The Steroid Roller Coaster

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If you have autoimmune disease, it’s likely you’ve had some experience with being on prescription corticosteroids steroids.  They can be quite effective to tamp down our overly zealous immune systems and get flares under control.  They are anti-inflammatory and are also used for other conditions like asthma, allergies, and joint inflammation.  It turns out at some point I’ve been on steroids for most of the above issues.  But while they often seem like a potential wonder drug--and at times they have been for me--they are not a medication to be taken lightly.

Let me start with the good news.   They work. When I’ve had bad flares, I mean flares where each second feels like an eternity of pain, getting infusions of high dose IV steroids usually gets things under control enough.  Nothing else has done that for me in those cases.

When I’ve gone to the emergency room with an anaphylactic reaction, steroids (combined with benedryl) gets the swelling of my throat under control.

For me, however, steroids are not just for emergencies. They are part of my monthly infusion routine to decease side effects and also prevent me from having an allergic reaction.  This is where the problems begin.

Because steroids change me.  I must admit it.  The first two days that I am on them, I usually don’t mind the increase in energy they tend to give me. I feel a bit like super woman. I have more energy, I can do more things with my daughter, carry more, walk more, it's great...at first.

But then I get what must be a milder version of what baseball players call roid rage.  I become quicker to frustrate and anger.  I still look like me (perhaps with a more swollen face, which is another side effect), but I certainly don’t feel like me.  Little things really bother me and my patience goes from what I would consider my usual fairly tolerant self to a short fuse.  I feel all around frustrated. I get mad at my husband and I'm often not sure why; basically because he’s simply the person who is with me the most.

I also feel less optimistic on steroids.  My mood drops and I feel down about having autoimmune disease and how it is impacted my life, career, and family enormously.  The glass goes from half full to half empty in a matter of two days.

Mood changes, mood swings, and depression are listed as side effects off steroids. Some of my doctors have told me my low doses shouldn't cause these problems, but they do for me. I have to be on this medication for approximately a week every month, so it's a regular cycle that I should be used to, but it catches me every time.  My infusions have helped bring me from being disabled by autoimmune disease to relatively functional again, but steroids are part of the bargain that comes along with it.

I don't really have a great solution for what to do, but I have compiled a list of things that are marginally helpful.

1)  Remind yourself that how you feel is not really reflective of who you are and this episode will pass.  Of course easier said than done.

2) Warn close family members that you might not be exactly yourself.  Apologize in advance for any ridiculous things you might say.

3) Ask those in your support network to remind you that how you feel is not realistic and temporary.

4) Create A mantra that you and your family can use. “It’s not me talking, it’s the steroids.”

5)  Engage in normal stress reduction techniques.  For me these might include walking, mediation, and making plans with others.

Most of the time, I feel like I am just trying to get clumsily through these tough periods.  I imagine many others with autoimmune disease confront this problem as well and I would love to hear your input on what works for you.

Being an Autoimmune Mama: Stronger than I thought

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Recently, my husband and I took our first trip with baby to Florida.  It was lots of work to prepare to get away and it took lots of convincing to get me to agree to fly with an infant, but I am glad that we did it.  Overall it was a great trip, but there was one adventure that I just had to share. 

It took me a day to get settled and feel comfortable.  We had gotten the baby into a new routine and now I was ready to relax.  I decided to take my very first bath since the little one was born. I had picked out an actual grown up book; I couldn’t wait to read while she napped quietly.  (This is a real luxury when you have a baby as I’ve quickly learned).  Just as I was beginning to feel like I was on vacation…the fire alarm started going off in our hotel. A false alarm? Not with my luck. A loudspeaker quickly blared that we must evacuate the building.  And where was I?  I was sitting in the bathtub in a room on the 12th floor.  My husband? He was downstairs on the beach.

So I found myself naked and alone with my precious daughter, hearing over a loud speaker that there was a fire.   A dream vacation memory in the making if there ever was one.  I didn’t have time to think. The adrenalin started pumping and I rushed into action.  My baby!  A fire! At first I almost ran out of the room without my clothes. I took a deep breath, threw some clothes on and put the baby in the stroller.

As soon as I got out the room, I started screaming in the hallway that I had a baby and needed help evacuating. There was nobody to be found. Everyone must have been at the beach for the day.  I headed toward the fire exit and started a twelve floor race down the steps, carrying my daughter in her stroller.  (I’m not sure if any of you have lifted a stroller recently, but they aren’t light).

