Just started PRP serum....

[lizlou29]

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

Today has been a complete right off (again) as I'm in so much pain. I was told to stop warm compresses and Doxy as otherwise I wouldn't know if it was helping. Was a really confusing consultation anyway as I was told my tear film was fine and was told "you don't have dry eyes today". He agreed to let me try PRP if I wanted to anyway. I don't understand this as besides the pain which I know is real I have a Schirmer's of 0 and 1 and on Monday was told by my regular Ophth that my MGD was very active. How can two ophth's see such different things???

The ophth felt that after 8 weeks of using the PRP I would feel much better and be able to have all 4 punctal plugs taken out. I can't see this happening unfortunately. He didn't think I had ocular rosacea, didn't think it was likely I had Sjorgren's and told me I was over-feeling things and need to not let this get to me. I'm sure he felt I was over-stating the pain but he did say that if I had gone to the trouble of going out there it must be bothering me. I told him it's severely reduced my quality of life, I can barely go out anymore and working is such a struggle but I don't want to leave my job. He said it could be from computer use but it's far more than that. Three days of barely any computer use has done nothing to help and I don't think I'd be waking all night barely able to open my eyes from the dryness if it's just down to computer use.

Is it possible to have such a low Schirmer's number, MGD and have a normal tear film? I'm feeling quite despondent as I had high hopes. Maybe I'm making a judgement too quickly as I've only used the serum 3 times. I know a lot of people on this forum have had success with autologous serum or PRP so perhaps I'm one of the unlucky ones. I just want to find one things that eases the pain for a little while.

[No tears in ATL]

Lizlou, 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. I don't have enough natural tears to dilute whatever is going in my eye. Maybe give this a try:

1) Use cold compress (not cool, COLD, with ice) about 10 minutes.
2) Put in serum. Wipe lids and lashes to get the saline residue off.
3) Wait another 10 minutes.
4) Put in the gentlest drop you have. Whatever you can tolerate. I usually put two drops in each eye, to get everything really diluted.
5) Apply compress again for another 5-10 minutes. My current drops right now (experimenting with several brands) have a bit of castor oil that is a known irritant but the stinging goes away after a bit. Ice will get the sting down sooner.

Keep doing this throughout the day. Like one of the moderators here said, by the time you notice your dryness, your eyes are already past the breaking point. Make a habit of timing your drops, if you haven't already. I'm every 2.5 to 3 hours or so.

Also, you are quadra-plugged. I had to remove my bottom plugs due to backup inflammation. Give it some time but if you are still bad off, you might think about getting either upper or lowers removed so the bad tears don't sit on your eyes all day. I just have uppers.

Sorry I don't have more advice. This dry eye thing is a lot of trial and error. The method above worked for me when I had a huge flareup recently and by about day 3 things got a bit better.

Hope you feel better soon.

[lizlou29]

Thank you that's really helpful . I'll give that ago before my next drop. I was told it'll be about 10 days to see any difference. Fed up with getting my hopes up and nothing helping. Had my first cry in a while earlier now my eyes are even worse. I hate this condition so much, I know we all do. It's so draining, emotionally and financially!

[No tears in ATL]

Oh, yes, we all know. Going on 6 six years with this battle and many others on here much longer. I really miss mascara! You may not end up being 'cured' but I think this will at least become manageable.

[lizlou29]

I've had dry eyes for 7ish years but only severe for a year. Never knew it could get so painful. This forum has been more helpful than nearly all the eye docs I've seen. I figure I've got to stumble upon something soon that helps me. My hair has been falling out a lot over the last couple of months and the texture has changed. My GP said it could be stress over my eyes, my thyroid or a mineral deficiency. Still won't treat thyroid as TSH 'not high enough'. I know something isn't right and would do anything to feel like my old self. I feel that until I find out what it is all the I'm doing for my eyes is just papering over the cracks so to speak.

[NotADryEye]

My hair has been falling out a lot over the last couple of months and the texture has changed. My GP said it could be stress over my eyes, my thyroid or a mineral deficiency. Still won't treat thyroid as TSH 'not high enough'. I know something isn't right and would do anything to feel like my old self. I feel that until I find out what it is all the I'm doing for my eyes is just papering over the cracks so to speak.

Lizlou, we have to find you a solution or at least a strong argument for more comprehensive thyroid testing. Hair falling out and becoming brittle is classic Hashimoto's. I am frustrated for you. My ex-GP was as disinterested as yours when my TSH was normal. Said, flat out, "It is not your thyroid." Well, it turned out, he was completely and absolutely wrong.

Maybe we can find an article on pubmed that you can take to your GP that comes with the gravitas of a trusted and peer reviewed source. I will look. You can too.

www.pubmed.gov

[lizlou29]

NotADryEye - the endocrinologist I saw a couple of months ago (private not NHS) didn't think I should be on mefication as a fluctuation of TSH between 4.5 and 7 was 'normal'. I've had a letter from his secretary saying I should go for a follow up but I don't see what he'll do, apart from make money from me. He said my eye dryness would only be caused by hyperthyroidism not hypothyroidism and he'd only order a antibodies test if my TSH level kept increasing. Not sure whether to push my GP to do more tests as she wouldn't refer me to NHS endocrinologist unless my TSH was much higher or lower. I know there is something wrong as eyes worsening, hair falling out. I feel tired all the time, not physically but as if I haven't slept properly even when I have. My GP said she is running out of ideas and she is starting to go down the 'it's just stress' route. Yes I'm stressed because I don't know what is going on with my body.

