NEED HELP PLEASE ABOUT SERUM DROPS

[katiewalsh]

Hi. I have very dry eyes & my doctor wants to make Serum Drops to treat it. The problem is you use the patients own blood and my MPN specialist doesn’t know if being on Hydroxyeurea would make these drops harmful to me. So I’m hoping some of you might know the answer. Thanks in advance for any information you can provide. Katie Walsh

[Cja1956]

I’m very interested, as well. My eyes are so dry and even, grainy sometimes , and other times, they just hurt. I’ve never heard of Serum drops. I was doing over-the-counter drops for a long time, but I’m not sure that’s the answer. I’m on hydroxy, as well.

[yarrowleaf in reply to Cja1956]

I'll tell you something. I lived on hospitals all my childhood because my father was a surgeon. Up where I lived there were many many real poor people (iron work/mining district) and lots of things they used on our hospital, was home made stuff made by our head nurse (who was a real magician with plants and such). BUT : Many had those unbearably dry eyes:- hunger, bad diets, heat and welding-harms and such. Our head nurse told the men to use their own urine (NOT the morning urine). And it works !! It also works wonders on frost bitten hands and feet. Sounds very strange. But like the Serum, it comes from your own body and there seems to be many such parallels. Oh-- and it also neutralise viper poison to a degree that makes you able to get help before you swells up too much .

[Cja1956 in reply to yarrowleaf]

Thanks so much for your reply. Very interesting information. My father was also a doctor, but here in the States, and I had a very different lifestyle. Thanks again for giving me a different perspective.

[yarrowleaf in reply to Cja1956]

It is the diversity of habits and choices which makes the world so rich !!!

[JediReject]

Hello Katie, , , I use them every day and find them a godsend. I started about 3 years ago by using my own blood as I thought well I don't wish to use a valuable donation when I can go and give my own blood. I went several times to Liverpool UK as there aren't many centres near me that cater for them. But that was pre Covid. My last 2 lots have been off the shelf ie donated blood. Partly because of the risk associated with me going there and because there have been far fewer operations requiring transfusions and it doesn't have to be your blood type. I wouldn't ever say the bank is awash with blood but it's not a problem getting donated drops just now and some recipients cant donate. Whether they're quite as good as using your own blood (Autologous) I'm not sure.

To answer your question in my opinion the fact you're taking HU shouldn't make any difference, I was on a cocktail of drugs when I first donated including a couple of nasties and it was fine. It may be that your best bet will be to get donated drops for now anyway if you can.

Regards Chris

[katiewalsh in reply to JediReject]

Thanks so much Chris this is helpful . For some reason my doc wants me to use my blood but I’ll let him know you’ve used donor blood. And maybe someone on here will have gotten them while on Hydrea. Btw, there’s a lot in the literature about patients using them who have Graft versus Host disease. Sorry I think I butchered this term. Katie.

[JediReject in reply to katiewalsh]

Yes severe dry eye is but just one of the many possible effects of GVHD which unfortunately was at its very worst after my SCT. Added to that the steroids gave me thick cataracts and the ensuing surgery can also make your eyes a tad drier. Dry eyes can cause real seriius issues with your general eye health like infection and cross infection. In fact I developed an ulcer in my left eye which was a hairs breadth from becoming a hole but they saved it.

Prior to each donation you get a call from one of their specialist docs or nurses to ask about how well you are, what meds you're on etc. Your blood goes directly into a special bag that can be placed into a centrifuge to spin off the serum and a few weeks later you get your drops by courier frozen packed in dry ice. Once removed from the packing the smaller box about 10" x 5" x5" you store in your freezer and then defrost (10mins) and use one phial in a 24 hour period then discard.

Hope you get sorted if you have any questions that I might help with just fire away.

Chris.

[katiewalsh in reply to JediReject]

Helpful details thanks.

[Wyebird in reply to JediReject]

I’m in complete awe of the process thanks for the info.

[JediReject in reply to katiewalsh]

I have just found a document from college of Opthalmists which says those taking cytotoxic drugs should be considered for Allogenic serum drops ie donated. The risks of further damaging the eye surface using their own serum appear to be small but unknown as hard to evidence.

rcophth.ac.uk

[katiewalsh in reply to JediReject]

You’re tremendous! I love it when people give you the source. Unfortunately I can’t find the specific article in the journal. Do you recall the name of the article or the search terms you used?

[JediReject in reply to katiewalsh]

I'll get back to you Katie, , I may have picked a similar link instead. I will check it as it's one of those download docs. C

[JediReject in reply to katiewalsh]

Reference top page 23.

[JediReject in reply to JediReject]

Type into Dr Google " autologous serum eye drops pdf" it should be top,of the list. The other link is more generic , it will be in there somewhere ! It's a lengthy document and the reference is some way down , let me know if you can't find it . . . .

