Nose cartilage loss from Lupus

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Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 1/28/2008 9:22 AM (GMT -7)   
Hi Everyone.  I went to my ENT Friday because of constant congestion.  My ENT did a coblation for congestion about two years ago and it worked wonders until last October.  He said the coblation looks fine, but the Lupus is destroying the cartilage in my nose causing my nasal passages to colapse.  He suggested surgery, but the implant is synthetic, so I declined.  Has anyone else had this problem? 
Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: CellCept plaquenil methotrexate prednisone prozac celebrex lisinopril actos lipitor nexeum seroquel arthritis tylenol multi vitamin C calcium/D flaxseed oil  PRN: ambien neurontin promethazine xanax
             Better living through chemistry :D    Donna
 


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 1/28/2008 10:20 AM (GMT -7)   
Hello,

Im a little scared I have ulcers in my nose and have since July basically is this how your nasal passages colapse? Im sorry it be a silly question. and did he offer you any other ideas on what to do
JessieRose


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 1/28/2008 11:00 AM (GMT -7)   
I have to admit I've never heard of this before. Hopefully someone else will come along that can offer better information.

Hang in there,

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


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/28/2008 4:12 PM (GMT -7)   
(((( Donna )))) I have never heard of that either, it sounds terrible! Let us know how you are doing.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 1/28/2008 7:34 PM (GMT -7)   
Hi Stacie, Lynnwood and JessieRose.  First, JessieRose as far as I know, nasal ulcers have nothing to do with cartilage loss.  Second, this is a pity party alert.  I'm quite depressed because I keep getting problem after problem (If it isn't one thing it's another).  Yeah, I have some "good days", but even then my brain doesn't function (I'm way past brain fog, can't drive most places, and have started CellCept).  I take 13 meds a day which enable me to live with that low level of pain. I hate taking all these meds. A few days ago I made a photo colage of me at various positions I worked and of my daughter and I on vacations.  It helped brighten my mood, but now my mood is in the toilet.  Why do I keep getting sick?  Am I doing something wrong?  Does anyone have any sugestions?

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: CellCept plaquenil methotrexate prednisone prozac celebrex lisinopril actos lipitor nexeum seroquel arthritis tylenol multi vitamin C calcium/D flaxseed oil  PRN: ambien neurontin promethazine xanax
             Better living through chemistry :D    Donna
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/28/2008 7:58 PM (GMT -7)   
Hi Donna,
 
I haven't heard of the nose cartilage problem, but, lupus will attack soft tissue and tendons.  I'm being treated right now by a physiotherapist for my neck arthritis and bad shoulder. He really emphasized how aggressive lupus can be on our tissues.  I thought it was interesting.  Learned something new.  So I think the possibility of this being the case for you is a good theory for sure.  I would be terrified of the thought of surgery.  How are you coping?
 
It's okay to have a pity party Donna.  We all do.  I'm having one right now too.  Like you, it's one stupid problem after another.  How much can one person take of all this?  Seriously!  Don't you feel like you're losing a part of your sanity?  I sure do.  I think the ups and downs that our moods go through are very common.  I feel bi-polar some days.  I just think we have an awful lot to think about daily, and life in general is stressful.  Everything combines to make us really crazy some days. 
 
I don't think you're doing anything wrong.  Your body will go through these cycles of being very well, and then being really unwell for no particular reason.  I'm right here with ya!  I was in remission just a short time ago, now in this past 6 months it's been a nightmare.  I haven't changed anything!  I'm still doing the same stuff, taking the same meds, but life is totally different.  That's life with lupus. It's completely unpredictable.
 
Just keep your support network close and handy.  Do what you can to minimize stress (I wish I had a magic pill for that), and keep going to your appointments, like you already are.  It'll all calm down.  Patience is lupus' middle name I think.
 
((((hugs)))))
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, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/28/2008 8:38 PM (GMT -7)   
(((( Donna ))))) I am so sorry you are having a hard time. Go ahead and have a pity party, I will be one of your guests! I wish I had some words of wisdom for you, just hang in there and know you are not alone, we are here for you. Hugs and love
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/28/2008 8:52 PM (GMT -7)   
Hi Donna,  Like the others I hav't heard of it either, but I have come to the conclusion that nothing is out of the question with this disease. I really doubt yu are doing anything wrong. People in this group feel different at difference times. We can't compare each other. The brain thing I can diffinently relate to. I'm to the point of it being way past fog. I get afraid alot I'll put somthing down and immediately forget where i sat it. Or omone will tell me a name that I need to know and I have  to call them back because in 1 min. I have forggottten it. Yes somtimes we can laugh about fog things we do but when the brain really seems to get involved there is really nothing funny about it
It sounds as though you may have to consider some type of surgery wither you want to or not. Are you seeing a conselor? I just got the name of one that willl take mu insurance, chronic illnes, depresion, anxiety is all screams for counseling to me. You know I had heard of lupusbefore but really didn't give it alot of thought, but I sure never thought it could rob ya of so much of  your life,
and don't call it a pity party it''s coping with this disease as best as you can. Plus I don't know what your financial situation is but all the little co pays and stuff add up. I figured out how much ny bills are gonna be this month and even before food I will have 35 dollars left.
well I just want ya to koe I love ys snf eill krrp uoi in my prayer
arol 
 
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3,Singular,nitro spray, aciphex, diovan. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 1/28/2008 9:45 PM (GMT -7)   
Butterflake,

You most certainly are not having a pity party. You are simply ticked off about all the stuff that you've been having, all the meds, how your life is altered so much and all the rest. I'm in the same boat you are right now (have you seen me?) We just have to keep it afloat even if it means taking a few days off because our arms are so tired of rowing (of course we're not on a cruise ship; we have a dinky raft.)