I thought about carrying her down in my arms, but that didn’t seem like the safest option.  The stairway steps were concrete and I wanted my baby protected in something in case we encountered a fire.  I kept thinking over and over, “I must save my baby,” as I ran down the stairs, carrying probably over 35 pounds of baby and stroller. Any thoughts I had of stopping were erased when I smelled smoke in the stairwell. My heart raced faster and my legs took on a life of their own. I was glad for me pre-pregnancy attempts at a stairmaster.

It seemed like the run down the stairs was never-ending. Those fire safety messages from grade school ran through my head, but I wasn’t sure how they were going to help me in a stairwell. As I was nearing the bottom, a nice woman and her middle school aged son helped me to carry the stroller the frame the rest of the way.   When I made it through the fire exit onto the street, all I could feel was utter relief. 

Any thoughts if my sprint had been worth it disappeared when I saw two large fire engines and police vehicles camped in front of the hotel building.

I searched the crowd and saw my husband in the distance and screamed for him. He was petrified of course and had sent someone from the hotel to go and help us get down.

And you’ll never guess the cause of this whole hulabaloo, it was a dryer that had caught on fire.  It was classified as a minor incident according to the police and fire officials.  But it was a fire. For me personally, however, it was major event.

Who would have thought that I would actually have the strength to do something like that?  On a good day lifting 10 pounds can exhaust me.

It gave me the confidence to know that as a person with autoimmune disease, I am up for the major challenges of parenthood.  While I might have to do things differently and creatively, when it comes down to it, I will jump through hoops to protect my daughter.  I also learned adrenalin is some pretty powerful stuff.

 

It's A Girl!

I have some big news that I’ve been meaning to share; my husband and I have a little girl!  She came last month and earlier than expected, but thankfully she’s perfectly healthy and doing wonderfully well.  We couldn’t be happier and more excited.  It’s truly a miracle given my health issues and a very high risk, complicated pregnancy that we’ve been blessed with this little baby and are now a family!

Life has a whole new rhythm.  Feedings, diaper changes, and tons of hugs, kisses, and snuggles are what make up my days and nights. We’ve been lucky to have lots of support from family, but this is a whole new kind of work.   Like many first time moms, I’ve got lots to learn and everything is new to me.  And of course, I’ve got the added challenge of trying to figure out how to take care of myself and keep my health stable so I can take care of her.   When do I fit in rest, putting in eye drops, eye soaks, keeping my medicine organized, doctors appointments? I know this will be an ongoing process, but for now I’m just basking in being a new mommy and doing the best I can with our little one.

I'll try to keep posting when I can, like right now--when she’s peacefully napping, but I just had to share our joy with all of my wonderful readers!

Where in the World has Autoimmune Gal been?

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Some of you might have noticed that I haven't been blogging as much.  My twitter and Facebook presence has also dwindled.  But I promise there is good reason for my less frequent communication.

It also happens to be a very exciting and wonderful reason--my husband and I are expecting our first child.  Yes, Autoimmune Gal is pregnant.

We didn't know that having a family would be a possibility given my multiple autoimmune and health issues.  It took lots of communication and coordination with multiple doctors to just plan for the possibility of trying to get pregnant.

Important medical questions and issues had to be addressed.  What medications would I be able to stay on?  Did I need to change medications or lower doses before becoming pregnant or was it safe to wait until a pregnancy was actually confirmed?  How would we keep my autoimmune disease in check, while trying to protect the baby?  Would pregnancy make my autoimmune manifestations worse, the same, or better? And these were just the tip of the iceberg.

With pregnancy many of these questions do not have clear cut answers.  Medicines aren't regularly tested on pregnant women so there is less data than one would like on safety and fetal outcomes.  The doctors have constantly reminded me that if I'm not healthy, the baby won't be either, but this is really tough complicated stuff.  And we've certainly added another big and of course wonderful variable to the careful health balancing act.  

Beyond my autoimmune issues, my pregnancy is super high risk so I'm being monitored you might say within an inch of my life.  I guess you could say I'm super super high risk.   My doctors appointments have more than doubled and every health issue that comes up has to be thought through even more carefully and methodically.  Right now, we're trying to enjoy the pregnancy while keeping our fingers double and triple crossed that everything will be OK.  We know this is such an amazing blessing, but we still have a long way to go.  

So that's my update on where I've been.  I love writing and communicating with all of you and feel like something is missing when I'm not.  I'll keep writing as much as I can.  I know when the baby comes it will be a whole new kind of busy too!

Sjögren's Awareness: The Sjö Test in Action

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Back in November, some of you may remember that I wrote about a new diagnostic test for Sjögren's  called Sjö. Read more here.  What's unique about the test is that it uses newly discovered diagnostic markers which can detect Sjögren's earlier than the traditional antibody tests (SSA and SSB).  Well due to my recent spate of eye problems, I've been spending lots of time getting to know my eye doctor and his fellow.  I'm sure most of you are not surprised that I often use my doctors appointments not only as an opportunity to deal with my own health issues, but to also to bring up new Sjögren's research.

