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Forum Moderator

Date Joined Jun 2008
Total Posts : 1469
   Posted 10/30/2009 2:59 PM (GMT -6)   
Hey Everyone!!! I was just curious how things are going with everyone. Missing several people posting and hope things are going well!
I am doing ok. All my hair has fallen out from Cytoxan but it has been fun buying wigs and things to cover my bald stubbley head. HEHE...I have bought 3 wigs and am having a blast with them. Still on 60 mg of pred(with no weight gain shocked shocked shocked ) and cytoxan but my kidney function is getting worse and worse so we (my doctors) are lost with what to do and are currently contacting doctors who are more experienced with Lupus nephritis to see if they have any suggestion. No joint pain which is amazing  :-)! I have cut my hours to 30 hrs a week and it has helped greatly with my fatigue!!! Other than that things are going great!
How is things with you???? I miss hearing from everyone and sure hope things are ok!!!



Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril, hydrochlorothiazide, Midrin, Ambien, Flexeril, Ultram, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...


Forum Moderator

Date Joined May 2005
Total Posts : 6931
   Posted 10/30/2009 3:12 PM (GMT -6)   
I lost my main computer earlier today and will be missing for a few days. Sorry.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 10/30/2009 3:51 PM (GMT -6)   

Hey Amy! good to see you. Sounds like you got a good attitude. wink . I forced myself to get up and make porkchops and scalloped potatoes today. It would be so easy to stay in bed but I am so swollen i figured if I could move around it would be the best thing for me. I'm still on 60 mil. of pred. but I have about 20lbs of water in my ankles.

Docotr put me on 10/500. vicodin and 25mil phentylen patch. I havn't used the patch yet. It kind of scares me. It says only take it once every 72hours. I'll wait to take it when I am to sick to get out of bed.

well that is about it from here. I'll be checking the posts to see what everyone is up to. Sorry to hear about your puter Lynn. You must have had a couple bucks in your pocket. That's when my computer acts up. God forbid I might actually have an extra dollar.



systemic sclerosis sine scleroderma,sleep apnea,Megaloblastic anemia
what ever that is.

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 10/30/2009 7:53 PM (GMT -6)   
Amy, I said it once and I'll say it again..... you always have the best attitude ((((hugs)))))! I think wig shopping would be fun, you could go short, long, curly, etc!!!! Sometimes I wish I could get extensions, my hair is oh so thin now and I have wear it short and use lots of hairspray and not just any hairspray, I use Aussie's instant freeze or Chi "helmet head" LOL the name says it all tongue

I really hope your docs figure out a med that works well for you. I am doing better, still on pred, about another week to go. Not sure what will happen when I come off it, rheumy seems to think this flare (which was pretty bad) was caused from work, stress, etc. I have some important decisions to make about work, please say a prayer that I will make the right one.

I pray everyone is pain free and doing well!
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)

Forum Moderator

Date Joined Jun 2008
Total Posts : 1469
   Posted 10/31/2009 11:10 AM (GMT -6)   
Carol!!! Its great hearing from you. I have to agree with you on the extra buck. That seems how it always works. I really am craving some home cooked food and your pork chops sounded great. My family is visting family in Costa Rica and everytime I try to cook it ends up turning black or tasting what I imagine dog food to taste like! Maybe one day I will master the art of the stove... Can they put you on a water pill to help with the fluid? I know that is no fun. Is it at the stage where it feels like jello yet when you walk?
Stacie, It is fun shopping for wigs...the good thing about loosing my hair is I actually hate hair so its kind of cool just waking up, showering and then putting on a wig. Takes me about 10 min to get ready for work. LOL. I love the name Helmet head...that is hilarious. So you have another week of prednisone, how are you feeling? Is the unsteady/dizzyness feeling comming back? Headaches? I sure hope that the pred helped you get out of the flare. and thanks for the encouraging words...I think it is all in my genes because it is how my grandparents are...2 of them have RA which has deformed them majorly and I can't recall ever seeing them without a good attitude.
Sorry Lynnwood about your computer...Hopefully it will be a easy fix, if that is possible!!!!
How is everyone else doing?



Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril, hydrochlorothiazide, Midrin, Ambien, Flexeril, Ultram, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...


Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 10/31/2009 2:24 PM (GMT -6)   
I am doing okay. We lost this first court thing so we have to appeal.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Regular Member

Date Joined Feb 2009
Total Posts : 108
   Posted 10/31/2009 3:12 PM (GMT -6)   
busy beyond all reason . . . exhausted . . . lurking :) but thinking of & praying for you all . . .

There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
-Albert Einstein

Dx: SLE, Sjogren's, Reynaud's, Peripheral Neuropathy

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 10/31/2009 5:53 PM (GMT -6)   
Hi all:

Sick with swine flu here. Lurking hoping you all are doing well. Life is just to difficult right now.

Love ya,
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 11/1/2009 7:58 PM (GMT -6)   

I have another week of Pred and I just realized today that the unsteady / dizzy feeling is gone! Could that have been a warning of the flare? It all makes sense now, first the vision disturbance then the unsteady feeling then the nausea, etc. I had felt run down for weeks, guess I should have taken some time off from work. If this happens again I hope to see the warning signs more clearly but with lupus I don't know if that is possible! Because each flare seems to be very different and hit different parts of the body. This disease is very unpredictable.

I pray everyone starts feeling better soon. Barb, take care of yourself, you are in my prayers!
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)

Regular Member

Date Joined Oct 2006
Total Posts : 281
   Posted 11/1/2009 8:44 PM (GMT -6)   
Hi Amy, I am here, slowly recovering from a brutal week dealing with my Irritable Bowel Syndrome, pain beyond belief. But I am feeling better finally. We are trying to avoid getting the Swine Flu, it scares me so bad, I hate to think of anyone getting it, let alone anyone with illness's such as ours.
Hope everyone is well and doing ok.
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA,IBS (Irritable Bowel Syndrome) Acid Reflux,
Taking Plaquenell, Folic Acid, Synthroid,Nexium, Singulair,extra Strength tylenol when needed,and Zytram.

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 11/1/2009 9:15 PM (GMT -6)   
Sending gentle hugs and prayers for everyone! Everyone is so inspirational and supportive,
this forum is truly a blessing.

Starting back on the Methotrexate tomorrow after a two week break. My bronchial/ lung
infection has cleared up. Yipeeee......doing the happy dance!



MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 

Regular Member

Date Joined Apr 2009
Total Posts : 122
   Posted 11/2/2009 9:38 AM (GMT -6)   

Hey everyone,

It's been quite a while since I've posted anything, but I do read up every week on what's going on.  I've been doing fairly well and just keep praying that I stay on this course that I've been on the last few months.  I have noticed some joint issues with the changing of the weather.  We have had a lot of rain here in the south and it seems like the temps keep fluctuating as well, so I truly believe the whole barametric pressure issue does effect me on these days, but I really can't complain for the most part.  Had my yearly female check-up and everything came back good.  My gynocologist has now put me on  prometrium and cenestin as she feels I am approaching the menopause era (yippee) one more thing for us women have to look forward to.  So far I really haven't had any problems with the hormones.  I go get an eye exam this Thursday and go back to my rheumy on the 12th for a bone density test and check-up.  Sometimes I really think I don't want to admit what is happening or what can happen in the future with this disease but I know I have to live with it the rest of my life and just hope for the best quality of life that I can have with my family.  It kind of hit me the other day when I was reading some obituaries in the paper and so that a woman from the area had died from complications of lupus and she was just 50 which I will be in December. Live your life to the fullest everyday!! I hope you all have a good week.

Your southern diva,


DX - lupus and carpal tunnel syndrome

RX - plaquenil, etolodac, lisinoprol, folic acid, predinisone, prometrium and cenestin, flaxseed oil, fish oil, calcium and Vit D and a daily vitamin

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 11/2/2009 10:57 AM (GMT -6)   
Hello everyone . . .

