Disease Progression

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Snr
Regular Member


Date Joined Dec 2006
Total Posts : 66
   Posted 3/19/2007 3:39 AM (GMT -7)   
My Rhumey does not think any of my organs are involved yet.  I don't know if this is due to my blood work coming back negative for Anti-dna and the other specific tests.  I guess the uncertainty scares me and I want to know for sure.  I've been on meds for over a month and the fatigue continues and my body is still covered with peticka (red dots-mixture of small and big).  The nausea is better and stress seems to be a major factor and I cannot keep up the pace here in Korea working 12-14 hrs a day.  The 8 hour duty waiver has helped some what.  Will I start to feel worse IF the Lupus attacks my organs..such as fevers etc.,  Is there a chance since it was caught early that it will not progress or did you all start out like I did?  I feel bad at times because I read what you all are going through and it makes me feel bad about complaining.  It just seems once you get one question answered there are more that come up.
 
I went to a book store while I was home (in the states) and they did not have one book on Lupus and I didn't have time to go to another store. 
 
 
God Bless!
 
Snr

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/19/2007 4:08 AM (GMT -7)   
Hi Snr, I'm sorry you are feeling so bad. I imagine your job is pretty draining. It's hard to say if it will get worse or not. Some people have lupus and never know it. They have no symptoms. Everyone is so different. With the right meds there is a good chance that your symptoms will improve and knowing what is going on with your body may help them treat your symptoms faster may help keep it in check better. As for the books. you can go to the bookstore on the link at the top of this page. You can order online. and part of the proceeds will keep this board up and running. So it's a win/win situation. (just a thought).

I hope you get some rest and get feeling better. Try not to worry I know easier said than done.
I'll be praying for ya.
hugs
carol
God Bless
Carol
 
. Diagnosed Lupus Nov 06. xanax X3,triam high BP, percocet, inhalers,COPD. oxygen Plaquanil400mil, Pred. as needed. effexor.


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/19/2007 5:33 AM (GMT -7)   

Snr,

  I'm sorry your having a rough time....((Hugs)). Please don't think you are complaining....I know before and after you are dx'd lupus can be scarey. Ask all the questions you need to and vent anytime. We are all here to help each other through this.

  If you get a fever or other symptoms its not always a sign of organ involvement, but your doctor needs to stay on top of things to get you on the right mix of meds that work best for you. Fevers are very common in lupus as well as other symptoms.

  Like Carol said, you can get that book from this site and a number of books on lupus as well. Read and research all you can on this. When I was dx'd, almost 17 years ago now, I had no idea what lupus was, but knew that my cousin died from it so at that time I thought just because she died I would too, but the more I read and learned, I found out it can be mostly controlled with meds. Of course there are some people that are fatally affected, but that is RARE these days. Most of them are severely effected and aren't dx'd and left untreated until its too late. I have had lupus for 30 years now and still going strong and I was left untreated and dx'd for 13 years!!

  Hang in there and keep on your doctors about your symptoms as they pop up. It is very hard working a full-time job and feeling bad...((Hugs)). Can they reduce your hours a little more to help until your meds start working better?

  Please keep us updated and ask all the questions you want. We are here for you! Take care and rest as much as you can. You are in my thoughts and prayers.

                                                         (((Hugs))) Babs



 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Post Edited (mom46) : 3/19/2007 6:37:29 AM (GMT-6)


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/19/2007 12:31 PM (GMT -7)   
Snr, I'm sorry you aren't feeling well. I can't imagine that you could have kept up on 12-14 hour days, so I'm glad they were reduced to 8hrs, but that's still really hard on you when you are fighting lupus.

Like Carol and Babs said everyone is different as to how lupus affects them. It's just really important to let your doc know if anything changes or gets worse or if you have a new symptom. It can be very scary worrying about things like organ involvement, but a lot of it is treatable if caught early enough.

Don't ever feel bad about coming here for support if you are feeling sick. That's what we are here for. Hang in there and take care
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; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/19/2007 3:07 PM (GMT -7)   
Hi Snr, I know it's hard not to worry about this disease and how it can affect us but please don't put this kind of stress on your body (((hugs)))). There is no way of knowing if lupus will affect your organs or not, your doctors will stay on top of things by checking your labs and you should keep him/her informed of any new symptoms that come up. Not everyone with lupus has organ involvement, thank goodness.

