Author Topic: Hi everyone - sero negative Sjogrens  (Read 15421 times)

Corella

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Re: Hi everyone - sero negative Sjogrens
« Reply #45 on: November 03, 2011, 03:43:36 AM »
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.

I thought I would be relieved with a diagnosis, especially as being sero negative makes it harder, my rheumy initially thought I was sleep deprived through snoring and referred me for a sleep study.

And I was relieved but now I am scared.

Luckily with the hair I have plenty but no woman likes to see her hair falling out.

Do you reckon you will get a diagnosis Nara? I hope you do - its like knowing the enemy once you know if that makes sense.

kelly

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Re: Hi everyone - sero negative Sjogrens
« Reply #46 on: November 03, 2011, 06:23:33 AM »
I saw a new primary doc yesterday who stated that there are no more sero-negative sjogrens because the tests are so much better than they used to be.  So, I have the symptoms but lab tests are negative.  She also said that no one really does the lip biopsy's anymore.  She was very concerned, and caring and she listened and she did say that it will take some time to determne what is going on so not to get discouraged.  She diagnosed me with Fibro(already knew that was coming) so anyway, it is what it is.........

Corella

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #47 on: November 03, 2011, 06:27:21 AM »
I saw a new primary doc yesterday who stated that there are no more sero-negative sjogrens because the tests are so much better than they used to be.  So, I have the symptoms but lab tests are negative.  She also said that no one really does the lip biopsy's anymore.  She was very concerned, and caring and she listened and she did say that it will take some time to determne what is going on so not to get discouraged.  She diagnosed me with Fibro(already knew that was coming) so anyway, it is what it is.........

Thats quite worrying, my eye specialist said he has seen it time and time again with Lupus and Sjogrens, one minute the results are positive and the next they go back down but can take a few years to show up and the patient and the symptoms should be treated, not the blood results.

My rheumy agreed with him as well, back in March my bloods were not normal, now they are and the specialist was saying that even patients that have tested positive for Lupus/sjogrens, you could test their bloods again and it could be different.

I just cant wait to start treatment now, the humidity is making me ache like heck and I really do feel very unwell. :(

Narablueeyes

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #48 on: November 03, 2011, 06:58:29 AM »
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.

I thought I would be relieved with a diagnosis, especially as being sero negative makes it harder, my rheumy initially thought I was sleep deprived through snoring and referred me for a sleep study.

And I was relieved but now I am scared.

Luckily with the hair I have plenty but no woman likes to see her hair falling out.

Do you reckon you will get a diagnosis Nara? I hope you do - its like knowing the enemy once you know if that makes sense.

My last labs showed normal results whereas the labs before that showed differently.  This time, I finally got my Vit D up to 45!!!  Woohoo!!!  She still wants me to get a scialagram done but this jerk of a doctor will not call me to set up an appt!!  She said I'm the only one of her patients that has not been able to get in to see him.  Unreal!  I hope I get a diagnosis soon though.  It would help.  Me and my PCP did catch an ear infection in the making and she started me on antibiotics.  She thought the trazodone wouldn't be a good idea since i already have heart issues and she suggested amyltriptoline.  I guess I have to suggest that to my rheumy. 

Still in the hunt

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #49 on: November 03, 2011, 07:25:12 AM »
amazing what one doctor will prescribe,, nd then see another one and they prescribe something else,, no wonder we get sicker,, half the time we dont know what these meds are doing to out bodies,, make sure you know the interactions,, I heard the other day that tehre has been a 300% increase in deaths from medications,, mostly fom the opiods,, thats why doctors are so cautious about handing them out,,

kelly

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #50 on: November 03, 2011, 08:20:19 AM »
Corella, I know what your saying.  I have also had a positive ana of 1:160 twice, but "you know that even healthy women will have a positive ANA" yeah, well, are they having these symptoms!  Anyway, I am going to try and see a new Rheumie after the first of the year when my new insurance kicks in so maybe, I will find one that is not so "in the box".  In the meantime, I will rely on you guys to help me out.  She gave me tramadol and neurotin, which I have tried neurotin before and it makes me goofy and sleepy but were doing a low dose and very slowly increasing it.  I will try it, winter is coming on and I so do not do well when its cold. 

