Psoriatic Arthritis, Menstruation, and Remicade

My periods are funky. I'm just to go ahead and say it "outloud", after months of avoiding the topic for fear of grossing y'all out (yes, I'm talking about you, dear squeamish reader - you know who you are!)

But it can't be avoided now. The story of my "little visitor" has become too compelling, personally and scientifically, to make light of. So here goes:

For about three and a half years (from just before the time I developed psoriatic arthritis), I've had very heavy, and LONG, menstrual bleeding. My visitor was a terrible guest. Stayed too long (two weeks or more) and didn't clean up after herself.

Then came Remicade. I started Remicade (Infliximab) about 6 weeks ago, and missed my period a week later. Please note: I never miss a period (except when pregnant). Of course I ran off to RiteAid for a pregnancy test, which came back negative. So I waited.

About 4 weeks after my first Remicade treatment, I had a visit, finally, and she was an easier houseguest than I've had in years. Not heavy, not long, just...normal. She practically did the dishes for me.

Now, here's the kicker. The bleeding started again, 4 days ago, right when the second Remicade dose wore off and I started feeling the arthritic aches and fatigue again. This was just two weeks after my last, very late, period. Is it coincidence that Remicade delayed and then "normalized" my period, and the absence of Remicade made me bleed? I think not.

So, as always, I'm turning to the research journals. First, I must give credit to the KickAS website and support group, which had a bunch of useful information in this thread.

It turns out that TNF-alpha has been linked to endometriosis, and is probably involved in the development of ovarian follicles. A fascinating 2004 review article by Sakumoto and Okuda (Journal of Reproduction and Development) states (italic mine):

3. Although the physiological significance of TNF-alpha regulating CL (corpus luteum) function during gestation is still obscure, TNF-alpha may play physiological roles in regulating CL function in the gestation period as well as in the estrous cycle.

Good golly I wish I was a research scientist and understood all of this better. But what I'm getting is: the corpus luteum is a little blister-like object that is formed when the ovary pops out an egg halfway through the menstrual cycle (here's a good diagram about the cycle). It produces hormones that support a potential pregnancy, and it decays towards the end of the cycle if the egg isn't fertilized. What these researchers believe is that the CL formation, and perhaps the entire estrous cycle, are partially regulated by TNF-alpha.

And of course, as we all know, TNF-Alpha is what the Remicade blocks. It's a lead factor in inflammatory arthritis, as well as other autoimmune diseases.

So by my reckoning, for the last three years my little visitor has arrived at the end of my menstrual cycle... she arrives early and dances in the front yard lightly for about a week, but then moves in and trashes the house at about the time I would normally be expecting guests. But possibly, the Remicade has shortened her stay.

(Translated, I think I bleed lightly for the last week of my cycle, when the CL is disintegrating, and then I bleed heavily when my period should start. But with remicade, somehow the TNF-alpha blocking is shortening dear Aunt Flo's visit).

I don't know what to think here, except to feel grateful for a better understanding of why I've had these nasty periods for so long. I don't really know why TNF-alpha affects me in so many ways, but at least I can blame it for my heavy bleeding. And I now have a new topic for reading and speculation about autoimmune illness. Just think...some researchers now think some endometriosis is caused by flaws in the immune system!

I'm also quite curious as to what Remicade has in store for me and my bad house guest - maybe I can close up the B&B for a while.

N=1 - Remicade hangover

Permission to speak freely?

I feel like $h!t. Excuse my French.

A week and a half ago I was running... chasing my wonderful 6-year-old son through the Redwoods in our favorite park. My daughter and I were having dance parties. Working in my garden was easy and irresistible.

And as of 48 hours ago, I can't move. I'm not scurrying. I'm back to creeping down the stairs. Every joint hurts, my hands are back to feeling like flippers, and worst of all, I have new finger joints involved.

I'm back to square 1. Maybe even square 0.

I'm assuming this is the Remicade wearing off. It sure feels like a hangover.

When you have a chronic illness, there is an interesting psychological tendency to believe you do not have that illness during symptom free periods. I frequently get trapped in that delusion. "Maybe I'm really better this time" I've recently been thinking, as I run and play and plant. "Maybe I don't need all these medications... maybe I just need love and seedlings".

My next Remicade infusion, which is Thursday, will be the true test. I hope it makes me feel better. But if it does, it will once again prove that I, indeed, have a chronic illness. I wish I didn't need these constant reminders. But needing to be reminded means I am feeling better. It's a terrible vicious circle...

Bring on the mousie.

Out of the office, but still reading the research links

On my way to another lovely visit with friends - I'm in the Bay Area visiting the pals and family we left when we moved to Portland last year.

Thus, once again, I'm ignoring you, my adored blog.

But I saw this article today and it caught my eye, and I thought I should share it - a new PsA drug that's doing well in clinical trials. Here's a description about why it's different:

Apremilast is a novel, orally available small molecule compound that exhibits anti-inflammatory activities through the suppression of multiple pro-inflammatory mediators including, TNF-alpha, interleukins 6, 17 & 23, and interferon-gamma among others.

Off to more good times - but I'll be back in Portland and posting regularly soon.

Health Care in America, Part II

LILI SACKS, a primary care doctor in Seattle, says she began thinking differently about her work on the day she realized she was beginning each appointment with the words, “Sorry I’m late.”

The above is a quote from a recent article in the New York Times on health care... it is a perfect follow up to the New Yorker article I talked about a few weeks ago. Here's what follows that quote:

Scheduled to see as many as 25 patients a day at a large clinic, she lacked the time for thorough examinations and discussions. Because of this, she said, primary care doctors are often forced to order tests and send patients to specialists.

“Could I have helped some people without specialists and tests? Absolutely,” said Dr. Sacks. “Would it have saved the patient and the insurance company both money? Absolutely. Is the system set up for the best care and cost efficiency? Absolutely not.”

Dr. Sacks said she worried that seeing so many patients would lead to errors.

Much of this article talks about the "direct practice" model of medicine, which for many physicians translates to: each patient pays them a monthly fee, but then gets to see the doc for no cost, including many tests, pretty much as soon as and as often as needed. Dr. Sacks, in this article, switches her practice to a direct-practice model, and speaks very highly of it in the article.

Last year, she moved to a clinic that focuses on longer patient appointments, 30 to 60 minutes. This translates to 10 to 12 patients a day. Patients also communicate directly with her by phone or e-mail.

During those longer appointments, Dr. Sacks can perform basic lab tests and simple procedures, so patients see fewer specialists.

I've been skeptical of this kind of service - worried about an even further separation between the wealthy and the poor in the type of health care they receive. But here's an argument from this article that I think makes a great deal of sense (italics mine):

Dr. Sacks said the financial mechanics of the direct-practice model match her medical goals. When she was compensated based on insurance, she was paid every time she saw a patient. Now, if she can use education and prevention to reduce office visits, she and her patients benefit, she said.

One thing (among many) required to make this model work would be a welcoming atmosphere... a "we want to see you" kind of attitude... at the doctor's office. Preventative care requires a doctor be able to see patients before diseases strike or progress too far. However, I can imagine if I was paying $100 a month for health care out of pocket, on top of insurance, I'd want to feel free to walk into my doc's office anytime I darn well felt like it.

Is anyone using this model? Do you like it?

I'm all about reducing the cost of health care. Imagine if it came with better care too!

Chinese herb may treat psoriasis?

Sorry for the blog silence lately - those of you with kids may understand the end of the school year mania I'm currently living.

But, I did want to throw this out there - an interesting article stating that an herb from the root of the hydrangea plant, which has been used for 2000 years in Chinese medicine, may help treat psoriasis, and RA, and Crohn's, etc.

Here's the link

I may have to go back to my acupuncturist and learn more.

Health Care in America

This week's New Yorker Magazine has a great article on the rising costs of health care in the United States... it's a long read, but a good one. Physician and writer Atul Gawande rips open the dirty secret of (some) doctors over-prescribing procedures in order to make a profit. It is a fascinating read about how the bottom-line can alter the quantity, but not quality, of medical procedures you may be prescribed. Here's a great quote (from a conversation with some doctors in McAllen, Texas, the most expensive place to get health-care in the country):

I gave the doctors around the table a scenario. A forty-year-old woman comes in with chest pain after a fight with her husband. An EKG is normal. The chest pain goes away. She has no family history of heart disease. What did McAllen doctors do fifteen years ago?

Send her home, they said. Maybe get a stress test to confirm that there’s no issue, but even that might be overkill.

