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Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/16/2008 8:22 PM (GMT -7)   
Hey everyone...  been reading quite often - but not posting...guess I feel like my situation isn't nearly as bad as others - so I shouldn't complain.  I live in Northeast Ohio and I am six months into the lupus ride.  Trying to keep educated about symptoms, treatments, etc., as well as keeping tabs on my labs and drugs.
 
The November MRI turned out fine.  And, the neuro hit it right on the head (no pun intended...lol), I was having rebound headaches caused by the Darvocet I was taking for joint pain.  No more narcotics for me!  The bummer part is that because I'm allergic to sulpha, can't take any of the "migraine" meds.  He gave me Keppra to help with them.  And, in the worst case scenario - if they last too long, I just go to his office for a little "IV cocktail".  Was on topamax to help keep the migraines away - but I've decided THAT drug is from the devil himself!  I had SO many of the nasty side effects...I couldn't take it, so weaned off of the topamax.    Ended up with a kidney stone (probably from the topamax).  Had an ultrasound of my kidneys.  No stone was visible - but they said I had "mild hydro-nephrosis".  Have an appointment with the urologist next week to see what that is about.  Checked what my latest blood creatinine level is - but it is within normal range.
 
Currently, trying to wean off of prednisone.  Was at a high of 30 mg/day...now down to 12 mg/day and dropping one mg per week.  Funny thing is...I was hoping as I dropped the dosage of prednisone that I would start seeing some of the face bloating subside...but it seems like it is getting worse, if anything.  I "lovingly" refer to my face as being the size of a satellite dish...trying to keep a sense of humor.  Yesterday it was like I could feel puffiness around my eyes just sitting there.  Having tolerable joint pain...  think it is just going to be a part of life.
 
Went for my three month visit to the rheumy.   My labs are improving slightly.  My anti-dsDNA finally dropped some...down to 193 from >300.  Still showing significant lupus activity and inflammation, tho.  The one thing I talked to the rheumy about was this itching that I get sometimes.  Like...it drives me CRAZY!  To the point I scratch until I bruise myself.  Doesn't happen all the time, or in the same place.  He doesn't seem to think it is lupus related, but, I think it is.
 
I also think I have a bit of the malar (sp?) rash.  However, it is not raised & bumpy or bright red.  It is more of a pink color.  Seems like it gets worse in light.  But - he doesn't think that it is a malar rash.  Whatever...  he frustrates me sometimes.
 
Probably the thing that is the worst is the fatigue.  Can't seem to get a grip on that.  Haven't quite got the "pacing" thing down yet.  Had a couple good weeks around Christmas...didn't need to nap on Sunday afternoons for two weeks in a row!  LOL...that was a BIG DEAL!  But, seems like the fatigue is back in all its glory.  After working eight hours a day, don't feel like doing anything when I get home...so end up eating dinner, cleaning up and sitting in my recliner doing sudoku.  I really need to start doing some walking...just can't seem to work up the energy for it.
 
Have my six month check-up at the opthalmologist tomorrow to make sure the plaquenil isn't screwing up my eyes.  Need to breakdown and fill my prescription for glasses tho.
 
Well, that's about it...
Take care everyone and hope you have a pain free day.
 
~Kim
 
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 1/16/2008 8:29 PM (GMT -7)   
Hi Kim,
Another from NE Ohio - Cool!
Hope things start to even out for you. This is a great place - full of helpful people!
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Imuran, Zyrtec, Prilosec, Nasacort, Prozac.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Prednisone.


firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 1/16/2008 8:33 PM (GMT -7)   
Sounds like you've pretty much covered everything. The pacing thing is really hard to get. Before I was diagnosed and started having real problems with my Lupus, I worked a full-time job, plus 3 nights a weeks waitressing AND (get this) training to be a firefighter. Now, I still work my full-time job, and a part-time job to get the benefit of a free gym membership 1-2 nights a week and I train twice a month at the fire department. I've always been really independent and hate to ask for help, but you've got to adjust and ask for help and say no every once in a while, or you'll also learn how much you are going to pay for it. I also have to try hard to wind down a little earlier in the evening or I can't get up the next morning. I know everyone loves getting out of bed in the morning, but sometimes I won't even hear my alarm clock. That's bad.

I wish you luck and you really seem to have a great attitude about this whole thing. It can be really hard some days to face the fact that you will have to deal with certain unpleasant things for the rest of your life, but I've always turned to my friends to help me over the fence. It's good to surround yourself with caring people and make sure you talk to people on here-I'm fairly new and have been treated with nothing but respect. I wish you well.

Take care!
~Firebabe~
 
"Challenges make you discover things about yourself you never really knew."
 
