had pretty in-depth knowledge about the drug. Right now she has about a dozen other patients on Xeljanz. All of them had issues with TNF inhibitors and she indicating all of them are doing well on the new drug.

So that’s where we are. Xeljanz can raise cholesterol so you must have that checked before you can start on the drug. Fortunately I had labs done recently showing good numbers there. We’re in the midst of sorting out the insurance approval and getting the prescription set up.

In the meantime, I’m on prednisone to help calm things down (10 mg for two weeks followed by 5 mg for two more weeks) and I can already tell it’s helping, after only two doses. (I wish it didn’t have such horrible side effects, I’d just stay on it …) I’m also on Protonix while on the prednisone to help protect my stomach, although I was supposed to have been on it for quite some time since I also take Mobic/meloxicam. In addition, I am continuing to take 20 mg of Arava every day.

I can’t say I’m completely happy (and won’t until I see what miracles Xeljanz might deliver), but I’ve at least come out of my discouraged funk. (This may just be a side effect of the prednisone which can make me slightly manic.) I now have a plan of attack which is more than I had. Any plan is better than no plan.

Again, thank you to everyone for their support and encouragement. I’ll keep you posted as things go forward.

I hope whatever factor comes into your life today makes you X-tatic. Thanks for checking in.

Snap, crackle, pop!

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I can’t remember a time when my joints didn’t pop. Even as a kid I’d sit watching TV and flop my hand back and forth just to hear the snapping sounds, like a kid popping chewing gum. Must have been terribly irritating. Pluggers snap crackle pop cartoon

As an adult, I was at an appointment with my orthopedic surgeon and when I slid off the exam table, both my ankles popped loudly. I didn’t pay any attention but it startled my doctor who immediately started examining them and asking if they hurt. I explained that was the norm, not the exception for my ankles.

The list goes on and on, from the TMJ issues that make every meal a rhythm section down to my ankles. I can make my fingers sound like castanets. I used to pop my knees and hips out of joints just to get a good stretch. The only joints that I think are immune are my elbows.

But the interesting thing is, when my joints are swollen, my joints don’t pop. (Which makes sense when you think about it.) Even when the swelling is slight enough not to be very visually noticeable, I can tell something is going on because my usually vocal joints go quiet.

I doubt this makes any scientific journals or gets used as an RA measure like DAS28. However, it’s important to understand our bodies and the ways it tells us what’s going on. As an example, a mother of child who had badly injured his hand noticed that the affected fingers didn’t wrinkle in water. As the child healed, the wrinkling effect returned to his hand. Water-wrinkled skin is now often used as an indicator of nerve activity in various parts of the body.

So when I get up in the morning and things go snap, crackle, and/or pop, it’s not a bad thing.

Here’s hoping that whatever pops up in your life today is a good thing. Thanks for checking in.

 

Discouraged

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I’m a pretty even-keel kind of girl. I seldom get very angry or very down. On the other side, I also seldom get giddy happy over much. I enjoy life, I’m just generally calm about it.

So when I say I’m discouraged, that’s like a -8 on a scale of -10. I’m not at the crawl-under-the-covers-and-hide-and-cry part yet, but I’ve quit seeing the light at the end of the tunnel.

My Cimzia doesn’t seem to be working.

I reported medical discussions in an earlier post about what’s next for people who don’t respond to TNF blockers. One of the interesting things about the linked article is that people can actually build up antibodies to a drug just like they can to an infection. This basically creates a resistance to the drug.

I think that’s what’s happened. I started Cimzia in mid-October and it seemed to take a while to take effect. By January, I felt like it had started helping but it wasn’t lasting the full two weeks. In addition to the 20 mg of Arava I take, we added back in 7.5 mg of Mobic twice a day.

Now I can’t tell it’s working at all. It’s like I’m going backward. When I wake up in the mornings my hands are so sore and swollen that I can’t make a fist. My feet are painful to walk on. I’ve had at least two major flares in the last few weeks.

I’m not due to see my rheumatologist for another month, but I will probably move up the appointment. Usually I go in with some thoughts on what direction we should take, but I am at a loss at this point. I’ve been on MTX, Humira, Simponi, Enbrel, Orencia, and now Cimzia. I am not a good candidate for infusion therapy. I almost think I’d rather have the RA than go through the sheer torture of trying to start an IV in my poor veins. (I had some labs pulled the other day and after trying the most likely places, they finally found a vein in the back of my hand that worked — until it blew out.)

So I feel like I’m at a standstill. What I’m doing isn’t working but I don’t have the will to move forward and try something new. If there is good news, it’s that I trust my rheumatologist and I know I can talk to her about the situation. That step I can take.

I hope whatever you’re doing is working well. Thanks for checking in.

 

If not a cure, perhaps a new direction in treatment

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This past week a new study was published that may turn conventional thinking about RA on its ear. Right now, it’s assumed that RA is caused when the body attacks its own healthy cells. This new research has found that there is actually a “target” attached to the cells that are attacked. I’ve put a link to the article at the bottom if you want to read the entire thing.

Researchers at Osaka University have found that people who are susceptible to RA contracted the disease when certain “misfolded proteins” attach to healthy cells rather than being processed into peptides. In healthy people, the proteins are processed normally.

