Nasal Wegeners diagnosed in August 2013 . Losing confidence in the recent past.

[Gab122]

I think Annekat might be on to something. I just noticed that my shortness of breath is worse after a big meal/ eating in general. And of course I'm eating a lot because of the prednisone. Despite being on Prilosec since early Aug. I'm now thinking my breathing problems might be GERD related. I was put on fosomax to protect my bones and I think that worsens reflux. Fosomax was just started early Sept and reflux started shortly after. Breathing worsened around then too.

Adith, Does your mom have reflux? How is she doing?

Gab

[annekat]

I think Annekat might be on to something. I just noticed that my shortness of breath is worse after a big meal/ eating in general. And of course I'm eating a lot because of the prednisone. Despite being on Prilosec since early Aug. I'm now thinking my breathing problems might be GERD related. I was put on fosomax to protect my bones and I think that worsens reflux. Fosomax was just started early Sept and reflux started shortly after. Breathing worsened around then too.

Adith, Does your mom have reflux? How is she doing?

Gab

I'm currently taking twice as much Prilosec as the packaging instructs, by doctor's orders, while my inflamed esophagus heals. I haven't been on Fosamax for a couple years, but that's interesting that your reflux started after taking it. I sure feel a lot better with the Prilosec, but also figure our shortness of breath could have multiple causes. The symptoms Wegs causes are bad enough by themselves! But I'm really happy with my progress on this and will see the gastroenterologist in a little over a week, to find out whether I'll decrease the dose, or what. My best advice is not to eat right before bed, because being horizontal gives the acid a better chance to come up from your stomach. For some reason, yogurt was especially problematical that way; I'd wake up coughing with a horrible, burning taste in the back of my throat. Best of luck in dealing with this!

[adith]

Hello members ,

First of all a big thanks to @annekat , @Gab122 , @MikeG-2012 and others for the valuable feedback posted to the thread . My mother is doing alright although severe fatigue and shortness of breath continues to exist . For a change i have got her to Malaysia and will be taking her to Singapore 2moro for a welcome break from her regular routine and monotony. I will update more once i am back in Bengaluru i.e my hometown.

@Gab122 , I cant exactly understand what is meant by reflux ??? If you don't mind please help me understand what it is so i can comeback with information as to if it is the case with my mother or not. Meanwhile cheers to all.

Stay healthy!!!!

[Gab122]

@adith reflux is when you eat food and it comes back up into your esophagus or mouth. (It is heartburn/ indigestion) Perhaps due to spicy food/fatty food, caffeine, certain medications, eating too much, eating before lieing down, etc.

I imagine your mother is more hungry when she is on high doses of prednisone. So the prednisone and over eating could be culprits. I am hungry all the time right now. Also if she is on fosamax to preserve bone density that can cause heartburn (indigestion/reflux) (prednisone is damaging to bones) Is she on Prilosec to protect her stomach while on prednisone?

Wishing you a wonderful time in Malaysia and Singapore.

Gab

[annekat]

Adith, the stomach produces acid to help digest food, and Prednisone is one thing we all take that can increase that acid, which may then come up our esophagus and irritate the trachea and bronchi, causing breathing problems as well as possible stomach and esophagus ulcers. Prilosec is one of the acid blockers used for this, with generic name of omeprazole, and there are others, such as Nexium, with different generic names. If your mother is on pred and not taking one of these, you might speak to her doctor about it. In the US, these are available at drug stores without a prescription. Good luck.!

Sent from my MotoE2(4G-LTE) using Tapatalk

[drz]

Info on GERD GERD - Mayo Clinic

What Is GERD? Pain, Symptoms, Causes, Remedies, and More

[nagesh]

Hi Adith,

I am Nagesh from bengaluru, my son has WG since 6 years, you can call on my mob 9341215692

[adith]

Hello friends ,

So we finished our Malaysia+Singapore trip sometime back . It was good for me personally but my mother hardly enjoyed as severe fatigue took over for every 7 or 8 steps she took . Somehow she managed to see the most famous attractions of Malaysia and Singapore. I wish we could travel to more countries in the future but my mother seems to have lost all confidence after our recent trip and that is due to her feeling awkward about getting help in the form of wheelchair . I am sure she never imagined herself with a wheelchair on a happy holiday . I think it was taking a toll on her psychologically as it kept on reminding her of the ailment and condition she was in. My eyes are getting wet as i write this but my mother informs me at this stage she can hardly taste any food and enjoy as all her taste buds have gone numb . She cannot eat what she wants and enjoy , she cannot go where she wants and of course it is very difficult for her to be of help to people around her as she herself needs help. She finds it very difficult to feel satisfied in any way and thus feels life is not worth living anymore. Whenever she gives me this line of thought i breakdown myself as i simply do not know how to handle or respond or reason with her .
Anyway i wanted to share some feelings with you all and interested to know how fellow members have found reasons that help you stay motivated positive and filled with hope .

[Gab122]

@adith I'm so sorry your mom is still struggling so much. Has her breathing improved at all. I understand her feeling despondent. I feel like I am on a bit of a roller coaster ride emotionally. Some days I feel stronger than others. I am currently being tapered lower on prednisone and I know that prednisone can cause anxiety and depression. I also think "coming to grips" with having this disease can cause anxiety and depression. Furthermore I believe the tapering off of prednisone process comes with its own set of challenges. So really it's no wonder she feels sad. I am taking an anti-anxiety medication - which I believe is somewhat helpful. Would she consider this? I also turn to my family and friends and share with them when I am having difficulties. I also rely on my faith in God to help me. I believe God loves me and that there is a purpose to this challenge that He has let me have. A good purpose. These are the things that help me. Perhaps you could share with your mom and let her know she is not alone in her struggles. I wish she could understand that her value is not only in giving care but she is a blessing to you all when she allows you to care for her. That is what family is for. Helping each other. She will once again be able to give care but perhaps her role right now is to be cared for by you. And let you love her, which is very evident. You are a good son or daughter. (I don't know if adith is a man or woman's name)

May God bless you with wisdom and your mom with healing.

Gabrielle

[annekat]

Adith, I think Gabrielle has made some good points. I also feel that WG is a challenge that has been given to me possibly for a reason, to further my growth as a human being. I would not expect everyone to feel that way. I have a lighter case of WG than some, though it is not without its problems. I really empathize with your mother on the difficulties of having the energy to lead a full life and enjoy traveling and such. I just have no desire to travel, I think it would be stressful and I wouldn't enjoy it. I hope that will change someday. I know there are people on this forum with WG who enjoy traveling and have even done things like climb Mt. Everest. We are all different. I just like to stay close to home and enjoy my familiar routines and surroundings. I don't remember how long your mom has had WG, but I certainly think there is a chance that things will get better for her. In the meantime, perhaps she should try not to do too many things, not demand too much of herself, and let others help with the everyday issues of life. And maybe she can regain some of her hope and find enjoyment in simple pleasures. May you both be blessed with her eventual recovery from the worst of this disease.


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