Is the Flare Finished?

Alright, I am slowly emerging from my flare.  Thankfully!  I've been out of touch here for too long. It has been a rough few weeks and as those of you know with autoimmune disease, flares and their duration are unpredictable. 

The first interesting thing about this flare is that it appears to have been initially triggered by the flu shot.  Yes, the flu shot.  Now, I know this might sound controversial, but bare with me, this is not my analysis but that of two of my physicians who specifically treat patients with autoimmune disease.

I got the flu shot and 48 hours later my autoimmune symptoms started acting up and then kept getting worse.  Within the next couple weeks, I knew I was in really trouble. I went from being in a position where I could largely manage my Sjögren's to being in excruciating neurological pain.  I had the good fortune of several relatively healthy months, so that I had almost forgot how severe and debilitating constant trigeminal nerve pain can be.  Well, that changed fast. Pain medication wouldn't even touch it.  My eyes became so dry and painful that I had to be put on steroid eye drops.  I stopped being able to read or use a computer all together and went back into survival mode.

Now, being the stubborn Gal that I am, I thought to myself at the time, I can manage this flare myself.  I won't contact my rheumatologist, there isn't much anyone can do for me.  But when the pain started to reach an 8 everyday and I couldn't leave my home, I changed my mind.  Well to be honest, my husband had to partially convince me that it was time to seek medical help.

I was hesitant to even mention the timing of the flu shot with my doctor. I expected my rheumatologist to think that I was nuts since I am so used to doctors touting the important benefits of the shot--particularly for someone who has so many health issues.  But I was surprised. He told me that vaccinations do have the potential to cause activation of autoimmune flares. He said this doesn't mean that you shouldn't get vaccines, or even avoid the flu shot, but there are risks.  (Note: This is in part why I have so much respect for my rheumatologist, he understands that there can be exceptions to the general medical wisdom.)

Then I talked to my eye doctor, who specializes in autoimmune disease. He also had a patient like me who went into a serious flare after getting the shot.  At this point, I was at least sure I was not the only patient who had this happen.  It was helpful to know, but also convinced me to write this post in case others have had a similar issues--however unusual it might be.

I want to be clear I'm not making any recommendation or generalization for other Sjöggies or autoimmune patients.  As I've written in the past, I do tend to experience what are often considered the "rare" or "unlikely" side effects from medications and procedures.  

I currently have my fingers double crossed that I'm on the other side of the flare.  I had to have a number of days of steroid infusions followed by a slow taper to get my overactive immune system under control.  As we all know, being on steroids have all sorts of unwanted side effects including lowering your overall immunity.  Not surprisingly, during this winter season where everyone seems to be sick, I came down with a super bad virus that included fever, cold, and stomach upset that left me flat on the couch for another week.  So here I am again, slowly rejoining the world after another autoimmune blip.  I'm hoping and praying that there aren't many of these interruptions in 2014!

A Flare Has Come Around

Well, I've been absent for a bit with good reason.  It's something many of you are familiar with-- A flare.  

As one of my doctors says " for you flares always starts with the eyes".  My eyes become extra extra dry and uncomfortable (As if they weren't dry enough already).  And then the cascade of other symptoms tend to follow.  The neurological are really the most disabling for me because they are just so darn painful.  Once my trigeminal nerve and eyes are activated, (similar to the article discussed in my last post), reading and writing become a real challenge.  I have to limit my time "using my eyes" because it can only exacerbate the neurological pain.  I enter into prevention mode.  I am always calculating what can I do to prevent my symptoms from getting worse and to give myself some relief.  Because once the pain reaches an 8 or even a 10, it's very hard to get it back to being manageable.  

Keeping my eyes extra moist is one of my strategies against neuropathic pain,and I find the dryness at night to be a particular problem.  Local inflammation of the cornea can stimulate the trigeminal nerve so keeping the surface of my eye as comfortable as possible can at least help minimize my pain.  I've discovered a couple new products that have been somewhat helpful.  

