Hello New here and in desperate need of some answers! Please help!

[meme]

Hi my name is Carol and I have been diagnosed with SJS for 5 years now. It is secondary to RA so when I was diagnosed I though no big deal, I have the pain of RA and except for dry eyes and mouth I was OK with it. I do see an oncologist every 3 months because of the Lymphoma but so far it is just there, the treatment would be worse than the Lymphoma right now. I am on the usually meds for RA and SJS, you all know the routine, I have had Methotrexate, but my white blood count can't tolerate it. I felt much better while on it but had to give it up. But recently I have moved and had to change my GP and she was concerned about my breathing. Before my GP had given me Asthma meds because she thought it was Asthma, but my new GP sent me to a Pulmonologist. I had all the test CT scan, and the whole thing nine yards and I have been diagnosed with moderate emphysematous-type due to the SJS disease. I have never smoked in my life, but being a child of the 60's my mom and dad both were big smokers. Has anyone else out there have this? What is it and what can I expect. I don't go back to the Dr. until the 17th and I just don't want to wait that long for answers.  Please help me! I am so glad I found this web site anything I can learn is appreciated much.

[Cheryl]

Carol,
  No, I'm sorry that I don't know anything about your lung condition.  I do know that Sjogrens affects the lungs for a lot of people.  I hope you get some answers that are helpful.

  I do want to welcome you to our site, and I wish you the best.   I have dealt with lymphoma, too.   I'm glad yours is not a cause for alarm.

Have a good day!
Cheryl 

[Katybarstool]

Hi Carole

A big welcome from me too. I have no exprience of lymphoma, but I do have lung problems. Mine was diagnosed as bronchiectasis. With inhalers, it's fine. I believe the bronchiectasis is due to Sjogren's,but it could also be related to lung damage sustained through a severe case of measles when I was 18 months old.

I look forward to getting to know you.

Kathyx   

[lynnmarie219]

Hi Carol and Welcome to Sjogrens World!

I have never heard of this either, but when you google it, there are many sites that pop up! I'm sorry that you are having to deal with all of this...but I'm glad that they have found some answers for you so you at least know what you re dealing with!

I can understand the anxiousness you feel about learning the results of your test....I'm the same way. Have you tried calling the office and requesting to be put on the cancellation list? This works a lot of times for me and can move you ride up the list pretty fast. If not...can you call or email your doc asking for more information?

I hope you can see or talk to this doc quickly....it is hard to wait! Hang in there and let us know what you find out! Good luck!!

[irish]

Carol, Sorry to hear of all your issues. The lungs get hit by the Sjogrens in most of us. We have the dry mucus that sticks in the bronchioles and plugs things up. This in turn causes the damage to the lungs. Actually it is more complicated than that but that is the best I can come up with right now. We develop a type of fibrosis of the lungs with shortness of breath, etc..

Really has nothing to do with smoking(actually smokers can have all the sjogren issues and sometime more severe) but actually many of us do have asthma issues or reactive airways. I am on albuterol nebulizer plus steroid inhaler and atroven inhaler. We just have to make sure that we take care of ourselves and stay away from sick people. Also, drink plenty of fluid and take Mucinex OTC to help thin our mucus is necessary or else prescription pilocarpine. Also, it really does help to get exercise as it keeps us breathing deeper and helps us clear out our lungs. Laying around is the worst thing we can do. Need to move to loosen the mucus. Hope you get some help. Irish

[meme]

thanks Irish, that really helps explain a lot! I have been out of work since Feb. and have done nothing but lay around and feel sorry for myself, I have given up just about everything, so it makes a lot of sense that it has gotten a lot worse this past year.  I will try to do better! I'm sure when the Dr. starts me on some meds I will have enough "air" to at least get off the couch the do something. I have so much to be thankful for and all I can do is feel sorry for myself. I am 60 years old and I act like my mom did when she was 80. I need a good butt kicking!!!! I am going to start today being better to myself. Hang in there with me people!  Thanks again

[Katybarstool]

Meme

Go for it girl!  When you are part of this family, you get to benefit from the wisdom of our more knowledgeable members, like Irish. She speaks a lot of sense, and obviously hit the right spot.

Don't try to do too much too soon - just a little bit extra each day. Maybe you could join our 10 minutes in the fresh air group?

Hugs
Kathyx

[meme]

thanks Kathy I need all the encouragement I can get, I got out yesterday and walked to the mail box, it is beautiful weather here in eastern TN so I am trying to take advantage of it.  I even did a little bit more than just to the mailbox. So I am going to take it slow and get myself back on track....thanks again....

[lynnmarie219]

Go meme... Go meme.... Go meme!


Now you have your very own cheerleader to keep you going! Good luck!

[irish]

meme, It is very wise of you to get out and be more active. You will find that you will feel better about life also. If you find that you are not getting enough relief with exercise your doc may want to order some "therapy" at your locally hospital. There is a program of exercise that has been developed for people with COPD. etc and it helps get the lungs in better shape. This would make it easier to you to keep things going with your own therapy at home. My husbands Aunt had COPD and was on oxygen. She said this therapy really helped improve your quality of life.

Also, if the docs have checked you over good and checked your oxygen saturation when sleeping and found it low, you may benefit with oxygen only when you sleep. People who do this sleep better and feel more rested and are more able to maintain a more normal lifestyle. Go for it kiddo!!!!!

P.S. I am 66 years old and I have my bad days too. The last year plus I have not been as active as I wanted to be because of all my infections. I have myasthenia gravis plus severly low t-cells. When I get so many infections it increases my weakness from the myasthenia. It ain't easy being a sjoggie but we all try the best we can to preservere!! Keep the faith. Irish

[Joy Cox]

Carol,  I was put on oxygen  24/7 in 2006 after showing low o2 level on breathing tests and 6 minute walk test. A month or two later, tested for nighttime o2 level and determined I have severe sleep apnea. Put on CPAP machine w/o2 at night and naptime and left on o2 tank rest on day.  SS has been a 'roller coaster' ride for years. Feel it started in my late 30's and continues in my 60's. Breathing issue started in Oct. 2005.

Have read others Sjoggies comments and Irish suggestion to get involved in local hospital therapy program was the 'light at the end of the tunnel' I had been looking for as 'had hit bottom' w/SS issues. Turned the table of this unwanted SS gift and retuned it for full refund... 'Hitch up those boot straps, girlfriend, you can do it!!!!!'

Carol, I, too, live in ETN and wonder what town or city you are in? 2005 through current time has certainly has had its  SS ups and downs. If you want  to personal email me on this site, I'll be glad to share all the good things that have happened to me since I got COPD diagnosis in ETN and traveled to large medical ctr. for further testing.... J     Y

[meme]

Joy this web site is so wonderful!  Thanks for all the first hand Knowledge. I am really excited about being a member of this web site. I have kept quite for so long, my family have no idea what SJS is and I can't make anyone understand the full impact of it. Because you look normal one the outside everything is just fine. Its good to know I have support out there, it is just what I was looking for.
I live in Elizabethotn Tn. about 2 hours east of Knoxville. Thanks again and keep the posts coming.  Love to u all

[Bucky]

WELCOME TO THE SJOGGIE FAMILY  MEME / AKA CAROL.    
Bucky