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View Full Version : Got a Diagnosis and treatment plan!



Corella
10-26-2011, 02:56 AM
Well today my Rheumy called me, after being diagnosed with dry eye, getting punctal plugs and the eye specialist saying he thinks its sero negative sjogrens syndrome, after going to the dentist with an appallingly dry mouth and nasty salty metallic tasted and a huge newly developed cavity requiring a filling, my GP told me to call the Rheumy and let him know what the dentist and eye specialist think.

He agrees that it is sero negative sjogrens - whether or not it is is primary or secondary, god knows but I need bloods doing every 4 months, dentist every 3 months.

Rheumy is writing to my doctor to start me on plaquenil and a short course of steroids as my finger joints are excruciatingly painful and Icant walk too much and wake up so stiff and sore in the morning.

So that is the plan - I am nervous of the plaquenil - I have heard you cannot drink on them, is that right? Not that i am a big drinker but I like a glass of wine with my meal if my husband is at home, he is a chef and cooks such nice food which goes well with wine.

Any tips for taking this tablet? I am so nervous but at the same time, hopeful it will help me.

I wonder how they will tell if it is primary or secondary? My hair is dry and brittle, fallen out but not noticeable, and I still get a rash on my cheeks.

Oh well, at least I know. One bit of good news is that I have passed my documentary film making course which I am thrilled about, many of you know the hard slog it has been for me with various things going on but I have done it and my graduation party is on 25 November.

And another bit of good news, I have been asked if I want to volunteer as a sports journalist for the World Sailing Championships in December, although I know nothing about sailing, it will be an excellent chance for me.

Pretty happy now, even though I have a diagnosis.

How is everyone?

steve.b
10-26-2011, 05:47 AM
i am glad you have a diagnosis.

it does not really matter what they call it.......
it is more important that they start the proper treatment.

my rhuemy explained plaquinel and drinking as.
plaquinel is a disease modifying drug.
it works like a chemical reaction with your immune system.
if you have alcohol in your system....then the plaquinel does not work.

so if you take plaquinel in the morning, and have a little drink with tea..... no problems.
if you had too many drinks, and still have alcohol in your system, when you take the next mornings plaquinel.... then it will not work.

a little of a good thing is ok...... just get the balance right.
no alcohol in your system when it is medication time.


i am glad you passed your course........ i know how much it means to you.
well done.

magistramarla
10-26-2011, 09:43 PM
Hi Corella,
I have Sjogrens too. It is primary if that is your one and only AI issue. It is secondary if you are positive for any other AI issues, as I am - RA, Lupus an Psoriasis. The treatment is the same, so it doesn't matter much. Have you checked out the Sjogren's site? http://www.sjogrens.org/
I live in the middle of California wine country. There is NO WAY I'm not going to enjoy some wine while we live here. (I'm drinking a glass as I type right now). My doc said the same thing as Steve told you - don't take the plaquenil and the wine too close together. I take my pill in the morning, and enjoy a little wine at dinner or bedtime.
I had a few problems with the plaquenil giving me the trots when I first started taking it, but now my body is used to it, and I have no problems.
Good luck, and feel better.
Hugs,
Marla

Corella
10-26-2011, 10:09 PM
Hi Corella,
I have Sjogrens too. It is primary if that is your one and only AI issue. It is secondary if you are positive for any other AI issues, as I am - RA, Lupus an Psoriasis. The treatment is the same, so it doesn't matter much. Have you checked out the Sjogren's site? http://www.sjogrens.org/
I live in the middle of California wine country. There is NO WAY I'm not going to enjoy some wine while we live here. (I'm drinking a glass as I type right now). My doc said the same thing as Steve told you - don't take the plaquenil and the wine too close together. I take my pill in the morning, and enjoy a little wine at dinner or bedtime.
I had a few problems with the plaquenil giving me the trots when I first started taking it, but now my body is used to it, and I have no problems.
Good luck, and feel better.
Hugs,
Marla

Thanks Marla

I am relieved about the wine, I hope to have a small glass when we get Aussie citizenship in a few months.

Do you get sore bones, my bones are so sore - my finger joints are so painful its awful and it takes me ages to get out of bed in the morning, I keep needing 'nana naps'.

The symptoms are so similar to Lupus from what i have read and I have also read that sjogrens can affect internal organs - is that true?

Bonita
10-27-2011, 06:33 AM
I am glad you finally have a diagnosis and i am on plaquinal for years with no bad side affects. Hope you continue to do well with your diease. Bonita

magistramarla
10-27-2011, 10:15 PM
Corella,
Check on the Sjogren's site - they have a great illustration of the body, showing all of the parts that SJS can affect.
I've dealt with bone pain - Ouch! - I had Avascular Necrosis. I had arthroscopic surgery, and the surgeon shaved the dead bone. Because of that, I can never take steroids.
My worst pain now comes from my spastic muscles. It seems that AI diseases are devious - they can attack anywhere.
Hugs,
Marla

mdawncooper
10-28-2011, 06:33 AM
I am so thrilled that you are beginning treatment. I have been taking Plaquenil since May and although I did have stomach issues when I first started, I feel much better most of the time. I don't drink so I know nothing about that part.

I look forward to hearing about your progress. Have a great weekend.

Corella
10-28-2011, 09:33 AM
Can I ask, are the stomach issues really severe? I cant take NSAIDs due to asthma/stomach probs and I am worried if the plaq will upset my tummy, I can cope with an upset stomach but those gut wrenching cramps will worry me.

magistramarla
10-29-2011, 08:46 PM
Corella,
I take mine in the morning, after I've eaten breakfast, and it hasn't caused me any tummy cramps since those first few months. However, it still can cause me to trot to the potty a few times a day. At least constipation is never, ever a problem for me!
Hugs,
Marla