Asthma and serum drops

[kakinda]

conservation issue/ how to get the serum

Hello,

in particular those you in the UK or Western Europe...

You could get autologuos in France so it's a bit closer (particularly if you live in the london area). The proximty issue is crucial (at least in France but I i imagine it's the same elsewhere... so that US may not be very convenient - see bellow why).

1. It wouldn't make sense to add nocive preservatives to the serum but that means that its conservation period is very limited in a regular fridge.

2. I talked to the pharmacist preparing the serum for the main hospital in Paris doing it. It takes one full day to do it, so besides giving one's blood you would have to wait several hours to get it done. From that they prepare 10 bottles - each bottle last about a week - that you would have to put in a fridge (or in a frozen bag right away until you find a fridge) and you may keep it a week.
You would then need to come to Paris and get all the other doses each week because you cannot keep them in a regular fridge (you would need very low temperatures for that)... and give your blood every 2 months and a half.

So it sounds very complicated from a logistical point of view...and expensive. But all dry eye sufferers are millionaires, it's a well known fact... otherwise how would we treat ourselves, right?

oh, and regarding the initial questions asthma vs serum. It is an interesting one. I recently asked the same pharmacist about the risk for allergic persons (so that would include asthmatics i guess) of having high levels of histamine in the blood and so probably in the serum... she thinks that the impact of histamine wouldn't that important but she admitted that no-one knows for sure...
so this is an interesting lead for the reserarch on this type of serum

Bon courage,
Kakinda

[sazy123]

Hiya,

I did email back about this topic..so theres noway of getting a supply for more than a week? Anyone else that uses it- How long do you keep it for, before going back for another supply???

I wouldn't mind going over to france once in a while coz i actually live on the south coast, so i would just get a ferry, not that far..but i dont know about once a week..i suppose people go on business trips for less! so i wouldnt rule it out if it was an option, at least its an option, better than having no options!!

Do you know if doctors in france would perscribe this to a foreign national? what is the process of getting it? cheers x

[kakinda]

Hello,

unless you're case is severe (constant erosions or ulcers) it may not be worth the effort... but keep it in mind as an option. I believe you could get a treatment in France. especially since you are a EU citizen (there's even a form for that E111 i believe) , but they'll probably ask you to try restasis or cyclosporine drops first... Autologuos serum drops carry important infection risks not to be taken lightly... so don't try to keep your bottles longer than your docs tell you.

I don't think they could send you the drops by mail (not sure though)... but as long as you come to France to get the drops I don't see why not.

Kakinda

[dianat]

I don't have erosions or ulcers and feel my serum drops are really helping me with post-LASIK dry eye.

[SusieD]

This is the really frustrating thing - it appears most docs here will not even consider it unless you have severe problems with your corneas - and then it is likely it would be done under hospital supervision - due to infection risk I was told.

But as you say Diana - you dont have to meet this criteria to get them, you have been using them for a while and I know infections are a risk you have to be aware of - Im sure you can minimise this by only diluting what you are going to use that day and making sure the bottle is not contaminated in any way. I realise there is still a risk even then. However you are living proof that it can work and can provide a good deal of benefit/relief.

Im not giving up yet - but I think I have a real fight on my hands. Also, when you're talking about the National Health Service, they have to justify the costs, which is why they seem to reserve this treatment for very severe cases only. My argument is that its a quality of life issue - which should justify at least trying it. When my Dermatologist felt that the large painful cysts I was getting were affecting my quality of life and causing me to become depressed - he had no reservations refering me for accutane.........

[SusieD]

This is the really frustrating thing - it appears most docs here will not even consider it unless you have severe problems with your corneas - and then it is likely it would be done under hospital supervision - due to infection risk I was told.

But as you say Diana - you dont have to meet this criteria to get them, you have been using them for a while and I know infections are a risk you have to be aware of - Im sure you can minimise this by only defrosting what you are going to use that day and making sure the bottle is not contaminated in any way. I realise there is still a risk even then. However you are living proof that it can work and can provide a good deal of benefit/relief.

Im not giving up yet - but I think I have a real fight on my hands. Also, when you're talking about the National Health Service, they have to justify the costs, which is why they seem to reserve this treatment for very severe cases only. My argument is that its a quality of life issue - which should justify this being an option at least.

[sazy123]

Hi

I know, it seems to me that if you have moderate dry eye or your eyes are not in the worst state (ulcers etc) you are in the worst postion in terms of getting treatments (over here anyway), if your eyes are miid you could probaly get along using artificial tears alone or punctual plugs, and if they are severe then you might be given clorosporine or serum drops. But if they are moderate or severe-with not many signs then you can just about forget being given anything that will help. Even though having moderate dry eye is enough to ruin your life!

I wouldnt say that my sinus pain is as severe as it could be, but it is certainatly effecting my life and is still bad, and i have been given the option of having surgery if anbiotics or this nose spray doesn't work after a couple of months..They dont just say 'oh no your sinuses arn't severe enough we can't do anything else' because i think they can comprehend the pain of sinus headaches better, they dont understand dry eye pain!

