#32 WAS IT RASH TO TRY STEROIDS?

Anytime I didn’t feel well, my eyes were affected. But I stayed as positive as I could.

A week after my eyes were feeling better, I developed an outbreak of hives. I was itching and miserable. Anytime I didn’t feel well, my eyes were affected. But I stayed as positive as I could.

Gradually the itchy welts subsided. The Manuka honey eye drops named Optimel arrived and only a few drops irritated my eyes. I stopped after two days.

At this point, I offered the expensive Manuka drops to anyone interested in trying them in my dry eye support group. I also offered several boxes of artificial tears and eyelid wipes. I shipped them off to two different people and received effusive thank you messages. It felt good to help others by sharing something I wasn’t going to use. I didn’t accept any money for postage.

My eyes were still better doing less. I didn’t miss compresses or eyelid wipes. Sometimes I longed for an artificial tear to wet my eyes. But I knew that it wouldn’t help at all and would make my irritation worse.

The sample bottles with steroids were eventually all used up. The Alrex and Lotemax had little effect, unlike the Durezol. I was on a new path of doing nothing for my eyes. It wasn’t perfect, but far improved.

I was worried that my eye pressure might have increased. The soonest appointment for me to see my ophthalmologist was in 3 months. I decided to go see an optometrist. I’d be able to check my eye prescription and find out my eye pressure at the same time. Another idea I had, was to try soft contact lenses.

The optometrist was friendly and my eye pressure was not any higher. My eye prescription had changed again so I ordered two new pairs of glasses.

Adjusting to soft contact lenses was more challenging than I expected. I had worn hard lenses until my cataract surgery – for almost forty years.

The soft lenses weren’t painful, but putting them in and taking them out was stressful and required a lot of patience. The problem was the prescription didn’t work well for me. I couldn’t seem to adjust to powerful vision in the distance and blurriness up to five feet in front of me. The optometrist gave me many samples to try (I’m still trying.)

Three months later, I finally saw my regular dry eye doctor. I asked her for the one steroid drop that had helped me, Durezol. It was not available through my HMO, so she prescribed something else and said it was almost the same thing, Prednisolone Acetate.

After two days using the Prednisolone, my eyes didn’t feel better at all. I experienced tunnel vision. And then I broke out in a rash like I had three months earlier. Was it possible a steroid eye drop could cause this? It seemed so unlikely, but at the same time it was very coincidental.

Don't scratch

I looked into side effects for Prednisolone and didn’t see anything about a rash – it seemed pretty far-fetched, but tunnel vision turned out to be a possible side effect.

And Prednisolone had an irritating preservative in it, one that Durezol didn’t have. I called my doctor and she was willing to prescribe Durezol. I was happy until I was told it would cost $140 for that bottle. I let my doctor know the cost and she said I wouldn’t have to pay that thankfully – my HMO would cover it with an exemption.

I used it sparingly and decided to stop when I made the connection to having the rash. It took a few days for me to realize the coincidence.

It was so frustrating. I was scratching my welts and wishing I could use the Durezol to help my eyes feel better. I didn’t want to use it until the rash was gone. I was also eating too much. It helped me cope in many ways but depressed me even further.

I contacted my regular doctor and asked if he could order blood tests to see if anything was wrong with me. The tests all came back negative; my doctor told me everything was ok.

I sure didn’t feel okay and wondered what to do next.

© Judy Unger and http://dryeyediaries@wordpress.com 2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Judy Unger with appropriate and specific direction to the original content.

#31 LESS IS MORE

I was so thrilled that my eyes weren’t aggravating me throughout the day. I wanted to shout out with elation, “I am cured!!!”

The relief that I felt after my appointment with a new eye specialist surprised me. I had low expectations and little hope. I had only made this appointment because my cousin pushed me. I had called her and cried when she asked me how my eyes were. She insisted her doctor could help me. My cousin’s eye doctor was far away and referred me to this new one.

Initially, I was a little anxious to use steroid eye drops that the new doctor gave me. In the past, one caused a bad reaction. Plus, an eye doctor I had seen a year earlier suspected that I had Glaucoma. I hoped I wasn’t doing anything risky since steroid drops could increase eye pressure. But I trusted this new doctor and planned to follow up having my pressures checked. The soonest appointment with my regular HMO eye specialist was in three months, unfortunately.

Until then, I was so thrilled that my eyes weren’t aggravating me throughout the day. I wanted to shout out with elation, “I am cured!!!” Unfortunately, it wasn’t like that. I was aware of them still, even though they were so much better overall.

I let the new doctor know that I had found improvement. Of the three steroid samples he gave me, only one really helped. It was called “Durezol.” The other two were Lotemax and Alrex.

He told me that Durezol was the strongest and that his suspicions were confirmed. I did indeed have an allergy. I asked him, “How do I know what I’m allergic to?” His response was that I was the best judge of that.

When the Durezol bottle ran out, I had a few bad days. I was discouraged but not hopeless anymore. I emailed the doctor to update him and to ask him for advice on what to do next, but he didn’t reply.

I longed for artificial tears but avoided them. I still continued to use Restasis but noticed that with the momentary relief of any eye drop (including Restasis), within a short time my eyes began to burn and hurt. The eyelid wipes that I had relied on were actually one of the worst irritants for my eyes.

Eventually, I called and reached the doctor a week later. I told him my suspicions – I was allergic to the wipes and all eye drops. I asked him what to use to wipe my eyes instead and he recommended baby shampoo. I tried his recommendation of Clariton, but wasn’t really sure if it made a difference or not. On days where my eyelids felt more inflamed, I took Clariton.

I began to learn that there was a difference between my dry eye pain and eyelid pain. The dry eye pain was something I felt every morning when I woke up. I had stopped using gel at night because I realized that the gel also affected my eyelids. Thankfully, with blinking my morning dry eye pain went away.

It was the eyelid pain that really drove me crazy. I felt sensations in my eyes, burning and heaviness – almost like I had stickers on my eyelashes.

I can tell that my eyes are feeling better because I am able to open them more.
I can tell that my eyes are feeling better because I am able to open them more.

This was definitely a twist for me after feeling hopeless. For over a year, I had given up on finding a doctor or remedy that would save me. But really, I was seeking answers and trying things again – so I had saved myself!

And this was definitely an example of “less is more,” a concept that fits into so many areas of my life.

It turns out that my friend Carol also realized the same thing about her regimen, which I shared on my last post. Her eyes were feeling better as a result of doing less. It was so ironic that we both reached the same conclusion around the same time. Sadly for Carol, the revelation of this came after being hospitalized. She had had a bad reaction to medication that was life threatening. How upsetting is was that trusting a doctor and medication could end up being risky instead of helpful.

The paleo diet I had adopted for three months hadn’t made a significant difference, but at least it hadn’t harmed me at all. Much of it was healthier. I eased back into a less restricted diet, but still avoided coffee and artificial sweeteners on a regular basis. So many of the remedies I had tried had hurt my eyes. Now it made sense. My eyelids were so sensitive and affected by every remedy I’d tried.

I had another one in my back pocket, though. I had ordered Optimel eye drops and they were coming from Australia. They were made from Manuka honey and I was willing to try them.

It was a great thing for me to have hope again!

© Judy Unger and http://dryeyediaries@wordpress.com 2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Judy Unger with appropriate and specific direction to the original content.

%d bloggers like this: