PDA

View Full Version : Newly Diagnosed SLE Lupus Patient



nancystubbe45
07-06-2008, 03:53 PM
Hi All. My name is Nancy. I am almost 48. I have had the red skin/rash symptom for some time. I had made an appt. with my dermatologist in March for April appt. I had to postpone, as one of my children, who had Cystic Fibrosis, passed away in April at age 22. After she passed away, I started getting all of the fatigue and stiff joint manifestations. I had bloodwork and biopsies done which came back positive for SLE. Now where I'm at, I was referred to a rheumatologist who ordered more extensive bloodwork and bone density and x-rays I am having done tomorrow, July 7th. I have a follow-up with the rheumatologist on July 16th. Currently, I take multi-vitamin, calcium, Hydroxychloroquine 200 mg. twice a day, and am just starting flaxseed oil and omega 3 fish oil. Any comments, concerns, suggestions, very definitely greatly appreciated.

Thank you so much,
Nancy

KathyW1958
07-06-2008, 04:29 PM
Hi Nancy and welcome to the site. My name is Kathy and I also have SLE, Lupus along with celiacs spru and Sjogrens Syndrome and CP. It is a lot to deal with but I am managing pretty well. I have had the Lupus for many many years. Thank heavens for the different medications that they have today. I am also on Plaquenil 400mg once a day and Imuran and Sulidac. I also have to have a B12 shot every single month. Well welcome to the site.

Hugs,
Kathy

nancystubbe45
07-06-2008, 04:49 PM
Hi Nancy and welcome to the site. My name is Kathy and I also have SLE, Lupus along with celiacs spru and Sjogrens Syndrome and CP. It is a lot to deal with but I am managing pretty well. I have had the Lupus for many many years. Thank heavens for the different medications that they have today. I am also on Plaquenil 400mg once a day and Imuran and Sulidac. I also have to have a B12 shot every single month. Well welcome to the site.

Hugs,
Kathy
Thank you very much for your reply. The very best to both of us....

NoodleMom
07-06-2008, 05:40 PM
Welcome.
My name is Kasey. I was diagnosed in November with lupus It affects my joints and muscles.I also have a rough time with the brain fog. Most of he time I cant put even two words together to make any sense. I have lost more words that I ever thought I even knew. I recently developed GERD and my thyroid and IBS are outta wack. The only thing that has improved is my diabetes. It seems that it is under pretty good control.

Im sorry to hear that you have lost a child. That is so rough. I have a child in heaven also. She died when she was 4.

The people on this site are warm and friendly as Im sure you will find out. They will be along shortly to welcome you.

K

nancystubbe45
07-06-2008, 05:47 PM
Welcome.
My name is Kasey. I was diagnosed in November with lupus It affects my joints and muscles.I also have a rough time with the brain fog. Most of he time I cant put even two words together to make any sense. I have lost more words that I ever thought I even knew. I recently developed GERD and my thyroid and IBS are outta wack. The only thing that has improved is my diabetes. It seems that it is under pretty good control.

Im sorry to hear that you have lost a child. That is so rough. I have a child in heaven also. She died when she was 4.

The people on this site are warm and friendly as Im sure you will find out. They will be along shortly to welcome you.

K

nancystubbe45
07-06-2008, 05:54 PM
Welcome.
My name is Kasey. I was diagnosed in November with lupus It affects my joints and muscles.I also have a rough time with the brain fog. Most of he time I cant put even two words together to make any sense. I have lost more words that I ever thought I even knew. I recently developed GERD and my thyroid and IBS are outta wack. The only thing that has improved is my diabetes. It seems that it is under pretty good control.

Im sorry to hear that you have lost a child. That is so rough. I have a child in heaven also. She died when she was 4.

The people on this site are warm and friendly as Im sure you will find out. They will be along shortly to welcome you.

K

Thank you very much.. I'm just getting used to navigating this site. I'm not very fast I'm afraid to navigating through new sites... :(

Oluwa
07-07-2008, 05:39 AM
Nancy..you're doing fine.

See the edit button in the right corner of your message box. You can add, deleted anything within you post when logged on..anytime.

Hugs, tight ones..squeeze...I am sorry you lost your daughter. I can only imagine your loss. with you daughters passing, a stressful, heartache time probably trigger a flare..fatigue, joints. Stress is a big, huge contributing factor to managing IT too.

Sounds like you are on the right track to managing IT (Lupus). I too take Fish Oil supplement and ingest ground flax seed with a bit of fruit and yogurt for breakfast, for a snack. I also supplement with CoQ10 for fatigue...and then there is the prescription stuff..Plaquenil, Protonix, Darvocet and just finished a taper Medrol pack..

Avoid sugar substitutes..Splenda is fine.

Suggestions...for you appointment on the 16th.

Create a list of all your symptoms, manifestation, occurrence, date...no detail is too big or too small..

Create a question list....and if possible have someone with you. Don't be afraid to ask anything and press till you feel comfortable with the answer.

Write down what s/he said and ask for copies of your results....

Be your own advocate. Read about IT...in a book, online, here..we have many knowledgeable people, ah, hem...SAYSUIE..our sweet teacher and moderator, and friend, and family...and we all are very experienced with our illness. Read about...chat up...and welcoming you with warm hugs...see you around.

Keep looking for your wellness.
Be well..hugs.
Oluwa

nancystubbe45
07-07-2008, 05:15 PM
Sorry, I am still trying to get used to this site. I very much appreciate your input. Today I finished all of the labs and tests the rheumatologist recommended. Now just wait for the 16th for next step(s)...
May I ask how old when you were diagnosed, how long since you were diagnosed, those kind of nosy questions... I am still new to all this, but so far what you have gone through symptom wise seems close to my own.
Again, many thanks for your input.

KathyW1958
07-07-2008, 05:45 PM
Hi Nancy,
My name is Kathy. I was diagnosed with Lupus (SLE) at the age of 36 years old, but had Lupus symptome from the age of 5 years old. In my case the illness was gradual and well I had a hard time getting the doctors to listen and take me seriously. I would ask them to test me for Lupus and I would get told that I was worrying needlessly and etc. and that there was nothing wrong with me. They made me feel like a Hypochondriac big time. I got the chickenpox at the age of 35 years old and that is when my health took a serious nose dive. I nearly died from the Lupus attacking my heart muscle itself in the form of Inflamation of the heart muscle. That put me into a serious heart arythmia. That is what led to me finally getting tested and diagnosed with SLE and Sjogrens Syndrome. A lot of things were going on with the joint pain, fatigue, hair loss, abdominal pain, diarhhea and the Malar Rash and oral and nasal ulcers oh and Costal Chondritis and a seriously low white cell count. There were a bunch of things happening that were bad. I have been on medications for the past 14 years aand I will be 50 in December. I have been doing ok, but as you know there will be flares as there is no cure for this illness, but it can be managed. Oh I forgot to say that I have been sun sensative all my life. I guess that is pretty much it. I am on Plaquenil 400mg a day, Imuran, and Sulindac. I hope that I have helped somehow with this post. God Bless.

Hugs,
Kathy

Pretti in Pink
07-07-2008, 06:59 PM
Hi Nancy,

Welcome to the site, you've joined a great cyber family. I extend my condolences for your daughter and pray for your continued strength. I was diagnosed two years ago and take many of the same meds as you, I call them my cocktail of meds. There are many people here that will drop by and offer a wealth of information and warm welcomes.

dsilver2
09-15-2008, 03:13 PM
Hi Nancy.
My name is Dottie. I'm 81 & was diagnosed w/SLE a year ago. The discoid lupus left horrible scars on my legs & back. I'm on Prednisone & pacquinel & my current complaint is a psoriasis type rash on my back & butt. The itching drives me crazy & altho I'm taking 160 mg of generic allegra & some benedryl, it only helps for awhile. It obviously affects sleep & waking up itching drives me frantic. Anyone have any remedies. I would be forever grateful