I understand theres risks to serum blood eye drops 'like infection' but there is risks to anti depressants and acctune, which caused this dry eye that we weren't even told about! And surely the risks from these drops is made worse because they are generally used on severe states, but they can't quantify the risk if they never give it to people who have less severe eyes-who have more protection surely..

[SusieD]

I agree 100%

I was not told about severe eye problems when taking accutane - and even on the patient leaflet it said 'dry eyes' may be a side effect but said nothing about it persisting months after treatment. I would never have gone on it in a million years If I had known how horrible my eyes were going to feel.

My dermatologist still doesnt believe that accutane was the sole cause of my dry eyes!

Sazy - did you have the sinus pain before the dry eyes? Im just wondering because if the sinus problems presented first, then maybe thats causing your dry eyes and treating that problem may help with your eye symptoms also?

[sazy123]

Dry eyes weren't even listed as a side effect on the anti depressants! and my doctor said 'no they didnt effect the eyes', so was shocked when he had to eat his words when i came back with dry eye in a worse state mentally and physically than i was before, for me antidepressants had the opposite effect 'made me more depressed!' i should have gone with my hunch- but i didnt realise things like this could happen, all the other side effects listed were tempory like insomnia etc which went away when you came of them..never envisioned that a side effect could last this long! If id known that this would happen i would never have gone on them either (in heinsight), when i used to wake up, id be like oh its only a bad dream, now i wake up and its reality!

I started getting sinus problems the same year as i noticed my eyes dry so i couldnt wear contacts. So i had it before the bad dry eye, but dont know if its a cause. but there is a pattern with the two now, so i am trying to treat that as well now, plus it got worse lately..

susie did you speak to ur doc about clyosporine in the end?

[kakinda]

severe vs milder cases: same struggle

Hello,

first all i think we all deserve a cure or better treatments at least...

but i can't let you say that you are in a worst position to get treatment.
I have had severe dry eyes for 11 years and i was told twice or thrice that i would loose my left eye to an ulcer and there was nothing they (ophthalmologist) could do. Somehow that eye recovered so far...

As of today, there aren't any satisfactory treatments for corneal wound healing available (except for some possible dangerous growth factors until these are not reproduced synthetically).

So there worst positions you can be in... by no means I'm saying you should be happy about your dry eye problem but don't fool yourself... sometimes we do get new and fancy treatment but because there is no other choice to save our sight... not because there are no risks associated to the treatment.

With moderate dry eye without ulcerations you are not at risk of losing your sight so maybe you do have the advantage of time to consider the appropriate course of action. Which should be Primo non nocere... first do no harm.

I am not saying you shouldn't get autologous serum in the end... but i said it before and I'm going to say this one more time: you should try cyclo because it carries no risk if used properly. Some people get results in a few weeks... not always after six months ... but still rather try something without any danger for six months rather than immediatly take a risk.

There are serious risks of infections with serum drops... this is why I (a severe case) agree with my doc not to use the serum unless for ulcerations episodes.

To put it bluntly one may get an infection due to the serum, such an infection can provoke an ulcer that could lead to losing an eye. This is the possible side effect this time...

may i recall that you were once told (most people here were): no lasik has no other consequences than give you an excellent sight, or take accutane it'll solve your acne without any trouble, or take your antidepressant pills... all without risks.

Well, this time docs are telling there are risks... don't you see a pattern there (sometimes patterns appear the other way round : a+b= C or b+a=c)... consider the result (c) is all you have to worry about.

In this case, I was luckyer... i really had no other choice than undergo my operation to keep on living despite the possible consequences (no regrets then). I wear sclerals (not a choice, i have to) and I'm told the risks are greater with the serum in the long run.

So you do deserve a treatment that's safe (as much as possible) so believe me try cyclo first (anyway, very few docs will give serum as a first option because of what is written above) and whatever they may offer and in the end if you don't get any satisfactory treatment then consider autologous serum. Remember some individuals are more prone to infections that others... that's an element you can't control.

I believe this to be a friendly advice... common sens i you will... let's hope docs will someday produce growth factors or serum-like products with no risks.
Until then... consider the risks and don't let your desperation (which is only natural) take the wrong decision - in this case priority- for you. Do it step by step...

again, we all deserve better care... including possibly serum drops with the minimal risk possible... if the serum is right for you without any risk then that's what i wish you to get.... id do wish i could know for sure!

take care, and do play safe (including keeping your bottles, vials and fridge at the right temperature...).
Kakinda

[sazy123]

Hi kalinda, i take your point, and now i will understand more when the eye doctor says i can't have serum drops..which probally is going to happen like you said, but when i say in the worst position (i know im not in the worst state-and am thankfull for that, if this hadnt happened now, i mite of had lasik then i would have been) i mean being given treatments, today at this moment in time when there are better treatments out there, in the UK, and i dont just mean serum drops which granted i obviously didnt know about the risk of infection like you just described becuase the info out there about them is some what limmited, but i can see that differently now, i surely wouldnt want to risk anything else happing to my eyes, i also mean clyoprsporine and other things which ive been trying to get hold of for one year now and if i had more objective signs i might have had more success, but we know these signs and symptoms dont always correlate. I can only imagine what it was like 11 years ago having severe dry eye-must of been soo awfull.. Now its just the frustration of knowing something is out there that could help me and not having access to it..

