New members, husband and wife

[rcuneo]

Dear all

I am new in this forum, my name is Roberto, my wife was diagnosed with SS in 2009, after many years going from some doctors to others,
I am writing in her behalf, because we live in Uruguay, speak Spanish, and she doesnt feel very confident writing in English, anyway, I will try to be very specific about synthoms, and everything
She just got out of the hospital, due to a respiratory crisis, besides all her SS manifestations, (she didnt have any anitbodies present, neither other clear SS manifestations,etc
she does have dry eyes, dry mouth, but mainly respiratory problems, Our country is a small country, and SS population small too, so, doctors done have much experience, we did reach anyway the best in Autoinmume diseases and whe is beign attended by them
She has also another AD together : Hashimoto's
Main issue in her case is low respiratory forces, which doctors are looking for the right medication to deal , also Iron defficiencies have appear 2 times in the last year, dropping Iron too low, which does generate weakness and weak forces, to breath too.
She has been on Plaquenil since 6 months, before that other were tried with not much results, since Plaquenil, she got some releaf in articular pain
Doctors are seeking of anothe drug to help plaquenil, in the respiratory field
Does anyone have a disgnosis of LOW RESPIRATORY FORCES?, if anyone has, please confirm

medicines we takes :

Plaquenil , T4 , metformine, esomeoprazol, domperidone, meloxicam, Modusik ( oftalmic drops) , Flixovent, and Salbutamol,

now after this last crisis, the doctor added SPIRIVA, Teofilin

many thanks for giving me the chance to share our problems, and I hope this helps all of us to find information and other people experiences which always leads to solutions,
regards

[Katybarstool]

Roberto

Welcome, and thank you for joining us to support your wife. I just wanted to say that I had respiratory problems before being diagnosed with SJS. I finally became much better when I was given Spiriva to add to my salbutamol and another inhaler called Serevent. That was 7 years ago, and my chest has been pretty good for most of that time. I have faith in Spiriva.

If you want more replies, you could start your own thread. Go to Sjogrens World Forum home page and choose discussion board, then choose 'new topic'. If you put a title such as 'respiratory problems' or even 'Spiriva', you will get more replies.

Regards
Kathyx

[Pisces24]

I am sorry you all have to go through this and it has to be so difficult trying to get answers!  Has your wife ever been on Prednisone. It is a type of steriod that a dr can prescribe.

My main symptoms of Sjogren are: dry mouth (many teeth cavities), dry lips, dry sinuses (which sinus flushes has helped a lot with) and my blood work is abnormal with very high ANA, SS-A and SS-B.

I also have some lung involvement with Sjogrens. So far I have no breathing problems but I have spots on my lungs the pulmonologist is pretty sure is from SJS.  My lung capacity (I think that is the test he ran)  is about 52% and anything under 60% the drs do not like. I had a bronchoscopy which did not turn up anything. For now the pulmonologist is monitoring me but if I develope breathing problems, he will seriously consider a lung biopsy. The only way he can really tell what it is is to be invasive and go in there.     I am taking vitamin D (per dr). It helps the immune system and bone health. I've had low iron in the past but a medicine I was taking caused it. Side effect was a loss of appetite, 

I would learn about the medications being taken. What are they exactly for, their side effect, allergic reactions, and are they all ok being taken together.  All your drs should know ALL the medications you are on plus any herbal or like supplements.  One thing we have learned is to be an advocate. You don't just go on what a dr tells you. It took me 6yrs to get a diagnosis and I saw a bunch of differnt drs along the way. I heard everything thing from "we think it is cancer but your are not sick enought" to "probably something you got from your cat" and I didn't have a cat then. So don't be afraid or shy about asking the drs questions.
Good Luck and Welcome.

[Meld256]

Welcome to the forum, Roberto. So kind of you to write in your wife's behalf. 

I personally haven't had lung involvement, but there are many here who have. As Kathy suggested, you may want to make a new topic and should get more answers.

It sounds as if you've both had a difficult time finding some help. I think you'll find good information and advice here.
Please let your wife know there are many people here to support and encourage her, and you, too! So good of you to assist her in reaching out for assistance.
Take care and keep us posted.  And feel free to ask anything at all.
Melinda

[Joe S.]

Welcome. There is a lot of information on this site. I hope that you can find something to help you.