View Full Version : Mornin' new to your group

05-22-2011, 08:05 AM
I was diagnosed in december 2010. Your web site is very helpful. Thank You. Sometimes I still dont know what to think about best course of action for my health. Still finding my way thru this illness.

I just moved to wisconsin from tennessee.

Am very fortunate that I got a great rheumie doc and primary care doc is very informed.
thanks again for great site.

05-22-2011, 08:09 AM
Hi ferrini,

Welcome to our lovely large family of the WHL and it's so nice to have you with us.

There's loads of threads for you to venture through and to help with Lupus itself and it's good that your under a Rheumo and primary doc who are informed well.

If you don't mind me asking what have you been diagnosed with? and what course of action for you health are you refering to.

Terri xxx

05-22-2011, 08:28 AM
Sorry I was not very specific..guess i need more coffee..hehehe. I was diagnosed with SLE. Started having pains in joints..went to orthopedic then to Rheumo dr. he did a ton of bloodwork and a couple days before Christmas I recieved diagnosis. I looked back at some bloodwork I had in may of last year..my primary here looked at it and said I had lupus then.

I also had bad rash last may. I know this is a difficult illness to diagnose. I was diagnosed with fibro 10 years ago..Rheumo doc says they can go hand in hand.

05-22-2011, 08:44 AM
Well where you have your coffee i love my cappaccino.lol

I've got SLE like yourself and so many member's suffer with the fibro. I suffer with cramps, joint pains, swollen joint's, my hips hurt alot and if i sit they lock, there's so much with SLE plus it can affect your organs it's according to how bad it is in your system.

Refering the rashes try and keep to shade and cover up well even in the summer and where 50 block, it's sent my skin that bad besides having raynauds i'm banned from the shade because after 10mins i mays well have been in the oven, it's really affected me bad now.

Have they said if they'll start you meds to help your system or are they still waiting?

I'll add some info below on SLE incase it may help you more.

((Hugs Terri)) xxx

05-22-2011, 08:46 AM

SLE (lupus) is an autoimmune disease. This means there is a problem with the body's normal immune system response.

Normally, the immune system helps protect the body from harmful substances. But in patients with an autoimmune disease, the immune system cannot tell the difference between harmful substances and healthy ones. The result is an overactive immune response that attacks otherwise healthy cells and tissue. This leads to long-term (chronic) inflammation.

The underlying cause of autoimmune diseases is not fully known.

SLE may be mild or severe enough to cause death.

SLE affects nine times as many women as men. It may occur at any age, but appears most often in people between the ages of 10 and 50. African Americans and Asians are affected more often than people from other races.

SLE may also be caused by certain drugs. For information on this cause of SLE, see drug-induced lupus erythematosus.

Symptoms vary from person to person, and may come and go. The condition may affect one organ or body system first. Others may become involved later.

Almost all people with SLE have joint pain and swelling. Some develop arthritis. Frequently affected joints are the fingers, hands, wrists, and knees.

Other common symptoms include:

•Chest pain when taking a deep breath


•Fever with no other cause

•General discomfort, uneasiness, or ill feeling (malaise)

•Hair loss

•Mouth sores

•Sensitivity to sunlight

•Skin rash -- a "butterfly" rash over the cheeks and bridge of the nose affects about half of people with SLE. The rash gets worse in sunlight. The rash may also be widespread.

•Swollen lymph nodes

Other symptoms depend on what part of the body is affected:

•Brain and nervous system:


•Mild cognitive impairment

•Numbness, tingling, or pain in the arms or legs

•Personality change


•Risk of stroke


•Vision problems

•Digestive tract: abdominal pain, nausea, and vomiting

•Heart: abnormal heart rhythms (arrhythmias)

•Kidney: blood in the urine

•Lung: coughing up blood and difficulty breathing

•Skin: patchy skin color, fingers that change color when cold (Raynaud's phenomenon)

Signs and tests
The diagnosis of SLE is based upon the presence of at least 4 out of 11 typical characteristics of the disease. The doctor will listen to your chest with a stethoscope. A sound called a heart friction rub or pleural friction rub may be heard. A neurological exam will also be performed.

Tests used to diagnose SLE may include:

•Antibody tests, including:

•Antinuclear antibody (ANA) panel

•Anti-double strand (ds) DNA

•Antiphospholipid antibodies

•Anti-Smith antibodies

•CBC to show low white blood cells, hemoglobin, or platelets

•Chest x-ray showing pleuritis or pericarditis

•Kidney biopsy

•Urinalysis to show blood, casts, or protein in the urine

This disease may also alter the results of the following tests:

•Anti-SSA or -SSB antibodies

•Antithyroglobulin antibody

•Antithyroid microsomal antibody

•Complement components (C3 and C4)

•Coombs' test - direct



•Rheumatoid factor

•RPR - a test for syphilis

•Serum globulin electrophoresis

•Serum protein electrophoresis

There is no cure for SLE. Treatment is aimed at controlling symptoms. Your individual symptoms determine your treatment.

Mild disease that involves a rash, headaches, fever, arthritis, pleurisy, and pericarditis does not need much therapy.

•Nonsteroidal anti-inflammatory medications (NSAIDs) are used to treat arthritis and pleurisy.

•Corticosteroid creams are used to treat skin rashes.

•An antimalaria drug (hydroxychloroquine) and low-dose corticosteroids are sometimes used for skin and arthritis symptoms.

You should wear protective clothing, sunglasses, and sunscreen when in the sun.

Severe or life-threatening symptoms (such as hemolytic anemia, extensive heart or lung involvement, kidney disease, or central nervous system involvement) often require treatment by a rheumatologist and other specialists.