Corella

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #51 on: November 03, 2011, 04:52:21 PM »
I have found that taking two mersyndol night strength in the morning helps with that awful pain and stiffness I get, 'Oh but its habit forming, have you tried Panadene forte?' the chemist says, well I cant touch panadene forte and I am afraid anything that works is habit forming.  I am so used to mersyndol I dont get sleepy or have those effects.

I cant take NSAIDs, Celebrex was really good but made me wheeze, I now take panadol osteo at night and that helps a lot - in humidity though its awful.

Last night was bad, I feel like my lungs are drying out and when I cough I can feel burning/tight pains in my back on the lung part like I am pulling my lungs apart, I was coughing all night taking sips of water and when I woke up this morning it felt like I had bronchitis but after a hot drink and I could clear my chest its better.

My rheumy has a 3 month wait in between appointments, he is so busy - I feel really alone in this actually, but at least he has respected and taken on board the diagnosis of my dentist and eye specialist to give me a diagnosis.

I cannot take any sleeping tablets at all - even Lorazepam give me a dry mouth, I get quite chesty when I take anything like that.

We are just starting Summer in Perth and I actually feel quite nervous of that because my eye plugs are challenged to the max and the sun makes the symptoms worse, I hope it doesnt mean I have to stay in all the time, I love going for a swim in the ocean.

I wish there was a support group where I live, I think there is one for Lupus but I dont know if they meet up or anything.

Oh well, I have my college graduation to look forward to, I shall get my hair done and it had better not fall out because its costing me a fortune!

connectedvisions

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #52 on: November 08, 2011, 09:43:44 AM »
Becky,

I noticed in your post that you experience much difficulty with dry eye symptoms, and that you have tried many treatment options to deal with the pain and discomfort.

I am wondering if you have heard of PROSE treatment? I wanted to introduce you to this treatment if you had not yet explored this as an option. Prosthetic replacement of the ocular surface ecosystem (PROSE) is a pioneering medical treatment for complex corneal disease that was developed by Boston Foundation for Sight (BFS), and has an 85% success rate for individuals with Sj?grens syndrome.

In fact, many patients of BFS who also have Sj?grens have reported using numerous treatments similar to you ? including topical immunosuppressants, lubricating gels and ointments, punctual plugs, and more. In a survey of these patients, they often found fairly limited success with the above treatments, and yet the vast majority of these individuals reported experiencing ?significant? improvement in dry eye symptoms from PROSE treatment.

If you are interested in learning more, here are some relevant links:

?   Overview of BFS and PROSE Treatment: www.bostonsight.org/About-PROSE
?   PROSE Treatment for Sj?grens syndrome: www.bostonsight.org/sjogrens

Feel free to contact me if I can answer any questions for you about PROSE Treatment.

Wishing you well,

Janice M. Epstein
Online Community Advocate
Boston Foundation for Sight
connectedvisions@bostonsight.org

QueenV

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Re: Hi everyone - sero negative Sjogrens
« Reply #53 on: November 08, 2011, 02:12:27 PM »
The best thing I've found for my dry, sticky throat is a product called "Spry Rain Oral Mist." It beats the heck out of Biotene and the larger bottle comes with a purse sized spray. My dentist actually recommended it.

http://xlear.com/spry.aspx
Click on the link above and scroll to the bottom.

Good luck!

soycoffee

  • Guest
Re: Hi everyone - sero negative Sjogrens
« Reply #54 on: December 02, 2011, 10:25:36 PM »
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

Enjoy the wine. And, you know, it isn't *really* hot until it hits 37 and up.
Also, I hope you will expect good things from plaquenil. I don't know Dexamethasone, but if you have/need more than an NSAID for pain, the it may be the best thing going!

Soycoffee

Duchess

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Re: Hi everyone - sero negative Sjogrens
« Reply #55 on: December 03, 2011, 04:57:50 AM »
Thanks QueenV for the info. I am going to try some of the products.


Duchess
58 y/o, Sjogren's, Lupus, Raynaud's, Mitral Valve Repair, Asthma, Myofascial Pain. Plaquenil, Inhalers, Ibuprofen,Exovac, Vitamin D, Vitamin B-12, Omega 3, Eye Drops, Quinipril, Massage therapy.