Author Topic: Hi everyone - sero negative Sjogrens  (Read 15418 times)

soycoffee

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Re: Hi everyone - sero negative Sjogrens
« Reply #30 on: October 31, 2011, 11:23:24 PM »
Excellent info - thank you for that.

Is Salagen a prescription only medicine? I am seeing my GP next week so will ask about it, I carry Biotene in my bag as well now.
. . . .

If you search on Salagen, which is a trade name, not the generic name, you should come up with the generic name. I think *that* woud be a name you can take to the apothecary/chemist in Perth (or the doctor) to get a similar product -- one or the other might even suggest a better product. This was the first product to be offered specifically to increase saliva production.

Good luck,
Soycoffee

Corella

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Re: Hi everyone - sero negative Sjogrens
« Reply #31 on: November 01, 2011, 06:19:42 AM »
I had a read and it said caution with asthma - I wonder why that is?

I have had a terrible day today - I had a meeting in the city, it was a hot sunny day, I had my sunblock but no hat.  Within minutes of walking to the station, my eyes had dried up and my vision was awful, drops in every 5 minutes.

In my appointment, my throat kept drying out and I kept choking, I bought water with me, drank it but as fast as it was going in, I was drying out.  When I left the building I had a rash on my cheeks, I felt sick/dizzy and my eyes felt enormous and burning/gritty - I used up a whole small bottle of drops.

Is this how my summer is going to be, how does the sun do this to me - I cant believe it :( It isnt as though I can stay in during the summer, that is no life at all.

Sorry for moaning - been a crap day and I could cry, oh I cant - got no bloody tears for that either.

(stomps off into the kitchen)

jasonsmith

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #32 on: November 01, 2011, 09:09:45 AM »
What all tests are you going for Sjogren's? My Rheumy gave me a list of more tests. Some of which I dont' think I've ever had done before. Though I'd much rather have treatment for Sjogrens instead of more and more tests that don't go anywhere.

babsinga

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Re: Hi everyone - sero negative Sjogrens
« Reply #33 on: November 01, 2011, 10:19:13 AM »
Hi Corella,

I am new here as well. My rheumy diagnosed me with subacute cutaneous lupus and sjogrens. There are lots of overlap syndromes and it is common that folks with sjogrens have other autoimmune disorders as well. Just like you, I am photosensitive and get rashes on my face and psoriasis like patches on my head as well. I had a positive ANA and anti-SSB. All of the symptoms you mentioned are common from what I understand. Many of the features of systemic lupus are similar in Sjogrens. Hang in there and welcome!!

babs in ga


jasonsmith

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Re: Hi everyone - sero negative Sjogrens
« Reply #34 on: November 01, 2011, 10:40:58 AM »
The big problem is trying to find a doc that will treat for Sjogren's when your bloodwork is good. That's what I've been dealing with as the docs can't answer what else it could be other than Sjogren's. But they don't want to treat Sjogren's other than something like Pilocarpine. I guess they much rather you rot than try fairly safe treatment to keep you from getting worse.

I think doctors nowadays rely too much on bloodwork. They tend to not care about the symptoms, just what the bloodwork says. I've had docs tell me there was nothing wrong with me because my bloodwork is good.

arina83

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Re: Hi everyone - sero negative Sjogrens
« Reply #35 on: November 01, 2011, 11:29:48 AM »
I agree jasonsmith. I'm in the same boat. Symptoms of AI disease, normal blood work and abnormal chest xray. Though the 2 doctor's I've seen couldn't even recognize the chest xray was abnormal!

Corella, I've totally been there. Really want to cry... but I have no tears (which them makes me more upset).

jasonsmith

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #36 on: November 01, 2011, 11:41:07 AM »
I agree jasonsmith. I'm in the same boat. Symptoms of AI disease, normal blood work and abnormal chest xray. Though the 2 doctor's I've seen couldn't even recognize the chest xray was abnormal!

Corella, I've totally been there. Really want to cry... but I have no tears (which them makes me more upset).

