I know they're both inhaled steroids. I've told my pulmonologist and ENT that steroids and Lyme don't mix and they said inhaled steroids wouldn't be a problem. I don't necessarily trust them. Does anyone know if these are ok?
Posted by bettyg (Member # 6147) on :
laura,
i'm on both and ASMANEX too; they have HELPED ME! so try it; if you react, stop them.
this is the only time i'm PROMOTING STEROIDS for my own severe lung problems due to 38.5 yrs. of chronic lyme! Posted by Tincup (Member # 5829) on :
I don't like to mention this as it could have been a freak thing... but in the event it wasn't. ??
I used inhaled steroids once. I nearly lost my mind. I was told they were so safe babies could use them... so against my better judgement I tried it again. It was HORRIBLE!
I am NOT trying to scare you... but what happened to me should NEVER happen to someone else... and if it does... at least you will know what caused it.
For some reason .. and keep in mind the nasal passage is a direct link to the brain....
I don't know what to call the "event" actually. But I remember shortly after using it I began sweating. Then I had no clue where I was... but I remember I was walking around.
I may have blacked out? I can't remember anything except "coming to" (must have been hours later) huddled in the corner behind the toilet against the wall... squatting down on the floor and completely scared to death about something... but I didn't know what.
I don't know how I got there or how long I had been there either.
And I was SURE someone was trying to kill me.. but there was no one there but me. I don't know why it happened... or what made that happen.. but both times I used the nasal inhaler I had the same sort of reaction.
I never had that before or since.. thank goodness... or in between uses of it... only after using it... and for a good part of each day.
Of course the doctor said that wasn't possible and I told him to kindly put the steroids where ... well.. never mind that part.
I refused to ever use them again. Never did know what happened or why. But I NEVER want to go through that again... ever.
PLEASE PLEASE PLEASE... do NOT base your decision on anything I've said here. I did recover... and it never happened again... but if anything like that were to happen to someone else... I'd rather they know they aren't the only one... and that you do get better.
OK?
Posted by laura j (Member # 14257) on :
Come to think of it, I had some weird things happen last time I was on Flonase. The sides of my head and face got all numb and tingly and I kinda started going deaf and I felt like I couldn't breathe and my voice got all strangly and a weird feeling in my chest and my heart was racing. It seemed to make my lung symptoms worse.
The doctor at the ER said it was a panic attack (of course!) and my regular doctor said there's no way flonase would make my lung symptoms worse b/c asthma meds are steroids and so is flonase so if anything it would help.
I got a new dr. after that and told him about it and he said that w/me having mycoplasma pneumoniae that inhaled steroids may not be a good idea but I can't remember what the logic was behind it. The first dr. didn't know I had Myco, the new doc figured it out.
I guess I'll just try to live w/my symptoms. I also looked up interactions for these meds and I'm on Biaxin and it interacts with both of these. It also reacts w/Prevacid which I was about to start.
Posted by Clarissa (Member # 4715) on :
Flonase has steroids in it?
I kne rhinocort did but NOT Flonase. That's just super as I use it every night.
Although, I have to say, personally, that it seems to help me not HURT me.
There couldn't be TOO much steroid in it, could there? Should I even be using this?
I hate this effin disease. Posted by nyjohn (Member # 15361) on :
i used to use advair 1 X day for asthma.
once i cut gluten out of my diet, my asthma basically disappeared. but i still had it here and there.
then, i stopped using advair, and my asthma cleared up.
i bought a new tube of albuterol 9 months ago in case i would need it and i haven't even opened the box since. i don't even carry it with me.
diet and asthma can be linked together big time. try cutting out glutens (be STRICT) and nightshades as well for 3 months and see how you feel.
Posted by laura j (Member # 14257) on :
Nightshades, huh? What do you mean?
Posted by Clarissa (Member # 4715) on :
So I just called my pharmacy and, indeed, Flonase has "cortico steroids" in it.
Does anyone know how bad this form of steroid is for a Lymie?
It really seems to clear up my nasal passages (I have a deviated septum) but I'll discontinue if it's going to effect my disease.
Thanks for any input.
Gratefully,
Posted by nyjohn (Member # 15361) on :
i would give up the glutens first. gluten is in sooo many things so ALL ingredient lables must be read. NO wheat, spelt, barley, rye, or oats. that means in breads, spices, soups, sauces, condiments, etc...everything.
