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Post by judi on Apr 15, 2014 23:47:09 GMT -5
I'm here, my pulmo's office called with my appointment this Thursday so thought I might wait to see what he said. I have never had any cortisol testing but have read that many (most?) people on ICS have some suppression. It is considered subclinical or an acceptable risk/benefit occurrence. I had some thyroid nodules and the endocrine guy said they might be related to meds but I had a biopsy (SCAREY, I'm pretty tough but I almost fainted. :-D They put a needle into the hollow of your throat and go up to the thyroid behind your Adams Apple and they do it several times for samples. Didn't hurt, just creepy) and I am fine.
I drink ginger tea made form fresh grated ginger but when I get SOB my airways are open and sats very high so don't really need that. I am going to try to ask my doctor what is happening but he may not tell me. I tried Advair a couple of times and got a fever from it too. Symbicort just seems to make me 'catch' things, I was never been sick before I started it.
Did someone diagnose your esophageal varices? they can be serious, do see a doctor. Here is a link about steroid withdrawl. It is not scientific, she is an asthma patient who decided to get off the meds but I got some insights from her writing. I think there are more entries if you search. I get lethargy too when I drop the dose of ICS, sometimes I think I get it every day when they wear off. :-( Be very careful, I think what she says about eating salt helps. they always say you wont' have any problems coming off ICS but Im not convinced, I have a lot of symptoms that people describe with pred.
See you Thursday.
judi
pissedoffpatient.blogspot.com/2010/10/steroid-withdrawal-vs-adrenal-crisis.html pissedoffpatient.blogspot.com/2010/05/self-care-for-steroid-withdrawal.html
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Post by judi on Apr 16, 2014 11:03:51 GMT -5
I hope I didn't seem rude by not responding sooner, I was so tired last night....:-).
judi
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Post by izzie on Apr 17, 2014 2:04:12 GMT -5
Hi Sandy...I still need to get the polyps in my throat checked out, but they do get quite inflamed when I use the Advair. I see you live N.E. of Edmonton...gosh, we have had the most brutal winter in Alberta this year and it's crazy snowing again today.
Thanks Judi.....those were awesome articles about steroid withdrawal, although I don't think everyone will have the same symptoms. I have no pain, but the extreme lethargy is making me so weary that I am napping several times a day. Anyway, I kind of caved a little bit and I thought some of my energy would return if I went on the Advair again. I have a sample Advair 125 inhaler that my Respiratory Therapist gave me in February to try and I thought maybe a lower dose would not give me such a bad reaction. I was wrong, my body is now identifying it as an allergen.....I sneezed until I was red in the face, my sinuses immediately stuffed up and I started coughing and within half an hour, I had itching in my ear, eyes, nose, back, chest and scalp..... but at least I didn't have an anaphylactic reaction.
Your thyroid biopsy does sound scary, but I am glad it didn't cause you much pain. How do nodules on the thyroid affect it's performance? Would the thyroid become underactive or overactive in that case? Licorice Root helps to boost Cortisol levels in the body. I drink an absolutely divine tea made by The Stash Tea Company from Portland, Oregon that somewhat energizes me.....so I only drink it in the morning as it could keep you awake at night. Anyway, it's called Licorice Spice and it's got licorice root, cinnamon, orange peel, Chinese star anise, vanilla flavor, clove bud oil and cardamom oil. It actually helps me to breath better and I can feel it kick in about an hour after drinking it.
Black Tea contains natural theobromine, which is what theophylline drugs are synthetically engineered from. Maybe you could benefit by drinking black tea. Right now, if it weren't for my theophylline drug Uniphyl, I probably wouldn't be typing on this computer right now. It has improved my breathing immensely for the last 3 years. In fact, I'm not sure why I even need Advair and I will have to ask my doctor that question. For some reason, I think Uniphyl has been banned in the U.S. as it needs to be meticulously monitored for it's possible toxic levels. It's a non-steroidal bronchiodilator.
I'm just wondering how long I've actually been allergic to Advair, as I've gotten progressively worse being on it, which is why my Doc put me on the theophylline.
Anyway, it's late at night....so I'm going to turn in and wish you all a great day tomorrow. Hopefully with no more snow, hey Sandy. I just wanna see the sun and hear the birds chirping......it is suppose to be spring, isn't it?
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Post by izzie on Apr 17, 2014 14:53:45 GMT -5
Hi everyone, After several days of healthy eating and sleeping and taking supplements of Multivitamin/minerals, B-Complex, NAC and D-drops I'm feeling a little less lethargic and doing more research on the internet. One of the key things I've been searching for is nutrients that support good digestion, but I prefer whole natural foods before turning to supplements. Today, I am focusing on the Amino Acids which help our bodies produce hormones or natural steroids and enzymes that help break down our food and transport the nutrients to the appropriate parts of our bodies for energy. I researched foods that contain a more complete amino acid content and came up with the lovely Avocado, which has the appropriate amino acids to help digest proteins. From what I understand, people with COPD have a touch time digesting proteins and are very susceptible to muscle wasting. So, the lovely Avocado is going to become my friend for the next while and I'm going to need a few recipes to make it yummy. Not fond of the taste, but if it's going to fortify my energy levels......I'll do just about anything. Anyway, I'm gonna check into an Amino Acid Complex at the local health food store because I feel a little energized from the Avocado I had an hour ago. No, not doing the bunny hop yet, .
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Post by muggsmom on Apr 18, 2014 4:10:34 GMT -5
Yes, thank you for posting your symptoms! For the past 8 months or so I've been having a lot of muscle cramps and it never occurred to me that it could be my meds. I've been taking Advair 500 since 2008, so I will definitely be discussing this with my Respirologist when I see him next week.
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Post by judi on Apr 18, 2014 11:00:24 GMT -5
I'm in Washington State in Pacific time zone and always seem to be hours behind you guys.
I get terrible cramps if I don't take my multivitamin, it works better if I cut it in half and take half with dinner, I think magnesium depletes but am not sure. I also try to eat a lot of nuts for the minerals. Dried apricots have potassium and that helps too.
To me the Medical Mojave author seems a little bitter and may not be entirely fair to her doctors but I thought she had some useful information. When I cut down my ICS I increased my salt intake like she mentioned and it really did help, not sure about the sugar increase. Have you taken your blood pressure, if lack of cortisol makes it drop too much you will be tired and salt helps raise it.
Your tea sounds good but don't know if the licorice would raise my blood pressure, it can do that and I am having problems with that from Symbicort. I used to drink black tea and switched to green after reading it is almost as good. I haven't been drinking any for quite a while because I discovered (alas..) that I can also get theophylline from CHOCOLATE...I've gained 20 pounds thanks to the Lindt company. I am now eating the hard core stuff with 85% cocoa and I don't eat as much. Eat those avocados, I think we need good fats to try to make better airway tissue. US grown olive oil is good too, the Italian imports are supposed to be a rip off.
I have had that immediate allergic response to ICS inhaler too, I usually just sneeze and cough a little though. My sinus are always stuffed up from them (goes away with none). I think that's pretty common, I use saline rinse that helps some.
I told my pulmo about using Qvar along with Symbicort for SOB and he said some doctors do use them that way to treat asthma! I don't see it online but years ago when I took Flovent (in Advair) the package insert said "can worsen existing asthma". I have never been diagnosed with asthma so don't know if I had a little and it got worse or I developed it from the ICS but I suspect that is what is going on with us. Maybe what Sandy and I have experienced with Spiriva causing sort of airway paralysis or constriction would fit in there too.
I don't know if there is something wrong with my pulmo's memory or if he is just not interested. He said taking a regular ICS in addition to Symbicort wouldn't work and there was 'nothing besides Qvar'. I said I thought Alvesco was the same and he didn't say anything and then asked if I wanted a sample to try...weasel.
I was SOB yesterday because I had some airway inflammation and tried to take a couple of full doses of Symbicort to treat it. I took one puff of the Alvesco last night and SOB was gone, it is described someplace as a 'gentle, soothing mist' and it really does feel that way.
It and Qvar are prodrugs, converted into useable steroids in the lung and they have smaller particles that are supposed to get deeper into the airways. I don't know how it will work out over time, my 'idiosyncratic response' to Qvar of chills and fever is listed as a side effect of Alvesco.
So I will be taking 1 or 2 puffs of Symbicort in the AM and 1 puff of Alvesco PM and I may skip some Alvesco doses if I seem to be building it up. At this point I let my airways determine what I need and it seem to be working. I don't know if its good for me but some asthmatics dose every other day etc. so hope its ok. My Fev1 is 45% and higher than many of you so I don't know how it would work on someone lower. I have poor diffusion and need more O2 than most people too so I am a little different there too.
