Is taking multiple steroids safe?

[DebE13]

It's been five days now of wearing contact lenses to protect my eyeball from my inflamed eyelid. It's driving me nuts that I can't find the name of what the optometrist called it. It's not blephartist, iritis, or uveitis. I have to re examine my game plan now because I think he has found the problem with my eyes.

I've complained Of constant eye pain, light sensitivity, redness, itching, grittiness, burning for years now. I stopped wearing contact lenses out of sheer discomfort which was hard to do. I was treated by a less experienced optometrist when it first started and went through the dry eye protocol of lotemax, punctal plugs, eye drops, restasis, and declined the final treatment if oral steroids. At that time, I was told it was severe dry eye and there was nothing more that could be done if I refused the steroids.

Since that time, everything has continued and I was debating if I should get tested for sjogrens but from everything Ive read there still isn't much that can be done. I'm not sure if I want to spend the time or money for a dx with no cure. I have the dry mouth too and have the trial samples of biotene in the drawer. I haven't tried it since I don't like the idea of using more chemicals for another condition. I rarely go anywhere without my bottle if water. It's a hard call because I'm undecided to if I'm causing more problems by not using the products that are being offered to me.

Anyway, since I have numerous abrasions on my eyes caused by the bumps on my inner eyelid due to inflammation Ive actually been wearing contacts all day without problems for five days now and I find it quite amazing considering I could not tolerate them even for five minutes previously. I've had some minor issues with adjusting to the new prescription since it changed considerably and now I need bifocals or am pretty close to that point but we are focusing on the eye pain first. The contacts seem to be doing their job protecting my eye ball but what next?

I go for a follow up on Tuesday and will have to ask those questions. If I have chronic inflammation causing my eye issues do I continue wearing contacts to prevent the problem? How does the root question of treating the cause of the inflammation get addressed? I have a feeling that the oral steroids may be brought up again and I'm not sure how I feel about that. Since I'm already taking entocort is it a good idea to throw another steroid in the mix? I know the entocort stays in the gut but I have always had a hard time taking any pill- I just prefer not to. But then the next question is Do I like living with debilitating eye pain or not?

I should probably just wait until my appointment to find out my optometrist 's plan but so often it seems like each problem is treated separately and in actuality the CC, thyroid, and eye inflammation are all connected. It may or may not make a difference but all of the What Ifs keep circling through my mind. Any thoughts would be appreciated.

[tex]

Hi Deb,

If I recall correctly, you're only taking 3 mg of budesonide about every 3rd day, or am I wrong? A low rate such as that shouldn't have much effect on any additional concurrent corticosteroid treatment. A review of the research shows that from 9 to 21 % of budesonide is absorbed into the bloodstream, from Entocort EC capsules, depending on the individual, and on circumstances. That's not an insignificant amount by any means, but it's not a very large amount, either.

http://www.ncbi.nlm.nih.gov/pubmed/15355126#

Tex

[Gabes-Apg]

Deb,
Not sure that I have any advice or answers.

Pre mc dx, I had eye issues, that didn't respond to steroid treatment.
I was referred to a top guru immunologist, many blood tests and the like his conclusion to the ibs, fatigue, adrenal fatigue, joint pain, eye issue that won't heal was that I must have had contact with bat urine in a cave in Papua New Guinea...

With mc dx, finding this forum, and the various discussions and people that had similar issues, I know it was immune system/mc causing issues.

At that time, I was having regular acupuncture and taking supplements for adrenal fatigue. Based on what I know now, it was the treatments in reducing inflammation in my body, balancing the immune system and adrenals that helped me to get better..
The healing had to come from within type thing.

Given your post about the reaction to the blood draw, I would say that your body is very reactive right now...

Again i am sorry I don't have a solution or fix for the issue.
I know you have been through a lot this past 12 months. To have another issue to deal with is exhausting...

Anything you can do to minimise inflammation and calm the body is your best bet

Healing hugs xoxox

[DebE13]

Thanks for the info Tex. yes, you are correct. I started pushing it to every fifth day but I started getting more noises and grumbling so I went back to every third day. I'll just have to be patient and wait for the game plan and decide from there. It is a relief to have a reason. It's too bad it wasn't found two years ago but who knows, maybe the bumps weren't visible then. I have to use drops regularly throughout the day to keep the contacts comfortable pm which is a bit inconvenient, but the burning and grittiness I don't miss.
I found a sticker on the box stating they were trial lenses so I'm sure I'll cringe when I find out how much it will costs. The drops alone will run about $15/month but it all adds up.