This misfolded protein makes the cell look like an abnormal cell that needs to be destroyed, so the body attacks it. They looked at the disease down to a molecular level and found that molecules that are supposed to bind to part of the abnormal cell targets in order to have lymphocytes recognize the targets for attacks, actually bound to the abnormal proteins. Because of this target attached to an otherwise healthy cell, the lymphocytes attacked the molecules.

New RA Treatment

In the diagram above, on the left side shows the current thinking where the lymphocyte itself goes abnormal and attacks the healthy cell. The new thinking is the lymphocyte is normal, but it sees a “target” caused by abnormal protein attached to an otherwise healthy cell.

The goal is to develop a drug that is targeted at denatured proteins to
dissolve them, or a method of examination that will allow doctors to make a
diagnosis of the disease at an extremely early stage.

There are some usual “reporter” issues with the article in that they describe RA as resulting in the “slow deterioration of the joints of the hands and feet of patients,” but I put this down as a reporter research problem, not an issue with the study.

All I can say is that I love it when studies such as these open up new avenues of hope for a cure or better detection and treatment options.

I hope whatever treatment option you have is working well. Below is the link to the article.

http://ajw.asahi.com/article/behind_news/social_affairs/AJ201402260014

 

 

 

What’s next?

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I ran across a very interesting article about the “next” treatment options for RA patients who either fail to respond to TNF-inhibitor biologics (primary non-responsiveness) or the drug loses its effectiveness (secondary inefficacy where the body may develop antibodies to the drug). These are some of the most popular biologics on the market and include Remicade, Humira, Cimzia, Simponi, and Enbrel (which also includes a circulating receptor fusion protein — whatever that is). I personally have been through all of those except Remicade and also Orencia which is not a TNF receptor but rather affects the action of T-cells.

I’ve provided the link to the entire article below (which is a blogger’s trick to get you to read the entire blog post first), but here are some things that struck me about it:

  1. About one-third of patients will make a change from a TNF inhibitor drug within a year.
  2. If the reason for changing the TNF drug is because it isn’t working well for the patient (as opposed to toxicity or side effects), many clinicians would consider trying another anti-TNF agent. However, there is evidence (four to five studies) now show equal or better results for changing to a drug other than another anti-TNF agent.
  3. A study published in the Annals of the Rheumatic Diseases showed that rituximab (Rituxan) was significantly more effective than an alternative TNF inhibitor after a first failure.
  4. A different study published in the same journal showed similar results for abatacept (Orencia) at six months, but was not as effective as rituximab at 12 months.

Many of us have been through a gamut of treatment plans searching for something that works. There is always the early part when you’re wondering if the drug will “kick-in”. Sometimes it does but then (according to my experience) it will stop working as well or seemingly stop altogether. So having some hard evidence on what does and doesn’t work in these cases and what the criteria might be for selecting “what’s next” is encouraging. Note that Actemra and Kineret were also mentioned in the article, but without any specific results.

But what struck me the most is something that it seems we don’t hear that often — an interest in patient preferences. Specifically, the article pointed out that patient discussions need to include their preference for an infusion vs. injection and for monotherapy or multiple drugs.

Additionally, one of the physicians interviewed commented, “It’s also important to keep in mind the patient’s perspective. Their numbers might look good, and their joint exam might look good, but if they’re still having a great deal of fatigue and musculoskeletal pain secondary to their RA, that’s also an important integral part of the whole treatment.”

Wow. All of that great information AND caring what the patient prefers and how they feel instead of just how their numbers look. It doesn’t get much better than that.

The bad news? Well for people like me who have been on multiple biologics, the article says, “”But what gets extremely frustrating is patients who have already been on multiple biologics, TNFs, one or two non-TNFs. They have a very small chance of having a major clinical benefit with a further agent.”

We’ll see. There are new drugs and treatment ideas coming along and I haven’t been through the entire list of current drugs (yet!).

I hope whatever treatment plan you’re on is doing wonders. Here’s the link to the article. Thanks for checking in.  http://www.medpagetoday.com/Rheumatology/Arthritis/44257

A great new book by an (almost) home boy

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I believe one of the greatest tools of fighting a chronic illness is the accessibility to the experiences of other people with the same condition. I know that I have been encouraged and enlightened by the many friends I’ve made in the blogging community. Beyond that, experiences recounted in books like Your Life with Rheumatoid Arthritis by the brilliant Lene Andersen, add a scope and depth to the mosaic of information on RA that is invaluable to other RA patients.

I’ve just come across another promising book, So Young – A Life Lived With Rheumatoid Arthritis, by Daniel Malito. Daniel contracted JRA at 9 years of age. Now 37, Daniel recounts his struggles and triumphs of living with the disease for more than a quarter of a century. Among other accomplishments, Daniel is a contributor to Creaky Joints, one of the outstanding arthritis organizations.

As it turns out, Daniel is from Garden City, New York on Long Island. I was born in Garden City, Kansas – a small city that’s in southwest Kansas, about one-half inch from the Colorado state line on most any map. My Garden City became (in)famous because of its proximity to Holcomb, Kansas, the home of the murdered Clutter family that was chronicled in Truman Capote’s book, In Cold Blood and further tied to that incident through the brilliant portrayal of the book’s author by the late Phillip Seymour Hoffman in the movie Capote. Other than my brother, I’ve never actually run across anyone else from any Garden City so it was quite serendipitous to find such an amazing book about JRA and someone (almost) from my home town.

I encourage you to take a look at the book and to give Daniel a shout out as well. (Link to his website: http://www.danielpmalito.com/.)

Thanks for checking in.

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