blood serum drops next week (sjorgen)

[atta]

Hi all,
I've been so depressed for a month and now I'm having a new hope - blood serum.
I found out the university clinic does this for patients (in Germany) and I've read a post of a patient who has severe dry eyes in another german forum. She said she got a big relief with serum drops, after tried restasis, plugs, artificial tears. I was wishing she was occasionally also a sjorgen patient which would give me more hope but as far as I read from her post, she had eye operation and got dry eyes after that.
I tried to get some more experience reports here but didnt find much. 4 or 5 users have tried it and only one said it didnt help at all.
Someone suggests to try it if oral antibiotics work. As I read from internet, Restasis+serum should work much better than only restasis.
There are also posts sharing the medical issues of serum drops or restasis, which can be found by "search- serum".
Next Monday I will go to the clinic to take with the doctors and hope I can get them in a week.

[kimby2007]

Please keep us updated. I am also interested in blood serum as I also have Sjogrens. BTW trying DHEA and will let u know how that goes.

[Amy09]

you can also get the blood serum drops made in the US as well. i get mine done in houston.

[Lucy]

Has the serum drops been of help to you? Lucy

[atta]

Hi,
I'm in Germany . So I will do it here in my city. Its not hard to find a clinic to make this at all, anywhere. So I dont understand why so few people trying this. (As I know the cost should be covered, or at least much cheaper than Restasis, no risk either)
One more thing, there's a product called stemenhance (pills) in the USA, which was not selling to Europe a week ago on the website, but yesterday I saw they are doing international already (to Europe much more expensive than in dollars in the USA-around 50 Dollars to 40 pounds). Does anyone have good experience with it? There're some negative discussions online about it but I know someone used it and it did work well for 2 months.

[Amy09]

oh ok, sorry atta, I didn't know you were overseas from where I live!

Lucy, I am not absolutely sure of the results of the serum drops on my eyes because I began using them and using restasis at about the same time. however, my eyes have definitely improved over the last few years, so either the serum drops, the restasis, or a combination of both is helping. at the very least, the serum drops are very cold, so the cooling sensation makes my eyes feel nice when I put the drops in. Hope this is helpful!

[atta]

I've talked with the doctor today and she said I should try serum for a month. Serums do help some patients, but not all of them. After Sjörgen test she would give me some oral medicine. Unfortuenally I cant have my serum right away but need to go to hospital tomorrow and stay there for a night (A very stupid policy from the hospital, obviously for more money) to make them.
I tried to ask if this oral medicine works well for dry eyes, or at least for some patients. She didnt give me an answer but said she would only prescribe it after Sjörgen confirmation. It's kind of sad to have Sjörgen for young people. I've been suffering for about 6 years and that should be the best time of my life. And I need to spend a lot of my money on drops, plugs, searching in the internet for information...
I pray that Serum will work. And I will report my eye condiction asap.

[atta]

I got my drops!
I used twice already in 4 hours and I like them. My shirmer test (yesterday afternoon) was 0 and 0,5 and I cannot use artificial tears when my eyes get very dry because they hurt and burn my eyes badly and my eyes get very very red and serum works better in this aspect.
It's far too early to make a judgement because I read a thread with lots of discussions. I see the users who once profit from serum drops still suffer and search for other therapy.

PS
to be honest, I feel the drops "smell" like row beef and when I think they will flow down from the dusts to my throut I felt like throw up. ((

[Bunny]

Atta - I'm curious, what medium are the drops delivered in? I tried them delivered in Refresh Tears (only product the doc I had access to would use so they had the preservative feature to prevent contamination) and had a horrible reaction to them. Within two days I could not open my eyes and it has taken 4 months of 200MG/day of doxycycline to get me back functioning again. I blame the Refresh Tears, not the serum. If I could get them in a non-preserved medium I would try them again but I am in Missouri and do not know of anyone locally that will make them in saline or some other preservative-free solution.

Just curious what they are putting yours in?

[dnew85]

I think the serum drops are worth a try. I have been on theratears nutrition, restasis, Dr. Holly's drops, and tear duct plugs. I went to UT Southwestern in Dallas and got Blood Serum Drops (5 or 6 bottles) I believe they cost about $125. I have used them for nearly 2 months. They do seem to help but I have lost a lower plug in my left eye and it is bothering me to no end. Also, the redness and conjuctival veins still remain. Which are my major concern.
Take Care, DN

[stephgurl1986]

@ atta: please keep us updated about the drops. How were they made? How much blood did they need to make them?
Any news about your blood test and Sjögren?

[dianat]

Bunny,

My serum drops are prepared similarly to yours...in a preserved otc drop. Is there a drop that you can tolerate? Dr. Holly's drops...sold on this site...are preserved with his own preservative that may not bother you. I'm curious if these drops tolerate freezing. We could always ask him...

D

[atta]

I've been on serum drops (Restasis + serum drops) for 5 days. I feel my eyes get much better than 1 week ago, where I got severe inflammation and a lot of dryness. But there's no big differance to the time when my eyes were in good condition.
They give a lot of comfort and the redness is slightly reduced. I think its not placebo because after all those ups and downs, I'm cool inside.

