Hi everyone. I was diagnosed about a year ago, but had been having symptoms for about 5 years previously. I have problems with dry nose - use saline spray all year as well as bacitracin, but as soon as the indoor heating season starts my nose gets bloody fissures and my ear, nose throat doctor has me switch to bactroban. In the past it worked and I could stop it after a week or two, but now whenever I stop my nose cracks again. We added a whole house humidifier 2 years ago, and I run a small one in my room at night. Probably the most problems come my work environment, which is very dry. I run a humidifier by my desk which is in a giant space, so the moisture just disappears into the vast dry area. I am going on a business trip next week (flying), and I am planning to pick up an inexpensive humidifier as soon as I arrive to use in the hotel rooms - probably will have to leave it. Airplanes are horribly dry - even flying during the summer I was spraying my nose every 10 minutes (just like at work now). My rheumatologist wanted me to start plaqenil last year but I also had C. difficile for almost 2 years and I am afraid that the plaquenil might cause a relapse of C. difficile. Does anyone have any more suggestions about how to deal with the dry nose? How about anyone else with a history of C. diff taking plaquenil? (I also have some dry eyes, dry mouth, and Raynaud's, but the nose is the worst). Thanks
- Nose: sterile vaseline if you can find it.
- Ears: a little bit of mineral oil in each
- Eyes: lots of treatments starting with eye drops, restasis, plugs . . .
- Mouth: Biotene products includes gum
- Also "Pilocarpine" med to stimulate saliva.
- Boogie Wipes for kids are saline soaked tissues. Very gentle inside and outside the nose. Won't cause bleeding.
- All these can make you more comfortable.
I have never heard of Plaquenil causing C Diff..it is an anti malaria drug.Usually its caused by anti-biotics.Interesting.As far as a dry nose I would think a humidifier should help.I wouldn't put Vaseline in my nose..go see your MD there are all kinds of treatments out there.Be thankful you do not get sores in your nose and mouth that can come with Sjogrens.I was diagnosed 12 Years ago.I have been amazed at the lack of knowledge out there even by the Doctors..Dentists..I am 55. I lost all my teeth to sjogrens...Do you have Primary or Secondary Sjogrens?..I have the worst..all my joints flare,parotid glands are perpetually swollen,migraines,P A I N,I am off balance and walk with a crutch,have had heart and lung involvement..it can be a total devastation to your body..I am even confused..most of my days I am only out of bed maybe 4 hours.I learned long ago to just treat the symptoms because there really is no cure for this awful disease.Not to sound pessimistic..healing your mind and soul seems to be more essential..just to deal with this debilitating mess.I wish you luck with the nose but I think a good ENT visit will give you the tools to solve your dryness.
Taking fish oil and flax seed oil may help. Almost a year ago I started oil pulling with coconut oil 2-3 times a day because of mouth sores and it also has helped with my nose. An ENT doctor recommended Ayr saline nose gel for his nosebleeds and I have been using it for a week or so and it seems to help also.
I too have SS and Renaudes. The easy part is Restasis for dry eye twice a day. It took away the scratchy feeling and although my eyes are still dry (according to the Doc) they don't feel like it any more.
For the dry mouth/nose my Doc asked me to take Evoxac three times a day. It takes away the dry mouth and nose, no more nose bleeds in the morning etc. It works so well that for an hour or so in the Am after taking it my nose runs like a faucet. I'll take that over the dry nose any day.
I am not sure there is a fix for Renaudes except to keep your hands, especially fingers, as warm as possible especially if you are in a cold climate.
For me the worse part of having SS is the periferal neuropathy to the point that both feet are totally numb on the bottoms and toes. Not only numb but it hurts to walk or bump them into anything. Using Lyrica 75mg and Katimine gel 20% and that helps some. but it's always there. The only thing I can do is just block it out the best I can and deal with it.
Hope this helps a bit.
Thanks, everyone for your replies and suggestions.
I had multiple relapses of C. diff (initially brought on by the antibiotic clindamycin) over almost 2 years and was on oral vancomycin for months - the C. diff would come back 6-8 weeks after stopping the drug and I would have to start all over again. Finally probably got rid of it last spring after I took a newer and very expensive drug called dificid - but sometimes it is hard to tell if the C. diff is really gone because it left my GI tract in ruins and I still have many of the same symptoms that I had with the actual infection. The only way to really tell is to get a stool test, which I still do periodically. Anything that upsets that fragile balance of bacteria might set it off again ahd let the C. diff dominate and since plaquenil is considered an "immune modifier" I am worried that it might be enough to upset the balance.
I have had varicose veins for over 35 years so always wear support stockings when flying - thanks.
I had tried the Ayr gel several years ago - maybe something in it irritated my nose, because I seemed to have more cracking and bleeding with it than without. So I gave up and went back to the bacitracin. Just this week/last week I have been searching for other nasal gels - found 2 others - trying the CVS. Thanks I will look into the FESS nasal gel. I have been taking salmon oil already for years and years. I have already been using the nasal rinsing once or twice a day in addition to the saline spraying. Probably I wouldn't tolerate the Exovac - I have had heart arrythmias since I was 37 and had a radiofrequency ablation to treat arrhythmias in 2002. So any drug that lists "heart rhythm effects" as a side effect is not for me. I do use the biotene spray at night.
I couldn't tolerate Evoxac either, nor Restasis. It would be worth oil pulling with coconut or sesame oil a try. And add coconut oil to your diet. You can research the benefits of coconut oil and oil pulling. As long as I oil pull regularly, I don't get mouth sore, my sinuses stays clear and I don't have nosebleeds every day. It even helped the TMJ. Once you get used to it, you will be impressed.