Wednesday, June 27, 2012

The Blepharitis is Back

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Well, it actually never really left.  But I had a period since mid April where the symptoms seemed to have partially subsided.  My eyelids were not visibly red or puffy and the symptoms were not particularly bothersome.  So I got a little lazy and gradually stopped doing my daily morning and evening hot eye soaks and cleansing routine regularly (earlier post on Sjogren's and Belpharitis).  I know I know -- just because there is some improvement does not mean to stop the routine that helps keep it under control.  What a bad patient I can be.  Subconsciously, I was hoping that the previous 8 months of pretty continuous uncomfortable blepharitis might have vanished.  And I do get frustrated with how long my going to bed eye and medicine routines take so I guess that I just started to slack a little bit.

Yesterday, my right eye was feeling more light sensitive than usual and my eyelid also felt numb (this is often an indication for me).  And this morning when I woke up the lower and upper lids were back to being red, swollen, and achy.  So starting today I am back on my blepharitis control routine.

When I went the eye doctor in May, she gave me a new medication regimen to try for when the blepharitis was particularly symptomatic.  At the time, she saw more inflammation in my left eye than my right, but I wasn't experiencing symptoms so we decided to wait before using it.  Now, I am going to need to start the treatment.

I was prescribed Lotemax steroid opthalmic drops for 10 weeks -- 4 x a day for 2 weeks, 3 x a day for 2 weeks, 2 x a day for 2 weeks, and 1 x a day for 4 weeks.  I had used Lotemax ointment in the past for blepharitis, but only for 2 weeks at a time and each time the symptoms came back almost immediately once I stopped taking it.  With this new routine, I will be tapering the drops similar to what is done with oral steroids to prevent rebound.  I will also have to get my eye pressure checked because steroid drops can cause an increase in intraocular pressure, which can lead to super serious eye complications.

Lesson learned for today.  When something improves, don't stop the routine that helped!

Saturday, June 23, 2012

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 (similar to sites such as 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*

Wednesday, June 13, 2012

My Non-Rx Remedies for Sjogren's and Ear Pain

Many readers have contacted me about my previous posts on Sjogren's and Ear Pain and seem to experience a similarity in symptoms.  On my end, due to a recent productive visit with an ENT (yeah!), I now know that my ear problems are not only neurological, but are also a result of chronic sinusitis and eustachian tube dysfunction (ETD) -- common problems for Sjoggies.

When my nasal passages and sinuses are particularly dry and I am congested, my ear symptoms are worse. This makes sense given that the ear, nose, and throat, are of course, all connected.  My previous post described how some doctors suspect that ear pain or otalgia in Sjogren's patients might be partially caused by dryness in the upper respiratory tract, which can lead to ETD (above picture shows how the eustachian tube connects the back of the nose to the middle ear).  

There are a few non-medication remedies and strategies that I have developed over the last few years to help relieve my symptoms of earache and ear pressure. They are by no means a cure all (and please consult your doctor before preceding with them), but anything that helps a bit and allows me to to do more and be more comfortable is worth it.  And I hope that these might be helpful to others so here goes...

  • Saline Nasal Spray -- I use this a minimum of twice a day in each nostril, but sometimes more to keep my nasal passages moist and clear my sinuses.  I also flush my nasal passages with saline prior to using my prescription nasal sprays for better absorption of the medication.  I carry a small size bottle in my purse for emergencies. Saline nasal sprays can be found at any drugstore and popular brands are Ocean and Ayr.  There are also pharmacy brands available at most drugstores, which seem to work just as well.
  • Steam Inhalation/Vapor Therapy --  For me, this is one of the most effective ways to alleviate my ear pain, moisten my nasal passages,clear congestion, and unclog my ears.  I use the Vick's Personal Steam Inhaler and apply about two to three drops each of peppermint oil and eucalyptus oil to the water basin and steam for about 20 minutes at a time.  In their chapter on the Otolaryngologic Manifestations of Sjogren's Syndrome, Drs. Jacqui Allen and Peter Belafsky discuss that steam inhalation is helpful to Sjogren's patients in their practice and recommend trying it two to three times a day.  I would estimate that I have some improvement 60 percent of the time after steaming.  The Vick's Inhaler can be purchased at drugstores and through Amazon.  I usually find the peppermint and eucalyptus oils at a health food store or a place like Whole Foods which carries organic products.
  • Hot Tea --  This is very simple and serves as my version of steam inhalation when I am not home.  If my ears hurt, I will order a boiling hot mint tea and breath in the vapors.  I know it probably looks ridiculous and people around me must wonder why is that woman sniffing her tea, but it can help a bit and sometimes prevents me from having to head home early.
  • Chewing Gum -- Chewing gum with xylitol is already recommended for Sjoggies with dry mouth to stimulate saliva and help prevent dental decay, but it also helps equalize ear pressure especially if you have eustachian tube dysfunction. It is the same principal as chewing gum when you are flying, and it is also a good option especially when I am on the go and cannot use steam inhalation.
  • Keep Ears Dry with Ear Plugs -- When my ears get wet from showering or bathing, it often exacerbates my symptoms.  So I have started to use silicon ear plugs such as those made by Mack or BioEars for showering to keep them dry.  I also avoid putting my head under water when swimming for the same reason.  If my ears still happen to get water in them, I use ClearEars which are a pretty cool ear plug that are specifically made to remove water or moisture from the ears (they also happen to be echo friendly as a bonus).

