Hospital said they could use cyclosporin for DE

[stella]

I was at the corneal clinic at my local hospital - a large teaching hospital In fact the doc who saw me had a med student with him and was instructing her
To my very pleasant surprise i came away fairly satisfied -
After a wait of 2 hours ,which i did'nt mind and came prepared for (The place was packed with patients)
I saw a very nice fairly senior doc who knew all about the problems with restasis in this country .He also knew that a vetinary version was liscensed.He didnt enter into any discussion about the ethics or problems but said that cyclospoin WAS available to be used for dry eye, but did'nt elaborate
I have been much better this last couple of weeks so did not push
the cyclosporin
He did a schimer test - at least the nurse did -after that he called me back in and told me i had very dry eyes I never asked the score
I always thought it was just MGD but apparantly i am aqueous deficient too - although 6 months ago my optician said i had plenty of tears
I know schirmers is unreliable, and i have felt so good that i am not particulerly worried that i dont have tears I get plenty if i yawn!
He also stained and examined my eyes and said the tear film was intact which was good news ( last ophthalmologist said i had dry patches)
He said i should use my minims artificial tears regularly 3 or 4 X daily to maintain the integrity of the tear film whether or not i felt i need for them and use celluvisc at night I had been taking a minimalist approach - only using lubricants if i felt i needed
He told me to take the doxycillen when things got bad (in the form of vibramycin D at 25mgs) He said i did'nt have to restart it on a high dose again - just recommence at 25mgs
I told him i was on an andogen based HRT and thought it might be helping - He did not comment 'but when i said i thought Allegan were working on an andogen eye drop he said "Well you tell me next time i see you if its on the market yet"

Best of all - I am in the system now - They will review me in 6 months and he talked about plugs then and only after that would he consider cyclosporin(I have no idea what form it would take or how much )
All in all pretty satisfactory - Just thought i would let you know
Like everyone in GB on this site i was deeply unhappy about having no supervision or follow -up and resorting to self diagnosis and self treatment
I would advise everyone to ask to be referred to a" corneal clinic "
rather than a one off at an ophthalmologist
A corneal clinic is the nearest thing you will get to a dry eye clinic - It is not only patients with DE --,i was sitting next to a post -op cataract follow-up patient,and i am sure there are all kinds of eye conditions come under that catagory ,but it does include occular surface therefore DE

[bluebrit]

Stella - glad you are getting help now in UK

Hi - I too am a Brit currently living in NZ. We have the same problems with the medical profession here, lack of knowledge, limited availablity of medications etc compared to the US. I was cheered by your story and glad to know that you can get a reasonable standard of treatment and found someone knowledgable! I am shortly returning to the UK and have been dreading starting again with "professionals" who know less than I do about dry eyes, Sjogren's and other related conditions.

Good for you!

[brd888]

Questions

Stella,

Where did you get Vibramycin D at 25mgs?
Whats difference between Corneal clinic and bog-standard Eye Clinic?

Ta
Bruce

[stella]

Bruce
Did'nt get vibramycin D at 25mg
My GP perscribes it for me at 25mg and the local pharmacist gives me 100 mg tablets with instructions to disolve it in 100mls of water and take 25mls and discard the rest - I never do that - I just break it into quarters and take a quarter.Presumably the letter to my GP from the hospital will instruct her to continue my doxy (vib -D)at the same dose as i had been taking ,since i had found it helpful

The difference between a corneal clinic ,as i understand it ,and a regular eye clinic is that at a regular eye clinic they would see every type of eye problem ,wheras a corneal clinic indicates a more specialized clinic since the cornea is the front surface layer of the eye and would include of course cataract which broadly speaking is a clouding of the cornea(I'm not sure - i know very little about other eye problems)But it does include occular surface disorders like recurrent corneal ulcers and tear film disruption due to DE'cos i asked the nurse if they saw a lot of dry eyes and she said -lots

I think you would need to be referred to a large hospital ,or a hospital with a good eye dept
In my case the hospital i was referred to has a large eye dept that serves the whole of my area and i did research to find out which eye consultant /s were interested in occular surface .I was given a name and asked my GP to refer me .She did that ,and apparantly what happened was the letter was studied with lots of others and graded in severity and urgency of my condition
I was then informed that i had been referred to this "corneal clinic" and would hear in due course
I waited all summer and then got a letter to say that if i phoned appointments ,they could offer me an appiontment in the next few weeks
I am purposely not mentioning names (If you want names i will pm you)
Thats how i got into the system - and intend to stay in it to be supervised and monitored
My GP helped, in that she had said in her letter that i had researched my condition in detail and was worried about self-treating ,without supervision
The doc i saw seemed to understand that and appologized that i had to wait so long for an appointment - not his fault of course !I,m sure the hospital docs are as frustrated by the NHS as we are,and they realize it is anything but ideal to have to treat yourself
Hope you find this info helpful

[Helen26]

Hi Stella

Where abouts do you live in the UK? I live in Lancashire and my GP won't refer me to any hospital outside the area. The biggest hospital is Preston, which is where I've been going over the past 18 months and they are useless, and have now signed me off saying there is nothing else I can do to help.

I went to see a specialist in Newcastle a few weeks ago who was very good and said the same thing about how I should be under medical supervision and not self-medicating. He also said he would help me try to get the bottom of what's causing my problems. However, Newcastle is a 3 hour drive away and is not very convenient to keep going back to. There is a big eye hospital in Manchester where I work but I don't think my GP will refer me there.

Helen

[stella]

Hi Helen
I would stick with Newcastle if i were you
They sound quite helpful
I think i am right in saying that now in the health service you have a chioce and if you request your GP to send you to a hospital of your choice -especially if they have helped you and are willing to work with you to find solutions- He/she would be obliged to refer you, or you could complain.Are there more than one doc in the practice ? Try another who might be more helpful
Maybe i was just lucky , but i intend to politely insist that they keep reviewing me even if i feel i cant always get the help i need from them under the NHS
eg If i decided to go to Alacante and try Sazi's clinic for platelet rich plasma drops then i would ask if they were prepared to monitor me on the drops - even in the interests of pioneering a new treatment
I dont know how long this approach will work for me but i certainly intend to keep trying one step at a time
I think you have to plan carefully your approach to doctors to get the best from them
Gone are the days when the doctor just dictated your treatment and you obeyed without question acing as though you were an unintellegent idiot, and it was not your body they were making decisions about
Now-a days doctors work with you (or should) to problem solve
I can pm you name of my area and hospital - I prefer to do that in order to maintain annonimity
It's too bad we have to fight for everything and "work the system" It
hard enough coping with DE without all this tactical approach, but thats life - at least in the UK