The first, is called Niteeye The Dry Eye Comforter.  It's a disposable bubble bandage that I can stick over my eyes for bedtime.  It creates an airtight moisture chamber so that none of the minimal tears that my eyes produce can escape.  When I take them off in the morning, I can actually see a few small drops of my tears on the clear lens.  I still use my regular night time gel and then put the dry eye comforter on.  They are a bit difficult to order and  the least expensive way is to call the manufacturer directly and order a box as explained on the Dry Eye Shop website. The negative, of course, is that they disposable so the cost can add up over time. I do only tend to use them when my symptoms are particularly bad. 

Dry Eye Comforter

I've also tried the Quartz Nighttime Sleep Shield.  These I've had less success with mostly because I tend to rip the goggles off in my sleep.  That means I only have the eye protection they provide for about half the night.  My head is also pretty small so unless I adjust the band to be very tight, they can become loose easily. I was actually able to purchase these at a my physician's dry eye shop for about half the price listed online.  I've heard that many have had good success with Tranquil Eyes Goggles made by the same company.  These provide the benefit of having moisture pads that can be inserted and in the more expensive models silicone beads that can be made hot or cold depending on what works best for your symptoms.  I just haven't tried them yet. 

Quartz Nighttime Sleep Shield

They both make me look an alien when going to sleep at night, but this is the least of my concerns. Less pain and discomfort is my goal right now.  I'm going to try to keep writing when my health allows and they might just have to be shorter posts.  It will be a bit of an experiment, but so is this whole autoimmune journey. 

What are your go to products during flares that provide some comfort and relief?

Eye Drop News for Sjoggies

One of my fabulous readers let me know that Refresh Optive Advanced Sensitive is now available in a preservative free version.  I've been mourning the loss of Refresh Endura since Allergan took it off the US market almost three years ago.  

I haven't been able to find as perfect an eye drop match since then.  There are so many on the market and believe me I've gone through boxes of different brands trying to find something that made my dry eyes feel better.  As those with Sjogren's and dry eye conditions know, finding an eye drop that works is a very individual choice and what provides relief for one person might not for another. There is lots of trial and error involved.

Last year, I had tried the Refresh Optive Advanced Sensitive as I wrote about here.  While I initially liked how they felt, because they were not preservative free my eyes burned.  I eventually had to stop using them.  So when I heard the news about these new drops, I had to go to the drugstore to see if I could find these artificial tears. Lo and behold, there they were and I've been testing them for the last week.  They come in a box of 30 individual vials as pictured above. 

I've had much more luck with the preservative free version.  No burning and my eyes are definitely getting more relief than from some of the other artificial tears on the market. The drops are basically a combination of Allergan's Refresh Endura and Refresh Optive since they contain glycerin,  polysorbate 80, and carboxymethylcellulose sodium as active ingredients. These might just become my go to drops.

Which artificial tears do you find to be the most helpful?

Living with Autoimmune Disease: Finally Some Eye Progress!

Image Source

Given that the trials and tribulations of daily life with autoimmune disease sometimes seem to fill my posts here, I try to make sure that I share the good news with readers as well. And I have some good news.

While it might sound like a small thing, at my most recent ophthalmology appointment my physician said "your corneas look good".  This was like music to my ears.  That never happens, despite my best efforts.  The news actually put me in a happy mood for the rest of the day.  I called my husband, my parents, and even some friends after my appointment to share the good word with them.  Now this celebration might sound like overkill, but for me this was truly exciting since I never seem to catch a break.  As many of you with autoimmune disease know, it is not that often that our doctors appointments involve unequivocally positive reports.  My eyes had been feeling better recently--but in the past that has not necessarily meant that I did not have corneal inflammation or uveitis. I have actually come not to trust how my eyes feel as an indication for how they look.

This news was particularly fulfilling, because I actually felt like I had done something which had the effect of improving my health.  I had made a concerted effort to follow a strict routine to care for my eyes, which takes an incredible amount of time on a daily basis, and it was paying dividends.  (I have written about my routine in multiple blog posts click here, here, and here).

It is rare at least for me (and I am guessing for others with AI disease) that our actions seem to matter.  I try to do all the right things my doctors tell me to do to help my condition. It is time consuming and sometimes I have wondered if it makes any difference.  Well, I guess it is currently helping.  At least my eyes.  So I will certainly be keeping up with it.  I know this bit of good news does not mean that my eyes will necessarily stay stable.  But for now, I will just keep smiling and hope my eyes remain cooperative for a while longer.