I, too, don't drive anymore except for the 8 blocks to Walgreens to -- you guessed it -- pick up the meds I can't get on the 90 day plan. Oh, I did figure out a way to get to the local Target. I can get to the school where I used to work (it is 6 blocks away), then go a little further until I'm in the parking lot of Perkins. From there I parking lot hop to Target. I never have to get on any more streets! Those are the 2 places I go on my own. And if I use up too much energy in Target, I have to sit in the car in the parking lot for awhile until I think I have enough energy to keep my wits about me as I parking lot hop back home. I take you through this boring story just to let you know that you are not alone. It's way past fog.....the brain just doesn't process and react fast enough. I've been taking cellcept for 2 1/2 years along with enough other meds that I'm embarassed for anyone to see my gigantic size pill keeper.

I don't have any knowledge about lupus affecting cartilage. I do know they do this on knees: somehow use other cartilage in existing cart. The implanted cart. somehow grows. And voila new cart.! My DH had this done a few years ago which explains why I cannot remember much about it and have to resort to being vague.

Seriously, Donna, I'm so sorry you are in 'that place'. Take care and trust you will not be there long (unless I decide to hold you hostage on the raft!)

lots of xoxoxoxo emmie
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/29/2008 7:33 AM (GMT -7)   
((((((((((Donna))))))))))

I didn't have time to read the comments from the others, so I hope this isn't too repetitive . . . but

(((((((((((Donna))))))))))) gosh that would be hard to take sis. Of course you are upset. Its bad enough when our disease takes our health . . . but when we lose even more dignity with a disfigurement it is sometimes a harder loss than the disabilities and infirmities. I'm not a vein person, and I don't wear makeup, except for lipstick . . . but I really do care how I look. No one could understand unless it happens to them, how devastating it is to worry about a facial disfigurement.

Sending you a box of chocolates, some hot tea, and some tissues!!! I hope you'll keep us updated.

Blessings!

P.S. Can't he use some cartilage from other body part? Or would that be destroyed as well. Oh my. *sigh*

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 1/29/2008 12:19 PM (GMT -7)   
Hi Ginny, Stacie, Carol, Emmi and Rosie.  I couldn't stop crying last night, so I finally took a xanax and although I'm not cheerful today, I've pulled myself together, except for my nasal cartilage of course.  Ginny, although I wish you weren't sick, it's reassuring to read "seriously how can one person take all of this?" Carol, I see a psychiatrist and take 80mg prozac daily, but I'll consider adding a counselor so I don't become downright creepy.  Rosie, I have plenty of fat the docs could use to replace my cartilage.  As a matter of fact, the docs can have all the fat they want.  Dearest Emmi, I'm right there with you in the raft; you just don't know it 'cause I'm not rowing right now.  If the raft sinks, we must find Das Boot. Well, until it sinks too, then we can take one of their rafts, board the raft with our man Wilson and wait for a nice ship to rescue us.  Of couse after that we will once again be parking lot hopping to our favorite pharmacy.  Thank you all for your encouragement-I really appreciate it.  Love, Butterflake

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: CellCept plaquenil methotrexate prednisone prozac celebrex lisinopril actos lipitor nexeum seroquel arthritis tylenol multi vitamin C calcium/D flaxseed oil  PRN: ambien neurontin promethazine xanax
             Better living through chemistry :D    Donna
 


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 1/29/2008 1:20 PM (GMT -7)   
Im so sorry that you are going through all this. I had a pity party last night I called my Mom and cried,but I felt a little better after I just needed to vent a little. Hope you have a better day keep your head up:)
JessieRose


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 1/29/2008 10:29 PM (GMT -7)   
Flake,

I am NOT sharing a raft with Wilson, but I truly hope we are capable of doing the hop thing to our favorite pharmacy!

Glad you feel a bit better today. Are you getting a second opinion about your cartilage? Let us know, ok? And please invite me to any of your pity parties so I can invite you to mine :-)

xoxo emmie
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/30/2008 9:40 AM (GMT -7)   

Donna, you might still feel like really "off" today, but dang girl.  You have not lost your humour!  I read your posting to us all, and I was laughing the whole way through it.  Laughing "with" you.  Not at you!  Keep that sunny sense of humour sweetie.  It'll get you a long way!

Have a happier day!

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, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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