[katiewalsh in reply to JediReject]

Hi Chris. Managed to find it. I’m U.S. other articles came up so I added the Royal College part. And just as you said, their answer is unambiguous: don’t use your own blood if on Cytotoxic meds. I read below that you have plugs. I have collagen plus which 11 days after insertion have yet to help. Is that the kind you have? Thanks. Katie

[katiewalsh in reply to katiewalsh]

Hi again Chris, one question I have is if there’s a scale of toxicity which would allow the use of ASEDs on oral chemo. One article discusses 2 oral cytotoxic drugs appearing in the Autologous drops. But I have no idea how toxic HU (& my specific dose of HU) compares to those drugs. Somebody someplace should have a more definite answer. Btw, the Royal College article is republished by our National Institute of Health , Any suggestion on where I should look for articles that say if any degree of toxicity is a problem? Thanks! Katie

[JediReject in reply to katiewalsh]

Not really Katie all I can say is that it was never discussed in my case and I was so desperate for eye relief I didn't consider or care how the more toxic of the pile of drugs I was taking at the time (Ruxolitinib /Ciclosporin /transdermal morphine pain control patch) might taint my autologous drops. As to whether this affected my eyes adversely I don't know.

Personally I think your risk of damaging your eyes further by using your own blood drops is likely to be borderline or less with HU which is very low dose. If you were having chemo cycles I'm sure it would be a non starter.

As you say someone will be in the know but it might be worth talking to the guys that produce them because it may be they screen impurities out or do an analysis on the finished product to check it's components.

Also they are diluted so it's worth checking by how much , I think 50% might be around where mine are so this should reduce toxicity?

Hope you get the answer soon - Chris

[JediReject in reply to katiewalsh]

Sorry Katie I forgot, , yes the plugs , , I think silicone maybe , obviously really tiny and bone shaped , , had quite a few come out until settled on correct size coupled with expert insertion I guess and been in place over 2 years now. . Dunno if help greatly but part of a solution so happy enough and I prefer not to gave ducts cauterised which is an option. Chris

[Wyebird in reply to JediReject]

Never heard of these serum drops - curious, why not use over the counter?

[JediReject in reply to Wyebird]

Hi Wyebird, erm well for me having such arid eye surfaces and cornea scarring especially in my left eye following the ulceration nothing really comes close to giving me that instant relief throughout the day. I use them in conjunction with Hylo Forte drops which I use alot. I've tried various gels but they glue my eyes up and then I wished I hadn't bothered. I've got Visco tears too.

I would benefit from a cornea graft (from cadaver) in left eye as it's going worse but if graft fails you lose your sight in that eye. So last resort.

Regards - Chris

[katiewalsh in reply to JediReject]

Hi Chris, just met with my eye doc. Says only serum drops available in US are from patients own blood. My doc plans to put me on Ropeg when it’s available & maybe he’ll take me off HU then but I don’t know. The HU would seem necessary to keep my platelets down so perhaps not. Once again I want to thank you so much for doing the research & getting me the medical journal site & fine tuning my search terms. Are your Hylo Forte drugs OTC? Do you have a humidifier in your house? I think the reduced humidity here in winter made mine worse & numerous articles recommended them. I’m also going to get Traquile Eyes eye mask for sleeping. The trap moisture inside. Can use Press N Seal too. Have been using that nightly. Some folks have luck with Lutein supplements so will try those too. Big e-hugs. Katie

[JediReject in reply to katiewalsh]

No problem, was actually thinking I've hijacked this thread but thought it best to share as much as I can if it helps anyone tackle this gritty issue , and boy are my eyes gritty ! You can get Hylo Forte but it's not cheap to buy off prescription in UK , I saw it on Amazon @ £11 a go. Having said that it lasts longer than cheaper versions because it's a dropper bottle where you upend it , push the bottom and it dispenses a standard drop.

I don't have a humidifier if anything we need a dehumidifier, I don't think it's too much of an issue here.

I will look at those sleep masks as mine are worse throughout the night.

Good your Doc looking at options but my feeling is you will be ok to use your serum drops at the dose of HU you take.

Happy to have explored this with you Katie and I hope you get to experience the feeling of sheer relief of taking your cold serum drops from the fridge and squeezing them into your eyes. Bliss.

Stay safe - Chris

[Wyebird in reply to JediReject]

I’ve just read up on it. Fascinating and it’s been around since 1984

[JediReject in reply to Wyebird]

Gee Wyebird never knew that, , you'd of thought it would be much more recent. . Wonder if George Orwell knew about it 😃 . . C

[Wyebird in reply to JediReject]

Lol doubt it he was too busy writing 🤣

[katiewalsh in reply to Wyebird]

As my eyes became more dry, OTC drops weren’t enough. Then prescribed stronger drops which were enough for a few years but now not effective. My dry eyes just became progressively worse with time or age.