[SusieD]

Kakinda, Firstly, I am very sorry to hear about the ulcer and you nearly having lost your sight in that eye. It is awful that it came to that. Was it just the dryness itself what caused the ulcer? Or did you have an infection that caused it. If eyes are left to become severely dry then this can happen - perhaps if you had had access to serum drops at an earlier stage (ok, so they probably werent available then - just playing devils advocate) or other treatments, you wouldnt have got to that stage.

Im not about to just go out and get autologous serum drops and I personally do understand the risk for infection - very much so. Maybe as time goes on they will become more developed and the risk will be less. In the hospital where I work many patients have autologous blood transfusions (where it is possible of course) instead of having donor blood - naturally this is a different situation, but my point is many hospitals in this area stopped doing this for a few years because patients were getting infections, the techniques have been perfected and now it is much more preferable for patients to have their own blood back where possible. Im sure when the use of serum drops becomes more widespread for dry eye treatment, there will be more awareness of the possible risks, as with any treatment. The NHS produces a procedure sheet for autologous serum that does not specify you have to be virtually blind before it can be used.

Re: cyclosporin - yes I would love to be able to 'try that first' however, as explained before, this is as hard to get access to as the serum drops.

No-one is stating they are in a worse postion - its just that when you see and hear of others who have had success with various different things and the best you can get is eye drops that dont really help - you do become extremely frustrated by it.

Personally, my eyes are getting worse with time, I already have sight problems anyway, I do not want to risk increased loss of vision due to dryness - but there are not a great deal of options open to me at the minute, I cant travel to Paris for ciclosporin.

Having said that - thank you for encouraging the awareness of potential risks.

[kakinda]

clarifications

Hello,
No i did not lose my eye ... as I said in my post it recovered ... but i did lose some sight but i have recovered some sight since then (1994) with the scleral lens (2005).

Probably if I had had serum drops at that time 93, certainly my eye would be a in better shape today.

But i have ulcers frequently... due to the dryness and the meibomianitis. I case of ulceration I think it's useful to try the drops but as a long term medication for milder cases it's risky... and you should be informed of it.

Some docs don't treat patients as adults and don't put things bluntly as i did in my post but yes an infection can cause serious ulcers and that's mainly why they don't prescribe serum drops to everyone ... especially when the risk clearly overweights the advantage.

I do understand your frustration to know that treatments exists and you can't get them. But most treatments for dry eye are still experimental, they become safer when they'll be able to artificially reproduce growth factors etc..

I'm sorry you can't get to France to get cyclo (If you did find a way to come I'll surely try to facilitate things for you and give you the right contacts), but are you certain that no-one in the UK could produce cyclosporine 0.05% drops?... or find someone in the US to send Restasis to you (since Restasis comes in single use vials). You really need to start a campaign on this in the UK.

I understand what you meant but I wanted to put things in perspective and remind you what was at stake (infection risks) so that you may understand why docs don't give autologous serum to everyone... this is why i mentioned my case at all - orthewise i wouldn't have mentioned it - so that you may consider that even in severe cases option are not there for the asking... and even so you have to balance the pro and cons.

I will definitely use serum drops for my next important ulceration as it as been agreed with my doc in Paris... until then I prefer not to.

Should you have an important ulceration (god forbids!) then yes I think you should definitely go ahead with the serum.

This is only my opinion (based on what I have read, and discussed with my docs over the last years ... quite a few years in fact).

Take care and tell me if you need more info on what is available in France (I don't mind calling them for you to ask what you would need - paperwork or something else - if you came from the UK to Paris).

All the best (we all know what that could be, don't we?)
Kakinda

[SusieD]

In my case - I have quite severe inflammation because of the dryness. This will not ease with drops alone. It affects not only my vision - but everything I do as a result and my eyes are red and painful all day, every day. Mild doesnt cover it. Without more effective treatment - It will only get worse with time.

Granted Serum drops may not be the best option right now, and no doubt there probably are less risks with ciclosporin - I understand that. Ciclosporin is only available as an inpatient currently (Im talking eyedrops). It doesnt appear to be available in any other way. I will check this again next time I see my Doctor and will find out if there is anyway at all one can access this treatment. There is no way I can get it from the US as I would need a prescription and I would imagine the same is true of any other country in the EU - but thanks anyway.

If I didnt know better - I'd buy the stuff online!

[kakinda]

new thread

Ok, our subject has shifted from serum to cyclo... and how to get new treatments in the UK or elsewhere in Europe. I belive I have some suggestions.

I'll answer you in a new thread on the Keratos/multilingual board on this forum.

But yes you would need a prescription in the UK. Restasis isn't commercialised in France either but some people are albe to get thru a special import process....

see you there,
Kakinda