Just started PRP serum....

[littlemermaid]

He said that if my eyes were that dry I would have got autologous serum on the NHS

He knows patients who have got autologous serum on the NHS?

[lizlou29]

He knows patients who have got autologous serum on the NHS?

Ha ha. He said he'd heard it was available on the NHS so I should have got it via that route if my ophth felt it was suitable. I tried to explain how difficult it is to get but he just started talking over me so I assume he knows absolutely no one who has got it on the NHS.

[drageye]

Hi Lizlou.
I haven't read all the postings on this thread so excuse if this ends up being a repetition. I read your initial one and understand very well where you're coming from. About three weeks ago I saw an opth that told me that my eyes didn't look dry after doing a dye test. He was able to check that my punctals were plugged but didn't say much about it. I told him about my symptoms and he said "you've been reading too much on the internet". Something I forgot to mention was that I was instilling celluvisc 0.5 and 1 rather constantly, and specially on that day as I had to take train and underground. Besides, I wore my goggles (tightly fitted by pulling from the back) all the time except to the consultation. And the consultation was at 12m which is when my eyes are at their best. In short, My eye care was the only thing that was assessed no my real eye situation. Had he seen me two hours later then he would've seen very angry eyes.
By the way, an aside, Is the dealing with the Alicante institute carried out in English? If there is any need to clarify or interpret from Spanish I'll be more than happy to help. Spanish is my mother tongue.
drageye

[NotADryEye]

Had a thyroid antibodies blood test and he's started me on Levothyroxine again, just 25mcg so that's the plus side. We looked at my TSH results over a year and they've crept up.

What was the result of the thyroid antibody test. Was it TPO or something else?

He said that if my eyes were that dry I would have got autologous serum on the NHS.

Well.... really?

Said what 30 year old doesn't get tired easily.

I was never tired when I was 30.

Almost certain that thyroid isn't causing eye problems and that it must be Sjogren's but to leave it a year or so until having another ANA blood test as result can change, until then i'd be wasting mine and the rheumatologist's time.

Again, he's wrong about hypothyroid not causing eye problems.

He believed my joints aching is because I've read about Sjogren's and Hypothyroidism symptoms and sometimes the mind then plays tricks (it's real, i'm not crazy).

Well, that's just rubbish.

Said my hair falling out and dry skin is likely due to stress at work or relationship, I said neither are causing stress, only eye problem is. He said I'm being treated for the eye problem so not to let myself worry about it, just focus on the good things and get on with life. I agree the thinning hair could be due to stress but I know why I'm stressed.

And hypothyroid, classic symptom is thinning hair.

Apparently I ''appeared anxious'' when talking about my eye condition and to think how anxious a blind person would feel and it puts my condition into perspective. I don't know how many times someone has said "at least you have your sight" etc. Of course I'm grateful for that but why the need to compare one condition with another. It makes no sense.

Yes, as if your suffering is somehow not valid because someone else might also be suffering.

He said that if my TSH is suppressed to between a TSH of 1 and 2 in 6 weeks time I can stop the Levothyroxine. I said if it helps shouldn't I carry on and he said only people with actual Hypothyroidism rather than subclinical should stay on it and why would I want to stay on medication when I feel better. I know this isn't right but could see where pushing the point would get me.

I think that depends on the type of hypothyroidism you have. And again, it's not just TSH that needs to be tested. There are other even more important thyroid tests.

Just picked up VitA POS ointment to use at night. My ophth said I need Vit A for dry spots on the cornea but I thought Vit A deficiency was extremely rare in the UK, normally found in developing countries where rice is the staple diet as it doesn't contain carotene. Oh well will give it a go.

How have you been doing on the VitA ointment?

[lizlou29]

NotADryEye - Endo said he was testing for antibodies so I assumed this was TPO. Will get the result end of next week, delayed because of the holidays.

I've only tried the VitA POS twice. It doesn't burn but it's so thick that i can still feel it in my eyes the next day. My eyes are so painful at the moment that I'm not using anything other than Celluvisc until they calm down a bit.

[NotADryEye]

Yes, please post your thyroid test results and as SAAG says, probably best to baby your eyes for now.

