medication supply

[BlueEyedGirl]

Hello,
I have been diagnosed with HLA B27 few years ago and I have recurrent anterior uveitis every year. The last one was quite intensive and the doctor decided to give me a different drops, saying that they are very strong, but not based on dexamethasone. some Forte was in their name. When I was nearly finishing the course of treatment, the inflammation came back to the same eye. I was in the Moorfields hospital in London yesterday again and the medication they gave me made me a bit unhappy. Until today I used to get the bottles with drops to be used until they were finished or the treatment was at the end. Yesterday they supplied me with a box of disposable single use units with dexamethasone and some Celluvisc, also in single doses. Is this a normal practice? I guess that this form of supply is for the clinics and hospitals, when they are given to different patients individually to prevent the contamination, instead of using the same bottle of eye drops for the whole department. Also their expiry date is just several months ahead. And if used just one unit only once, they will not last for the remaining time of the extended course of treatment. They did not give me enough of it and, as a mature student, I am on a tight budget to go and get the medication again and again and paying for the prescription every single time. During the last month I paid almost £50 for just the prescriptions and that is not the end of my medical expenses today.
This appears to me that they just needed to get rid of the stock before the expiry date, a sort of economy management of the hospital, as I attended the A&E and they supplied me directly. What about MY economy management?
Is this practice normal? that is my question.

[BlueEyedGirl]

In addition, I have noticed that the hospital does not call the patients for the check up after the treatment has finished. In the past I used to go there after about 7-8 weeks. This does not happen anymore. I guess this is another money-saving maneuvre. Nobody will check the eye pressure after about 8 weeks of treatment (in my case now). Instead, I was told by a doctor with quite a strong Russian or so accent, that I can have the eye pressure checked at the optitian. This made me sure that they are not going to see me again until I get another inflammation.
Is this normal?

[Mike Bartolatz]

you are in london, contact professor ayliffe for your care. he is an ocular immunologist and can help you get off the steroid rollercoaster before it causes cataracts and possibly glaucoma to occur. you have HLA B27 related uveitis and this responds very well to NSAID therapy taken at prescription strength for about 2 years. much cheaper than topical eyedrops to say the least.
the single use vials have no preservative in them which can cause ocular allergy. it sounds like you may have severe dry eyes along with the uveitis since they gave you lubricating eyedrops.

contact information for Professor Ayliffe can be found at http://www.uveitis.org in the PATIENT information section of the site on the INTERNATIONAL specialist list.

Wishing you the very best,
Mike

[BlueEyedGirl]

Hi MIke,

thanks for the reply. The non presence of preservatives can explain this...
Btw. I had already met Dr. Ailiffe few years ago. About 15 minutes session cost me £80 and I think he had mercy with me, otherwise the price would be much higher. This is not the route for me in my current situation.
I have been to my GP yesterday as well and got a month supply of NSAIDS with Omeprazole, too. I also have lower back problem, with previous sacroiliitis condition, if I did not mention it previously. I asked the doctor to prescribe those to me as I believed that they may help to reduce the uveitis, as well. also: those NSAIDS also have their side effect and during my arthritis treatment i developed gastritis, as the silly GP (different that time, or was it the rheumatologist responsibility?) did not prescribe the Omeprasole to me during the 1 year of treatment. I actually had to do my own research when I got problem with my stomach and then go to the GP and ask for the proton pump inhibitor by myself.

The lubicating drops here - are they too different from what I can get in normal shops for dry eyes?

[Mike Bartolatz]

I think that celluvisc can be purchased OTC in England. I am in the USA so I can't speak to many things there.
80 pounds is pretty cheap for a doctors appointment. here in the USA it would be over 250 dollars just for the visit without insurance.

severe dry eyes is very problematic and you have to keep the eye well lubricated or it can lead to cornea problems as well as damage to the sclera. my eyes would stick to my eyelids at night without lubricating gel type eyedrops. I use regular lubricating eyedrops during the day to keep my eyes hydrated because the gel type cause blur of vision.
I also have plugs implanted into the drains of my eyes. these are called, punctal plugs. the puncta are drains in your eyes that lead to the sinuses and then down your throat. when instilling eyedrops, one presses in over the inside corner of the eye to 'oclude the punctum' thus the eyedrops are absorbed by the eye and surrounding tissues rather than 'going down the drain' and causing that terrible after taste you get with steroid eyedrops.
they also make an eyedrop called Restasis that might help get your lacrimal glands producing fluid once again. it is expensive however.

make sure you get liver enzymes and kidney function tested while on NSAIDS. they can cause kidney failure and heart disease too in some individuals.

wish you the best,
Mike

[BlueEyedGirl]

Hi Mike,
one by one: I will look for the drops OTC then (funny how people like using these abbreviations and one has to figure out what it actually means. one with little English skills would wonder what it represents

To me, as a full-time student, £80 is still a lot with scarce job opportunities around here today. I have to find cheaper ways to get to the right destination if I do not want to join the army of debtors with financial difficulties.
I have just had the overall health check up. I consider my lifestyle and diet healthy (future nutritionist) and the blood tests were excellent so far, though they may not have tested those enzymes specifically. Without the B27 I would be a happy and healthy individual. And this course will be just for a month, the doctor said that it is a policy not to prescribe the medication to me for any longer (a rheumatologist could do so) and also they did not give me diclofenac this time because of the heart problems in 1 in 1000 people after that. I sometimes experience something like a momentary fibrillation, but the ECG did not show anything in the past.

Regarding to the dry eyes, I think my condition is not that severe as yours, though I have experienced tired and dry eyes here and there. But after reading your message I will have to be more disciplined and moisturize them more often. I thought I was deficient in vitamin A, but generally my immunity is OK and I have a balanced diet. I just dont like to put anything into my eyes, which is also a reason I am not using contact lenses. And I never understood how people can manage to keep their eyes open under the water.

[Mike Bartolatz]

Sorry I used the abbreviations for Over the counter, OTC, and Non Steroidal Anti Inflammatory Drugs, NSAIDs. I've been doing this so long and type to many individuals whom are not at this site many times in any given day. I assume most people understand what I am saying to them when I use abbreviations.

the steroid eyedrops can lead to complications as can any form of corticosteroid and this is why the ophthalmologist limits their use to short periods of time if at all possible. their potential to cause problems is cumulative, each drop adding to the last in their potential to cause problems such as cataract formation and Glaucoma. there are often no symptoms until one day you start having spots of missing peripheral vision when glaucoma is present. cataract surgery may also be more difficult in an Uveitis patient with success rate of about 85 VS 95 percnet in the general population.

monitoring of every drug is required to make sure that they don't become toxic no matter what the source. even some common over the counter remedies can be problematic systemically and can interact negatively with prescription medications.

although monitary considerations go hand in hand with every treatment decision, some are relatively cheap compared to the potential for serious vision loss without adequate treatment to help prevent many of the complications to this disease. Over the past 14 years that I have been doing online support work, I've seen several people say that they wish they had taken this more seriously as not treating with something as simple as lubricatng eye drop therapy lead them to cornea problems from Severe dry eyes resulting in need for cornea transplant. Had they used Restasis to get the lacrimal gland producing some fluid this might have been prevented or implantation of punctal plugs to help keep fluid on their eyes longer before evaporating.

I was never offered therapy other than corticosteroids and I paid the price with complications to them as well as under treatment of what I now know was inflammation throughout my eyes. I might not have progressed this far had Disease Modifying Anti Rheumatic drugs such as Methotrexate been used to treat me. it would have been relatively cheap in the scheme of things when one considers the loss of vision that I now have.

wishing you the very best,
mike