Dry Eye Patient
I've been prescribed prednisolone eye drops after a couple of months of milder steroids (FML) failed to reduce the inflammation etc significantly.
I am wondering how many others have been prescribed prednisolone drops and for what purpose? As I feel that the eye docs are not giving me any information. I also wonder why I am being given these strong steroid drops for something that I was previously told was a "trivial" issue of just bleph/dry eye.
Family member, friend or advocate
LM was given Prednisolone 0.5% preservative free Minims three times daily for 3 weeks. This doc (consultant no.2) was a kind man, old-fashioned, but I wish he'd said at the time he didn't know the cause of inflammation then we could've moved on sooner. It was actually undiagnosed and untreated MGD. Prednisolone controlled inflammation, cured nothing of course. He said he was hoping it would go away.
Now we use FML long-term on the basis absorption is least due to fluoride base, hoping to avoid ... future problems. This does control inflammation until we can improve the MGD with antibacterials + warm compress, then we taper.
Do your hospital eye docs know what the cause of the inflammation is? Can you get copies of diagnosis letters they are sending to your GP? Requesting these was a revelation. I realised consultant 2 didn't have a diagnosis, hadn't told me; also mammoth misdiagnosis from consultant 1. Also, in UK NHS policy, we have the right to see eye clinic notes, and some hospitals supply copies through Medical Records department, some we have to go through Medico-Legal. Maybe check your Aus health service rights. Also, we have Patient Liaison Service - as always, depends who you get! Sometimes diplomatic, warm, helpful, wonderful... sometimes, er, not.
Paediatric ocular rosacea ~ primum non nocere
Dry Eye Patient
Unfortunate that most docs just don't know how to treat or where to start with most patients. If you are unlucky, they will try just about everything on you until you are fed up.
The issue with anti inflammatory or immunosuppressant meds is they just don't do a thing to treat the underlying cause(s) of the inflammation. Still this is the system as it stands today: symptomatic relief only, and half the time it just doesn't work.
Poppy, have you had a hormone panel done re Estrogen, Progesterone and Testosterone done? Highly recommended. They real key though is adequate interpretation of the results to know what is in balance or not and the best way to treat for the individual.
Jamie
Family member, friend or advocate
Poppy: I've been thinking about you overnight. You are in ACT, in the care of your local big hospital ophth dept surface disease consultant, yet they are tetchy, stumped and you have difficulty getting follow-up? Inflammation is not responding to FML and they are trying Prednisolone? They are thinking about calling it ocular rosacea but vague on diagnosis, not able to suggest a regime to spiral you back to comfort?
Is there any chance you could access inflammation teams in public hospitals in Sydney or Melbourne for 'second' opinion? If you were in the UK you should be in tertiary referral for a look. Could be worth it, a bit of an adventure. I know geography is a challenge. Local teaching hospital should continue follow-up, GP could re-refer if you lost it.
Last edited by littlemermaid; 09-Jul-2011 at 02:07.
Paediatric ocular rosacea ~ primum non nocere
Dry Eye Patient
Thanks for all your replies, yes littlemermaid I am in ACT and going to the public hospital external eye disease clinic there. And yes I have been given two months of 4x a day pred after 2 months of FML didn't do much.
I could potentially go to Sydney or Melbourne but as I'm a contractor the additional loss of income would hit me hard. I would do it in a heartbeat if I knew they would help me but I've just lost so much faith in doctors.
What I wonder so much about is why we are repeatadly told that our condition is medically so minor, and really doesn't require ongoing care, etc etc, everything you read on the internet tells us that bleph/dry eye is non-serious, the docs tell us it can't harm our vision and yet at the same time... they are giving us strong steriods. Why the need for strong steriods if there isn't a real problem in the first place.
Dry Eye Patient
I haven't been able to get copies of the letters (I don't think we have the right here in Oz) but I've been able to get some idea of what the previous eye docs have written eg:Can you get copies of diagnosis letters they are sending to your GP?
"This patient should try artificial tears".
"No eye doctor in the world can do anything for this patient apart from suggesting artificial tears and lid hygiene. Do not bother me with this patient again."
Not surprisingly, I no longer give my GPs details to eye doctors. All their letters do is to biase the GP against giving me future referrals or trying to help me in any way.
Family member, friend or advocate
Hi, yes. Any doc who's trying to help, I love. It's the rejection and tetchiness that hurts. Your experience and aetiology sounds similar to LM. Now I've got medical sympathy and backup from an external disease consultant I like in follow-up, even though not entirely current, we just have to pursue what we need elsewhere. A confused GP is useful, you can get referrals easier.
Prednisolone 4x daily is a big dose. What's the plan here?
