Ok...one more question

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BlessedBe
Regular Member


Date Joined Dec 2007
Total Posts : 24
   Posted 12/28/2007 10:58 AM (GMT -7)   
I was just reading the post regarding swollen glands.  Does anyone else have lymphodenopathy (Continuous swollen glands)? Mine have been swollen for years, to the point where they are actually visible on my neck..blech. They are continuosuly painful and always swollen.  They did a biopsy to ensure it wasn't cancer and that came out good, but nothing takes them down.  Hmm...I'm wondering if all of my questions lead to one answer...steroids? confused
Wife, Mother, Nurse
SLE with all the additives, sjorgens, raynauds, RA etc.
Plaquenil, Effexor, serequel for sleep.
Refusing Steroids


Victoria72
Regular Member


Date Joined Oct 2006
Total Posts : 221
   Posted 12/28/2007 1:23 PM (GMT -7)   
Blessed...

Please dont tell me that. I am still dealing with the swollen glands, although they are not as painful as they were a a little more than a week ago. The antibiotics did nothing but give me a yeast infection. (Ack!) The medrol did seem to help a little with the swelling. I would hate to think that this may be something permanent. Right now they come and go, getting larger and more painful at night, especially when Im tired.

It will be interesting to see what the others have to say on this....


 
Victoria
 
Mother of four, full time Systems Analyst
 
Sjogrens, Crohns, suspected Lupus, Pancreatitis Dec. 2005
 
Meds:  Medrol injections; Plaquenil 400mg, Vicodin, Benadryl, Zyrtec


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/28/2007 5:35 PM (GMT -7)   
Hi Blessed,
 
Have you been tested for Sjogren's Syndrome?  The classic way it presents itself is through swollen glands.  Oh!  Yep, you do have Sjogrens.  I just read your signature line!  Haha.... oKay, so has your rheumy considered that the glands are swollen due to a Sjogren's flare up?  Yes, lupus can make them swollen too, but considering you have Sjogren's I'd rule it out first.
 
Yes, prednisone will help with this.  Sorry!
 
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


Snickerdoodle
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 12/28/2007 7:43 PM (GMT -7)   

Hi Blessed,

The glands on my right side of my throat have been swollen for about 2 years. Just that side.  I dont take steroids, so that is not my problem. Go figure!

Melissa


Dx: UCTD,Raynaud's,iron deficientcy anemia,proteinuria
Rx: Multi-rec folic 500, Mobic 15 mg, Plaquenil 400mg


BlessedBe
Regular Member


Date Joined Dec 2007
Total Posts : 24
   Posted 12/29/2007 3:08 PM (GMT -7)   
I'm sorry to scare you Victoria, I don't think that yours would be chronic since they do seem to get worse and better. Mine just kind of .... stay there. With them getting worse at night when you are tired, it makes sense that it may be viral. I think too with you being on steroids and me not, you have an advantage. Please let me know how you are doing!
Wife, Mother, Nurse
SLE with all the additives, sjorgens, raynauds, RA etc.
Plaquenil, Effexor, serequel for sleep.
Refusing Steroids


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/30/2007 5:34 AM (GMT -7)   
blessed, I'm sorry that it seems like all roads lead to having to take steroids. I hate them too. I think ost people do but unfortunately I havn't found a way around them yet. If I remember right you havn't been on plaquenil very long have you? It took me 6 months before I got any releif with that. Maybe you could take 5mg. of pred until the plaq. kicks in? It's just so hard to see you so miserable.
hugs
carol
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 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


BlessedBe
Regular Member


Date Joined Dec 2007
Total Posts : 24
   Posted 12/31/2007 10:34 AM (GMT -7)   
Carol,

Thanks for you post. :) It's funny how being miserable is just kind of a way of life. I am flat out just terrified of steroids. Yep, I've only been on plaquenil for a bit over a week. I see my rheumy at the end of this week and I plan to address all that I've learned here. I wonder if first I should get on something for my thyroid? Maybe if that is adjusted the rest of the symptoms will be more bearable?

Thanks for the comfort!
Wife, Mother, Nurse
SLE with all the additives, sjorgens, raynauds, RA etc.
Plaquenil, Effexor, serequel for sleep.
Refusing Steroids


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 12/31/2007 1:32 PM (GMT -7)   
BlessedBe . . . the thyroid DOES wreak havoc if it is out of whack. So DO have your doctor look into that. Yes . . . the plaq works so insidiously that most of us aren't aware when it actually kicks in. But when we go off it, you know you made a mistake. I stopped mine about a year ago and 5 months later (yes, it also takes a while to go out of your system) I landed in big trouble again and spent a miserable summer.

Your doctor can also check your cortisol levels and see if you are deficient. Especially if you've already been on steroid treatments. If your body isn't making at lease a "normal" amount, you can also feel plain lousy. Many members here are on a maintenance dose of less than 10mg.

Make sure to post all about your doctor visit. We live vicariously through each others successes!! and we give great hugs when the visits are disappointing.

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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