Posted by laura j (Member # 14257) on :
My God! I've already limited my diet so much that I've lost 12 lbs! I haven't eliminated all those things though. I've just cut out dairy and sugar but have been eating things like Kashi cereal w/almond milk, pumpernickel bread and lentil or black bean soup or salad w/chick peas and meat or eggs. I do also eat some fruit and raisins and nuts for a snack.
I don't know how I could possibly limit my diet more. I'm running out of things to eat and am hungry! I'm down to 118 lbs. and I'm 5'8". Don't get me wrong, I'm happy about that but I probably can't afford to lose much more. Good for bathing suit season though!
Any ideas of what I can eat? Posted by Clarissa (Member # 4715) on :
laura j:
I eat sweet potatoes everyday with lots of unsalted butter.
McCann's Steel oats with lots of unsalted butter, sea salt and stevia.
I make cornmeal muffins (recipe in Yeast Connection book by William G Crooke MD) on Amazon. He has a lot of easy recipes.
Samme's Bakery (google or you can get at whole foods) makes millet flax chips (i like the plain ones but they come in garlic, too).
Lundberg Sea Salt chips give you some good carbs (google) or you can get at Whole Foods. They also sell Annie's vinegar-free dressing (3 different flavors) for salads.
Almond butter on popcorn rice cakes (whole foods).
Hope that helps!
Posted by nyjohn (Member # 15361) on :
i'm not a sweets person so it was a bit easier for me on that side. grains- i eat rice, corn, millet, amaranth, taters (i do ok with them), quinoa... sandwiches, i eat brown rice breads. tortilla chips, corn cakes, rice cakes.
instead of sugars, use raw agave syrup
eat lots of avacados
i eat a ton of asian food. but i make sure i use my own wheat free tamari/soy sauce.
it's not going to be easy but you may find that after you adjust you will like your new diet and it really has helped lots of people with ailments.
Posted by laura j (Member # 14257) on :
Thank you SO much. That was very helpful. There were a lot of things you both mentioned that I thought were a no-no so maybe I was being too strict.
Boy did I ever cheat tonight though. There's a carnival near my house every year and I couldn't enjoy it last year b/c I was too sick. Tonight I had a sausage grinder and a hot fudge sundae! I cheated yesterday too b/c I got a plate of polish food! I will start to be good again tomorrow.
Actually, come to think of it, maybe I won't! My sister is having a party tomorrow but I think a lot of the stuff she's serving is ok. It's mostly seafood (crab legs, shrimp, clams) and corn. I'll skip the pasta salad and potato salad and skip dessert.
How bad is fruit? I occasionally do a smoothie w/banana, strawberries, blueberries and pineapple juice. I've also had difficulty resisting watermelon b/c it's in season (and so yummy!). Are raisins ok?
What's the deal w/salt? Why is sea salt ok but regular not? I'm actually told to eat a lot of salt by doctors b/c my BP is low.
So sweet potatoes are ok? I thought no potatoes, corn, rice or basicly any starches. I thought oats were out of the question too?
Posted by roro (Member # 13383) on :
my son has severe asthma and has no choice but to use inhalers or die.
of course, if you dont need it, any medicine can be dangerous. but if its for asthma, you need it
the advair prevents asthma and makes you use less albuterol, which is a stronger steroid.
the inhaled steroids are supposedly like topical steroids on the skin inside your respiratory tract, as opposed to pill form which is systemic
Posted by bettyg (Member # 6147) on :
tc,
sorry to read about your severe reaction to the above! well, when you go on a trip; you really outdo yourself, don't you? big uffda.
we each learn what our bodies can manage and NOT.
Posted by nyjohn (Member # 15361) on :
sweet potatoes are in a different family than potatoes.
oats are no good for anti-gluten diet, but apparently there is some gluten free oatmeal out there, i don't know how that works. keep in mind that some places use oats to fluff up their hamburgers. not sure about sausages.
i had to use my advair every night and albuterol sometimes twice a day before i cut out glutens (i also basically totally stopped tomatoes). i rarely eat bell peppers. i also don't eat dairy.
not that my diet is the answer to health problems with asthma, but maye give it a try for a few months? to substitute for lack of weight (yes, i need to gain about 15-20 pounds after my initial loss- i was too sick to eat well for a year +), i eat lots of proteins and at least one avacado a day. start to do some asometric exercise or very light yoga if you can. once your body gets to feel like it wants to get stronger, you can slowly lift weights or do weight bearing exercise from there. i have found that canoeing is great exercise for rebuilding and it's not too aerobic to exhaust me as i go through lyme/etc treatment.
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