During one of these conversations, I mentioned the Sjö test.  Well it turns out that my doctor's office is one of the earlier practices using it and is having significant success with it. They have diagnosed a number of patients who in their estimation would have needed a lip biopsy or it would have taken another couple years for them to develop Sjögren's antibodies.

Some were having what were considered "vague symptoms" of dryness, joint pain, fatigue, and the doctor thought to order it.  The results came back positive in a number of cases.  This even happened to one of the technicians who works at the ophthalmology practice--and she is now being treated for Sjögren's.  Early diagnosis is extremely important as many studies have indicated to help reduce further complications of the disease.

Often times as an autoimmune disease patient, medical research and development seem slow.  It can takes years, if it ever does at all, for the implications of a new discovery to actually make it to patients as a diagnostic tool or treatment.  But this development is real progress in action.  The test was just released in November and it's already helping patients.  A perfect reason to feel hopeful as we reach the close of Sjögren's Awareness Month.

Missing Out and Chronic Illness

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Not being able to participate in aspects of life is a tough reality for many of us with autoimmune disease.  It is something that I'm definitely grappling with at the moment. There is a constant balance of trying to protect my health and at the same time manage other priorities.  I often struggle with the question: What is it actually possible to do without health consequences?

This upcoming weekend I am supposed to attend a family member's wedding across the country from where I live.  I have been pretty determined to attend and believed (or perhaps hoped) my health might actually be in a place where I could make the six hour flight across the country.  My husband and I still waited as long as we could to purchase the tickets.  We told the bride and groom that we couldn't guarantee our attendance, to hold off submitting our names for their count as long as possible, since there was always a chance that we might have to cancel at the last minute.

Everyone in the family has been rooting for us to come.  As background, I haven't been able to make a trip like that in at least five years and have missed almost all of our families' and friends' events that have required out of town travel over that time.  This one event holds real significance for me.  All my first cousins and their children will be in attendance and the last remaining relatives in the their 80s and 90s.

Things looked good last weekend.  I was confident that I would make it.  I was looking forward to the adventure...as well as the warmer weather.  However, within a mere forty-eight hours from announcing my intention to go to the wedding, things began to change.  My eye and the area surrounding it became red and started feeling painful.  My face began hurting as well.  My eye doctor fit me in immediately for an appointment yesterday, and just my luck, I have an eye infection.  I know from experience as Sjögren's patient who has had both a corneal ulcer and uveitis, that eyes are serious business.  Getting this infection under control and making sure it did not spread any further had to become my number one priority.  I also knew, as my doctor reminded me, that making a long distance trip with my eye compromised and my other health issues just didn't' make sense.  

While I know intellectually this is the right decision, I am definitely taking this turn of events particularly hard. I have handled most of the disappointments surrounding how my life has changed without getting too upset.  I have become very good at being thankful for the little things that I can do, as opposed to focusing on what I cannot.  I was thankful once I began being treated to have a day without severe neurological pain, to be able to just read an article in the newspaper, and have the energy to walk around the block or even go to the grocery story.  But now I am starting to expect more--and I don't want that to change.  I refuse to give-up on the idea that I will be able to work and participate in life with family and friends when there is so much that I want to accomplish.  I know that I will keep forging ahead despite these many twists, turns, and unexpected health challenges.

I have been coping by calling everyone in the family who will be there to catch up--letting them all know I will miss seeing them and how much I truly want to be there with them to celebrate.  Everyone has promised to send me real-time pictures of the festivities and I'm expecting play-by-play descriptions of all the events.  I trying to gently remind myself that the fact that I could consider even attending was progress.  There will be more happy occasions in the future and I will figure out a way to be at them.  

But I also think it is ok to mourn and just be sad that I am missing out on a momentous family occasion--and to feel keenly that it is isn't fair that having chronic illness has meant constant compromise, lifestyle modification, and putting many things on hold...while my friends and family are excelling in their careers and running marathons for fun.  I am not sure anyone can perfectly accept the limitations of these tough autoimmune diseases--and I think that there will unfortunately be other times when throwing up my hands and saying "THIS REALLY STINKS!!" might actually be the healthy thing to do.

Reasonably Well: Sjögren's and Cognitive Function

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Everyone should read Julia from Reasonably Well’s excellent post entitled Tufts Study: Despite Burden Sjögren’s Syndrome May Not Impede Function that discussed new research on Sjögren’s Syndrome and cognitive difficulties.   You can read the whole extremely informative post here.  I’m going to comment on some of my favorite parts below and add some of my own reactions.