A Rhuemy gave me a list of bloodwork to get done. Looks like after a discount it will be around $500. Some of it I don't recognize ever having had done before. But I may start a thread seeing what bloodwork others have had and whether the tests look like they would be good to have. Though I'm thinking it will be a waste and the bloodwork come back normal like it usually always does.

4Kids

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Re: Hi everyone - sero negative Sjogrens
« Reply #37 on: November 01, 2011, 02:31:59 PM »
Hi, I am sero negative and I too have seen the Queen! And  Prince Philip, and Charles S well. I live in canada though.

I had a severe attack in April and May which left me w no saliva. I got salagen two months later, and i am not a hundred percent but it helps. I would def try and wait and be patient.
Plaquinel, Restasis, Salagen, Arthrotec, Cod Liver Oil, B Vitamins, Palafer-C, Plaquinel, Metformin, Spironlactone, Biotin

Narablueeyes

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #38 on: November 01, 2011, 04:05:09 PM »
I had a read and it said caution with asthma - I wonder why that is?

I have had a terrible day today - I had a meeting in the city, it was a hot sunny day, I had my sunblock but no hat.  Within minutes of walking to the station, my eyes had dried up and my vision was awful, drops in every 5 minutes.

In my appointment, my throat kept drying out and I kept choking, I bought water with me, drank it but as fast as it was going in, I was drying out.  When I left the building I had a rash on my cheeks, I felt sick/dizzy and my eyes felt enormous and burning/gritty - I used up a whole small bottle of drops.

Is this how my summer is going to be, how does the sun do this to me - I cant believe it :( It isnt as though I can stay in during the summer, that is no life at all.

Sorry for moaning - been a crap day and I could cry, oh I cant - got no bloody tears for that either.

(stomps off into the kitchen)

Moan all you want.  You. Need to let it out and to have someone hear you.  You matter.  And I hear ya.  You're in my thoughts and meditations.

Corella

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #39 on: November 01, 2011, 07:58:37 PM »
The big problem is trying to find a doc that will treat for Sjogren's when your bloodwork is good. That's what I've been dealing with as the docs can't answer what else it could be other than Sjogren's. But they don't want to treat Sjogren's other than something like Pilocarpine. I guess they much rather you rot than try fairly safe treatment to keep you from getting worse.

I think doctors nowadays rely too much on bloodwork. They tend to not care about the symptoms, just what the bloodwork says. I've had docs tell me there was nothing wrong with me because my bloodwork is good.

Im lucky, my eye specialist diagnosed Sjogrens straight away, followed up by my dentist - my rheumy was going to wait and see as my ANA and CRP went back down to normal but with the other two experts giving their opinion and the eye doctor saying he has seen it so many times before, an immediate diagnosis was made.

Is it an optician that does the baseline tests for Plaquenil or should I ask my eye specialist when I see him mid November?

jasonsmith

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #40 on: November 01, 2011, 08:13:12 PM »
The big problem is trying to find a doc that will treat for Sjogren's when your bloodwork is good. That's what I've been dealing with as the docs can't answer what else it could be other than Sjogren's. But they don't want to treat Sjogren's other than something like Pilocarpine. I guess they much rather you rot than try fairly safe treatment to keep you from getting worse.

I think doctors nowadays rely too much on bloodwork. They tend to not care about the symptoms, just what the bloodwork says. I've had docs tell me there was nothing wrong with me because my bloodwork is good.

Im lucky, my eye specialist diagnosed Sjogrens straight away, followed up by my dentist - my rheumy was going to wait and see as my ANA and CRP went back down to normal but with the other two experts giving their opinion and the eye doctor saying he has seen it so many times before, an immediate diagnosis was made.

Is it an optician that does the baseline tests for Plaquenil or should I ask my eye specialist when I see him mid November?

Some on the board disagree. But I'd see an eye specialist over an optician. There are alot of eye docs that miss plaquenil toxicty. So, I'd try and see the most experienced and schooled eye doc that I could. Some see a retinal specialist.

