Really painful, dry nose and bleeding...?'s

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sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 11/13/2007 3:16 PM (GMT -7)   
Hi, everyone. I have successfully tapered to 8mg everyday and have been taking that for 23 days today. My blood sugar also still seems to be trying to improve. I have gotten several more normal readings that are even lower than they have been in the past. I just continue eating the way I have learned and hope that it will eventually get all better if I can taper low enough. My question now has to do with my nose. This is something I feared would happen earlier in the fall when the temps wildly dropped a couple of times. The inside walls of my nose feel raw. I do not feel any ulcers though. It's just generally sore, so I do not think it is from this taper I think it's just because it's gotten cooler. I do have the Sjogren's antibodies and my previous rheumy thought my nose problems were to do with that. This year though, it is already worse than ever before. Now, not only do I wake each morning unable to breath because it is filled with dried mucus (sorry), but when I clean it out the walls are bleeding. I have avoided spraying anything into my nose as every time I have in the past even with something as simple as generic saline to provide moisture, I get sick. I just picked up something called Ayr yesterday to try. It is a saline solution, but in a gel form. It also has soothing aloe in it. I do feel relief upon applying it, but it still dries out very quickly. I am using this three times a day and again at bedtime. Does anyone else deal with this? If so, what do you find helpful? My current rheumy when I ran this by him last month thought it was allergy/pollen related. With the pollen counts here being very low now, and my nose getting worse not better; I think it must be something else. Any help would be appreciated. Oh, and on the outside bottom/center of my nose it is bright red too. I have an appt. coming up this Thurday with my rheumy. Thanks so much,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 9mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/13/2007 4:15 PM (GMT -7)   
I have the same thing happen every winter, although not quite so extreme. I suggest have a humidifier around -- I use one particularly at night. You might want one near you during the day as your case is so severe. My rheumy thinks the problem is related to Sjogren's, so maybe that is something for your dr to check out and find medications to help.

There are automatic whole-house ones that attach to your furnace -- unfortunately I can't tell you how they work as my utility closet is not big enough for me to have one installed!

Good luck,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/13/2007 6:50 PM (GMT -7)   
Hi Sharen,
 
Yeah, your sjogren's might be flaring up right now.  Lynnwood's suggestion for a humidifier is excellent.  I live in a very dry climate, and a humidifier works wonders.  You can get a small one and put it beside your bed at night.  I'd talk to your rheumy about more if it continues to bother you.  But the weather and your sjogrens is likely the culprits.
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/15/2007 2:12 AM (GMT -7)   
Oh Sharen, bless your heart that sounds so sore. I think the humidifier is a good place to start. Even though mine is caused by my oxygen I get all crusted up and dry and nose bleeds if I don't hook it to my humidifier before it gets to my nose. I hope you can get to the bottom of this. Especially now that the weather had turned and the heat in the house tends to dry everyone out more.
love ya gal carol
God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


susie h
New Member


Date Joined Nov 2007
Total Posts : 14
   Posted 11/15/2007 10:10 AM (GMT -7)   
I too am deaing with this. I have a ulcer on the left side right now that hasn't healed since the beginning of September, but the good thing is that using a little neosporin 4-5 times a day helps alot. It does not dry out as fast as other things I have tried. I think maybe with the humidifier and Neosporin you might get some relief, not necessarily healing but relief.
My question to you is you mention " the Sjogren's antibodies and my previous rheumy thought my nose problems were to do with that." Can you explain this to me a little, I was unaware taht the nose sores could be realted to Sjogren's...My feet are always freezing and sometimes my hands too, do you think I should discuss this with rheumy? She has never mentioned any of this to me before.
 Diagnosed w/ SLE March 2005, Fibromyalgia 2005, RA 2005, Degenerative Cartlidge Disease 2006
Current Meds: Methylprednisolone 4mg/ Plaquenil 200mg/ Simivstatin


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/15/2007 1:31 PM (GMT -7)   
Sharen--
If you have sjogrens, you might ask about taking Evoxac, a newer drug similar to Salagen, but it is better I think. I had bad chronic dry sinus, esp. up north due to heat, and in addition to helping me produce more saliva, it increases the moisture in my eyes and apparently nasal passages because it has totally fixed my chronic dry sinus and sinusitis. I think it might just do the trick for you. It takes about a month I think to totally be fully effective, but I definitely noticed more moisture with almost the first dose. Also, it helped my gi tract for a long while by providing a little extra moisture there as well.