Gabes, no need to be sorry. It's nice to hear others' experiences. It seem as my body is attacking more than my guts. I'm trying to figure the best approach to reduce the inflammation and look into adrenal issues. I see my endo in January and still plan to ask he allow T4 meds but if I have adrenal issues I may have problems finding success. I'm thinking I may have better luck approaching my PCP on that. At least get the saliva test. My temperature seems to be ok and the AM cortisol test was within range so I do t want to go looking for problems I do t have but would also like confirmation that I'm good on that end. I've had lots of and continued stress in just about every facet of my life and I don't see it changing so I'm trying to adopt alternate ways to deal with it. That alone makes wonder about adrenals and then add a not so short term prednisone use makes me want to have all my ducks in a row before I battle to improve my thyroid issues.

I take it you never got a clear answer on your eye issues and figured it out yourself. That must have been frustrating. Your trip in the cave sounds exciting, less the bat pee. smile:

[Gabes-Apg]

Deb
my body is also attacking other areas, so i empathise and understand how you are feeling. (and how tiring being in this maze can be)
i feel like that spinning plates thing you see at the circus, constant attention, and one thing always needs attention. you get one thing ticketyboo and 3 other things need attention.
for the past 2 years, every 4 -6 months something new 'crops up'

long story short, there is no perfect solution that will eliminate/minimise all the symptoms.
The approach i am taking is deal with the major/?serious issues, and be at peace with the rest. (does this make sense)
It is not giving in, moreso it is the path of least resistance and go with the flow a bit..
being at peace with things, means less anxiety and stress. (one of my major MC triggers)

Also, take it a step at a time give your body time to recover from each event, and to heal and benefit from any meds/treatments you are having. the gift of patience and time is a beautiful thing you can do for your body.

the MC dx answered most of health issues that had occurred up to that point..
even now the health system and various professionals are not able to see and accept that things like MC cause whole of body issues.
I dont have the spare energy to convince/education them on what we (mc'ers) know to be the truth...
i will listen to their suggestions, and then via research and support of knowledgeable people of this forum, make informed decisions on how i want to approach any treatments, medications etc.


The caves in PNG were exciting, they were dug by the japanese during wwII they were quite large (you could fit a small truck in them)
they managed to dig about 8 of them, they were 1-3 kilometres long, and they all met up into a HUGE supply store, and hospital etc etc. There were thousands of japanese operating out of the caves. their supply ships would come into the bay during the nights, and they would do the supply transfer. in daylight, there was no evidence of them existing, so the USA and Aus planes had no idea they existed

[DebE13]

Gabes, I love your approach and it makes perfect sense!

I'm trying to become more like you and attempt some sort of peace with my own self. I've noticed my own pattern of going against the flow of everything. Sometimes it's good but often, at the more personal level, it's counterproductive.

Everything you've said rings true. The spinning plates analogy made me chuckle. That's exactly what it feels like.

It's a scary thing to realize that against all best efforts there are some things we cannot control. It makes it twice as hard when my own personality interferes because I like to be in control of everything. It must be a major life lesson of mine because not only do I have to learn to accept my own limitations but those of my son. There is very little I can do for his liver issues but sit on the sidelines and wait. He is more like you and is more accepting of what he cannot change. I am thankful for the many role models I have, here and at home.

Your trip sounds fascinating.

[Gabes-Apg]

Deb,
I am approaching my four year anniversary of MC Dx.

it took me the first two / three years or more to transition to my go with the flow mode, (former perfectionist, multi-tasking control freak, fiercly independant!!)

put my energies into the things i can change/improve, be at peace with what is, and mindfullness living in the moment...
the mental/emotional side is just as important as any other treatment/medication.

[Gabes-Apg]

Deb
hope you are feeling ok

one thing I thought i would mention, in relation to peace with what is, acceptance, putting energies into the things you can change etc,
Like any activity, music, sport, art. it takes practise over time to be good at it and for it to become a trusted foundation of your life,
to quote ant - softly softly catchee monkey...

[DebE13]

Thanks Gabes, patience has never come easy for me but I am learning. life is sure is full of twists and turns. I never imagined life would be quite like this but it must be for a reason.