Can My Eyes Really Get Drier?

Sahara Desert

Although I did not think it was possible, my eyes have actually gotten drier.  I guess we’ve moved from a regional desert to the Sahara.

Now, my eye history is long and complicated. My symptoms are made worse due to a previous corneal infection and subsequent scarring, which my doctors attribute to Sjogren's. I also have had uveitits, another serious eye condition which needs to be kept under control or can lead to vision loss. I also have seriously dry eyes, related to my Sjogren’s as well.

Last week, my eyes started to really bother me in a way I have come to associate with serious flares. I became extremely sensitive to light (again!, but it had been a while) and developed constant eye pain, to the point that putting in my usual preservative free drops in my eyes was quite painful.  My right eye became so uncomfortable that I had to use an eye patch just to watch TV. Looking at a computer screen was out of the question.

Generally, when I have a flare up, I put extra drops in my eyes. This time that made my eye hurt more, so I immediately became particularly concerned.

Early Sunday morning my husband I bundled up and trundled off to the emergency eye clinic, where my doctor wants me to go if anything out of the ordinary happens to my eyes.

The good news is that there was nothing requiring emergency care like a flare of my uveitis or an infection.  However, the doctor did notice that my eyes particularly the right eye was extremely dry to the extent that the layer that covers the front of the cornea or corneal epithelium had been effected. This extreme dryness she explained was why I could not put drops in my eye without pain; dryness this severe can feel like a corneal abrasion. Ouch! 

Of course, my blepharitis and ocular rosacea were also simultaneously in full force, which also contributes to eye discomfort. 

The doctor suggested using my nighttime eye ointment (my preference is Refresh P.M. Sensitive but there are a number available) frequently during the day to improve the lubrication, more warm eye soaks, and re-starting steroid eye drops. It was a bit of a surprise to me that my eyes could still be so dry given how much time and how many steps I take each day trying to keep them moist. I guess that is what happens with Sjogren's.

I thought I would share my daily growing eye care routine for my dry eyes and blepharitis.  

What do you do everyday to help combat your dry eyes?

~ Preservative free drops about 8 to 9 times a day.

~ Restasis 4 times a day as prescribed by my doctor

~ Steroid eye drops as prescribed by my doctor

~ Warm eye soaks 2 times a day.

~ Ocusoft lid cleanser

~ Preservative free nighttime eye ointment

~ Humidification every night for dryness

Sjogren's Eye Drop Klutz

Image Source

If I haven’t stated it before, I have always been a klutz and accident prone.  I sometimes trip just walking down the street.  If you leave a computer plugged in next to me, there is a good chance I will trip on the cord.

What most recently landed me at the eye doctor is slightly embarrassing.  (It is also not the first time that some variation of this has happened.)  I was doing a little reading in bed and started dozing off.  I hadn't put my eye gel in and decided in my half asleep fog that I might be able to do it without a mirror.  Well, I was able to get the gel in my eye while at the same time poking my eye right under the eye ball.  It did hurt and my eye felt achy.  I wanted to ignore that it didn't quite feel back to normal the next day, but on better judgment and my husband’s reasoning with me, I decided there was nothing to lose in having it checked out.  I have 3 or 4 ongoing issues with my eyes so taking good care of them is a big priority.

Well, the good news is that the eye doctor saw no abrasion of my cornea or the white of the eye.  I have poked my eye two other times when putting in eye drops or gels over the last two years.  Only one of the times did I need immediate medical care and actually scratched my cornea.  Usually I make this stupid mistake, when I am tired and not paying enough attention to what I am doing.  

In my defense because I have Sjogren’s, my eyes are extremely dry and require continuous drops to provide some moisture.   I also contend with other eye conditions such as corneal inflammation, uveitis, and blepharitis that require medication.  This means that I am putting drops in my eyes on average 12 times a day or 4380 times a year.   So by this calculation it is not unreasonable to mistakenly poke oneself in the eye three times in two years with an eye drop, right?  Still, feels pretty dumb to end up at a doctor for that reason.

I think that I will have to put a hand mirror on my nightstand for anymore attempts to put in drops from bed.  I can’t be the only person with Sjogren’s or dry eyes that’ve had this kind of accident.  What are your tips for avoiding those eye drop pokes?