My serum drops are pure from blood. They are transparent in color and in small glass, tinted. They need to be kept in freezing fridge. And the one opended and being used should be kept in fridge. That's very unconvinient to travel or bring around. I broght it to suiss this weekend with an ice baggy , at least 4 hours, and it seemed ok till yet. I got no infection.


@Stephgurl:
I dont know how much blood exactly. 4 or 5 full tubes ( around 20cl , I guess)
Till now I still have negative in my blood test. I'm waiting for the result of biopsy. Besides, I've read from the sjörgenworld forum that people use LDN to reduce the sjörgen symptom. And many people get dry eyes cured. Have you tried that? Last week I was very upset because they say dry eyes can only be cured when the symptom began shortly (one year max.) and my dry eyes startet at least 6 years ago.

[atta]

I've been on serum drops (Restasis + serum drops) for 5 days. I feel my eyes get much better than 1 week ago, where I got severe inflammation and a lot of dryness. But there's no big differance to the time when my eyes were in good condition.
They give a lot of comfort and the redness is slightly reduced. I think its not placebo because after all those ups and downs, I'm cool inside.

My serum drops are pure from blood. They are transparent in color and in small glass, tinted. They need to be kept in freezing fridge. And the one opended and being used should be kept in fridge. That's very unconvinient to travel or bring around. I broght it to suiss this weekend with an ice baggy , at least 4 hours, and it seemed ok till yet. I got no infection.


@Stephgurl:
Till now I still dont have negative in my blood test. I'm waiting for the result of biopsy. Besides, I've read from the sjörgenworld forum that people use LDN to reduce the sjörgen symptom. And many people get dry eyes cured. Have you tried that? Last week I was very upset because they say dry eyes can only be cured when the symptom began shortly (one year max.) and my dry eyes startet at least 6 years ago.

[atta]

Its been 2 weeks since I used blood serum. It doesnt work that well anymore. Redness remains and dryness went back to normal level.
I will keep on using it for another 2 weeks. See what will happen by then.
Besides, I will try LDN soon.

[atta]

This is the 20th day I use serum drops. In the last 3 days, I got some relief on both dryness and redness. Actually, the dryness is totally bearable now. And I hope to see more relief on redness. Now the redness is reduced 30%.

[atta]

It's been 3 weeks since I used Serum.
Day 1 - Day 4 ,relief of dryness,
The following 10 days, no relief at all, and getting more redness.
Then the following 3 days, relief of dryness(60%) and redness(30%)
Then for 2 days till last night, some uncomfort inside eye lids,like sand feeling, no pain, not itchy and redness is NOT getting worse at all. And the corner near nose was very itchy, its not inside eyes, but the outer of eyes. and no redness appear. It might also be the allergy. I stopped anti allergy pills and every time I sneeze hard, my eyes do get red for one or 2 minutes, but get clear again after a while.

PS: Actually I have a feeling that my dry eyes will leave me soon. I've always read bible every 2 days, and pray everyday that he would help me and I could go to church every week. But in the last week, I was asking God what he wanted me to learn from these days with dry eyes, and would he please help me to do my lessons fast so that he would remove my problem - God always has good wills to his people, but sometimes he would use hard situation to do some teaching. After this pray, I got a lot of strength, and a lot of belief, at the same time, my sjogren test result came out and it was negative. Without the last weeks "talk" with God, I would be very nervous and would seek for another diagnose. But now I feel safe to stop all my prozesses, I gave my life to God, and he would do the things that needed to be done.
The experience above doesnt seem to match in this forum, but I just want to be honest, and reporting what was happening to me, to my eyes in the past time, this spiritual experience just comes along with serum therapy.

[stephgurl1986]

wow, atta, that sounds really good. Please keep us updated, I'm very curious. Did your doc say how long it would take to see the max. reflief that you could get from the serum drops?
When you say your dryness has improved, can you measure that in drops? e.g. before I used X drops/hour/day, and now I only have to use Y drops.
Another questions: How often do you need to remake the drops? And how long is that procedure?

[atta]

No, the doctor didn't say how long it might take to see a max. relief, not even promising that it would give any relief.
Last Decemeber till I got serum, my eyes were very very dry and I need to drop every 10 minutes when theres no inflammation(doxycycline oral). And with inflammation I need 4 or 5 drops(thick drops for extrem dry eyes.) Now I dont need any drops.(2 restasis+6 to 8 times serum) And comfort most of times. Occasionally I got dryness and then I will try to yawn, and got a lot of tear. Before I use serum, tears wont come down when I yawn after 3 pm.
I think the serum made is enough for at least 6 weeks.
I dont have shirmer test inbetween, I would check it after another 2 weeks maybe.

