New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 3/25/2009 10:03 PM (GMT -7)   

Well I’m still in Dx limbo thus far with my Rheumy who’s a professor as well as the postgraduate director at UBC so I see a lot of students and postgraduate Rheumy’s.  But yet still no defined Dx.   I have been referred to the UBC Lupus clinic for a second opinion on Apr.1st hopefully I’ll get some more answers.   I’ll be glad when these tests and examinations are done so I can go back on my meds and not fell so bad.

 

I hope this finds everyone doing well

 

Bryan


DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, ?????  
Meds: Plaquenil 400mg, Prednisone 10mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg and Amitriptyline 10mg
Life is what you make of it.  Just something I try to remind myself every day.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 3/26/2009 6:18 AM (GMT -7)   
Hi Bryan . . . it sure is frustrating . . . but more than that . . . they took your meds away??? That's cruel. I hope you'll keep us updated.

Blessings!

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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/26/2009 7:04 AM (GMT -7)   
Bryan,
Sooooo frustrating! I will be praying for you! Hope you feel better soon. Judy

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/26/2009 1:22 PM (GMT -7)   
Hey Bryan,
 
Ugh, you've been off your meds a while eh? (Rosie, his rheumy took him off everything to unmask all the symptoms).  UBC as in University of British Columbia?  I was diagnosed at the teaching hospital here in Calgary. I actually got superb treatment because of all the smart up-and-comers! 
 
Good luck next week and let us know how it goes okay?
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

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 3/26/2009 4:53 PM (GMT -7)   
Wow, I can't belive you still are off your meds! Will keep you in my thoughts and will pray they can get this figured out so you can get on Meds that will give you relief! Let us know what you find out!

Amy

 

21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C


BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 3/27/2009 12:59 AM (GMT -7)   
Thanks everyone. Yes the University of BC as I always say two heads are better than one and the more the merrier. I just got back from the clinic because my legs have swollen up like over stuffed sausages. Hands feet and nose are freezing. Blood pressure is high and lots of protein in the urine no micro scope needed there. Back to see my Doc tomorrow to have a kidney test. I was in to see him today for additional LTD info forms and wasn't feeling to bad. Ltd is giving me a hard time with claim last day of paid sick days was Mar 23/09 the day LTD sent the request for more info. So no income for foreseeable future thank god warmer weather is coming i don't like camping in the snow. It's got me a little stressed to say the least and the rash on my face is beaming like Rudolph's nose. I guess stress does effect whatever I have.

Again thanks for your thoughts and prayers

Bryan
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, ?????  
Meds: Plaquenil 400mg, Prednisone 10mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg and Amitriptyline 10mg
Life is what you make of it.  Just something I try to remind myself every day.


BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 3/27/2009 9:46 AM (GMT -7)   
Last night was fun 3am up to the hospital because the swelling in my legs was up to hips and lower back. Bunch of blood work done and x rays of lungs and lower back. Sent home at 4:30am with some Oxycontin and Tex 3 with orders to get into my doc today. I finally got a couple hours of sleep thanks to OXY but I don't like taking pain killers. I guess i get the results today of the blood work. This darn swelling and pain just won't go away. It's a soggy day here on the Wet Coast which sure doesn't help with the pain.

Anyways I hope you all have a great day.

Bryan
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, ?????  
Meds: Plaquenil 400mg, Prednisone 10mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg and Amitriptyline 10mg
Life is what you make of it.  Just something I try to remind myself every day.


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1548
   Posted 3/27/2009 12:58 PM (GMT -7)   
Hi Bryan. I'm sorry you've been suffering so much. Were able to see ur doc today? Did he tell you the results of your lab/x-rays? I hope at least he is able to give you meds to relieve ur swelling (if that's possible). Take it easy and let us know how ur doing. Love, Butterflake

Systemic Lupus ('05), depression, diabetes, fibro, gerd, hypertension, IBS, sleep apnea  Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, actonel, tylenol arthritis, neurontin, phenegren, flexeril, vit C, multi vit, flaxseed oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 
 


BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 3/27/2009 10:19 PM (GMT -7)   
Hi butterflake, Yes i got in to see the doc today. funny results though low potassium even though I Had taken 50mg of potassium 4hrs before the blood drawn. CRP, ESR and WBC high. HB, HCT and the Potassium low. The doc has put me on Hydro 25 mg that should reduce the swelling and lower the blood pressure. Sent off to the lab for more blood and urine work up to do more tests for possible kidney problems. By now the pump should be running low on blood lol. I didn't think your fingers would actual turn blue but boy they sure do the tips of my finger are turning all kinds of beautiful shades of blue. Still off the other meds until at least the 17 and I've got that sucker circled on my calendar.

Thanks
Bryan
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, ?????  
Meds: Plaquenil 400mg, Prednisone 10mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg and Amitriptyline 10mg
Life is what you make of it.  Just something I try to remind myself every day.


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1548
   Posted 3/28/2009 12:21 AM (GMT -7)   
Hi Bryan. There's a fairly common autoimmune condition called Reyneauds sp? that causes hands and feet to turn blue-purple. I have it, but not seriously so I just need to make sure my fingers and toes are always warm. Some lupies here have bad cases. I'm sure they'll answer you soon. You sure have lots going on with those lab values! Thanks for the update. Love, Butterflake

Systemic Lupus ('05), depression, diabetes, fibro, gerd, hypertension, IBS, sleep apnea  Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, actonel, tylenol arthritis, neurontin, phenegren, flexeril, vit C, multi vit, flaxseed oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/28/2009 7:34 AM (GMT -7)   
Hey Bryan,
 
What is Ltd?  Is BC Health Care giving you any difficulties? They shouldn't be!!  Yeah, the wet weather won't be helping you one bit. IF you're really low on potassium, 50mg won't even put a dent into it. You might need a prescription strength dose.  Some people are low on vitamin D so they get 12,000mg of it injected!  The normal daily dose of vit D is 1000mg.  I'm sure your doctor will bring this up with you.
 