[NotADryEye]

I know TSH can and does fluctuate. But you have all these other symptoms that are just classic. Plus the tiredness. I wonder why a GP who is running out of ideas wouldn't add a few tests? They are so simple. Is it really a question of quotas? I don't know...

Maybe the endocrinologist might consider running a few more tests on your thyroid given your expanded list of symptoms.

And, without any doubt and from personal experience, your endocrinologist is absolutely wrong when he says that the dryness can only be caused by hyperthyroidism. That is just flat out wrong. Your lacrimal gland can become sluggish, as can your meibomian glands, as can the rest of the functions of your body, when you are hypothyroid. You can become aqueous deficient with low Schirmer's scores. I am hypo and have had all of this. Consequently, maintaining good thyroid hormone levels is crucial for me and my eyes.

I wonder why your doctors are so closed minded. I find their attitudes baffling. So we'll need to concentrate on finding the studies/articles that can convince them to think otherwise.

littlemermaid, are you following this thread? You are such a good resource. What do you think?

[Katewest]

Regarding % serum

I am kinda annoyed with Moran Eye Center in SLC. They are the only ones that do blood serum and only do 20% because "thats all they have the capacity to do" I really would like to try 100% does anyone know an eye center in maybe Cali that does them? The 20% serum drops left residue in my lashes and seemed to dry my eyes.

[wagnermid]

[QUOTE=lizlou29;87640]I was told to stop warm compresses and Doxy as otherwise I wouldn't know if it was helping.

Lizlou, just a thought from me professionally rather than a mum of a child with extreme eye issues, the problem with changing existing treatments when introducing something new is you don't know if changes in symptoms are due to stopping a previous treatment or starting a new. As a physiotherapist I wouldn't do the two things at once, I'd introduce a new treatment then once I had established what it was doing decrease the old treatment or the other way round but not both at the same time.

[wagnermid]

[QUOTE=lizlou29told me I was over-feeling things and need to not let this get to me.

There is no medical basis for saying you are over feeling things. If you have chronic or acute pain he can't treat he should be referring you to a pain specialist. I'd love you to swap lives with him for a day.

But seriously a multidisciplinary chronic pain team has made a difference to our sons life, helping him deal with the pain, medicating it but also confirming it is very real, very difficult to live with and that eye pain in particular is often ignored and under treated .

[littlemermaid]

littlemermaid, are you following this thread?

Yep. I'm not good on this - I'm supposed to be working on paediatric blepharokeratoconjunctivitis Maybe anti-anxiety meds and sleeping tablets might have affected the endo system too http://www.nhs.uk/conditions/Thyroid...roduction.aspx My friend has hypothyroid regulation meds now, as you say NADE, but before they took her seriously she was in a pretty bad way with anxiety and mood swings, and the dry hands and hair.

[lizlou29]

I've had an initial consultation with a pain management specialist and I've been referred for CBT. Was referred in July so it's taking time. She wanted me to order gabapentin but admitted she'd never had anyone referred to her with dry eye pain before.

I'm going to see the endocrinologist next week and get a thyroid antibpdies test done. NHS lab refused it as TSH was only around 5 at the time and my GP gave no reason for it.

Still using the PRP but my eyes feel worse. Really notsure what's going on . Unfortunately my ophthalmologist is overseas right now and the only other consultant at the clinic thinks dry eyes is not a big deal and tells me to use more eye drops.

[lizlou29]

*Take (not order)

Just to say Littlemermaid has been brilliant with practical advice through PM's when I know she is so busy herself.

Worried I may have infection from the serum. My eyelids are very red and swollen but my eyes aren't bloodshot. How would I know? May have to bite the bullet and see someone else at the eye clinic just to check there isn't a big problem.

[littlemermaid]

Cold compress. He has a good Registrar or Optometrist though? I'd stick with the team, if at all possible. We love a good supporting optometrist. Phone secretary to avoid Nurse-zilla. When we've had infection, there's been yellow gunk first thing in morning. He'll be back soon. It's so reassuring and professional that he tells people where he is.

What instructions did they give for the PRP safety?

NHS hypothyroid info above, p2, says that anti-anxiety meds can set things off, if a printout would help with the endo or GP. You're doing great battling with this. These conditions are not widely recognised or understood in the medical community. We are the lucky ones.

Thanks, Lizlou, but it would be great to hear you're out there having fun again ~ I don't get out much these days but the actual Littlemermaid is taking 5 A levels now, mostly sciences, plus voluntary work with children This is possible because she has extraordinary docs like yours for help with flareups and maintenance problems while we try to work out what's happened to her eyes.

Hopefully soon patient mutual support groups will be the norm in hospitals too. Does your hospital have an Eye Clinic Liaison Officer?