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

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/26/2009 9:32 AM (GMT -7)   

Hey everyone.  Haven’t been here in a few days (weeks maybe?)  Just wanted to give an update to what’s going on with me. 

 

Had my regular rheumy appt last Wednesday.  Nothing really new… we both discovered at that time that I have Raynauds.  I’m sure I’ve had it but I never really pay attention.  When she came in the room, she immediately saw my toes and they were very blue and they were very cold and hurt pretty bad.  I was wearing flip flops but that’s because it was almost 100 degrees outside.  Did basics, checked for joint pain, etc etc then went and had blood test and urinalysis.

 

Last Friday, I started having really bad thoracic pains and eventually they made it up to my neck (I’m sure because of the tension).  My neck was feeling stiff and sore but my back was feeling like it was burning and I couldn’t stand to have anything touching it (I thought my bra was going to kill me!)  This lasted all weekend and into Monday so went to see GP on Monday.  She said she thinks I have fibro on top of my lupus and sjogren’s.  Says skin sensitivity and muscle pain is classic signs.  She told me to mention it to my rheumy on my next appt (3 months) and she rx’d Flexeril to take in the meantime.

 

I got my urinalysis and blood results on Tuesday and everything looked pretty good.  It was just a CBC and liver function tests.  My Alkaline Phos was a tad low which is not much of concern but my urinalysis shows bilirubin in my urine.  I have no idea why and my doc just said that she isn’t sure but to continue as I’ve been doing with my meds, treatment, etc.  I look up bilirubin in urine and it looks like it can point to some serious stuff so now I’m a little freaked.  I’ve tried calling her office and the nurse doesn’t call back (typical!)  I’m scheduled to take my MTX tonight, I would hate to add fuel to the fire.    


Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009, Raynauds 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid

Post Edited (dbab) : 6/26/2009 10:41:03 AM (GMT-6)


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/26/2009 7:34 PM (GMT -7)   
glad to hear you are doing somewhat okay. I was beginning to worry. A lot of the long term ppl have disappeared of late.
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


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/27/2009 7:01 PM (GMT -7)   
Thanks redrose, I haven't been popping in too much as I mostly just want to sleep after work and the computer is the last thing on my mind. Think I'm having a lot of neuro issues too as I'm constantly feel like I'm in 'lala' land and not in a good way LOL. I have to get a new Neuro soon but I'm having trouble hunting down one that I think would be a good match. They have a great one at Hopkins but I'm just too far away. Still waiting on my rheumy to get me in for a Neuropsych test.

I know what you mean though, I'm hoping not many people here lately because they are doing well and not because they are having problems.

Hope you're doing well.
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009, Raynauds 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/28/2009 7:22 PM (GMT -7)   
Gosh, you really got flared up. I'm not allowed to take MTX because it will probably send me into liver failure. It is hard on the liver. Some of the other meds can also irritate the liver, like flexeril, and the tylenol in the hydrocodone. The back pain you describe reminds me of my arthritis I have scoliosis between my shoulders and they say it doesn't hurt, but it does, especially if it is getting worse. Liver can cause back pain that radiates, but I would watch your temp for meningitis. Mine hurt first btween my shoulders then ran up to my neck and head ad I got a fever. Arthritis makes that pain too, when its thoracic. A good back rub can really help. Also, I sleep with the lidocaine patches on like Barb, use them at night to get good sleep. There also is a volataren (muscle relaxer) cream that is new and I can use it because topicals are not so hard on the liver.

Sometimes getting rid of the other liver irritants can let you take other hepatotoxic drugs, lessen the load. You are right in your concern. I would want a single consult with a hepatologist, not just GI, and an abdominal ultrasound if they can't get it to go away. It never hurts to get one of those once in a while to make sure everything is okay. Try not to worry. Most of the time it is meds. Docs just don't realize how hard these long term meds are on our bodies. And then adding on all the prns and stuff... That's why I try to do topicals. If I let my PC docs and non-liver docs give me whatever they wanted, I'd be real sick or dead! Because my liver is bad, its always a negotiation, but I think everyone should negotiate to protect their kidneys and liver if they can. They just often don't have good long term studies on lots of these meds, and seldom blame the meds when damage occurs.

I hope you feel better and getout of pain. Keep the lidocaine patches and the voltaren gel in mind for the back pain. I use ben gay and a heating pad alot. Ultram takes the edge off, but isn't safe for many with liver problems I don't know why I can take it, my doc says its hitor miss which drug will irritate. Lots of vitamins can be rough too, especially fish oil and non water soluable. I am supposed to take vit e and fish oil to improve my liver, butI have to take areal low dose, or I turn yellw and get sick. I avoid any vitamin they have't tested me for and determined I need.

I hope it goes away. Probiotic yogurt is supposed to be good for the liver. That really does help. I hope your pain goes away. Yellow fly bites cause an infection type problem like you are havng in me with severe headaches and fever. Just becareful of tat meningitis, take your temp alot.

Let me know how you are doing. I hope you have otherwise been having a good time!
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


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/29/2009 9:57 AM (GMT -7)   
Thanks Marji, I talked with a nurse friend and she said that with the little amount of bilirubin that I had in my urine is usually not a sign of concern. I guess that if my doc thinks it is ok, maybe I should just continue as instructed. It could be that I am overreacting... that is known to happen LOL.

I actually take Vicoprofen (generic) for the reason that you were speaking of. Doc says stay away from Tylenol because of the liver concerns. Even so, I hardly ever touch my Vicoprofen. Save it for when I really, really need it because I know that even NSAIDs affect the liver also.

I used to have the Lidocaine patches a long time ago, forgot all about them actually. I'll keep them in mind. The pain seems to have gotten better. Thinking now, I'm actually tapering Pred and I'm down to 1 mg (need to update my sig). Never thought that these little changes can affect me so much but I know better because I've read on here that they do. The pains I was having was around the time that I went down to 1 mg (I was alternating 2mg and 1mg before).

Thanks for the tip on the yogurt. I didn't realize that it had a good effect on the liver. I especially like greek yogurt (with a touch of honey) so I'm going to have to grab some next time at the market :)
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009, Raynauds 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 11, 2016 3:07 AM (GMT -7)
There are a total of 2,736,257 posts in 301,364 threads.
View Active Threads


Who's Online
This forum has 151454 registered members. Please welcome our newest member, rmk1990.
148 Guest(s), 4 Registered Member(s) are currently online.  Details
George_, rockyfords, Stetsonva, lavendar


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