[Wyebird in reply to katiewalsh]

Oh gosh it’s important that you find a solution . Good luck

[Hidden]

What does that mean people??? Eye drops using your blood ??? I don’t understand.... what do they mix with it to make the serum??? I’ve never heard of this, it’s so odd!

[katiewalsh in reply to Hidden]

Sorry but I don’t know the details but you can probably find out by googling it. All I know is it’s a treatment for extremely dry eyes.

[Hidden in reply to katiewalsh]

Ok I will look it up for sure... I suffer from dry eye sometimes so I’m very curious.

[JediReject in reply to Hidden]

Mixed with sodium chloride to dilute not sure how much they're diluted but my donated drops don't seem as potent as my own were which leads me think they are a weaker solution. Not everybody is eligible due to the cost of manufacture but there's no harm in asking if you might qualify.

Chris

[Hidden in reply to JediReject]

But isn’t it thick and red going into the eye???? This is just weird.

[JediReject in reply to Hidden]

Nooo , and before anyone asks I don't have fangs and drink it 😃. Seriously it's the serum of the blood which is separated out. My drops are not gloopy and an off yellow or mustard colour much as the colour of a bag of platelets like mango chutney.

And they give good relief esp first thing in morning unlike any other drops I use.

[Hidden in reply to JediReject]

🧛😁. Ok .... so I would assume that this is done because using serum from our own blood is actually putting something back into our body to heal! Kind of like the idea of stem cell treatments? Sorry I have just never heard of this... it’s so interesting!!!

[mhos61 in reply to JediReject]

Amazing science!

[light in reply to JediReject]

I too have dry eyes. I would appreciate if someone could explain/share information where to go for this serum?

[JediReject in reply to light]

Hi Light, , I think it very much depends just how dry folks eyes are as to whether they might qualify as there is a scale of dryness and associated epithelial damage or renewal. Unfortunately mainly due to my stage 4 Graft Versus Host Disease I am at the top of the scale for severe dryness especially my left eye.

As Hunter points up there are numerous ways to help with dry eyes, some work for some folk but not others. I've tried many types of eye lubricant. I also have punctual plugs which have been in situ for a few years to block my ducts so moisture doesn't drain away. But just part of the solution.

I got my serum drops partly through my Haematologist who renews my prescription for them and partly through Manchester Royal Eye Hospital as part of my ongoing treatment.

By all means ask your Haematologist but also it might be worth trying some of the other available products probably on prescription rather than over the counter.

Regards Chris

[light in reply to JediReject]

Thank you for your reply. I used so many different drops proscribed by GP, Moorfield eye hospital and I still suffer with dry eye. My eyes are very sensitive and I think it all part of our MPN illness. Thanks for your advice will try with my Hematologist and see what will happen.

[hunter5582]

Sorry I do not know the answer to your question, but there are other options if you have not already tried them. I also have dry eyes and here is what I have tried.

1. Over the counter artificial tears - helps but not enough

2. Restasis - helped but not enough

3. Xiidra - could not tolerate due to blurred vision

4. Cequa - recently started - it does seem to be working far better

5. Punctal plugs - on the list to try. Will do the silicon version if Cequa not effective.

You are asking a very reasonable question. It is unlikely that the ophthalmologist will know the answer. I would run the question by a MPN Specialist (not just a regular hematologist). I suspect it would be OK as the HU is already in your body and if I understand it correctly is already passing into your lachrymal glands/tears. Best to be sure before proceeding.

Dry eye really is quite annoying. Hope you find a solution soon.

[katiewalsh in reply to hunter5582]

Thanks. Haven’t heard of Cequa will check it out. I have collagen tear duct plugs. Not beneficial yet but may take longer. My MPN specialist knew my MF wouldn’t be a problem for using my own blood but didn’t know effect of Hydrea. Good luck.

[hunter5582 in reply to katiewalsh]

Sorry to hear the punctal plugs did not help enough. Hope you find relief soon,

[Wyebird]

Hi I also have dry eyes I use viscose tears gel occasionally hypomelose( spelling) you get both from the local chemist in the UK

[katiewalsh in reply to Wyebird]

Thanks. I’ll look for them here.

[ALlady]

I am following this thread with interest as I also have ET and dry eyes. I have found some relief with xiidra but find the serum drops fascinating and will talk with my ophthalmologist about them. I am only on aspirin at this point.

[katiewalsh in reply to ALlady]

Good luck. Hope you find relief. Katie