Chronic untreated bleph is not minor, it does require on-going hospital care esp with inflammation and pain, certainly paediatric it is sight-threatening. Upping the steroid to Prednisolone suggests they're not controlling surface inflammation effectively, whatever bleph treatment they're trying (is it bleph?). You haven't been happy with these dudes for a while, have you? Are they current on research and treatments...? I know it's difficult. We must have seen 15+ before I stuck. If it's bleph/rosacea, you are looking for help with a spiral of improvement - lid margins, surface, thus tears and tear film.
Any chance of seeing the surface disease consultant in private practice to find out what he's thinking, or an inflammation specialist eg uveitis, rather than just the lower ranks in follow-up each time? May clarify your choices.
Last edited by littlemermaid; 09-Jul-2011 at 06:43.
Paediatric ocular rosacea ~ primum non nocere
Dry Eye Patient
I strongly suspect the "plan" is to improve my eyes to the point where they can dump me. In fact I actually feel like I don't want the pred to help too much because I'll get dumped and my eyes simply left to get really bad again.Originally Posted by littlemermaid
I've been variously told; bleph, dry eye, rosacea, incomplete eye lid closure. So really, it could be absolutely anything. I'm trying doxy as well as the steroids and it doesn't appear to be helping (my eyes go downhill as soon as I reduce the steroids to 2x a day regardless of the doxy).
Family member, friend or advocate
poppy: Have you seen normal meibom? (2 fingers, gently press upwards under lower lash line, examine tiny dots on lid line) Anyone told you what they think about tear film? Any cornea surface damage?
Can you network with Oz members like SimpsonDesert to find a recommended specialist doc or hospital service? I understand the approach described here, where the experienced doc helps us to a spiral of improvement using the methods we already know. Here is the skill. This was lacking for us locally and I didn't realise at first because the docs were not honest that they didn't know what it was or what to do. http://www.dryeyezone.com/talk/showt...dney#post62776
The other thing that worked for us on finding skilfull specialist ophth was to write short letter/email to senior ophth elsewhere for advice to ask who they thought was the best person to help or 'second opinion', describing worst of suffering and short summary of symptoms, calling it 'unresolved'.
Last edited by littlemermaid; 10-Jul-2011 at 17:16.
Paediatric ocular rosacea ~ primum non nocere
Dry Eye Patient
I'm currently using Prednisolone drops 4 x daily for a granuloma that formed on my eyelid due to a stent placement (read about my procedure in the 'plug' threads). However, I am suspicious if it was the steroid ointment I had to use back in 2007 after DCR surgery that has caused my left eye to be so sensitive and in ongoing pain. Steroid drops can cause thinning of the cornea and conjunctiva...it's one of the side effects!!!
Family member, friend or advocate
Steroid drops/ointment: BAK preservative in ointment changes the surface (Pub Med - Baodouin), reduces the tearing response, changes osmosis through cornea. Steroids also thin skin around eyes so Mermaid washes it off with warm water cotton wool, also closes puncta 15 seconds so doesn't drain down tear ducts into sinuses.
Hope it's going well DCRdryeye, hopefully you can taper soon?
US Food and Drug Administration, Daily Med - current medical information on marketed drugs: Fluorometholone ophthalmic ointment. Fluorometholone is not so readily absorbed into the eye because of fluoride base 'practically insoluble in water', therefore side effects reduced Fluorometholone monograph.
Poppy: 'Corticosteroids are not effective in ... Sjögren's keratoconjunctivitis.' Pred Mild ophth suspension They are so sure it's MGD rather than Sjogren's?
See the difference in skill: one doc blitzes Mermaid's eyes with 3/day Prednisolone plus Maxitrol hoping it would all go away (er, no). Another successfully tapers to 3/week FML by treating her MGD effectively with oral antibiotics and antibacterial topicals, and warm compresses, humidifiers, goggles etc.
Last edited by littlemermaid; 07-Aug-2011 at 14:29.
Paediatric ocular rosacea ~ primum non nocere
Dry Eye Patient
i was prescribe pred forte after my lasik surgery.
IT helps ALOT with inflammation and redness which was my main problem.
when i stopped it after a week the redness and inflammation came back.
now i dont know if it is because of the lasik, but i freaked out.
he says he doesnt want me to keep using pred forte because its just a potent steroid and could ruin my eyes in the long run.
so right now he has me on restasis and Flarex.
the restasis stings and burns and makes my eyes red....
the flarex seems to help a bit, but not as much as the pred forte..i wish i could use pred forte forever...
Dry Eye Patient
You can refrigerate the restasis and it can help with the burning.
Also, if you are on prednisone make sure you eat yogurt or take a probiotic.
Dry Eye Patient
i'll try to refergerate it and see how that goes....
but today i ralized it might be the flarex i use after restasis that is causing the stinging and burning...
so tomorrow i will try to not use flarex at all.
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