Hi everyone!
I am 52 and I have had sjogren's for about 12 years now. We had lived in S. Florida for 20 years and 4 yeas ago we moved back to Indiana to be closer to family because my mother was failing, she died this past March. In Florida, I had mild fatigue and mild dry eyes (used hypo tears when needed, which wasn't often). I started Plaquinil 200mg early on as recommended from my RA Dr. who was wonderful. I worked full time and worked out 4-5 days per week. Six months after moving to Indy, I started working again and has the same work out routine. The first year I noticed and big difference in the winter months with the heat blowing in the house and the car. We added a humidifier to the electric furnace and I also used a humidifier in the bedroom and tried not to use the heat much in the car. I was pretty comfortable with that and adding more drops to my eyes. Second year I noticed my eyes were reacting more to all air, hot, cold, and wind but it was still manageable. This past year my eye have gotten a lot worse. At work the air coming from HVAC, the computer fan, people just walking by, perfumes, etc. were getting unbearable. Mentioning it to HR and the boss was useless (response was can't you take a pill for it). I have tried restasis and numerous other drops and they all irritate my eyes. Hypo Tears is the only one that does not. We moved to a new house that has gas heat and it is even more drying. I could not even tell that we had the humidifier on the furnace ( we had to have the rep come out to show us how to trick this fancy furnace into giving more humidity, which isn't good for the windows but its is helping a little more. I was laid off in August, maybe that was a blessing for my condition but not for my income... When winter hit my eyes got worse, I went to visit my sister in Orlando, FL the week before xmas and seemed to feel better. The week after xmas my eyes got really bad, burning all the time. Went to the eye dr. and he put me on steroid (Omnipred) drops for 14 days - that did not help much so I am being weened off of them. Warm compresses help and more hypo tears and I am wearing motorcycle goggle glasses over my eyeglasses. I am pretty much home bound for now because when I go out in the wind and dry air in the stores and restaurants they get worse. I am working on getting a pair of Wileyx glasses with my prescription, so I will be able to venture out again. I miss working out at the gym (the air bothered my eyes) but as soon as I have glasses that seal I will be back at it. I find working out helps a lot with the fatigue. Anyway, do any of you think that moving back to Florida would help with the dry eyes? I am not sure I will ever be able to work again as painful as it was this past year.
Thanks in advance for your input.
Hi Indydry :)
Welcome to Sjogren's world.
I would imagine that a humid climate would suit us better than a dry climate. I personally couldn't live in a hot climate, however humid it was, because my thermostat seems to be broken and I can no longer take heat although I remember when I just loved it.
If you are sure you felt better when you were in FL well then maybe that's the place for you. Sjogren's can be progressive though so you may be feeling drier wherever.
Take care - Scottie :)
Thanks for your thoughts Scottie. That is the big question, am I getting worse or is it the climate? I will discuss with dr. in a few weeks...
Could you take a holiday back in Florida for a couple of weeks, to see how the climate suits you? That way you may be able to determine if this is a big factor in how you feel. xx
There is no doubt in my mind that climates where you have to use more heat in the house are more difficult. Here in Seattle, I have more trouble on the really cold winter days (as opposed to milder winter days) because my furnace is working harder and drying out the inside air more. It is manageable because winter is also our wet season - way more rain than in the warmer months - and so the air is more humid starting out.
However, it sounds as though your eyes have gotten very much worse pretty rapidly, which may be unconnected to the actual climate. Hard to tell. Visiting Florida to see if you feel better might be worth it. I hope those new glasses help.
By the way, Restasis drops are not intended to moisturize your eyes. They work slowly to reduce the inflammation, to allow your eyes to produce more tears. They do make your eyes sting, and many of us have found them to be well worth using for several months to bring long-term improvement. I started out with a 1 and a 2 for dryness on the Schirmer's tests, and now am up to 10 in the one eye and 8 in the other.Do a search on this site for Restasis entries to learn more. You might want to consider trying them again.
Genko
Hi Indydry,
Let me also welcome you to the SJS World and family! Please do look around as there are oodles of topics that you just might find helpful.
I would also imagine that a humid area would be your best bet as you've done well in it before, but like Scottie said, it just maybe that Sjogren's is progressing (I'm not in the medical field, so it's hard to say).
Take care of yourself -
Patze
How about a climate controlled space capsule?
I live in Central Florida but don't have dry eye problems, although that's just my luck of the draw as opposed to where I live, of course. I've read that a more humid climate is best for those who have the dry eye problem, but I find that the humidity -- especially in the summer -- is harder on my joints, which is where I do have problems. :-\
I really appreciate all the feedback. The problem I had with restasis was itching eyelids at the lash line. Has any one else experienced that. The eye dr. thought I was allergic to it.. I think the eye dr. now thinks the burning is from blephariitis and gave me aza site (antibiotic) to rub on my upper lids. I have not tried it yet because I wanted to get off of the steriod/Omni Pred first since it was causing me problems (headaches, jittery, mouth soars, stomach problems). My eyes seem a little better with diligent cleaning of lids, frequent eye drops and wearing goggles. I am hoping this will get me through the next few dry weeks until I visit FL again. I have had so many reactions to prescription medicines I am reluctant to jump start them. The eye dr. also mentioned the HydroEye vitamins so I purchased them and they made me sick even taken with food. I forgot to mention that I also have Celiac Sprue and have to be very careful to not be gluten-ed by medications.
Thanks for letting me share.
We live in Eastern Washington and have wood heat. I don't have a really serious problem with eye dryness, but I always feel a lot better when we go to a more humid climate--in the last year this has included South Africa, Hawaii, and Australia. I just got back from Oz and got a flare almost immediately. Now trying to figure out why.
Your situation sounds really difficult. I would definitely look into spending some time in Florida, to see how you feel.
Indydry,
I live in Ohio but for the last 3 years I have been able to live half the year in Florida. I work for a physician but work out of my home and am able to do that in Florida. I would not even want to think about spending the winter back in Ohio. The heat just dries me out terribly. I do have very dry eyes and mouth. Also, the sunshine does a lot of good for me. I'm able to walk year round and that is very good for me. I also take Carlsons fish oil. I could not tolerate the other supplements for dry eye as they would irritate my stomach terribly.
Anna
I'm in a dry arid part of California and my doctor has recommended that I move to a place with a cooler climate. Easier said than done. Sure...at my age I'm just going to pack up and move! RIght!
Hi,
I am a military wife from Texas and we are currently stationed in Arizona. The dry eyes and joint pain and dry mouth have gotten so bad here I can barely take it. I am referred to a specialist .... can't wait !!
I have only had minor dry mouth in Texas. My doctor recommended high warm/hot huminity areas such as south Texas, Georgia, .....
I have only been told to take regular eyedrops. Can't wait for the specialist. The joint pain is so bad I am on Percucet some days. I also have hypothyroid with this all. YIPPIE !!!
Hi,
I'm new to this forum and new to sjogrens in general. I have a mild case compared to what some people deal with, mostly just uncomfortably dry eyes and mouth, and a little dry skin. The fatigue is also a bit of an issue. Anyway, I wondering if anyone lives in Phoenix and had a question. I was just offered a great job in Phoenix, but I know its an extremely dry climate. I currently live in southern california where its relatively humid. I'm wondering if living in phoenix is manageable with this disorder? Would you avoid living there if possible? Are you able to get by with sjogrens living in such a humid place? Any advice would be really helpful. Thanks!
Phoenix is pretty humid. It is 53% humidity now. Southern Colorado is a lot dryer. I was surprised when I went there one late June.
Sharon