In the mean time, my mom takes a special overthecounter homeopathic nasal spray and she and our family do not believe in homeopathic meds, but shes been to mayo for reconstructive surgery (she got iin a bad car wreck when I was little and she has a lot of silicon in her face and nose) and she has really serious serious problems and she said that this nasal spray really was a miracle for moisture. It has some ingredient in it that is great. I will get the name tonight and post it for you. She has done everything from making her own nasal sprays to trying everything prescription and nonprescription and she said this spray is really unique.

I occasionally use flonase if I feel a head cold coming on to open the passages and reduce swelling to allow more moisture to flow. I try to keep a bottle around to prevent head colds.

I hate that dry nose feeling and feel for you and will let you know tonight the name of the spray she uses. I should know anyway because I may need it sometime. Also, I would ask for the evoxac if you feel you can take it. I was reluctant to be on yet another med, but even with my bad liver I can take it, though I take less than most people, and it is worth it for no bad side effects and pretty total relief of many sjogrens symptoms. My eyes are doing better and teeth and gi and nose. Its worth it for the nose alone. Redrose mentioned it in a recent post. You cant' take if pregnant.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 11/15/2007 2:08 PM (GMT -7)   
Thanks, Lynnwood, Ginny, Knickers, Carol, and Susie. I just got back from my rheumy appt. He listened as I explained what was going on now and carefully looked at my nose. He thinks it definitely has to do with the temperature change as well as my having to use the heat. He talked about how the heat is drying and does lessen the amount of humidity in the air. A+ for you guys! I think you are all probably really close to getting your doctor's degrees, right? This disease sure works overtime to gear you up for one! He named the Ayr product just as I was getting ready to pull it out to discuss it with him. He suggested my using that to moisturize the inside of my nose, but to use simple vaseline on the outside sore part. He said that the Ayr saline solution is made out of the type things your body makes naturally for moisture so it would be safe to use often like I'm having to do. (I started using it 3 times a day and right before bed the day I got it.) He said they also add things to it to prevent infection and bacteria growth. My nose has already much improved, but he could see what it had been doing (especially with the large red splotch on the end of it like a witch or something! I hate this disease!). It is not bleeding or really sore to the touch already! He did attribute some of it to the Sjogren's as well. We discussed my latest taper too. I am going to try tapering to 7mg every other day beginning tomorrow. Keep your fingers crossed everyone! Susie, I'm not absolutely sure the ulcer you're fighting can be attributed to Sjogren's (I'm no doc though). Sjögren's syndrome is where your immune system mistakenly attacks its own moisture producing glands. The mucous membranes (nose) and moisture-secreting glands of your eyes and mouth are usually affected first. My nose does not have an ulcer on the inside this time although I have fought those painful things before as well. I would suggest you trying some simple vaseline on that ulcer for relief and it helps it to heal faster too. That's a tip I read in Daniel J. Wallace's book and it did work for mine before. I definitely think it worth mentioning the problems you're experiencing with the cold hands and feet to your doc. Raynaud's phenomenon (extreme sensitivity to cold in the hands and feet) comes to mind although it is seen in lupus too. While your doc may not mention these things to you, you need to mention any problems you develop to her. For example, my nose did this last year, but it is already doing far worse than it did before. Your disease can change, problems may worsen or new symptoms even appear. Thanks for all of your support. Let us know how you do Susie. Thanks,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 9mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/15/2007 2:20 PM (GMT -7)   
Sjogren's can attack any mucus membranes anywhere in your body, like inside between organs. It does usually show up in exterior places first. I've found that my

eyes, nose, mouth, and ears,

have all been affected from at one time or another. I think I hate the ears the worst, they itch like the dickens -- rheumy's suggestion was a little vasaline on a q-tip -- works great.

Ya'll take care,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 11/15/2007 2:24 PM (GMT -7)   
Hi Marji, you must have posted as I was finishing up my last one. Thanks for the info. I think those meds you mentioned must be some of what he was referring to going over with me if trying what I mentioned in my last post did not relieve the problem. Thanks a lot. Take care,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 9mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp

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