SLE and Class II Lupus Nephritis


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 1/16/2008 8:39 PM (GMT -7)   
Dakota,
You said you haven't posted because your situation isn't as bad as others. I don't know if you can "measure" who's symptoms are worse. It's all life altering and very frustrating. I know what you mean about the "pacing" thing. I've been sick since '99 and I haven't learned how to "pace" yet either. However, the fatigue thing sometimes doesn't give you a choice. I don't know about others, but i've learned there is no use trying to fight the fatigue. It is mind boggling fatigue isn't it? It's so hard to explain to those around you. I hope you have a good support system. You can definitely find that at healingwell. Take care of yourself. God Bless You, Judy

FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 1/16/2008 9:00 PM (GMT -7)   
Dakota wrote "The one thing I talked to the rheumy about was this itching that I get sometimes. Like...it drives me CRAZY! To the point I scratch until I bruise myself. Doesn't happen all the time, or in the same place. He doesn't seem to think it is lupus related, but, I think it is."

I forgot to mention on my earlier post that this happens to me, too! I scratch so hard sometimes that I bleed, and it still itches! The bruises are awful - I look like somebody (besides me) beat me! My DH tells me that I scratch in my sleep!
Feel better!
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Imuran (BAD reaction after 10 days - so no more), Zyrtec. Daily Meds: Prilosec, Nasacort, Prozac.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Prednisone.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/16/2008 9:33 PM (GMT -7)   
Count me IN on the itching when I'm flaring. Its not the skin that itches, its deeper down. I bruise myself too. If its not the lupus, maybe its the meds?????

BTW, as you taper your pred, some of the pain and fatigue can be associated with that. There was an explicit post about that in the last few days, but I sure can't remember what topic it was in. I'll bump it up if I find it.

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

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


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7022
   Posted 1/16/2008 9:55 PM (GMT -7)   
The 'itching' is the same as when some people have surface 'tingling' and is probably a little bit of neuropathy sneaking in -- ie a little inflammation in the nerves. Until it gets bad enough to show up in the bloodwork I'm not sure the rheumy can do anything. If it persists, you might consult a neurologist.

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


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/17/2008 6:42 AM (GMT -7)   
Thanks everybody...WOW...good to know I'm not the only one with the itching thing...was beginning to think I was crazy!  LOL 
 
Also glad to know that I'm not the only one who hasn't figured out the pacing thing.  It's like, when you have a good day, you need to "make hay while the sun shines".   But - then you do pay for it.  Then there are days when you haven't really done anything and you still need the rest.  Today for example!  I got up about 6:30 this morning and feel like I could go take a nap (it's only 8:30!).
 
Firebabe...had to chuckle about the firefighter training.  I was a firefighter and ran squad when I was in my 20s.  Just a "little" stress, over-exertion and lack of rest associated with that job!  lol
 
I do have a good support system.  For a while when things were really bad, my church was supplying dinners for us that we could just pull out of the freezer when I was just too tired.  They did that for about two months.  My friends are great - especially listening to me whine when I need to whine and laughing with me when I can laugh.  Yesterday I met one of my friends for dinner.  I had hit my hand on something...you know - you do it and think "man that hurt".  But, by the time I got to the restaurant, I couldn't remember what I hit it on and it was THROBBING!  We had a good laugh over that one!
 
The hubby is a great guy - but I think he is in denial about me having a "non-curable" illness.  Seems to try to push sometimes...so I just have to put my foot down and say "I'm TOO TIRED".
 
As for the prednisone, I learned the hard way that I can only do a little drop at a time (no more than 2mg).  Tried to drop 5 mg and that was BUGLY (butt-ugly).  Headache, joint pain, fatigue.  Didn't take me long to figure that one out. 
 
Well...blessings to everyone. 
Thanks again for the responses and support.
Take care!
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/17/2008 7:19 AM (GMT -7)   
Dakota and FW: I live in NE Ohio too!!! I wonder how close to each other we live. I'm in Mentor.

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


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/17/2008 7:21 AM (GMT -7)   
I'm in Norton (by Akron).  My co-worker lives in Mentor!
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 1/18/2008 7:13 PM (GMT -7)   
I'm from North Canton! We are all neighbors!
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Prilosec, Nasacort, Prozac.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Prednisone.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/18/2008 8:45 PM (GMT -7)   
I think you two are at least an hour away . . . hmmmm we'll have to figure out a rendezvous!!!

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


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/18/2008 8:51 PM (GMT -7)   

Fran is about a half an hour away from me and Rosie, you are about an hour away...

~Kim


SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/18/2008 9:26 PM (GMT -7)   
No kidding . . . who knew ???? I am all the way to the north end of Mentor . . . right near the Lake.

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


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/18/2008 9:58 PM (GMT -7)   
Hey Kim,
 
You'll notice the pudgy face thing start to go away once you're under 10mg on the pred.  I know it's a nightmare living with that "moon face".  I'm glad to know you're doing the taper correctly!!  The maximum is 2.5mg every 2 weeks, so you're doing it perfectly.  Don't go faster!
 
Thanks for the update.  It's good to know where you're at, especially when you're so new to all this!
 
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

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