New to the Board

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

New Member

Date Joined Jan 2008
Total Posts : 4
   Posted 1/10/2008 11:16 AM (GMT -6)   
Good Morning! I'm new to this Board, although not to healthcare forums. For various reasons, I have taken a 5+ year hiatus from posting on such a forum, but I have new information regarding my case, which has always been complicated and filled with much confusion, not the least of which has been caused by my treating physicians. For a long time, my pain was not controlled properly, not in that I was not given enough meds, but in that I was given so much, in such bad combinations that my mind slipped aways from em, and I lost myself to pain meds, anti-depressants, anti-anxiety meds, etc. A year and a half ago, I opted to have a morphine pump implanted, which has made all the difference in the world, and slowly I am returning to myself, complete with brain intact, proving to all around me that I was not an addict abusing my prescription meds.

My diagnoses for several years stood thus: rheumatoid arthritis, osteoarthritis, sjogrens syndrome, mixed-connective tissue disease, Hashimoto's thyroiditis, situational depression and anxiety disorders. I was approved for SSDI first time out for the full seven years, and have undergone 17 left knee surgeries (most major, including a replacement at age 37, all failed), 2 ankle surgeries, a left shoulder surgery in which one of the joints was removed. I also need to have my right knee addressed, but my OS is afraid that if we touch the right knee it will go down the road of my left, and I'll be left wheelchair-bound.

I have failed all RA treatments, until this past October when my rheumatologist put me on Plaquenil, which, for the first time, lowered my joints and soft tissue inflammation. He has now added Imuran, which makes me wary as I am prone to salivary gland infections, fevers of unknown origin, and other non-specific infections. I do not want to avoid all contact with human life or live in a plastic bubble, but he fears I also have Lupus, and Sjogrens affecting my internal organs as well as the tear and salivary glands. I'm deeply concerned, becaue I have finally been feeling better, but this medication scares me. I'm working to free myself of SSDI through the Ticket to Work program because I prefer independence, but fear that if I suddenly become prone to infections right and left, I won't be able to achieve my goal.

Any words of encouragement? Sorry i don't have a real question, but I wanted to introduce myself, and return to to the feeling that I am not alone in my struggles against AI disease and how it lays out immune system open to everything out there.

Thanks for listening to me vent. I'd love to hear from some of you.

painfuljoints smurf

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 1/10/2008 11:41 AM (GMT -6)   
Hey Painful!!!

Welcome to the forum sis!! WHOA!! You've had a miserable journey! I hope you have a live support group with members of one of your conditions. The Lupus Foundation has local support groups in lots of places around the US. You can click on the Lupus.Org link in my signature to locate one near you.

YES!! You've found a great place for support and encouragement. So post away and I'm sure you'll be a great help to us as well.

You are doing the same as my brother. He is a veteran who on full disability and trying to become self-employed and off of Social Security and Veterans Disability. They tell him he'll never work again . . . but he is building a business via Ebay and local events. He is determined to become independent again despite his disabilities.



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

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 1/10/2008 1:30 PM (GMT -6)   
I took Imuran for well over a year with no extra infections nor any adverse reactions - unfortunately it didn't do anything good for me either so we stopped it.

So it don't think it's necessary to be afraid of it - several people on this board have taken it w/good results. And, like I say, it never did anything to hurt me.

I figure anything that might make my life better is worth a try,

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

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 1/10/2008 4:41 PM (GMT -6)   
Hello painfuljoints,
My goodness, you have been through the wringer haven't you.  I'm sorry you are dealing with so much.  And to have disconcerting fears about your meds is one more thing you don't need to be dealing with.
I'm on Imuran, and have been for the entire length of my diagnosis. - almost 8 years now.  It has been a WONDERFUL treatment for me. I have had absolutely no negative side effects from it.  The ony thing I have to keep an eye on is my liver enzymes, as the drug is metabolized through the liver.  You might get some hair loss, but it's not permanent.  Your body needs a bit of time to get used to the med.  It's an old drug.  Been around a long time. Without it, I'd be on WAY more prednisone.  So it's been very good.  I haven't had any problems with infections or getting sick from being immune suppressed.  In fact, I'm the "healthiest" person in my family.   I never get a cold or the flu, ever!  They call me Wonderwoman, for that reason! LOL. 
So, I hope this encourages you to try Imuran.  It takes about 4-6 weeks to really show improvements.  So give it lots of time. 
Keep us posted on how you're doing 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

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

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 1/10/2008 6:47 PM (GMT -6)   
Hi, painful, I am another one that has had great results with no side effects while on Imuran. I have been taking it for almost 3 years. My doctor monitored me very closely for the first 6 weeks, I had labs done every other week and then every other month.

I hope if you try it that it works as well for you as it has for me.

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)

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 1/10/2008 9:45 PM (GMT -6)   
Hi Painfuljoints,
I am so sorry to hear about all you've been through!
(HUGS) and good thoughts coming your way. I hope you start feeling better, soon.
I recently started Imuran and, believe me - I totally know what you mean about being freaked out! I haven't been on it long enough to see results, yet, but I am hoping for the best!
Wanted to say hi and let you know you're not alone!!
Take care,
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.
Meds: Plaquenil, Imuran, Zyrtec, Prilosec, Nasacort, Prozac daily.
Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal (as needed).

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 1/11/2008 11:03 AM (GMT -6)   
Hi Painfuljoints and welcome. I'm really sorry to hear about all you have gone through and that now you are facing dealing with lupus and sjogrens on top of everything else. These AI diseases can be so tricky to diagnose and treat. I don't have any experience with Imuran, but you got some great feedback from other people here.

You have found a great forum here with wonderful people. Please ask any questions and also know that we are here for you anytime you need support. It's good to know you can come to a place where people can relate to what you are going through.

Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



Please allow HealingWell to continue helping others by donating:


Co-Moderator: Lupus and CFS Forums

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, September 23, 2018 1:50 AM (GMT -6)
There are a total of 3,005,798 posts in 329,264 threads.
View Active Threads

Who's Online
This forum has 161803 registered members. Please welcome our newest member, nadadot.
232 Guest(s), 2 Registered Member(s) are currently online.  Details
Serfr, Hibee