And today? Today, the cardiologist said, she would get a stress test, an echocardiogram, a mobile Holter monitor, and maybe even a cardiac catheterization.

“Oh, she’s definitely getting a cath,” the internist said, laughing grimly.

Here's another great snippet - about preventative care in high-cost areas:

To make matters worse, [researchers] found that patients in high-cost areas were actually less likely to receive low-cost preventive services, such as flu and pneumonia vaccines, faced longer waits at doctor and emergency-room visits, and were less likely to have a primary-care physician. They got more of the stuff that cost more, but not more of what they needed.

The article doesn't turn all docs into bad-guys, no worries. But it certainly points the finger at doctors who are watching their personal bank accounts more than their patients' and the country's. It's really worth a read.

N=1 - What I learned in Germany

European travel - well, any travel - can bring the most amazing surprises. Around a corner, you find a quiet courtyard with a fountain that sparkles in the sun. One of your favorite paintings is larger, or smaller, than you expected it to be. Or, sometimes, if you can stop long enough to think about it, you even learn things about yourself...

I'll resist the urge to write a travelogue here; but it was a great trip. I learned a great deal about German history, and how it affects German culture. And, surprisingly I learned a great deal about my kitchen back in Portland, and about my right knee.

As regular readers of my blog know, my primary worry about my trip involved the 4 flights of stairs to my brother's apartment (and my bed) in Dresden. I'd had a lot of pain in my knee before I left; the psoriatic arthritis seemed to have settled into it.

But unexpectedly, my knee felt fine in Germany. The plane trip made me stiff for a few hours, and my hips really ached after a day walking in Berlin. But my knee was no trouble. Sure, I had a prick of pain here and there, but nothing like at home. In Germany I never once pulled out my little travel heat pack, or asked my sister-in-law for ice.

But... within 12 hours of being home in Oregon, my knee started aching again. By 24 hours, the fire was back. Why was I well in Germany, with all the stairs and walking (not to mention the coffee, chocolate and other auto-immune diet no-nos I was consuming)? Why was I hurting back at home?

Scientist that I am, I started analyzing my behavior in my own house, compared to Germany. At home, I'm mom (and wife), and having come home to a sick husband, I was spending a great deal of time in the kitchen... going from stove to sink to counter to fridge to dishwasher... over and over. The first day back I must have spent 5 hours in the kitchen, cleaning, cooking, making lunches, etc.

What I discovered surprised me. It seems that every time I make a turn in my kitchen, I push off with my right knee, and make a counter-clockwise turn. Before I left for Germany, I was cooking, prepping lunches, packing for myself, turning, turning. Coming home, it was the same. But in Germany, I was only walking straight - no twisting. My German family spoiled me and I didn't do a lot of cooking, and I stood still in their tiny kitchen while I did dishes. I walked for miles, but didn't do a lot of pivot turns.

I had no idea my own kitchen was my own worst enemy. I would never have known, if I hadn't gotten away from it, and come back with a healed knee and a new perspective.

So, here's the moral. If something hurts, don't assume that it is just because your disease is taking over. Take a day, and analyze every move you make, like those students in the movie Fame do in their first year of acting class (just watch the movie - you'll know what I'm talking about).

You may learn something. I'm moving slower now, and turning clockwise instead of counter-clockwise whenever I think about it. My knee is better already.

Tscheuss!

Aloe Vera treats Plaque Psoriasis

This just in - a study in Thailand demonstrated that topical aloe vera was possibly a better treatment for plaque psoriasis than topical steroids. Here's the link, and here's a quote from the investigators:

"Although contrary results were reported from two previous placebo-controlled studies, our study showed that aloe very cream was more effective than 0.1% triamcinolone acetonide cream after eight weeks of treatment".

Now, keep in mind that these results did not reach statistical significance. However, the aloe did beat out the steroid in only 8 weeks.

I wonder if my psoriatic arthritis would go away if I started drinking the stuff. Here's a link to a post claiming it would. (this is not a study, though, just an opinion).

I have been feeling like a big chemical cess-pit lately, so this study certainly caught my attention. I like when research proves that natural remedies work - it makes my scientific preferences feel at peace with my hippie soul.

N=1 - Hello again

I'm back!

Back from Germany, where I discovered the pleasure of a new coffee drink, the challenges of Berlin and the sticky hugs of my niece.

