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BlessedBe
Regular Member


Date Joined Dec 2007
Total Posts : 24
   Posted 12/27/2007 10:38 AM (GMT -7)   
Hi, I'm new to this forum it was recommended by my sister who deals with other autoimmune issues.  I have SLE and a ton of what I call additives that come with it.  I have been diagnosed on and off for over 15 years and recently met with a rheumatologist as symptoms have started to become unbearable for me.  I have started on plaquinel (spelling wrong) and it is making me light headed, naseaus and feeling just ill.  I'm OK with that as long as in the long run I get results and the side effects stop.  My major questions are these:
 
Discoid rash - I do not have the typical butterfly rash as seen in many lupus patients.  My facial rash is over my face, forhead and now starting down one side of my neck.  They are patches of red, raised, discoid areas. The areas of from 2-5 cms around and there are close to 10 patches.  Since starting the med. I have not noticed any difference.  Does anyone know what may help with this?
 
Steroids - I am a registered nurse on an oncology floor and have seen so many devastating effects of steroids.  I was placed on them years ago and vowed to never take them again. Possibly harming myself out of spite?  Does anyone have anything positive to say about them?
 
Flareups - I don't seem to get any 'flareups' it's just constant. None of my symptoms (fatigue, arthritis, weight loss, rash, swollen glands, sjorgens symptoms, raynauds symptoms etc) ever go away or lessen at all.  Is this similar? If you do have flare-ups what parts get worse and what seems to lessen them?
 
I appreciate any answers, thanks so much for "listening'
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 12/27/2007 11:16 AM (GMT -7)   
Welcome to the forum Be!!

Sorry you are having so many "overlapping" issues. Overlap disease/conditions or all too common with Lupus and most here have an overlap of two or more issues.

Discoid rash . . . SO sorry for you. The discoid rash is much more difficult to deal with than the malar rash, as it tends to scar and is more disfiguring. I really feel for the discoid crew. I have chatted with some who have had steroids injected into the discoid patches to help with really resistant spots. If you get them on your scalp, they can cause permanent hair loss, so they are not to be ignored. A dermatologist may be more sympathetic to the discoid issues as the rheumy, who thinks more about the functions of the body.

Steroids - are thought to be a fire extinguisher. They are life saving for sure, but they do need to be used with care, as you say, they DO have nasty side affects that need to be considered. They also spare many here from extreme organ damage. So for many, they are an absolute necessity. Each of us needs to work through this with our docs individually to decide what is best. I have muddled through w/o the use of prednisone and after many years of dealing with flares lasting from days to years, have decided (with my rheumy) that I should go on a medrol dose pack at the beginning of my next flare to see if we can nip it short. So, while I don't have organ involvement, I am ever so grateful to have this option for future flares. I think a zap of prednisone would have spared me from a two year stint in the recliner.

Flares - You sound like a very busy person (like most of us) and those of us who are driven to participate fully in life, can really set ourselves up for long or frequent flares. Most members here have learned at some point, that - for us - life needs to paced (a delicate balance of rest and activity). This pacing takes lots of practice to figure our just how much we can push ourselves w/o causing disease activity . . . but it is well worth learning, as it is our number one weapon against flares.

There are some helpful links at the bottom of my signature with lots of good info. I think you will enjoy the "Lupus Resources" topic, which contains helpful suggestions from all the members here.

Welcome to the forum!!

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


BlessedBe
Regular Member


Date Joined Dec 2007
Total Posts : 24
   Posted 12/27/2007 11:21 AM (GMT -7)   
Rosie,
 
Your reply was so well balanced with care, information and realism~! Thank you a million times over.  I've always been afraid to post d/t people automatically assuming what works for them is the 'must have' for everyone, that fear is no more.
 
Ps) I'm always blessed, I just have to pay attention :-)
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 12/27/2007 11:28 AM (GMT -7)   
Great!!! I'm so glad when things come across appropriately. Sometimes, it is hard express a genuine care and concern in the written word . . . especially before people get to know you.