The Tufts Study concludes that Sjogren’s patients despite their perception “appear to function at a level comparable to their healthier peers.”  This is obviously good news, but Julia addressed some of the potential flaws with the study and raises research questions for the future.

Starting with the issue of fatigue, Julia writes:

I noticed that the assessment of fatigue…was not located in the physical section but rather in the Mental/Emotional locale.  There were no physician evaluations of joint pain, pure neurological problems (as opposed to neuropsychiatric), pulmonary issues, renal problems….to name just a few well-documented extra glandular manifestations of Sjögren’s.

She goes on to say (I love this part).

Since fatigue is one of my most disabling symptoms of Sjs and I'm a bit touchy about labeling fatigue as an all in your head symptom, I found it interesting that elsewhere in the discussion section of this study, fatigue is included under the description of "neuropsychiatric problems".

Well, I must say I’m touchy about this too.  And isn’t their bias in the research if fatigue is classified as neuropsychiatric from the beginning?

And I have had a similar experience to Julia where as she writes that for her tired=stupid.  What a perfect equation. I completely relate.  When I’m having complete autoimmune exhaustion, I also have what I would call brain-fog. 

This idea also got me thinking.  Do studies need to include both disease activity and cognitive function? Would it be worth exploring whether “flares” have both cognitive and physical impacts?  And Julia also brings up another super super important point about study design:

This was not a longitudinal study. Study authors would have no data to support their discussion of length of disease related issues.

In another small controlled study on the subject conducted by doctors and psychologists, including the Director of the Penn Sjögren’s Center, Dr. Frederick Vivino, found significantly lower IQ scores and lower verbal memory scores for the Sjögren’s group (click here for the study). No statistically significant differences were found on concentration and processing speed, visual memory, or executive function.  Interestingly Tufts and the Penn Studies used different measures of cognitive function.  While the Penn study also clearly had its limitations with only 17 participants and it did not occur over a period of time, the authors tend to stay away from broad generalizations, and suggest more research including “correlating neuropsychological findings with neuroimaging.”

On the other hand, the abstract of the Study out of Tufts University concludes that "Sjögren's patients perceive deteriorated physical function over time, but they achieve a level of functioning comparable to controls despite the burden of their illness" (click here for the abstract). In my opinion, that language is a bit misleading. Making physical conclusions about a cognitive study makes little sense. 

Perhaps, if a rheumatologist who regularly evaluates patients and the glandular and extraglandular manifestations Sjögren's had been involved in the study, he/she would have taken other issues into account.

While it is always good to see new research on Sjögren’s, it’s also important that the authors identify the scope and limits of their research. 

Thanks Julia for your excellent post and bringing it to the attention of all us Sjöggies.

What did you think of the Tufts Study?  If you could suggest new research on Sjögren's, what would you focus on?

Trigeminal Neuralgia and Turtle Fur

From reading the tittle, you might be thinking what do the trigeminal nerves have to do with turtle fur and do turtles even have fur?  But I promise this post is actually about something that I find extremely helpful during these frigid windy months called Turtle Fur.

As I've mentioned in the past, I have cranial nerve involvement as result of Sjögren's and unfortunately my trigeminal nerves have been affected.  Check out my previous post here and the awesome Sjögren's blogger Julia from Reasonably Well has also discussed it here.  

The bottom line is that trigeminal neuralgia is an extremely, extremely painful condition and unfortunately wind or cold touching the face can be a major pain trigger for many who suffer from it. This presents a great challenge for those of us who live climates with frigid and windy winters. For me, this means that in order to go outside in the winter, I need to keep my face protected at all times.  Something like a scarf just doesn't do it because the trigeminal nerve runs down the side of the entire face and has three main branches that also cross the face.  Scarves and even pashminas also don't stay up completely and can easily fall down as I've learned the hard way.  Believe me, I've tried everything.

A couple years ago, I found a product called the Turtle Fur Neck Warmer (pictured below) that has been a saving grace.  It is made from fleece, soft and warm, and feels good on my face.  I find that some materials can also be aggravating to my trigeminal nerves.  The great thing about this product is that it can go up all the way to right below my eyes and actually stays there.  Most other products I tried in the past would usually fall down at some point leaving my face exposed. My other favorite thing about this neck warmer is that it has a double layers of fleece so it's very warm.  

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Now, turtle fur isn't the only part of my trigeminal nerve protection routine.  I also wear big sunglasses, which shield my dry eyes and the branch of the trigeminal nerve that crosses the eyelid and forehead.  To complete my going outside garb, I wear a hat with side flaps that is lined with a fleece material that covers my forehead completely and adds double protection for my ears, which also have been impacted by Sjögren's (There are plenty of variations of these).  I might not be recognizable when I go out in the winter, but at least I have found a way to go out and be in less pain. 

This faux fur looked particularly protective

Mine is a variation on this lined with fleece

How do you protect yourself in the winter to minimize your autoimmune symptoms?


***Please note I have no relationship with any of the companies mentioned in this or any other post***

"A New Dawn for Sjogren's"

Wiki Commons: Sun Rising at Dawn

It was a good week for Sjogren's!  Three important articles that I saw in just one week.  I'm always pleased when I see more scientific research and attention being brought to the disease for us Sjoggies and I do hope this is a trend. "A New Dawn for Sjogren's":  I couldn't resist the headline from The Rheumatologist.

This article was particularly relevant to me since it linked Sjogren's and inflammation to local neurological pain. As most of you know, I have significant neurological symptoms with my disease. For a long time that was a real problem. Neurologists couldn't figure out what was wrong me and I ended up being prescribed pain drugs and basically told to go away.  There was not a perceived link between the pain and Sjogren's. This article goes in to how the symptoms that are often talked about as "benign" such as dryness, muscle and joint pain, fatigue, and brain fog to name a few can be the most pernicious.  As the authors Robert Fox, MD, PhD and Carla M. Fox, RN write:

In order to make a significant difference in the quality of life for patients with SS, new therapies must not only improve extra glandular manifestations of SS, also alleviate the symptoms (fatigue, dryness, and pain) that lead to patient disability….This will require better cooperation between rheumatologists and experts in the field of neural pain circuits. With a more focused effort, the complex interplay among immune, neural, and hypothalamic pathways in SS may finally be unraveled.

I've always known there was a link between my pain and the Sjogren's, but seeing a researcher detail it and call for new therapies is really welcome and I think may be helpful for others.  I would encourage anyone if you find an article with new research relevant to your symptoms, print a copy and take it to your next doctor's appointment. In my experience, bringing articles like these to the attention of my doctors helps them treat me. 

Given how many we are, the actual dollars spent relative to other conditions is still disappointing to me, but perhaps these announcements and calls for more research over the last few weeks represent a new trend! At least I can be optimistic they will help raise awareness among doctors, scientists, and patients that could really lead to "A New Dawn for Sjogren's" and some relief for us in the not so distant future. At least that's what I'll continue to pray and advocate for everyday.

Celebrating A New Diagnostic Test for Sjogren's

Long Shen, Ph.D. and Julian L. Ambrus Jr., MD

It looks like there's an exciting development to share about diagnosing Sjogren's. There's a new diagnostic panel called Sjö(TM) being made available that includes biomarkers for the disease.  Hip hip hooray!  The hope is that these tests will help reduce the long time to diagnosis that so many patients endure.  It's close to 5 years for the average Sjogren's patient and I've talked to many where it's taken significantly longer.  You can read more about this exciting news here.

The Sjogren's Syndrome Foundation will be partnering with the test's distributer (Nicox) to educate eye doctors about this autoimmune disease (AI disease) and the new testing available.  As many of you know, my motto is that "Sjogren's is more than dry eyes and dry mouth" so I'm hoping that rheumatologists and ENT's and maybe even neurologists that treat AI disease will eventually be brought into the Foundation and Nicox's education campaign.

Now, back to the tests. Being an inquisitive Sjoggie, I couldn't help myself and wanted more information about the exact tests that would be in the panel.  I found this article in Optomotry Times with lots of interesting details.  

The test...combines three proprietary biomarkers (salivary gland protein-1 [SP-1], carbonic anhydrase-6 [CA-6], and parotid secretory protein [PSP]) with traditional markers antinuclear antibodies [ANA], Ro, La, and Rf [rheumatoid factor]).

What's so important about these markers is that they can often be found earlier in the disease process than the traditional Sjogren's antibodies.  

Traditional tests for the disease use ANA, Ro, La, and Rf antibodies, which exhibit sensitivity limitations or are associated with later-stage Sjögren’s syndrome....The newer antibodies were found in 45% of patients meeting the criteria for Sjögren’s syndrome, but lacking antibodies for Ro and La. In patients diagnosed with xerostomia for less than 2 years, 76% had antibodies to SP-1 or CA-6, while only 31% had antibodies to Ro or La.

These new biomarkers have the potential to make a big difference for patients with clinical Sjogren's symptoms that do not initially test positive for the disease.  In my humble opinion, earlier diagnosis can lead to earlier treatment and a reduction in autoimmune complications.  So that's something to celebrate and big thanks and round of applause to those hard working University of Buffalo scientists Long Shen, Ph.D and Just L. Ambrus Jr., MD (pictured above) who made this scientific discovery possible!  