I've been MIA because I'm feel so good. I've been busy with life and enjoying a huge calm in my symptoms. I am still very careful to pace activity with rest and eating well and getting enough sleep . . . I'm not symptom free . . . but I'm doing REALLY well . . . yeah!!!

I pray that all of you can experience some well time too!!!


In His Grip

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

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 11/2/2009 12:16 PM (GMT -6)   
Hi All! I haven't been around alot lately either! I do think of you all and praying for you. I am doing real good. My kidneys have greatly improved. I'm still having some mild lupus symptoms but am truly amazed at how far i've come recently. What a blessing! At the beginning of this year I was dealing with dialysis and one infection after the other. I was hospitalized for 30 days from Jan to Mar! I never dreamed I would ever feel decent again. Please, for those of you struggling, don't give up! There's always hope! Love ya, JUdy

Regular Member

Date Joined Apr 2003
Total Posts : 104
   Posted 11/2/2009 1:03 PM (GMT -6)   
Hello all
I'm just getting over bronchitis and hiding from swine flu. Got results back from pulmonary function test, doc says I have restrictive lung disease, which had diminished my lung capacity. Guess that's why I huff like a 70 year old chain smoker when I try to walk around in the yard.
Otherwise I feel like I'm doing pretty good. Have been lurking and praying for you all. Hope everyone is doing as well as can be. Barb, I hope you feel better very soon.
MCTD (SLE, Scleraderma, polymyocitis), Reynaud's, Hypo-Thyroidism, Pericardial Effusion/pericarditis, Irregular heartbeat, Hiatal hernia.
 Prednisone, Procardia XL, Methotrexate, Reglan, Lasix, Nexium, Potassium, Folic Acid, Synthroid, Cellcept, Toprol, 81mg Aspirin, Vitamin D, Vitamin C, Multivitamin, Extra Strength Tylenol, Flexeril, Vicodin.

Veteran Member

Date Joined Dec 2005
Total Posts : 1944
   Posted 11/2/2009 8:28 PM (GMT -6)   
Hi amy! You sound like me when it comes to the wigs, they can make you look completely different, I still have a few from ages ago. I'm sorry to hear about the kidneys but glad you are in a good mood with no joint pain.  I hope they figure it out soon.  I just finished getting an aspiration bx with no pain meds on my neck, it wasn't bad but I was scared because I had to be real still, it was on one of the nodes between the carotid and jugular, so it was nerve racking. They found something that made them have to take extra samples for extra testing. Maybe I will know soon what is going on with me.
I have been living and resting and had a recent houseguest, an old friend I haven't seen since I was a child, who ended up being a "drinker" to put it mildly and with the bx and all it was a real mess. I kinda lost it and dropped my old buddy who I hadn't seen in 38 years off at the airport to catch a standby, it was so bad. so it has been a rough few weeks.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 11/3/2009 12:03 PM (GMT -6)   
Amy, good post.

I had been rockin' and rollin' along much like Rosie and then foolishly flew to Denver to help my son and dil finished putting their house together after a remodel. The place was dusty and a mess and they have a baby on it's way - in fact it's a few days past due - so I had volunteered to come help put the nursery together. After a week of that I crashed. I must have washed 20 loads of wash, moved furniture around, and basically did all the things I hire to have done here. On top of that, when I filled my pill boxes for the week I forgot to put in plaquenil and I suppose that's more the culprit here than the hard work. I had intended to stay for another week - at my brother's house - and just play, but I flew home instead. My bed has never felt so good.

I've been in bed since Saturday and see my new rheumy on Thursday. I'm afraid that the lortabs are causing insomnia so I got a script of lunesta and slept like a baby last night.

So much like you guys, it's just the old lupus roller coaster. I know what to do but sometimes just get stupid and stubborn and pay the price. I'm a lot happier girl when I take it easy and thankfully my hubby knows that.

The holiday season is upon us and we should all remember to not overdo it!
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

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