Hope everyone is having a good day. I have been sending sympathy for your winter, our tress are blooming here in the banana belt of Wn State.
judi
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Post by izzie on Apr 18, 2014 11:28:38 GMT -5
Hi muggsmom...........I first started on Advair when I was 45 years old, due to Asthma and I was smoking cigarettes back then as well and I am now 59 years old. It was my New Year's resolution in Dec 2008 to quit smoking and I did. Then on February 10, 2009 I became so breathless that I called an ambulance and was taken to the Foothills Hospital in Calgary.........where they promptly told me I had COPD and that I would have to go on 24/7 oxygen therapy and Spiriva was prescribed as well, in addition to an antibiotic called Levofloxacin for a possible respiratory infection. I was in a state of shock to say the least........because I had just quit smoking on January 1, 2009.
I finished the antibiotics and continued with the Advair and Spiriva, but no improvement and I had one respiratory therapist tell me that it sounded like I was fibrosing when she listened to my lungs. I never at any moment suspected that I might have a corticosteroid allergy and neither did my doctor. The only thing I've ever had an intolerance to is lactose, which is a protein and it is the same protein that Advair uses as it's binding agent. My doctor at that time said there was such a small amount of lactose in it that the risk was minimal, in spite of the warning on the insert that comes with Advair, which clearly states that people who are lactose intolerant should not take the medication.
On my last visit to my clinic the attending Doc suggested I move from Advair 250 to Advair 500......I nearly hit the ceiling, but I managed to maintain my composure. He then gave me a sample of Symbicort 200 to try, which I haven't tried yet. It also comes with the same warning about lactose intolerance.
I will say that the Advair 250 gave me severe muscle cramping in my calves and feet and what felt like intense pain in my knee bones, but I was willing to tolerate it, as long as I could breath better.
I hope you will get back to us with what your respirologist says or suggests.
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Post by izzie on May 3, 2014 10:48:57 GMT -5
I thought I would come back to this thread as I promised I would report my progression or digression with my efforts to straighten around my meds and the horrible side-effects I've been through.
I'm taking less medication than I did a month ago and I've completely eliminated the Advair. I have begun something new though and that is an Amino Acid Complex to kick-start my own natural steroids, increase energy and muscle tone and encourage better digestion.
So far, I notice good changes happening to me mentally and physically, and my breathing has improved significantly. Of course I've altered my diet a bit as well.....to include more of the essential fatty acids.
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Post by sandy07 on May 5, 2014 0:02:34 GMT -5
Just be careful and watch what is happening with your breathing.
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Post by izzie on May 5, 2014 20:13:22 GMT -5
Thanks Sandy and I'm hoping muggsmom will come back and tell us what her respiralogist says about muscle cramping. I don't get the muscle cramping anymore since I quit the Advair, but that may be more due the high doses of Vitamin B12 I am taking in my Amino Acid Complex. I think I read that somewhere that muscle cramping is due to a lack of Vitamin B12.
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Post by sandy07 on May 10, 2014 23:21:08 GMT -5
izzie...I believe it's potassium for muscle cramping....bananas.
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Post by pippy on May 11, 2014 23:39:01 GMT -5
Izzie I get leg and feet cramps ,have found if I take magnesium I don!t get as many, has really helped.
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Post by izzie on May 12, 2014 6:52:47 GMT -5
Hi Sandy & Pippy.........I believe you both are correct about the potassium and magnesium. Although, I think a deficiency will cause more joint pain than muscle cramping, which eventually leads to arthritis and/or osteoporosis. One of the things I found with the many years of taking Advair is that I constantly craved high potassium and magnesium foods like bananas.
With potassium being one of the electrolytes that controls your heart rate.......it's fairly critical to get enough in your day to day diet.
Pippy....it's great that you can pin-point the nutrient deficiency that would help with your leg and feet cramps. I found the cramping to be very painful at times, sometimes I would even get them in my toes.
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Post by Blossom/Jackie W. on May 12, 2014 8:09:45 GMT -5
You guys are bang on...... magnesium, potassium AND...... let's not forget the most important..... water. :-)
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