They say toxicity is rare and you have to be on it over 5 years to even get it or be taking high dosages. But the shortest toxicity I've read is 6 months, and that was on 400mg a day. I'd also do the Amsler grid test and color blind test that is recommended to have done to check eye vision. I'd probably do it every week. If you notice any vision changes or something show up on the home eye tests, I'd stop Plaquenil and see an eye doc. But I'd recommend to be careful as some seemed to have noticed vision changes. But their eye doc said they didn't see anything. Then later on their eyes got worse and I don't know if it was a different eye doc. But they saw an eye doc later on who saw the plaquenil toxicity.

If I got on Plaquenil, I'd probably take breaks from it if I could. Or at least rotate to something else for a while. I had read of some docs talking about doing the Chloroquine 6 months on and 6 months off to help avoid toxicity. Though it seems toxicity is more of a problem with Chloroquine than with Plaquenil.

Corella

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #41 on: November 02, 2011, 01:51:36 AM »
Thanks Jason, Ill have a word with the eye doctor.

Just when I thought my punctal plugs were going great guns, it has been 32 degrees in Perth today and I have used nearly a whole bottle of eye drops - it is challenging my plugs to the max.  I get two more put in on the next appointment but I think he may change the drops as Systane Ultra and Polytears are just evaporating as soon as they go in, although what is more efficient I dont know.

It is costing so much already, you know if you dont pay your mortgage they repossess your house, well its a shame if you dont pay for your Rheumy appointments they cant repossess your sjorgrens. :P

It is going to be a long hot Summer and I know it will make me sick.

Oh well, I will at least give the plaq a try and the short course of Dexamethasone for pain - panadol Osteo is good for night pain but during the day its harder to control.

I am going to have a glass of wine tonight as a treat :D

Still in the hunt

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #42 on: November 02, 2011, 12:35:55 PM »
Make it two glasses of wine if it doesnt dry you out to much,, I loved having that glass of beer,, but cant anymore

Corella

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #43 on: November 02, 2011, 06:25:29 PM »
Did any of you get a moment where your diagnosis sort of hits you and reality sets in?

Well last night I lay in bed feeling awful from being out in the sun - wearing a hat etc, my lungs were stinging when I took a deep breath, the drops in my eyes were lasting 4 minutes (with plugs), and my mouth was as dry as anything and my body sore.

I just lay there dosed up on painkillers, just taken the biotene and thought 'this is it, no cure - this is it, my bloody hair is falling out although not noticeable - yet (except on the floor or in the shower).

I wanted to cry, but tears are on ration and saved for special occasions and if I really get desperate, I can put in polytears and cry them out!!!

It was the sort of reality kick when you realise this is it - this is what you have and whilst others have far worse, you have to get used to living with this 'hostile squatter' that has taken over your body.

And it scared me and still does.

 :-[

Narablueeyes

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #44 on: November 02, 2011, 07:49:07 PM »
Did any of you get a moment where your diagnosis sort of hits you and reality sets in?

Well last night I lay in bed feeling awful from being out in the sun - wearing a hat etc, my lungs were stinging when I took a deep breath, the drops in my eyes were lasting 4 minutes (with plugs), and my mouth was as dry as anything and my body sore.

I just lay there dosed up on painkillers, just taken the biotene and thought 'this is it, no cure - this is it, my bloody hair is falling out although not noticeable - yet (except on the floor or in the shower).

I wanted to cry, but tears are on ration and saved for special occasions and if I really get desperate, I can put in polytears and cry them out!!!

It was the sort of reality kick when you realise this is it - this is what you have and whilst others have far worse, you have to get used to living with this 'hostile squatter' that has taken over your body.

And it scared me and still does.

 :-[

Well, I don't have an official diagnosis YET but yeah.  When I see my hair all over my pillow or in the shower drain; arms hurting, legs hurting, teeth & jaws hurting; being so dang sensitive to every med my dr prescribes; fatigue that turns me into the wench from hades; I hear you.