Food: Why Hath Though Forsaken Me?

Was it really less than three days ago that I wrote about my experience with food sensitivity testing (see here) ordered by my ENT physician and my plan to try some new diet modifications based on the results?  It seems that my body or more aptly my immune system has a different plan in mind and food sensitivities will have to take a back burner for the present time to deal with some unexpected and severe food allergy problems.

I already have serious diagnosed Type I food allergies, the most challenging being to onions and the whole onion family, but the list also includes tomatoes and most tropical fruits.  (The onion family ends up being used in everything making it hard to trace.) Over the last 2 plus years I thought that I had gotten these food allergies under control gosh, darn it!  Cooking my own food, paying careful attention to ingredients, and only eating at a handful of restaurants where the chef and wait staff are willing to take the extra steps so there was no cross contamination in my food.

Photo Source

About a month ago, my husband and I went out to eat with another couple (an activity that has become a new treat since my autoimmune disease symptoms have improved over the last few months) and, lo and behold, my cheeks and lips started swelling. My cheeks felt tight and stretched out and I definitely started to look like a chipmunk.  This from a plain piece of grilled fish. Of course, it had to be a work dinner for my husband when this happened--need I mention the first work related dinner I had been able to attend with him in 3 years. Since I was eating plain fish I assumed there must have been some cross-contamination with onion or one of the other foods in the onion family.  I took benedryl and had my epi-pen in my purse at the ready, but, thankfully, the benedryl worked. I thought that was the end of that.

Unfortunately, it has since become clear that I was entering a whole new chapter of my allergy challenges. Welcoming back my throat-swelling has not exactly been like finding a long lost friend. I am most likely now allergic to something new, making the last several days a roller coaster.  I have again had swelling on multiple occasions, even when preparing meals at home or eating foods that are part of my usual diet. Clearly new foods are wreaking havoc but I am having a hard time figuring out what could be the cause. When my usual breakfast this morning led to another one of these swelling episodes, I knew that I needed to go to the allergist office to start to try to figure out what might be the new allergenic culprit(s).

While we are trying testing to isolate the new problem, we have yet to reach any clear conclusions on the cause of my new allergies. (I'll spare the details but because I'm on steroids, testing and getting clear results is more complex than normal.) In the meantime, since I am now so reactive and we don't know why I have been put back on an elimination diet.  I have had to do this in the past and it is no fun. You slowly add each new food one by one back into your diet, record what you eat daily, and note every allergic reaction. This approach means not eating foods with multiple ingredients, like cookies or breads from the grocery store, because if you do have an allergic reaction it is then impossible to parse out which ingredient is the cause. As I said, no fun.

Being so allergically activated is challenging (and dangerous) in its own right, but making matters worse is that treatment options are limited by my autoimmune disease...while at the same time the reactions themselves put me more at risk for an autoimmune flare. Because I have Sjogren's syndrome, anti-histamines make my dry eyes and dry mouth much worse and also increase my ear pain (related to my eustachian tube dysfunction).  This is the delicate balance that my allergist and I are trying to piece through together. I wish it felt more like science than trial and error.

While my autoimmune disease is what has materially changed the quality of my daily life, I know first-hand that allergies can be life threatening.  Where does that leave me?  At the moment, trying to get my recovery back on track.  Just when my autoimmune symptoms were under control enough that I could begin to socialize and start participating in the world again, my allergy symptoms decided not to cooperate.  I don't have an easy solution. I would like to find a creative way to distract my immune system from attacking the wrong things.  Could I teach it to meditate? Yoga perhaps? Or maybe long distance running.  Anything to distract it from attacking me...and the food I love.

New Eye Drop: Refresh Optive Advanced

There is a new refresh eye drop available called Refresh Optive Advanced. My favorite eye drop, Refresh Endura, stopped being produced in the US in 2010 and I was in quite a pickle looking for an alternative. With other drops, nothing seemed to soothe my eyes as much as Refresh Endura which has active ingredients of Polysorbate 80 and Glycerin (1%).  I eventually found  that I was still able to order preservative-free Refresh Endrua from Canadian website www.well.ca (similar to sites such as www.drugstore.com in the US).  I order these in bulk every couple of months. 

