Month: March 2017

Okay, I know you are going to ask my why I didn’t wait until nothing is going on in my life.  Life does not work that way.  My life is always under change and there is never a perfect time to adjust something.

That being said……

I did use the steroid eye drops the first day I tried the Restasis.  All I can say is WOW.  I have barely used additional tear drops  at all.  The second day I used it without the steroids.  It did not burn.  In fact, it was almost smoothing.  I will be honest though, there is a like a dull ache now, but not consistent.  It has been a week and I have only used fake tears a couple of times.  Mostly due to allergies.

But, after speaking with endocrinologist last week, I have decided to go down another step in my prednisone.  I am at 2.5 now.  This is the last step before going completely off.  Next Tuesday, my husband has labs at the VA and Quest is just across the street.  So, I told him I would fast with him and go get my labs for the endo.

Usually, when I have stepped down a level in the prednisone, it has been pretty consistent.  1 st week – I am fine.  2nd and 3rd – lots of extra coughing attacks.  4-6th, body slowly calms down.  I have been at 5 mg  for over 10 weeks now.  I should have been off.  My body did not calm down until last week.  Maybe it was the time change, I don’t know.  Last week was a good coughing week.

Here it is day 2 with the step down and I have chills, exhaustion, diarrhea, nausea and the ucks along with coughing attacks.  I did not expect the withdrawals symptoms to be so dramatic or so early this time around in the process.  The endo. was concerned over my adrenal glands not responding.   This is a real concern with the early signs of drama on my body.  I hope I can hold out until Tuesday.  He said that once he gets the results, he will advise me as to whether I need to go back up or continue to get off.  Optimally, getting off would be good.   But 5 mg a day will not hurt me as long as I monitor my health aggressively.  He did advise me to up the B-12 dose during the first two weeks to help with the stress.

At the 25th anniversary of church this weekend, people who haven’t seen me in a while commented on how healthy and good I looked.  I told them that is the problem with what I have.  Looks are deceiving.  I did take my portable oxygenator with me and I did use it during service.  There was just too many colognes flying in the air.

Overall, I am feeling pretty good.  I have lots of labs to get done in the next four weeks before I return to the pulmonologist.  Let’s see if it will happen.  I think I will go for the echo cardiogram on Friday.

Either way, whether my health is good, poor or down right ugly.  God has allowed me to continue to work and wake up everyday.  So, everyday has been a good, no matter what happened during it.

Okay,  I have done another round of doctor visits.  The ophthalmologist last week and the endocrinologist today.

Going to the ophthalmologist is necessary if you have MCTD.  Any one of the autoimmune disorders can affect your vision.  So, I allowed my eyes to be flashed at (peripheral test), photo graphed (nerve check), poked (eye pressure) and dilated to the point I thought I was going to vomit (first time I have ever gotten nauseous from dilation – Dr. let me know that this is normal).  After all that was done with a healthy “Your eyes are doing great”, we discussed the dry eye issue.

I have had to use eye drops more than normal lately.  We have discussed for the last four years to start Restasis or do the little eye lozenge things.  After going around about comfort and long-term prognosis for my overall health.  It was agreed it was time.  The money spent on eye lubricants would equal approximately the co-pay for the new drug.  I am to administer it twice a day.  Personally, I might only try it once  a day to see how my eyes react.

The script also came with a suggestion of using an eye steroid drop to help with the pain for the first couple of weeks.  PAIN!  Yes, pain.  Supposedly the restasis eye drops can sting a lot.  It was suggested I put in the steroid drops 10 minutes before the restasis.  I figured out that I could put in the steroid drops after my allergy eye drops, do yoga (10 minute morning stretch session) and then do the other eye drops after when I put my makeup on.

It has occurred to me that putting my makeup on after these drops may be a challenge if it stings so much I can’t see the mirror.  I guess I will find out in the morning.

So, here I am adding another immune therapy to my regimen that must be done in 12 hour intervals.  I already have daily timers for my other meds.  I guess I can double this one up also.

So, is this a sign of deterioration?  I really don’t know.  Considering my eyes are doing wonderful and they aren’t any where near the severity of others, I think it is just a flare up of my condition.  Then again, I am getting older.  mucus secretions naturally start to wane.  Also, I may have really needed this five years ago when I went to him with my first symptoms.  We both brushed it off as allergy eyes.  Guess, looking back now, it was just another symptom of a much deeper health issue.  Either way, the eye drops for allergies, the restasis and steroids are here to stay.  Some days are better than others.

Like today.  I had a good eye day today.  I only put fake tears in once at work.  Then again it rained last night.  Clean air has that effect on eyes.

Either way, I am at peace with this decision to add the eye drops.  This is just part of God’s story for me.

P.S.  The endocrinologist was pleased with my weight loss.  We discussed my B-12 treatment and maybe a future tweak for it.  Other than that, my labs look great and he was pleased with mental attitude and communication regarding my treatment plans.  He requested some special labs regarding me getting off of the prednisone and some kind of gene detection that will help determine further B-12 adjustments.