I think Donna is right, your blue finger tips sound like Raynaud's Phenomenon.  Very common in Lupus.  I have it too.  Keep those fingers warm.
 
Don't hesitate to go to the ER if your pain and other symptoms get unmanageable for you. Don't suffer needlessly, okay?  I know it's really difficult to work right now.  I'll be keeping you in my prayers.
 
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

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 3/28/2009 9:32 PM (GMT -7)   
It's my LTD from work the administrator is Great West Life (GWL) and they are the worst. I sent in my application for LTD a little over five weeks ago. I phoned them 19 of march as I had not heard from them. They told me they were just starting them. My short term illness & injury plan (STIIP) ended on the 23 of march. I get a letter from GWL dated the 23 of march requesting additional information from my doctor and myself on the 25 of march. I phoned GWL and said "what now" I was told GWL does not pay benefits until the claim has been totally accepted and this could take two months or so to finish. I asked what do i do for income in the mean time I was told "go to income assistance". So I look into everything and wow was I surprised $531.42 with a$375 shelter max. That's not the best part I to weight until the end of April to get that but only if i'm accepted.

Bryan
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, ?????  
Meds: Plaquenil 400mg, Prednisone 10mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg and Amitriptyline 10mg
Life is what you make of it.  Just something I try to remind myself every day.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 3/28/2009 10:19 PM (GMT -7)   
Bryan--
Watch out because the hydro 25 (I'm assuming you mean the diuretic hydrochlorothiazide) will lower your potassium even more. There are other diuretics that don'thave this effect. It seems like they need to figure out if the swelling is from kidneys, liver, or both. Liver damage can cause high blood pressure since all the blood goes through there and heaviness on the top, GERD, and lots of other troubles. Do you know if they are checking you for liver disease/damage as well? An ultrasound of the liver, or abdominal cat scan or mri would show not only kidneys but liver too. I say this because anyone on meds or really most people nowadays are candidates for liver damage. I have severe steatohepatitis and its pretty much running along with my autoimmune disease, if not the triggering event. Actually, there's been some benefit shown with probiotic yogurt and liver problems as well as whats been posted here. It might be a thing to try every day if you can. Oh, liver disease can cause the red face and nose as well as lupus.

Anyway, I hope you aren't freezing up there. I was just telling my son I wanted to retire up there! Be careful with the potassium. It can be very dangerous if you get too much or too little. My electrolytes get messed up from my liver, which causes a form of diabetes. It does seem cruel for you to be off your meds for a long period of time. Actually, your income assistance is better than in the states. Unless you are pregnant, in the state I live in, you are not eligible for any medical assistance. Income assistance in some states, is as low as just ten dollars in food stamps. Andyou can't have a car or anything, you have to sell everything to get that. its disgusting. Maybe you can find a room to let where the people would cut you slack until April, when you get your IA. Maybe a church, you know minister or someone through a church or something could let you stay for a few weeks. I hope things get better and the insurance company and IA get you approved really fast and that your docs figure you out soon and get you comfortable and not swelled up.
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


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/29/2009 7:02 AM (GMT -7)   
Hi Bryan,
 
I've heard things about GWL where they are really stingy about giving out your paid benefits. I hope you have a decent experience with them. I'm with Manulife, and they're not that great when it comes to major things like what you are dealing with.  Makes you wonder if any insurance companies are on the up-and-up.
 
In Alberta, we have what is called AISH.  Assured Income for the Severely Handicapped. Yes, I qualify for this.  I'm apparently, severely handicapped..... It pays out $1050 a month and covers all of my medication needs, ambulance trips, eye doctor, dentist.  Everything. Part of the benefit plan includes a payment from CPP.  Is there anything like that in BC? 
 
I can imagine this is extremely stressful for you. If I think of anything else you can do, I'll let you know. 
 
Take it easy!
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

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 3/29/2009 6:33 PM (GMT -7)   
A bit off topic, but fits in right here in a way -- and the first sentence sounds bad but keep reading...

How do you feel about the label "severely handicapped", esp. when you are out and about doing wedding pictures? I know that's not a full-time gig....and the other day someone else referred to themselves as "permanently disabled".

I was dx with Lupus in 2000 and got worse (mostly cognitive dysfunction & neuropathology rather than organ involvement) until Cellcept turned things around in 2005. Now I seem to be fairly okay (ie could go shoot wedding pictures if that were my thing), but not back to normal and certainly can't work my previous job or an 8 hour day. Even though I have qualified for LTD and USA's SS Disability I still don't quite accept the permanent and severe labels. I feel more like "retired" and thus guilty that I should be working.

Am I being stubborn and not accepting my illness? Or not accepting the label? Or should I be trying to work? I am still, after 8.5 yrs, confused as the dickens about this part of things.....

Thanks,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 08, 2016 12:59 AM (GMT -7)
There are a total of 2,734,541 posts in 301,223 threads.
View Active Threads


Who's Online
This forum has 151337 registered members. Please welcome our newest member, hellokd10.
178 Guest(s), 1 Registered Member(s) are currently online.  Details
celebrate life


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer