A couple weeks ago, I had eye doc. do upper punctal plugs. Had lower ones already. My eyes were driving me mad. Have been on Plaquinel a mo. now and am actually seeing positive benefits in knee joints. Actually walked the dog a very short distance, no cane or walker! But now that I have all 4 ducts plugged I actually have tearing going on all the time from both eyes. Love the moisture, though eyes still burn and hurt. Yet with all the tearing it makes reading a computer screen or book very hard. See eye doc. Mon. Will probably remove a set of plugs. Think maybe between the Imuran and Plaquinel and flax/fish oil the eyes are making progress. Is sure nice to not be putting drops in anymore.
As far as neuropathy symptoms- they are still plaguing me. Cannot get rid of all this dang burning and worse now in hands and feet. I am getting records copied and thinking of going ahead and scheduling with Birnbaum as my rheumy does not feel the SJS treatments will help with PN. The neuro is completely leaving it up to rheumy as he says EMG looks normal. Why is it so hard to get doctors to look beyond what they know???
On another up note, started Amitriptyline at night, and am sleeping better at 20mg and may bump up to 30mg. Still hurting and using icepacks, but usually don't awaken as much.
Has anyone else experienced too moist of eyes with all 4 plugs in?
Hang in there,
Karin
Karin, often when first quadra-plugged your eyes will overflow with tears. It's called ephiphora. ;D
Truth is that this is often temporary. When a new plug situation is experienced, ie. more put in, one set taken out, the eyes need more time to settle down. I've experienced this myself and know others have too. There is nothing worse than having them taken out too soon and realize, darn, wish I had wated longer to find this out.
There is an excellent website about dry eyes and has info that might help you on there. I have no interest in the site except I am a member, just like here. It's dryeyezone.com (http://dryeyezone.com). Lucy
Hi
When I had the upper plugs done, I too was plagued with too many tears. In fact I got sore cheeks, as my eyes were too wet all the time, and if I inclined my head down, the water would just drip on to my desk or table (which was a little embarassing), as was strangers asking if I was ok, as I had to wipe my eyes constantly, at first.
They did settle after a while, though, so I hope yours do too. xx
Hmmm,
Thanks for the insight, maybe it's best to let it be for a while. Hate to have them pulled and then regret it.
Karin
Hi Ive got all 4 plugged..and I still drop..however my eyes get wetter and dryer all the time..so sometimes I drip a fair bit..and then sometimes I grab a vial for a couple of drops to loosen it up again.
Its all very hard as we are all different and you cant just turn the wetness volume up and down...you are either plugged or not..I reckon waiting a little longer is a good move...just incase it settles a bit.
Almost forgot..I too get burning in hands and feet..my EMG is clear to..and yeah my neuro and Immuno and rheumy just leave it at that..no diagnosis and oh 'have I thought about seeing a phsych' lol...ahem are we all here crazy..are we all imagining our symptoms I dont think so...lol
All me best
Karin, I only have the lower plugs, use Soothe drops occassionally, also on Plaquenil and flax oil. The Plaquenil did wonders for me - after about 4 months I really reaped the benefits. I also have trouble sleeping and my rheumatologist put me on Restoril. Lets me sleep and I am not groggy the next day. This week I am dog sitting for a friend and the dog ate my perscription. Near as I could figure she ate 12 to 15 pills. She was stumbling around and I was so worried when we came home and didn't know how long it had been. She slept all afternoon and when she woke up she was fine. She is a Pit Bull and not a small one, but really good temperament. I called her owner and he said if she died he would bury her when he got home. (Sad) So anyway, last night I didn't have any sleeping pills - I was awake all night and couldn't get any today, so I suppose I will be up all night tonight too. Hope your eyes get settled, it is terrible to not have any tears, but also terrible to have too many!!
I had the uppers and lowers for about six months. My eyes watered all the time and still ached and burned, plus I work at a computer all day. Like some of the others, the watering made my cheeks soar and the constant wiping from tissues irritated my skin. I had to uppers removed. I wish I could get a doc to give me the plaqeniel, but I am seronegative. I wonder if it would help with my eyes!
I dont think Plaq would help with the eyes...please if it has helped anyone please chime in
Karin:
I had mild burning in my hands (probably not as severe as what you describe or experience) and I took Alpha Lipoic Acid which you can find in a health food store. The burning would stop within an hour of taking it. And I have not had any burning for many months now. I have since read that Alpha Lipoic Acid helps damaged nerves regenerate.
Hope this helps,
Sue
Plaquenil generally helps with the overall effects of SjS by limiting the inflammation that the immune system causes...at least that's one of the theories. I've found, over the 5+ years that I've been taking it, that all of my symptoms, eyes included, have improved...not by leaps and bounds for sure, but I'm generally less uncomfortable than I was before I started taking it.
I agree with Linda, I've been on Plaquenil for 4 years and like Linda it has helped my overall symptoms. I think the flaxseed oil helped with my eyes too.
I have lower plugs and one doctor said I could try upper ones, but my regular ophthalmologist said I would find I teared too much, so I didn't do it. I would be interested to see if you find this improves for you.
Terri
Quote from: Sjenny on May 20, 2009, 10:29:47 AM
Karin:
I had mild burning in my hands (probably not as severe as what you describe or experience) and I took Alpha Lipoic Acid which you can find in a health food store. The burning would stop within an hour of taking it. And I have not had any burning for many months now. I have since read that Alpha Lipoic Acid helps damaged nerves regenerate.
Hope this helps,
Sue
Interesting Sue...just so happens Ive had my left palm burning since this morning..now evening...Ive just taken a couple of ALA supplements (I had some in the cupboard from a year ago)..will see if it helps stop it.
Cheers
Hi Kindandcaring!
Hope it works for you. Let us know. Also, have you ever had your B12 levels checked? Low B12 can cause nerve problems - however most B12 supplements you can find in the grocery store are useless since they are poorly absorbed by the body. To correct B12 levels, you need either the shots from a dr or sublingual methyl B12 tablets.
Sue
I have lower plugs but they weren't enough to help my eyes from being too dry, especially my left eye. So, in the left eye, upper punctum, I get the dissolvable 3-6 month collagen plugs. We are currently using the Herrick 6 month plug. Anyway, this keeps my eye much more comfortable. When I tried a permanent in the upper punctum, I had terrible tearing that lasted the whole three months I had in and my eye starting feeling inflamed. This dissolvable does not do that. My insurance covers it. This was my idea and I had to be somewhat aggressive in suggesting it. My eye doctor said he did not have anyone else who did this but I insisted this is my best option at this time. Give it a try. It has made a world of difference for me.
Anna
Thanks for all your replies. My burning is nonstop and totally interferes with everything. Ice packs all nite long, no sleep. Going to neuro again today. I want to throw in the towel the pain is so bad, now into my face, numb too.
Dissovable plug sounds like a great idea because the tears are too much.
Anyone have any luck getting a neuro to try anything on bad neuropathy? IVIG has helped in past, maybe Cytoxan? But without a positive EMG they look the other way. The rheumy I don't think will branch out and try much else either. Does getting an immunologist involved help? Never been to one.
I will try to get into see Birnbaum at JH, but will they then listen to his recommendations?
Sick to death of this disease,
Karin
Karin
I will you to get a particular specialist who will be open to options for you..and hope one of them will roll up their sleeves and help more...hope you have appointments soon so you can bring this up with them.
Sue
I have antibodies destroying my parietal cells (stomach lining) so if I dont supplement I start to suffer symptoms of PA...I take sublingual up to 5000mcg and so far have avoided the intramuscular jections.
However these neuro symtpoms I have are not PA...ans are not in my mind..(thanks doc lol)...will see how the ALA goes over the next few days
All my best
Karin
Sue
my eye doc is highly against having all 4 ducts plugged. I did try it, and it was terrible. I had more eye infections than ever, and it was
miserable..hot, teary stuff running down my face all the time. I left two lower plugs in and that worked much better. Infections cleared right away.
I had the temporary plugs put in today and so far, my eyes feel better, but I have NO tearing. Should I? My Shirmer test was 0 in one eye and 0.1 in the other eye.
Also- I see you guys talking about Flaxseed oil and Fish oil???? for SJS. Does this help- if so how much are you taking?
I just started my Plaquenil today too...even though I have Macular Degeneration in the left eye. Seeing the Retina Specialist June 4th- but Opthalmologist said to go ahead and start the Plaquenil - that they would probably need to see me more often though.
Just having too much "fun" with my SJS "friend"! ;)
That is an interesting approach to trying the temporary plugs in the upper ducts. They put the temporary plugs in my lower ducts just to see if it would help and if I could handle them. I did fine, so they put the permanent ones in.
As far as neurological issues go, the neurologists I saw said since they couldn't see anything in testing that the only thing they would do for me is symptom relief with Neurontin. I chose not to take it. I worry about the neurological symptoms and what is happening to me or if damage is taking place. Things sort of change from day to day though. Pain in my neck, tingling and fibrations, occasionalweird startle response, teeth feel numb, ears ring and burn, fasciculations sometimes. Where does it stop??? The neuro just sent me back to my reumy with no further follow up. The ENT I'm seeing I think is wondering about some of my other issues. I'm tired of worrying and tired of all of it really.
Terri
Terri
Im with you..! all these speciailists yet all seemingly clueless...yet we knowits not in our heads..we are stuck with the situation with having to just have put up with it...
Diagnostics has a long a way to go IMHO
Terri,
I'm with you also.
The burning is almost intolerable. It is everywhere. Plus my butt is always clenched up & in pain. I have a major spasticity problem which is usually controlled with a Baclofen implanted pump, but it doesn't help completely. So dang fatigued and taking way too many meds which make me more tired, but in too much pain to rest.
Neuro felt like burning was a sjogren's flare, did not even evaluate/examine me. Rheumy disagreed and felt burning was just something I needed to live with, part of my 'um history'. Have gotten all the notes gathered for Birnbaum. They all point to me as just some hysterical, psychosomatic. I've gotten no where accept convincing them that I have Sjs. Once I see Birnbaum, will they believe me? I am searching out docs from Kansas Univ. Hosp. Both rheumy and neuro that could maybe work together and not be intimidated by advice from JH. However, this whole thread of 'functional component' began with a specialist at KU, so I'm leery about even bothering. Thinking they are the only place that would treat a disease more aggressively, then again maybe not. Why is it so blasted hard to get decent healthcare, even in a major city??
Hoping for relief soon, because this is bad. Still have all 4 plugs in and tearing is non-stop. Will go again and ask about temporary plugs, unless Plaquinel and Imuran have kicked in and helped and I can get by with lower plugs only. Such a guessing game.
The bladder pain is once again rearing its ugly head. Does anyone else suffer from interstitial cystitis? I am wondering if this is what I have. If so I'd like to talk with you about it.
Karin
Hi Karin
Sorry to hear things are so tough. I think your cry from the heart - why is it so hard to get decent healthcare? - echoed round the world! Doctors have lots of 'toys' to play with but once they've got the MRI results, or whatever latest 'toy' they've used, they don't seem to be able to take a really good look at the person.
There have been some good posts here recently about cystitis. It seems to be one of those things that most of us have had at some time, but that becomes a major issue for others. Do you think the cystitis is part of the cns issues you have? Katybarstool has had surgery recently but I'm sure she'll have helpful things to say when she's back on the boards. Others have had positive results with things like cranberry juice; some people find antibiotics used carefully can sort the problem out.
Take care - Chickpea
Chickpea - you mentioned cranberry juice for the urinary issue. Something that works fairly and you don't have to drink so much juice is cranberry pills. I get them at the health food store. You should drink lots of water though, so maybe the juice is just as good?
Terri