[Gerri55455]

lizlou, hi:

I got back from Alicante yesterday where I had PRP serum made for me at the Vissum Eye Institute. I used it for the first time this morning and it's not as comfortable to use as I thought it would be. I assume it's the saline that has dried around my eyes, crusting around the eyelashes. I was told it would be lubricating and since the only eye drop I can tolerate is Celluvisc 0.5% I was really hoping for more. I expected the serum to be thicker but it is of a similar consistency to Celluvisc. It's actually a similar feeling to the day after I tried 2% cyclosporine for the first time .

I began the serum a week ago and was expecting more. My eyes feel even drier so I'm a little discouraged. What has your experience been? Thanks so much. ~Gerri

[steveyez]

Hi Gerri

Autologous Serum / PRP definetly does make your eyes drier when you take it, I always take artificial teardrops ( i use vismed gel ) not long afterwards and that rebalances things.

PRP is definetly not an instant miracle type relief - Ive been taking it for just over a year now and slowly but surely Ive been getting better and better but I was in terrible pain and discomfort to start off so any port in the storm as the saying goes ....

Im not a medical person but it feels to me that Autologous Serum / PRP probably wouldnt benefit every type of dry eye disorder - I had schirmer scores of 0 and severe corneal nurelgia and Ive found it to be of enormous help but patience is definetly needed Im afraid.

Hope that helps
Steve

[lizlou29]

lizlou, hi:

I began the serum a week ago and was expecting more. My eyes feel even drier so I'm a little discouraged. What has your experience been? Thanks so much. ~Gerri

Unfortunately I stopped it as it just made my eyes so uncomfortable. It was like putting salty water in them and it made my eyes too uncomfortable to work (they are always uncomfortable but this was horrible). Seems I am in the minority though. As others said give it time. I tried for a while but just couldn't get used to it.

[Gerri55455]

Steve, thank you so very much for taking the time to write. I've oscillated between hope and despair since beginning the serum 10 days ago but I must say that it does calm the severe corneal neuralgia that I've had since developing side effects from steroids. If I had to use it for that alone, I gladly would. But I keep hoping that the dryness will gradually subside. After trying everything this past year, the Serum and hope are all I have left. Thanks for the tips on vismed gel. I'll try it. Best, ~Gerri

[steveyez]

Hi Gerri

I understand what you're saying totally. Its only looking back at things Ive struggled with like the wind in the tube in London over several months Ive struggled to cope with it that i realise i am actually making progress - its only natural to want to be better instantly - I'm just the same.

Ive benefited from a great opthamologist (in Birmingham, England) and recently had MGD Probing done, regularly take Omega 3 tablets, regularly do Hot Compresses etc but to me it feels like the Serum / PRP is the standout performer so to speak but it literally is painful slow progress but a year ago i doubted any progress was possible so there's definetly hope.

Cheers Steve

[DryLondoner]

Steveyez and Lizlou, did you get the serum on the NHS or have to go abroad to get it?

Steveyez - I hated commuting to work this summer (even more than normal), in the winter it was ok, but suddenly one day all the windows on the tube were open and my eyes were not happy!

[lizlou29]

Steveyez and Lizlou, did you get the serum on the NHS or have to go abroad to get it?

Steveyez - I hated commuting to work this summer (even more than normal), in the winter it was ok, but suddenly one day all the windows on the tube were open and my eyes were not happy!

No, I got PRP serum in Alicante, Spain. I asked about getting it on the NHS but it would have taken a long time (I was told up to a year to get approval).

[Gerri55455]

Thanks again Steve,

to me it feels like the Serum / PRP is the standout performer so to speak but it literally is painful slow progress but a year ago i doubted any progress was possible so there's definetly hope.

It really does something to a suffering soul to hear words that resonate with my current feelings. So I'll keep hoping. Very much appreciate the encouragement. Cheers!!

[Gerri55455]

my autologous serum burns also. BUT I have found that I have got to cool that eye down before I put anything in them in to reduce the stinging. .

Hello, so glad to be reading these. My tears have been burning and stinging a lot but I have tried everything so this is all that is left for me now. What's your update a year later? Thanks so much. Gerri