[stella]

I dont want to turn this into a "religious " chat room , but i have to say that i think the reason that i am sooo much better is because i have consistantly prayed and asked God to heal me and He has shown me what was needed for my particular case ie antibiotic ointment + an unusual way of unblocking my eyelid glands by squeezing both sides of the lid between my finger and thumb ( dont try this unless you have heated the lids first and washed your hands and have short finger nails)
It is certainly working for me ( I think i am a definate case of MGD but was diognsed too as being aqeous deficient) Whatever --- i am much better and hardly ever use eye drops now
If God can do this for me -- He can do it for anyone

[atta]

Well after about 8 days stable status. My eyes get worse again, till now its been 4 days. I dont know if its like immune system cycle. Its like now I was attacted by myself again.
To be honest, I was almost "killed" by the redness I got.

It seems that my body need some medicine to control the immune disaster. I got all negative results but its hard to believe that my immune system is ok. I decided to try LDN, of course I've been sure that God is behind my decision.

ps - Very touching tape recorded on 17. Jan, 1993, when a miracle healing from God happend on a pastor, who was just teaching!
http://fr.youtube.com/watch?v=72p9Qnfh4vk

[atta]

Today my eyes get better again. (comfort and less redness) I had 5 bad days.

I got prescpripation for LDN and in between I found I got Candida. So I might try to kill those yeast in my body before I start LDN. I made this decision because Candida can also cause my symptom - sicca (dry eyes, red eyes), dry mouth and skin, joint pain, depression,sleeping problem. And Candida might stop the normal work of LDN.

[stephgurl1986]

Who prescribed you LDN? And how did you find out about candida?

[atta]

I looked up in LDN Forum home for some LDN information. As I wrote there that I got no diagnose for autoimmune diease, someone said I might have candida. And candida may cause Sjogren-like (autoimmune diease-like) symptoms. Including dry,red eyes, depression, joint pain, muscle pain, ect.
LDN doesnt help to get rid of the yeast. But candida can stop the work of LDN.
Here is the simple test of candida.
http://www.rainbowminerals.net/candidda_test.htm

I got LDN prescription from my hausarzt. I showed him the information from internet and the second time I met him, he refused me because the availabe dosis is 50mg. But after 2 hours he called me and said if I made a contract him, writing down that I'm willing to make this therapy and take all the response of the result.

Well, I got the prescription but the price is very high (28 capsules 104 Euro). So I havent bought yet, I want to try medicine against candida first.

[atta]

Besides, havnt you tried some oral medicine against sjogren? If you got diagnosed, you could try plaquenil, which helps dry eyes and other symptom of sjogren and its function is well studied, not like LDN.

[stephgurl1986]

Thanks for the info.
I'm not diagnosed with Sjögren (yet), I have to make blood test every 6 months...

[atta]

In the last 3 days, my eyes are at the best condition since 2 years. I really got tears occasionally(seldem) even when I dont yawn and that feels like a cooling sensation and I dont feel they falling down at all. Since last week my condition was bad, I guess there will still be some bad period in future.
I get a lot of white things around my eyes in the morning. And after Restasis, I got some excess tears. Obviously I still have inflammation. But its a good sign that I got tears in the night and in the morning, which wanst the case before.
I dont know if Nystatin (against candida) starts to work already(Its been 4 days). And it might also help a little bit.
@stephgurl
Sorry I made a mistake. If you think you might have sjögren, you should have both blood test and biopsy test (done by the dentist).

[stephgurl1986]

@ atta: I was wondering how you are doing now? Did you get rid of the candida? I made several tests and the doctors found out that I have lots of candida. So I started taking tablets with Nystatin today... Please just let us know about your improvements!

[Janice]

I also have Sjogren's syndrome. I have been going through the worst time I have ever had. Both cornea's have ben inflamed. painful and difficult to see. The Dr. has been working with me for two months. Have been using lotamax eye drops along with tears. He wanted me to try the serum made with my own blood. I finall gave in and said I would try. He makes them. After 3 days I was getting some relief. I have been on them for about 3 weeks You get a three month supply. One little bottle last about 10 days. Expensive but worth it to get some relief. They are not FDA approved that is why we can't get them here. Good luck I have fought this problem for years. But this time it has been terrible. I was told to wear sunglasses also. I wear glases had to get the kind that fit over my glasses they have them at Walmart. My vision isn't all the way back to where it should be but getting there. If you can get the serum it is worth the try. Good luck Janice

[Janice]

Atta, I also have Sjogren's and have had for several years but for the last few months this has been the worst. My eye Doctor is about to throw up his hands (not really) I have tried lotamax eye drops, restasis, tears. Nothing seemed to help. I had trouble keeping my eyes open and they hurt. Eye lids were red. I also wear wrap around sunglasses. I wear glasses these fit over my regular glasses. I am trying the serum that they make out of your own blood. I do understand they use them in Germany but not FDA approved in the US. My doctor makes his own, he set up his own lab. Little expensive but worth the try after trying everying else. After using them for 3 days I could feel a difference. I have been on them for three weeks and go back to see the doctor the 3rd. Since both my cornea's were inflamed I hope he sees a difference. I was told my upper oil glands were completly blocked so he scraped them and that did help. My bottom tear ducks are sealed. I am still on the Lotamax eye drops and the serum, and take fish oil everyday. I seem to spend the day puting something in my eyes. I hope you get to feeling better this is a miserable problem. To make things worse there is no cure for it.Take care and let me know how you are. I am new to this site Janice