And these are my main tips for now.  Please share what works for you too so we can start a dialogue and help each other deal with these ear symptoms.

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

    Thursday, June 7, 2012

    Weekend Away...And I did Just Fine

    Our friends invited my husband and me to their house last weekend.  I was excited to relax, but was ambivalent about being away with people even our friends.  You see, I don't like being sick or not feeling well in front of others.  I get embarrassed and I try to hide or minimize how I sick I am feeling.  And I don't want to spoil others' fun and plans based on my limitations.  I know it might sound completely ridiculous and it is surprising to me too.  I used to be quite the dare devil in my pre-autoimmune days, traveling far off the beaten path and craving adventure and new surroundings, so the fact that a weekend at a friend's house seemed like a challenge shows how much has changed in my life over the last few years.

    But the good news is that the weekend was wonderful.  Our friends were accommodating to my health limitations, including my many pesky food allergies.  They didn't cook any of the items that I am allergic too and asked us for a shopping list before we arrived.  I brought my own gluten free breads and goodies.  We had a lovely barbeque on Friday night and just caught up and relaxed.  Nothing too exciting.  And on Saturday I did a few small activities like a walk through the town with my husband.  I felt fatigued and took a long afternoon nap while others swam so that I would have the energy for dinner out at a restaurant where additional friends were joining our group.

    That is also a big deal for me.  Going out to eat at a noisy restaurant at prime time on a Saturday night without experiencing ear pain.  And I had no problems and really enjoyed myself to boot.  Then it was back to our friends' house for what we call "game night".  We played Craniumum which is like a mix of charades, trivial pursuit, and pictionary.  It is always girls versus boys--yes not women versus men because we act quite childish and hyper competitive in a silly way.  The girls won with plenty of taunting of the boys for their defeat. And it is a good thing we won too because last time we got creamed.

    The weather couldn't have been more lovely on Sunday--sun shining, blue sky, zero clouds, and a light breeze. Given that I am on three or four medicines with warnings to stay out of the sun, I lathered on my sunscreen, sported my large brim UPF+50 hat, and sat by the pool under an umbrella for the morning.  Then it was back to the bustling city, but I certainly felt relaxed and like I had been away for a week not less than 48 hours.  I realize I write all the time about being ill so it is nice when things exceed my expectations.  And for now I just want to take advantage of the fact that my health has been a bit more stable and sometimes I can do more than I think.

    Tuesday, June 5, 2012

    When a Generic is not Generic

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    Ah medicines, such a wonderful part of my life.  My latest saga made me find out about the possible hidden problems in switching between generics, of which I was previously unaware.

    When I went to the pharmacy last month to pick up a refill of a prescription for oxcarbazepine, I didn’t initially notice that the generic brand the pharmacist gave me was different than the one I usually take.  Oxcarbazepine, or its brand name trileptal, is an anti-seizure medication that I take for autoimmune neuropathies.  (In my case, my cranial nerves or the nerves coming from the brain have been negatively affected by Sjogren’s and this medication provides some incomplete relief.)  Lucky me, I noticed the difference once I started taking this other generic form of the drug.  First, I felt particularly groggy and sluggish on the different generic. Then I noticed that the drug was just not working and my face in particular felt numb, and I was in more pain than usual.  In my opinion, being in more pain than usual for no good reason is unacceptable.

    I went to talk to the pharmacist, but that provided little help.  I asked if he could order the brand that I usually take (manufactured by Cadista) and he said that "it was not available" and that the generic manufacturers of drugs change all the time.  He appeared unconcerned by my predicament, and seemed to regard the distinction I was making between generics as irrelevant. This didn’t sound quite right to me since I had been taking this brand of my medication for over a I started making phone calls.  I got in touch with Cadista directly and was told, low and behold, that they were still manufacturing my prescribed dosage of the medication. 

    Well, I then knew my neighborhood pharmacist not only didn’t take seriously the problems I was experiencing, but he was also wrong about what was possible.  I went the route of working with my neurologist and my insurance company’s mail order pharmacy.  The mail order pharmacy said that they would be able to order the Cadista brand of the medication and that either I or my physician could request if a specific generic brand was preferred.  Just to make sure that all my bases were covered, I asked my physician write the three month mail order prescription specifying the Cadista brand so that there would be no confusion!  As our own patient advocates, it is often a time consuming and frustrating process to get even what should be small medical details handled.

    While sorting through all this to get the medication that I needed, I couldn’t help but think that other patients might have had similar problems switching between name brand and generic drugs or between generic brands. I already knew that generic and brand name drugs have the same active ingredients, but they do not need to have the same inactive ingredients.  My big finding was that the category of drugs, anti-seizure medication that I am on are a particularly tricky problem. The FDA requires concentrations of generic and brand name drugs in the blood stream are within a very close statistical range before they are approved.  However, what the acceptable deviation ought to be for some drug categories is much less clear.

    First, it turns out there is a specific open question as to whether switching brands can cause an increase in seizures in some patients and whether the FDA standards for differences in blood level concentrations between brand and generic seizure drugs needs to be narrower for this class of medications (Some generic cardiac, thyroid, and anti-depressant medications have also been of concern).  Then, just to make this issue even more complicated, a recent study from the University of Connecticut and Hartford Hospital indicates that it might not be the difference between brand and generic drugs that can cause problems for patients, but the actual switching itself whether it is between generics or a generic and brand name drug.  Currently, the FDA has three studies in the works to look at these very issues with regard to the efficacy and safety of generic and brand anti-seizure medications.  So, not only was my pharmacist wrong about the differences between generics and the availability of my generic, but he was also woefully uninformed about the particulars of anti-seizure drugs.

    I asked a few doctors and started reading online and found out that this was a real problem.  One of the major concerns that physicians have is that, similar to my experience, patients might not even be notified when they are given a new version of a generic anti-seizure medication when refilling their prescriptions.  Pharmacists are not required to give this notice.  Patients also have little control to remain on specific generic medication because pharmacies often change which brand they carry based on issues such as lowest cost and availability of supply. The American Academy of Neurology has put forth two position papers expressing “concerns with generic anti-epileptic medication and that physicians should approve all generic substitutions.”  This would mean that pharmacists could not substitute generic seizure medicines for a brand name without a doctor’s consent.  

    Luckily in my case, I was not at risk of a seizure, but I did have adverse side effects from switching between generic anti-seizure drugs.  My take away from this experience like many of the other medical adventures that I have had is that I cannot always rely on medical professionals for help and to provide important information. And I have to trust my instinct when something doesn’t seem right with my health and press forward for answers.  While I do admit it can be tiring and sometimes I want a break, that is what having a chronic illness and being your own advocate requires. I don’t feel that I really have a choice in this one.

    Have any of you similar problems with switching between generics or generic and brand versions of the same medication?  Are there other specific conditions that you know patients need to watch out for when switching?

    Cake Health. Are Brand Name Drugs Better Than Generic?
    Epilepsy Foundation of Connecticut. Press Release.
    FDA. Facts About Generic Drugs.
    MedPage Today. Generic Seizure Drugs Vary Widely in Bioavailability.
    MedPage Today. Generic Versus Brands: How it Plays out in Practice. 
    New York Times. Not all Drugs are the Same After All.
    ScienceDaily. Substitution of Generic Drugs May Cause Problems for Epilepsy Patients.
    UConn Today. Study: Switching Anti-epileptic Drugs Could Increase Risk of Seizures.
    Wall Street Journal. Inexact Copies: How Generic Copies Differ From Brand Names.