It turns out that Allergan replaced Refresh Endura with Refresh Optive, which a wonderful blogger Sjoggie Stahmer recently wrote about in more detail. Refresh Optive's active ingredients are 0.5% carboxymethylcellulose and 0.9% glycerin. I did try these drops and did not find them to be as effective in alleviateing my dry eyes. So I was pleased to see a new Refresh drop at the drugstore called Refresh Optive Advanced.  It's active indgredients are really a combination of those found in Refresh Endrua and Refresh Optive: Glycerin (1%), Polysorbate 80 (0.5%), and Carboxymethylcellulose Sodium (0.5%).  Allergan advertises the drops as working on all three layers of the tears--the outer  lipid layer, the middle water or aqueous layer, and the bottom mucouid or mucuous layer.

The drops come in a bottle, not individual vials, which is an indication that they do contain preservatives.  I called Allergan and spoke with a medical representative to find out if Refresh Optive Advanced comes in a preservative free version or if there are plans to bring it to market soon.  As of now, these drops all contain preservatives and the representative was not aware if a preservative free version would become available. She recommended waitng 15 to 30 minutes before switching between different types of eye drops.  In my case that would be between the Refresh Optive Advanced and the Refresh Endura.

I do like the feel of the Refresh Optive Advanced, but when I did try to switch between them and Refresh Endura,  my eyes began to burn and sting.  I am not sure if this is a result of the preservatives in the Optive Advanced, but in my case it seems that I have to stick to one drop or the other to prevent that reaction.  Drops with preservatives can cause irritation, redness, and additional dryness for some patients.  I am hoping that Allergan will bring a preservative free version of the Optive Advanced to market.




*I have no relationship with any of the companies whose products are mentioned in this post*

Sjogren's and Blepharitis

Often times when I go to the ophthalmologist, I learn that I have a new eye condition or a previous one has returned.  This visit was no different when I went to the eye doctor earlier this week and found out that the blepharitis affecting my right eyelids has not improved and that it is also affecting my left lids. Blepharitis is a relatively new condition for me and I have learning more about during the last few months.  Since blepharitis is a common condition for those with Sjogren’s, I thought that this would be a good opportunity to share some information about it.

Blepharitis is a chronic inflammation of the eyelids; it is more common in those with Sjogren’s or rosacea.  The meiobmian glands, which make lipids, are found along the base of the eyelids and in some Sjogren’s patients become blocked.   

                                      Picture from the Cornea and Contact Lens Society of New Zealand

According to the Sjogren’s Syndrome Foundation, this can cause “low grade chronic inflammation and bacterial infection resulting in pain and swelling of the lower eyelids.”  Many believe that eye lubricants used by those with dry eyes and Sjogren’s patients may contribute to the meibomian glands becoming blocked and to developing blepharitis.  Tear dysfunction itself in Sjogren’s is also thought to be another cause.

The problem with treating blepharitis can be that it tends to comeback.  Most treatments involve warm soaks and gentle cleaning and massage of the eyelids to open the blocked glands. Dr. Robert Fox from Scripps recommends the following steps to clean the lids:

1.       Make a warm compress by dampening a clean washcloth with water and soaking your eyelid for a few minutes.

2.       Make a solution of 1 teaspoon of Johnson and Johnson no tears baby shampoo in a quart of water.

3.       Use a new warm washcloth and put it in this solution and then put the washcloth over your eyelids (with eyes closed).

4.       Next gently massage the washcloth over your eyes

Your doctor may prescribe medications, a specific cleaning routine, or eye cleansers for you.  My doctor has had me use prescription Tobradex a combination anti-biotic and steroid ointment for when the lids become swollen and painful. For Dr. Fox’s complete discussion and recommendations for blepharitis and Sjogren’s click here. Let me know if you any other suggestions or tips that help you keep blepharitis under control.   Mine seems to keep rearing its head every couple weeks.

More on Dry Eyes: FL-41 Glasses

When I tell people I see the world through "rose colored glasses" I mean it literally. Many people with Sjogren's and dry eyes also have light sensitivity.  FL-41 tinted glasses are glasses with a rosy tint that can help people with problems including light sensitivity, blepharospasm, and migraine headaches. In addition, to the attraction of the optimistic metaphor for someone dealing with illness, these glasses have been a great help to me in improving my ability to do more with my eyes daily.  While researchers aren’t exactly sure why the Fl-41 tint helps those with light sensitivity, they think it may have to do with blocking green and blue wave lengths of light.  I found that these lenses are an alternative to my wearing sun glasses indoors and in the evenings. They make it easier for me to read, work on a computer, and be in an environment with very bright lights. 