Tales from a Weekend Getaway

Last weekend, my husband and I decided that instead of taking one of our Sunday drives (yes, I think that term might be aging us more than 20 years) that we wanted to get out of town.  It's a beautiful time of year with the leaves changing from green into bright yellows, oranges, and reds. And while I try to forget--winter is just around the corner. 

Our plan to try to get away for the weekend initially didn't pan out as I had hoped.  I was too tired on Friday to leave after packing and making food for the weekend. It's kind of funny that getting ready for our short weekend away actually left me too tired to head off on our trip.  Alas, we had to adjust our plans and instead pack up and go the next morning.

Saturday morning also ended up being a bit of a challenge.  We left and came back to our apartment twice before actually hitting the road "for real". The first time I couldn't remember if I had locked the door.  The second time we were already twenty minutes away and I realized that I had forgotten all the food that I had made for the weekend.  I was just too out of it that morning.  Can you say brain-fog?

But after a rocky start, the weekend turned out quite well indeed. My husband drove and I slept in between stops so I would have energy for the activities ahead.  We began with apple picking at a beautiful orchard.  What looks like markings are actually clay to protect the apples from insects since they are organic and no pesticides were used. 

Our next stop was a small farm where they make cheese from their own cows, goats, and sheep.  I bought a really delicious cheddar cheese that I could keep in my cooler.  That's one benefit of traveling with food allergies--rarely do I go anywhere without a cooler and ice packs.

There were also lots of animals to see on the farm including this adorable baby calf timidly walking about.

The following day, we still had time for a couple activities. We took a leisurely walk with majestic mountain and water views and plenty of benches for resting.  

Our final stop was a town with a cider festival and to our surprise, it had an extensive display of classic cars all along Main Street.  There were even cars over 90 years old from the 1920s.  Pretty Cool!! 

I'd love to take a ride in this one

Then it was time to return home. After a bumpy start, the weekend turned out to be tons of fun.  My husband and I dealt with the accommodations and last minute adjustments that come with traveling with autoimmune disease and food allergies.  Sometimes I think we might actually be getting the hang of this...well sort of...or at least until the next major bump in the road. 

Changes in Medicine: Not a Piece of Cake

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Medicines are a daily fact of life for me, and I know in that I'm not alone.  I'm always looking for a way to reduce the drugs that I do take when possible, since virtually all have some level of side effect or interaction with another of my medications.   However, I have learned the hard way that getting off a medicine can be as difficult as getting used to taking a new one to begin with.  I thought I would share my recent story and a few tips that I've learned to deal with any major medicine adjustment.

The backstory here: Recently, my neurologist and I decided it was time to decrease one of my medications.  This was a good thing. I take the medication to help the neurological symptoms that I have from Sjogren's.  It's an anti-seizure medication called Trileptal and helps control the pain and numbness that I have specifically in my trigeminal nerve.  It's not something that prevents my out of whack immune system from attacking itself, so if I can tolerate a lower dose I'm not putting myself at risk of a flare.

As with all medications, there were side effects especially when I first started taking the Trileptal. I felt foggy like I was sleep walking half the time. I eventually "adjusted," but my brain still only worked at a slower speed.  I felt a bit like the scarecrow from the Wizard of Oz wishing that "I only had a brain".  Well, that's not exactly true, but it did feel like I could feel the wheels creaking as the they turned in my head when I had to think hard about something. When autoimmune brain fog hit, the combination was particularly frustrating.   Still, the Trileptal was the best of the many seizure medications that I tried (and there were many) and feeling slow was the least of my problems at the time when I was having such severe, disabling neurological pain.

So fast forward over three years to this summer and it was finally time to try to decrease my dosage.  The medicine is in a tricky class of drugs since one of the risks with going down on anti-seizure medicines, even if you don't have a history of seizures, is that you can actually have one.

My doctor gave me the basic guidelines for how to go down; I thought I'd follow what he said and would hopefully be done with it in a few weeks. Suffice it to say, it didn't end up exactly like that. When I tried to half my dose as my neurologist suggested, I found myself with bad headaches everyday and unable to sleep.  What immediately became clear is that I needed to go down on this medication more gradually than the "average" person.  There was no risk to going down too slowly just to going down too fast.  If I haven't mentioned it before, I tend to be sensitive to medication generally and on many occasions find myself with the side effects that less than 10 percent of the population do. Lucky me!

