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  • steveyez
    replied
    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

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  • Gerri55455
    replied
    lizlou, hi:
    Originally posted by lizlou29 View Post
    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

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  • Guest's Avatar
    Guest replied
    Yes, please post your thyroid test results and as SAAG says, probably best to baby your eyes for now.

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  • lizlou29
    replied
    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.

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  • Guest's Avatar
    Guest replied
    Originally posted by lizlou29 View Post
    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?

    Originally posted by lizlou29 View Post
    He said that if my eyes were that dry I would have got autologous serum on the NHS.
    Well.... really?

    Originally posted by lizlou29 View Post
    Said what 30 year old doesn't get tired easily.
    I was never tired when I was 30.

    Originally posted by lizlou29 View Post
    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.

    Originally posted by lizlou29 View Post
    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.

    Originally posted by lizlou29 View Post
    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.

    Originally posted by lizlou29 View Post
    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.

    Originally posted by lizlou29 View Post
    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.

    Originally posted by lizlou29 View Post
    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?

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  • drageye
    replied
    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

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  • lizlou29
    replied
    Originally posted by littlemermaid View Post
    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.

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  • littlemermaid
    replied
    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?

    Leave a comment:


  • lizlou29
    replied
    Finally had some correspondence with the Vissum Institute regarding the PRP serum. Not sure if they misunderstood but I said the serum was causing more (intense) irritation. They said judging by the colour it is still ok to use i.e it didn't get too warm and to only use it 3 times a day. I said I couldn't use it at all and they just said stop the Celluvisc at night and use only the serum. Well if I wake in the night or when I wake in the morning I can't open my eyes without the Celluvisc so I have to use it. Then I just got an email saying best of luck and report back in 2 weeks. Well I can't use it!

    Had an appointment with an endocrinologist. Good luck I've developed a thick skin and don't look to most doctors for any sympathy! 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. He talked over me all the time, hadn't heard of PRP serum (fair enough), told me not to waste my time of unfounded treatments "like the magical serum and naturopaths". He said that if my eyes were that dry I would have got autologous serum on the NHS. Said what 30 year old doesn't get tired easily. 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. 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). 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.

    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.

    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.

    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.

    Eyes have been so bad this week had to keep leaving work early. Ideally I would have had a few days off but can't afford to and work is manic at the moment.

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  • Guest's Avatar
    Guest replied
    lizlou29, between 5 and 10 is very high for TSH. If you have access to your earlier tests bring those to your next endo apt. Show them all. The endo is absolutely wrong that only hyper can cause eye problems. Simply wrong. That mistake alone would send me to another endo, along with being dismissive of TSH between 5 and 10, even 4.5 is the absolute high end here. Even my ex-GP who did not diagnose my thyroid disease would have taken notice of TSH 10.

    Good that you're taking Vit D. Where it is not sunny deficiencies can be even more prevalent.

    I wouldn't worry so much about Sjogren's just yet. Wait until you get the thyroid diagnosis.

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  • lizlou29
    replied
    Steveyez, I will try and get some Blephaclean wipes. I tried a new bottle of the serum again yesterday and it just feels awful, as if I've got tiny pieces of glass scratching my eyes. I know this isn't most people's experience with it. I haven't heard back from Dr. Alio. I have emailed the general enquiries email address as well now. So frustrated that I can't use it.

    NotADryEye. I would love to find a doctor to treat on symptoms not just numbers as I know some do. I got a hold of my old blood test results from the Health Centre I used to go to as I have had thyroid blood test a few times since I was 18 and was struggling to stay awake throughout the day. My GP always said it was borderline and I never asked for the TSH number. Turns out it was always between 5 and 10 and GP's here don't tend to treat a TSH between 5 and 10 so I will go armed to with these results when I see the endocrinologist on Tuesday. Don't think he's the best but I will definitely get another endo's opinion if he tells me everything is normal as he did before. He said only hyper can cause thyroid problems, my ophth disagrees but I get the impression he wouldn't want to hear that. My Vit D was 15 nmol/L (<50 nmol/L is a deficiency) a few months ago. I've been taking 5000iu Vit D per since then so this should be OK by now but my GP is rubbish with ordering follow up tests, she thinks if i'm taking supplements it should be fine. My skin has gone very dry as well, I am worried it is Sjogren's but I'm going to have to push for further testing as the rheumatologist said not Sjogren's from my blood test results but I'm learning that most people have more tests than I did. So tiring try to find answers especially with so many doctors unsympathetic to dry eye problems.

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  • Guest's Avatar
    Guest replied
    Originally posted by lizlou29 View Post
    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.
    lizlou29, I just received my latest thyroid panel results. TSH 7, in the US, is out side the normal limit. The normal range is 0.45-4.5. Something to think about if you are spiking to a 7. Happily mine is down to 0.88. Lower is better.

    Also, I found this list of doctors who treat thyroid disease in the UK that you might be interested in. It was put together by a patient advocate in the US. You might find someone who is more open to investigating your condition. See link below. Best of luck.

    http://www.thyroid-info.com/topdrs/unitedkingdom.htm

    And how is your Vitamin D level? Has that ever been tested? You may have already told us, but I just don't recall. I ask because low Vit D can also cause hair loss.

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  • steveyez
    replied
    Hi Liz

    I didn't get on with the blephasol solution but blephaclean wipes seem to irritate me a lot less - you can get blephaclean wipes on an NHS prescription so if you've got a prepaid certificate then the wipes maybe worth a try

    You mention saline regarding the PRP but I'm pretty sure the advantage of PRP over the NHS blood service autologous serum is that PRP contains no saline solution or anything else apart from your own blood which should mean we don't react adversely to it - the PRP doesn't irritate me at all whereas I feared the saline solution in Autologous Serum might.

    Stuff like the UK version of Restasis - Optimmune I simply cannot tolerate as it irritates my eyes that much

    My daily regime is as simple as blephaclean wipes, vismed gel unit dose drops and PRP serum - hope the info helps

    Really hope you get on fine with the PRP - ive just got back from a night out watching a play at the local theatre - that's something that wasn't possible at the start of the year!

    Steve

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  • lizlou29
    replied
    Yes I am doing cold compresses - not ice cold as i feel they aren't good for my rosacea. My eyes are watering a lot more at the moment, not in a nice way, feels like lots of salty water in my eyes. I'm seeing an Optometrist later at my regular eye clinic for a consultation about sclerals. Luckily my brother is driving me there as eyes too bad to drive comfortably right now. I was going to see if someone cant take my upper punctal plugs out whilst i'm there and if things get worse I could have them put in next week again.

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  • No tears in ATL
    replied
    Liz, are you trying the ice compresses yet? Is it helping at all? Although personal experiences vary, I will say that when my eyes were inflamed two weeks ago due to the sudden drop in temp and humidity, everything, and I mean everything, stung like gasoline. I had to use the ice before and after application of any drops, including serum, but after a few days I could tell that the inflammation was going down. Then, the serum drops were much more tolerable and I could go back to my regular frequency of dosing. I was also using the moisture chambers, humidifiers, staying away from bad food, and all the other regular things I do.

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