FL-41 tinting is available through the University of Utah John A. Moran Eye Center; you can mail your glasses to them and have them tinted for $25.00.  If you are understandably ambivalent about changing your glasses without knowing if the tint helps, you can opt to have a clip-on made that fits your existing glasses for about $125.00. If your glasses have a glare resistant coating (which mine do), they cannot be tinted so you have to go with the clip-on option.  Within about 10 days of sending my glasses to Utah, my FL-41 clip-on and glasses arrived safely back to me. You can also have your glasses customized with darker or lighter tinting depending on whether you want indoor specs or sunglasses.  

You can see the before and after pictures of my glasses with the FL-41 clip above.  I call them my John Lennon glasses because they do look a bit alternative and funky, and I mean that in a good way.

Check out the Moran’s Center website here for more information: http://uuhsc.utah.edu/MoranEyeCenter/patientcare/FL-41_faq.html. 

Dry Eye Rituals

  

I know that dry eyes are a major problem for Sjogren’s sufferers.  For me, they have been a HUGE impediment to reading books or using a computer and hence returning to my work, which was highly research intensive.  Like most of my Sjogren's symptoms, each day is not exactly like the day before. One day I might be able to read for a couple hours, but then the next day my eyes will ache and hurt  no matter how many times I put drops in them or “keep them watered” as I like to say.  I also have some corneal damage, probably due to Sjogren's, which makes the pain in one eye more severe than the other. My eyes have windows of opportunity and I try to take advantage of them and then rest my eyes when they are beat and painful.   I thought that I would share my eye rituals and some of the products and techniques that I have tried to deal with the dryness.  I would love to hear your suggestions and how you combat your dryness.

Eye Drops -- Drops, Drops, and more drops.  If you spend any time with me, you will be sure to see me putting drops in my eyes. 

a.       I use over-the-counter (OTC) eye drops about eight times a day.  I tried almost every OTC eye drop over the last few years and the only ones that don’t cause burning and discomfort for me are Refresh Endura by Allergan.  They contain the same ingredients found in Restasis without the medicine cyclosporine.  I was mortified when Allergan replaced these with Refresh Optive in the United States Market.   My eyes were unhappy, dry, and uncomfortable.  It turns out that Allergan had stopped selling Refresh Endura in the US; after much Internet sleuthing we learned that the drops are still sold in Canada by www.well.ca. My eyes are very happy to have Refresh Endura again.  I know that OTC drops are a personal preference and everyone’s tears are different, but if there is anyone out there who has been looking for Refresh Endura I hope this helps.

b.      I also use Restasis four times a day as prescribed by my eye doctor.  The active medicine in Restasis is an ophthalmic solution of cyclosporine--an immunosuppressant used to prevent organ rejection in transplant patients and for autoimmune conditions such as rheumatoid arthritis.  These drops made a big difference for me as well and, sometimes, when I blink there are actually tears.  

c.       My doctor has also prescribed Lotemax by Bausch and Lomb, a corticosteroid eye drop to use only when my dry eye pain is extremely severe.  It is only to be used sparingly because it can result in side effects such as glaucoma and changes in eye pressure.  So, Lotemax is an option of last resort for me, and I only use it at most a few times a month.

In the evening, I always use a lubricant eye ointment.  My current ointment of choice is Refresh Sensitive PM, but I have also used GenTeal PM Lubricant. There are many others as well.  The ointments are a bit gooey and they make it hard to see. I always put the ointment in just before bed when there is nothing else that I need to do that night. Without using these ointments, it becomes very hard for me to open my eyes the next morning.  If I forget to use it one night, my eyes  feel like they are sealed shut and are then uncomfortable for the rest of the day.  Not worth it to forget the ointment.

Alas, my eyes are telling me it is time to stop or they will rebel and really start to hurt.  I am trying to learn to stop when my body starts to tell me to... so more on dry eyes in my next post.