At that point, I brought my pharmacist and internist into the conversation as well.  The pharmacist helped me figure out the lowest possible dose of the medication available and let me know that the pills were scored so they could be further broken down in smaller increments. Instead of going down by 300 mg or 150 mg at a time, it was actually feasible to go down by 75 mg at a time.  I have now been able to lower my dose by 75 percent and instead of it being a six week process as initially planned, it took me three months.  This is certainly an example where medicine is both art and science, and each patient might need a slightly different approach.  I was more concerned with having the least side effects possible than being off the medication as quickly as possible.  Here's a few of the quick lessons I learned through this process that will hopefully be helpful in the future.  

1) Discuss an overall strategy with your doctor.  Find out about withdrawal side effects with your doctor and, if there are any, which warrant a call to the office or a follow-up visit.  Some side effects of changing your medication might be unavoidable so make sure to ask if there is anything you can do to better manage them and know what to watch for.

2) Keep a daily log of your medication dosage and any side effects you might notice.  This can be especially useful when following up with your physician.

3) Consult your pharmacist.  Not surprisingly, pharmacists sometimes know more about the metabolism, pharmacology, and timing of medications than physicians.  (To me they seem to be underutilized resource in American healthcare.) My pharmacist has been an invaluable resource about drug interactions in the past.  Luckily, my pharmacist and neurologist had the same general recommendation for the maximum amount that I could lower my dose each week.

4) Keep your primary care doctor or internist involved in the conversation.  This is important even if you are working with a specialist.  Your primary care provider often sees you more and can help coordinate care and deal with any important issues or emergencies that might come up.

5) Do your own research about possible dosing of your medication. This can be especially useful if your doctor has not given you dosing options or you are struggling with side effects. Websites such as drugs.com can be helpful for this kind of information.

6) Don't be afraid to be your own advocate and speak up, call, or email your physician.  As a patient with chronic illness, I sometimes feel like a bother when I contact my doctors office.  But if your physician makes you feel like one, you probably might consider getting a new physician.  

7) Recognize that guidelines for medication dosing are simply that.  Some people are more sensitive to medications than others.  Because not everyone metabolizes drugs the same way, partnering with your doctor to develop an individualized approach to medication dosing can be important.

What have your experiences been with changing medications?  Please share your stories or add any tips to the list. 

Achieving My Goals...On the Football Field

Players Right  After the Snap

I have found that adaptability is a good trait to develop (if you aren't already blessed with it) when you have autoimmune disease.  I realize it's news to few of you but, for most of us, having a chronic illness means that you have much less control over your life.  How you feel varies on a day to day basis and making plans in advance can be futile.  

I have had to work on becoming adaptable.  It's not in my nature.  I like to set a goal, apply laser focus, and accomplish it within a specific timeframe.  If only life were still so simple now. Becoming adaptable has meant finding new interests or enjoying my previous hobbies in different ways.  I used to play sports, exercise, go to the gym.  These days exercising no longer means competitive sports or going for a run and pushing myself to the limit.  I'm lucky to exercise at all.

One channel I have found as a way to replace my enjoyment of participating in competitive sports has been to become an avid sports fan.  I used to enjoy the experience of attending sports games, but I didn't watch many games on TV.  In my new "autoimmune life," I decided that I would start watching football and "learn" the game.  I found that I actually grew to love watching and, as an added attraction, it was a great way for me to bond with my husband--a major football fan. 

To my surprise, I came to realize that football is a really complicated and intricate game.  It is one thing to get the basic gist of what's going on in the game and another to have a good grasp on the multitude of offensive and defensive plays. (I still have a long way to go.)  Understanding football became a project, one that I could do while lying on the couch. The excitement of the games often made me forget that I wasn't feeling well.

As my enjoyment of the game continued to grow over the last few years, I made attending a  NFL game in person a goal.  I wanted to watch my favorite team, the New York Giants. The catch was that I needed to be well enough to go to game.  

The last two months I've had some improvement in my autoimmune symptoms and this fall seemed like it could be my chance.  My husband and I got tickets to a game, keeping our fingers crossed that I would actually be able to make it. 

For a change, everything actually worked out.  The weather was perfect for me -- in the low 70s and cloudy, so I wasn't concerned about the sun causing a flare.  While I was disappointed that the Giants played dismally, there was excitement to just being there with 80,000 other people cheering and rooting.  I can't remember the last time that I've had that kind of experience.  A year ago, I couldn't have imagined being well enough to make the trip to the stadium, having the energy to sit through four hours of football, and contend with large crowds and lines.   

This experience certainly reminded me that while it's important to accept having a chronic illness and its limitations, it is just as important to celebrate those moments when I can tell autoimmune disease to take a back seat.  Now, hopefully, the Giants will turn their season around so I have something to look forward to watching this fall on Sunday afternoons!