Most meds that are used to treat lupus takes more than a month to really get in your system to begin working for you. Also your work schedule sounds like it could be affecting your lupus symptoms, especially the fatigue. We must do what we can to take care of ourselves by getting plenty of sleep / rest, eating right and minimizing stress (I know, it's easier said that done but you've got to try).

In my opinion the best book out there on Lupus, is by Daniel Wallace, he is a very good rheumy in CA, USA! Hang in there and take care.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac 2003, Raynaud's 2004, Costochondritis 2004, Lupus 2005 and Sjogrens 2006
Meds:Imuran, Plaquenil, Flexeril, Sulindac, Levoxyl, Folic Acid and magic mouthwash (as needed)


Snr
Regular Member


Date Joined Dec 2006
Total Posts : 66
   Posted 3/20/2007 3:47 AM (GMT -7)   
Thank you all so much!  I had such a bad day today.  During mid-morning I looked down and noticed my wedding ring was not on my finger and I don't remember what I did with it.  I know I washed my hands but cannot remember if it was Sunday, Monday or today.  I have been heart broken all day and can't stop crying.  I know it is only a material possession but I can't remember.  I can't find it anywhere. 

ericsmom
Veteran Member


Date Joined Jan 2007
Total Posts : 1042
   Posted 3/20/2007 7:17 AM (GMT -7)   
Snr
 
I just want to add that I was diagnosed with lupus in late 2003, and I do get some involvement with my heart, although it cud also be the RA, and also, it wasnt a problem till I experienced a horrific trauma, so...according to my rheumy, that shock was what put me in hosp, but he is still thinking it was a combination of both the PTS and the 2 illnesses.  Other than that, I have no organ involvements, and what I do have, is manageable.
But I have to say, how on earth do you work 8 hrs a day? let alone your normal 12-14 hours?!! You will find stress will tire you out big time!!
 
I think what the others have said should put your mind at ease.
And, I hope you find that ring really quick!!!!  Good luck with that.
Please take care,
 
Diane 
A/Fib, diagnosed Aug, 1997, R/A diagnosed in Sept. 1998, Pericarditis and Lupus in Dec, 2003, Diabetes, diagnosed march, 2004
 
sotalol, digoxin, coumidin, plaquenil, prednisone, metformin, diamacron, wellbutrin,fenofibrate


MsBear
New Member


Date Joined Apr 2007
Total Posts : 5
   Posted 4/3/2007 12:57 PM (GMT -7)   
Hi,
I found this forum tonight whilst researching RA & Lupus on the Internet - at this moment in my life I havent got a proper diagnosis of whats going on with me, is it RA or Lupus, can it be both, I would appreciate if you read through the below and gave me your views... :-)
 
I am 36 years old female, no other health issues than a mild PCOS.
My late mum had RA her entire life (since she was a child).
For 10 years I have had "problems" with my left knee, all of a sudden it was swollen and painful and this has been coming and going for a long time, I have also had pain in my ankles for the past 5 years and have found out I buy flat shoes and not highheels anymore.
 
End November 2006 I got an eye infection and went to hospital, Pink Eye diagnosis, i soon developed a cold, with sore throat, fever, and a very bad cough that I still have now in April. I got two sets of antibiotics during December but I still had the cough. I also developed bad joint pain and at one point so bad in my "bad knee" I could hardly walk, I thought I had got a DVT, and went to hospital were they ran bloodtest twice and confirmed DVT, an ultrasound confirmed the day after that I didnt have a DVT.
Then we started to investigate if it could be rheumatic.
My doctor (GP) took a bloodtest for Rheumatoid Factor and it was negative, then I was sent for an xray of my knees, confirmed OA - Osteoarthritis. They left me there, gave me painkillers and told me to "live with it". (Arthrotec75)
 
I didnt like that attitude and diagnosis so I arranged to see a Rheumatolgost privately and have for 5 weeks done the following:(I know I dont have all info needed, values etc)
Bloodtests, negative RF, positive SLE (Lupus), ANA - think that was negative, I had high platelet count (I cant remember the rest) bloodtest also showed I had 3 viruses in my system one was Parvovirus that I had at some point in my life
I had an xray of my chest (cough) which was fine
Isotope bone scan - didnt pick up much, wear and tear of joints, nothing significant
Synovial Fluid from knee - yellowgreen, no RF, confirmed inflammatory joints
 
On the 30 of March 2007 my rheumatologist said he was going to treat me for RA and Lupus, I asked what he thought and he said RA and said I could be a seronegative (my mum had RA) and gave me Plaguenil, he also wanted to give me a Cortisone shot in the bum but I said no. I am seeing him again in early May for further bloodtests and review.
 