I am thrilled when I've been able to help in any small way. I think you will enjoy the feeling of family here. We make our way through lots of issues and help each other daily. Its been a bit quiet over the holidays, but I'm sure it will pick up soon. You'll meet some very special people here.

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


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 12/28/2007 8:13 AM (GMT -7)   
Hi Be,
   Welcome to the forum. Rosie gave you some wonderful advice so not much for me to add. As you will see we are all different but, similar with our symptoms and how our medicines effect us.
   I don't have the butterfly rash either. I did have it when I was younger out in the sun all the time. I have had lupus for 30 yrs, but was only dx'd 17 years ago. I do get rashes from time to time, mostly when in the sun.
   It's a tricky balance getting the right treatment that works well for each person. Sometimes it can take awhile. Also, balancing work, family, everyday tasks and trying to adjust our lives to accommadate these diseases can be very frustrating at times. With me it was a constant battle between the mind and body for many years. Now I have mellowed out at the age of 49, and listen to my body.... :-) .
   As for Prednisone, I took it 10 years without a break. Now I take it as needed. It does have bad side effects, but sometimes the benefits out weigh the risks. For people with Fibromyalgia it can cause more pain on higher doses. I have to keep my dose 30mgs or below when I take it or my Fibro will flare bad. We are all different though, so what works for one may not work for another.
   I wish you all the luck with your treatment and hope you start to feel better soon. Please take care and keep us updated. You will be in my thoughts and prayers.
                                                          Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/28/2007 8:53 AM (GMT -7)   

I wanted to ask if you are taking brand name or generic plaquenil? I ask because some have found that they do better on brand name and others on generic- the fillers used are different with each and vary by manufacturer with the generic.

I too hate steroids, but have learned that sometimes they are the only thing that make life bearable. I too suggest a dermetologist for your rashes. I have many rashes but am fortunate enough not to get discoid rash, though I do have psoriasis (I lucked out and my RA med takes care of this). With the scarring that discoid can cause I suggest you find a dermetologist who specializes in autoimmun skin conditions if at all possible. I have many of the same issues as you and suggest that perhaps more aggressive treatment might make life easier and less painful. Plaquenil can take 6 -12 months to feel the full effect and when it finally begins working you barely notice because it begins so very slowly. The thing is if you go off you quickly learn that it was a major help. My rheumy has used 10mg or less of prednisone with me because my bones are already thinning. I have taken higher doses short term and dose packs when things got really bad. The thing is that sometimes no matter how much we hate it prednisone is the only thing that will get things under control. I suggest that you seriously consider anti-inflammatory medications because lupus and RA do their damage via inflammation. I usually take 200-400mg celebrex but right now am pregnant and cannot. I have also been on humira in the past, though I am now on Enbrel. It has made a huge difference in my RA. Left untreated RA will destroy your joints. I am rather shocked you are not at minimum on NSAIDS. I do sugget you try a short course of steroids and that if you need them long term you use a bone builder and also avoid high calorie snacks- instead eat fruits, veggies, and popcorn when the steroid induced munchies hit as it will limit or even eliminate weight gain from the increased appitite. I am so sorry you have suffered so long.

I have been more active than most over the years and remained so until I became too ill and too weak to keep up. Now I have cut back my activity level but am still trying to do things that keep my mind working and allow me to have some small semblance of normalcy. I wish I could help more. You will just have to listen to your body and rest more than you would like because not doing so can make life harder and in some cases shorter. It is good that you are now getting treatment. Good luck. BTW I love your username.


Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


BlessedBe
Regular Member


Date Joined Dec 2007
Total Posts : 24
   Posted 12/28/2007 10:04 AM (GMT -7)   
I am so greatful to my sister for giving me this website and ecouraging me to use it! I FINALLY feel as if people get it. Thank you, thank you, thank you! And thank you for not bashing my anti-steroid choice. :) I see my rheumy (have to get use to all of the 'technical' terms used here) :) in a week and a half. I am going to take in a list of questions based on your responses. I wonder if #1) I can get the steroid injections into the discoid rash? It's so bad, I was telling patients at work that I was Rudolph, I just missed the nose! My nose is the ONLY thing on my face that is not affected by the rash. I look like I camafloauged in red! I work 3 twelve hour shifts and by the end of 2 days my face is on fire and I have to sleep the next WHOLE day and a half to make up for it. I also have a two year old so on my days off I want to spend time with him. It's not sorking so well. My 13 year old (yep, 2 and 13) usually ends up watching the baby after school so I can sleep. So I have some guilt issues going on. My husband is self employed and has avascular necrosis with one hip replaced 5 years ago and the other one needing it this year so no insurance company will touch him. It's up to me to carry the families insurance and working full time is the only way to do that.
OK...back to questions for the Doc. #2) My TSH (thyroid) was way off the charts indicating huge hypothyroidism so I wonder if I need to start a supplement for that as well? Synthroid or something?
#3) Would I be able to take steroids PRN (as needed)?
I have felt this way for so long, since I was 14 and have just attributed it to me. If there was a way to feel better...wow, just the thought alone is overwhelming.

OK, I'm done rambling. Thank you all SO much for hearing me and being such a huge source of comfort. Oh, Red my username is a reminder to myself...people always say 'God Bless' etc. and I just know that I am ALWAYS blessed, I just have to pay attention!
Wife, Mother, Nurse
SLE with all the additives, sjorgens, raynauds, RA etc.
Plaquenil, Effexor, serequel for sleep.
Refusing Steroids


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 12/28/2007 10:30 AM (GMT -7)   

Hi Be,

   Since you have never taken prednisone your doctor will probably want to see how you do with it for awhile. Of course, taking it PRN would have to be a decision with you and your doctor. I have been taking it for so long that I know when I need it and my doctor lets me put myself on a taper dose when needed. If I'm flaring bad she will regulate the dose.

   Was your TSH elevated or low? Is it hyper or hypothyroidism? I'm sure your doctor will give you the right med to help get your numbers back in check.

   Sorry, I don't know about the injections into the discoid rash. I have only gotten injections in joints for pain, or in the arm or rear for inflammation.

   Ask all the questions you want. You will get alot of help here. This is a great group!! Please take care and keep us updated.

                                                          Babs



 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Post Edited (mom46) : 12/28/2007 10:37:59 AM (GMT-7)


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 12/28/2007 12:38 PM (GMT -7)   
Hi again Be,

Make sure to catch the cheat sheet for doctors visits in the "lupus resources" topic (link in my signature). A typed list is very helpful and my doc just takes my sheet (I bring two) and uses it for his notes and puts it in his file. Makes my visits VERY productive. He loves it!!

Sounds like you are getting it all organized. Will your job allow you to work shorter shifts?? Can you nap during your breaks? I did the nap thing when I was working and my boss was VERY good about it. At first, I used my car, making sure to park in the shade in the summer. Then I found a nice spot right in the office. I found that my boss and co-workers were very good about it . . . even though I had no dx back then. I just thought I was always tired.

I also used to park the car somewhere on the way home from work and catch a little nap. It seems that driving could lull me right into a daze and I didn't want to drive in that state, so I'd catch a nap then too. Very helpful when I got home and family was none-the-wiser. We also had a couch and tv in the basement and I used to catch a nap between loads of laundry when time allowed. All of these little rest periods were very therapeutic, even though I had no idea what was wrong with me. I guess we just find ways to cope.

You will likely find that your soars get better when you make time to rest. Does your two-year old like stories?? I taped my kids favorite books with my voice and rang a bell when they needed to turn the page. Then I'd ly on the bed and block the child on the "wall side" of the bed and play the tape while I took a little rest. They thought it great fun and it gave me some time to get my feet up. OH . . . I feel for you. The things we do to cope!!

Glad you found us. Keep us updated about your doctor visit.

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


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/28/2007 2:34 PM (GMT -7)   
It's kind of ironic- I can honestly say I had 4 of the 11 criteria at 14. I had 2-3 since I was so young I can't recall a time I didn't have some of the symptoms of lupus/AI issues. I have always had the malar rash when I am tired or sick and sun sensitivity. It is always nice to remind one's self of the blessings we do have. I for one have my mind- my body may be practically useless but my mind is far from it.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone

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