Back from my grandmother's memorial service, which was warm and heartwrenching and the fastest trip I've ever taken (Portland-> Walnut Creek-> Portland in 12 hours).

Back from a week of worry - my husband has been slammed with his worst Crohn's flare yet. I had to shorten my Germany trip, and come home to a skinny, tired guy facing a lot of scary medical choices. The kisses I got from him and my kids made the abridged trip worth it, though.

And, back from my second Remicade treatment. WOW. Try being jet-lagged, in mourning, and then infused with that sleepytime drug. I think I slept for half of last week.

But I've missed the blog, I've missed the chats, and I've missed putting the random thoughts in my head on the screen .

I hope you're all still out there.

I'm back.

Of bathtubs and berlin

I will upload pictures soon, but wanted to share that I had a fun tub experience in Berlin. My friends who are renting an apartment in Berlin moved into their sight unseen place and discovered a shower stall that is about 3 1/2 feet deep, with no entry. They have a tree-stump next to it that you can use to climb up and hurtle yourself into the shower "pit".

I was very intimidated by this tub! How was I going to get over my own personal Berlin wall?

Well, I managed. Some stump climbing, some sliding, some swinging of legs and I was up and over. Back out was easier than I thought it would be too.

But it made me think - before you assume that you will have easily accessible bathing facilities in Europe, call ahead. I would guess that while this tub is unusual, it is not one of a kind.

Back in Dresden - the 4 flights of steps are looking easier than the tub!

Ouch! Those fancy sidewalks hurt!

Germany, at least Dresden and Berlin, has an obsession with making their sidewalks interesting to the eye and to the feet. In the last few days, I've walked on cobblestone, brick, flat slabs, small rocks embedded in concrete, and on and on.

I've learned something.

American sidewalks have made me lazy - I don't pick up my feet very much... I shuffle, I think. The reason I know this now is because the first few days in Dresden I tripped constantly, twisting my ankle, jamming my knee.

Ouch.

High stepping time. I've gotten much better at lifting my feet higher when I walk. And looking down. And boy those German sidewalks are pretty.

Morning blues - jetlag and psoriatic arthritis

A quick note about time, and aches and pains...

For the last few days, I've found that while my brain is up and ready to go at 9am Germany time, (midnight back home) my body isn't. It's the strangest thing. My sister-in-law and I will be up, dressed, and eager for our next shopping or sightseeing adventure, and suddenly I'll feel like I'm walking through quicksand. It's as if my body is asleep while my brain is awake. All my bad joints hurt, I'm terrifically fatigued, and I need breaks more often than I'd like to admit.

By about 2PM, I'm just fine and ready to go anywhere, and feel like I could walk for hours. (I can't, but I like to pretend).

I do wonder if my body just isn't adjusting to the jetlag as well as my brain is! I've traveled overseas several times before (including a year and a half ago, before my disease really kicked in, but I was already old - 40-something) and didn't have this odd problem.

I hope it wears off soon. I'm off to Berlin tomorrow and want to do lots of walking. Fortunately, my morning will be spent on the train.

Evening in Dresden

Did I mention that my brother lives at the top of 4 flights of stairs? We just walked to a lovely dinner, and then walked back (about 6 blocks), and then had to tackle the stairs. Oy gevault.

Fortunately, I'm not in too much pain, because I did time my anti-inflammatory correctly. I have to take it every 12 hours, and I usually take it with breakfast and dinner. But, Germany is 9 hours ahead of Oregon. So, I could either take extra diclofenac - basically, take my usual Oregon evening dose, and then my morning Germany dose - but those would only be 3 hours apart. I opted for less, rather than more. At about 6:00 AM in Germany, which was 9pm in Oregon, I took my usual evening pill, and counted it as both Friday night and Saturday morning.

This may just be too complicated to follow, but the lesson here is... don't just take for granted that it will be easy to think about medication and time changes. If I miss an anti-inflammatory, I hurt terribly, and I really don't want to be hurting with those stairs and my toddler niece. Think about your medication when you travel, and do the math. I brought one of those little pill cases with a compartment for each pill, and I'm glad I did... I can easily tell if I miss a dose, which is important when you have jetlag!

Tchuss! More tomorrow!

in the airport in frankfurt

Ok, this will be a badlly typed entry because in germany the kezboard is different!

Just a few thoughts on international travel with psoriatic arthritis. seatguru.com, seatguru.com, seatguru.com, and sometimes even this doesn´t help!

my seat reservation got changed, and I was stuck in an aisle, with the tv box under the seat. aisles arenät ssupposed to be bad, right? but my bad knee couldnät stretch out! so, i recommend that when one tries to fly long distances, think hard about your needs. my right knee needs to stretch. fortunately, i was able to switch (thanks to a man who panicked and needed to get off the plane - we had to go back to the gate while he freaked out) I got a window on the right. my leg could stretch againszt the wall of the plane.

more later! off to buy haribo - autoimmune diet is out th e window

Have psoriatic arthritis, will travel

My Remicade live-blog was so successful, I think I'm going to make a career out of internet stunts. What will I do next? Post videos of my cortisone shots? Make a huge public sculpture out of pill bottles and ice packs in Washington D.C. and write about my subsequent dinner with the Obamas? Crash the International Conference on Psoriasis and Psoriatic Arthritis in Stockholm with my laptop?

Well, actually, that last one is close. In all seriousness, I'm leaving for Germany tomorrow. I don't know what's going on with my knee, but the pain has been fierce, and I'm a little stressed about travelling with it feeling like this. BUT, I'm not going to let it ruin my trip. I have sights to see and a 17 month old niece to play with. I'm not gonna let the disease stop me.

Starting tomorrow I'll be blogging about traveling with active psoriatic arthritis (whenever I can find an internet connection and a free moment). I'll catch you all up on what's going smoothly, what's unexpected, and what's a pain. Things like: how to keep my joints from freaking out on that 12 hour plane trip, how to keep track of my pills on a different time zone, how to make the most out of a city when I can't walk too far, and how to ask "is that gluten-free" in Deutch!

Join me, and enjoy!

Auf Wiedersehen

Rip Van Winkle - what I missed while I was sleeping

I'm waking up from my Remicade daze and greeting the world again, and I'm realizing how much I've missed in the last few days. I don't have time to pontificate on all of these bits and bobs, but I wanted to share some news and some links, in case any of you find them as fascinating as I do. Here they are:

• A study at Stanford just found that narcolepsy is an autoimmune disease. Check it out
• Another study just got us one step closer to proving that Epstein-Barr virus can cause multiple sclerosis, another autoimmune disease. Check it out. (I have written about EBV in the past, here)
• And finally - here's a study that shows that in the average age of breast development has fallen by one year in the last 15 years. So in the early 1990s, European girls were getting their breasts a year later than they are now. Researchers think this is due to environmental triggers. Check it out.

Why are these three articles interesting? To sum up: more and more diseases are now thought to be autoimmune (like psoriatic arthritis), we can now prove that environmental triggers (like EBV) might cause autoimmune diseases, and we can now start guessing that environmental toxins are increasingly affecting our bodies, and our children's bodies.

Ok, have fun with that bedtime reading.

I'm gonna go have a glass of organic milk.

The morning after

I have a Remicade hangover. I slept terribly - woke up every 45 minutes or so after 3AM, thinking I was WIDE AWAKE and ready for the day, and then would fall right back asleep. Can't get the tea into myself quickly enough this morning... I'm tired, just a bit groggy.

And I still feel sloshy. Can anyone identify with that? I just feel a little more... liquid.

I'll write something intelligent later. More tea.

Waking up

Ok - we're now 7 hours post infusion. I started feeling better at about 5:30 - got up from in front of the TV, got a child from a friend's house, made dinner. I still feel sloshy, but not so sleepy.

I can do this every 6-8 weeks... but I do need to make sure that I don't drive home in traffic and that I have not much going on for the rest of they day...

Lets see what tomorrow brings, mousie.

Note to self - don't just buy the lattte, drink it too...

Ok. I'm home. Can't type Lattttttte, apparently. But home.

That was a fun little adventure. I feel sloshy, and sleepy. My eyes are half open. The couch is looking pretty comfy right now.

I'll post again before bed... I'm curious about how long this bleariness will last. It is just like the medical assistant warned me yesterday - like how I feel when I'm having a flare, without the pain. Just the fatigue.

Goodnight.

All done, out of here!

106/58... my new blood pressure. "Nice and relaxed" Karen 1 says.

And I'm done! I'll put up another post in an hour or so after I'm home... just so y'all know what the after effects feel like...

Thanks for reading!