What are your views on this?
 
 
 
 
April 2007 Diagnosis of - RA (not confirmed) & ESL (confirmed)
Current Meds -  Plaquenil/Arthrotec 75 (I have been offered Cortisone shot but rejected - need advise) Voltaren 
Additional Supplements - Omega3, Glucosamine & Chondroitin, Green Tea
Diet: fish, seafood, chicken, vegetables, eggs, oliveoil mainly
Weakness: red wine lol
 
 


bartlebee
New Member


Date Joined Mar 2007
Total Posts : 13
   Posted 4/5/2007 2:32 PM (GMT -7)   
Hi MsBear,

There are alot of different connective tissue diseases that mimic both RA and Lupus and its also possible to have Mixed Connective Tissue Disease which is a combination of more than one.

In your post you wrote that you had a positive SLE test. Do you know which test that was?

I'm also waiting for more info on diagnosis. I had an appointment with Daniel Wallace yesterday and the blood results come back next week.

Cheers

MsBear
New Member


Date Joined Apr 2007
Total Posts : 5
   Posted 4/5/2007 11:11 PM (GMT -7)   
Hi Bartlebee,
 
The test for Lupus was a bloodtest, the Rheumatologist had lots of rheumatic profiles on a sheet and he crossed one for Lupus and I went off and had a lot of blood taken for various things, he was talking about other values that didnt support Lupus, not sure if that was my ANA values etc, sorry newbie here - didnt pay attention to all of this at the time... will do going forward. :)
April 2007 Diagnosis of - RA & SLE
Current Meds -  Plaquenil/Arthrotec 75 (I have been offered Cortisone shot but rejected - need advise) Voltaren 
Additional Supplements - Omega3, Glucosamine & Chondroitin, Green Tea
 


bartlebee
New Member


Date Joined Mar 2007
Total Posts : 13
   Posted 4/6/2007 2:48 PM (GMT -7)   
Hi MsBear,

I'm no expert myself MsBear, but I would call your Dr's office and ask to have copies of all the labs sent to you. I have never heard of anyone being accurately diagnosed with Systemic Lupus on the basis of one test. Especially if you have negative ANA (although maybe you don't because I've heard that the regional labs get this test wrong alot).

I wonder what that test/profile was. If its the real deal, alot of undiagnosed people on this board could benefit by telling their doctors about it too.

Cheers

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 4/8/2007 8:40 AM (GMT -7)   
bartlebee said...
Hi MsBear,

There are alot of different connective tissue diseases that mimic both RA and Lupus and its also possible to have Mixed Connective Tissue Disease which is a combination of more than one.

In your post you wrote that you had a positive SLE test. Do you know which test that was?

I'm also waiting for more info on diagnosis. I had an appointment with Daniel Wallace yesterday and the blood results come back next week.

Cheers
If you did have mctd you would most likely be experiencing muscle weakness.  The first signs are difficulty going up stairs, getting up from chairs and toilets, raising your hands over your head, and possibly some swallowing problems.  MCTD is a combination of lupus, scleroderma (a tissue disease) and polymyositis (inflammatory muscle disease).  You could also have other symptoms of lupus and/or scleroderma but most patient have symptoms of muscle weakness to some degree.
 
Look at the www.lupus.org site and they have a checklist of symptoms for lupus.  If you have 3 or 4 of them you have the possibility of lupus.  Lupus is often accompanied by some other AI disease so it is always possible to have more than one. 
 
Keep in mind that you can have any of these diseases and not have confirmation from lab tests.  That is why it is important to list ALL of your symptoms and have your doctor look at the entire diagnostic picture.  I was diagnosed with lupus and then mctd before lab tests confirmed the diagnosis.
 
I am being successfully treated after having an extreme case.  Early diagnosis and aggressive treatment are the keys for any of these AI diseases.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.
 
Meds: prednisone (9mg & tapering), 150mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 

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