High Profile Sjogren's Patients Working Together

So great to see other patients working together.  I know for me personally having high profile patients such as Venus Williams talking about Sjogren's has made it much easier for me to explain the disease to others.  Venus helped professional soccer player, Stephen McPhail, get to a new doctor whose treatment helped prevent him from retiring.  He's back playing again.  Read More below:

Sheffield Wednesday: How tennis ace helped McPhail

Stephen McPhail’s career is back on track after his signing for the Owls - and Dave Jones is not the only one to whom he is grateful.

Tennis star Venus Williams helped him to ditch thoughts of retiring and cope with an incurable disease.

As if winning a three-month battle against lymphoma, a blood cancer, four years ago was not enough, McPhail still has Sjogren’s Syndrome, an immune-system disease.

Williams is the only other sports personality in the world who is known to suffer from it.

He takes up the story: “I didn’t hide the fact that I’d been diagnosed with lymphoma, I had three months’ treatment: radiotherapy and an operation, and played after that.

“I’m lucky enough to have been all clear of the lymphoma ever since; hopefully that will continue.”

His Sjogrens problem became public last year - with that, the body’s immune system attacks the salivary glands, which can cause various symptoms, and it is a condition related to the lymphoma.

“There no cure for the syndrome,” says McPhail. “It’s under control. I have treatment every six months for a day, in hospital. It doesn’t keep me out of training for more than a couple of days.”

Like him, tennis ace Williams has continued her career in spite of it. Says McPhail: “At my house the phone rang and she was on the other end of the line. It was strange to speak to such a superstar; I knew it was coming; my agent had put me wise to it. I spoke with her for more than an hour, just exchanging stories and talking about where we were the syndrome.

“I’ve had some texts and good-luck messages since then. We have both continued playing and enjoying life.

“She’s a super woman, so easy to talk to.”

At one point he had thought of quitting: “I had two months where I just couldn’t get to grips with it. I was breaking down all the time; I was ill, not myself. I lost maybe a stone in weight. I just felt crap.

“She (Venus) put me in touch a doctor in Los Angeles; I flew out there with the physio for a couple of weeks. He gave me a course of treatment that I’m still on.

“It’s calmed the syndrome down and given me the chance to lead a normal life, which is good.”

Spontaneity, the Sun, and Autoimmune Disease

The Offending Blackberries

Last weekend, my husband and I partook on one of our favorite weekend activities -- a day trip drive outside the city.  These have become part of our routine during warmer months. Day trips are easier for me in many ways than overnight ones that require more planning in terms of medicines and preparing foods that I can eat.  But unfortunately, I was again reminded that spontaneity and autoimmune disease are incongruous.  I know many of your have had these experiences where you forget for a just for a moment that you have autoimmune disease and there can be consequences.  Well, that's exactly what happened to me.

The story goes like this.  We were driving along in the country on a clear late summer afternoon.  We decided to a stop by a farm stand for an afternoon snack.  It was supposed to be a quick stop just walking into a building so I didn't think to take my sun protection armor along.  As we were about to pay for our fruits and vegetables, I noticed that someone was leaving with blackberries.  I wanted some of those -- they looked plump and delicious.  I was hungry and it was heading towards the end of berry season. I didn't know how much longer I'd be able to get those treats. So I inquired about how to get them and it turns out you had to pick them yourself.  

I had never been blackberry picking before and at the time it seemed like a great idea.  Something new to try, a bit of adventure for a Gal who has been pretty limited by her autoimmune disease.  Off my husband and I went blackberry picking.  It was not that thrilling to be crawling around picking the berries, but I did feel a sense of accomplishment when we finished.  I had put in some effort to get those berries that we were driving home with.

But, no, our story couldn't just end there. A few minutes after we got back to the car, I started to feel fatigued and weak. Like I had been run over by one of the farm tractors we had just seen.  The sun had gotten the best of me even though it was a mere half hour outside in the late afternoon.  My husband and I immediately realized that I had not been wearing my hat or long sleeve cover to protect me from the sun.  We had been truly living in the moment -- a rare occurrence but one that does not always work out so well.  

The next day I was bone tired and every joint in my body ached.  Walking was difficult and I spent a full day on the couch just resting as my body demanded.  I had no choice in the matter.   By the following day, I started to slowly recover. I was extremely lucky this time. I've had sun induced flares that have lasted a couple months. Boy, I am glad it seems this time I escaped.

Were the blackberries so delicious that it made the whole experience worth it?  They were good, but not good enough to make a mini-flare worthwhile.  When I'm feeling better I always want to do more. People, and seemingly endless articles I read, say you should "forget about your diseases" and "just go for it…you'll feel better."  I sometimes try. But what they don't understand is that when I do, there is all too often a real cost.