•Corticosteroids or medications to decrease the immune system response may be prescribed to control the various symptoms.

•Cytotoxic drugs (drugs that block cell growth) are used to treat people who do not respond well to corticosteroids, or who are unable to stop taking corticosteroids without their symptoms getting worse.

Support Groups
For additional information and support, see lupus resources.

Expectations (prognosis)
The outcome for people with SLE has improved in recent years. Many people with SLE have mild illness. Women with SLE who become pregnant are often able to carry safely to term and deliver a normal infant, as long as they do not have severe kidney or heart disease and the SLE is being treated appropriately.

The presence of antiphospholipid antibodies may increase the possibility of pregnancy loss.

The 10-year survival rate for lupus patients is greater than 85%. People with severe involvement of the brain, lungs, heart, and kidney do worse than others in terms of overall survival and disability.

Some people with SLE have deposits of antibodies in the cells (glomeruli) of the kidneys. This leads to a condition called lupus nephritis. Patients with this condition may eventually develop kidney failure and need dialysis or a kidney transplant.

SLE causes damage to many different parts of the body, including:

•Blood clots in the legs (deep vein thrombosis) or lungs (pulmonary embolism)

•Destruction of red blood cells (hemolytic anemia) or anemia of chronic disease

•Fluid around the heart (pericarditis), endocarditis, or inflammation of the heart (myocarditis)

•Fluid around the lungs (pleural effusions), damage to the lung tissue (interstitial lung disease)

•Pregnancy complications, including miscarriage and flare-up of SLA during pregnancy


•Severely low blood platelets (thrombocytopenia)

•Vasculitis, which may damage arteries anywhere in the body

05-22-2011, 08:55 AM
I first started taking hydroxychloroquine and prednisone in dec ..doc took me off prednisone a couple months back. where can i find 50 sunblock? thanks so much for info. am trying to move around as much as i can.

I have lost a bit of hair in top of scalp. some challenge to my kidneys..just had ultrasound last week. also have swelling to elbows.

but today..in this moment my mental health is okie.

05-22-2011, 10:15 AM
The brand Banana Boat makes 100 spf and Aveno has the spray sun block thats in 50 and 70 spf, along with special sun block for your face.

05-22-2011, 10:27 AM
I was on hydroxychloroquine(plaquenil) 200mg daily and i had to stop it after 12wks because i suffer with my lungs and now the muscles around my lungs are swollen from the Lupus, the plaquenil was making my breathing alot worse and i was having panic attacks so i could'nt cope but it's good for other's, it cleared my skin flares within 5wks it was a shame i could'nt cope.

I use SPF 50 High suncare, moisturising sun lotion and my hubby got it for me from WILKINSONS otherwise a chemist should do it like BOOTS.

I've had the hair loss like yourself and patches on my head and they grew back grey but i just lose the hair now and how you've got a challenge to your kidney's i was getting pain and my sides swelled out and they had me in the day unit and more bloods was took last year and x-rays and they've just done an ultrasound on me and found a black patch by my liver, i've now got a Tumour on the left side of my liver, there's a nerve damaged on the left side from the pancreas down to my ovary so i'm waiting to see a gastro specialist as they're worried as more things might progress if my immune symstem is not surpressed, they're talking now of Anti-cancer drugs once i'm sorted with the liver and my dermo as took more bloods as steriod based creams don't help my skin anymore, so they're talking tablets.

I'm suffering with my right arm and elbow at the moment, to start with it was surposed to be tennis elbow that was a cock up and then i had a flare to the skin which was identical to ringworm but not pronounced and that was another wrong diagnosis it was psorisis which mimics ringworm.

Well it's nice to hear your mental health is ok because depression Lupus thrieves off badly and if your not well, the symptoms come abit stronger.

05-22-2011, 11:59 AM
thanks for sunblock info.

Peridot so sorry that you have gone thru so much difficulty. I appreciate so much the time and energy you have given here today.

05-22-2011, 12:49 PM
Hi Ferrini,

Your welcome and that's what we're all here for to support one another.

I was diagnosed with Raynauds 4yrs ago and 3yrs ago everything in my signature for Lupus but from when i was 14 onwards till now at 42 i've got two forms of epilepsey, todds paralasis, i've had two major strokes, DVT, etc and when i saw the rheumo everything i'd gone through from a teenager and still am, is all from the Lupus and the best Bonus i was born with it.

I get so angry at times because all it would have took was a few furthur blood tests and they could have caught it at an earlier age.

((Hugs & kisses to you)) xxx

05-22-2011, 12:56 PM
I certainly understand the anger. You have been thru so much without understanding the cause for so long. I do not understand why the docs dont just do the blood tests much earlier. My last primary care doc is very smart ..yet she didnt catch this..She was my doc for 20 years and i did go thru a bit during that time.

I admire your strength.

05-22-2011, 05:13 PM
It's past anger with me sometimes when your in so much pain and yet people think you look healthy to top it all but i think my face shows there's something wrong that's how ignorant people are in today society.

Ferrini the reason why your primary care Doc did'nt pick it up is because it may not have been showing, the trouble with Lupus it plays with your blood and makes it fluctuate and bloods tests can come back showing negative and the actually may be positive.

I had the rheumo department doing no end of bloods and my GP and my anaemia kept showing ok, it took 6mths for the blood to come in and eventually show it was low at 8.0 and that's how long i'd had it but having it a good while back i knew the symptoms, so now i'm on folic acid tablets for life besides B12 Jabs for life.

I hope tomorrow is abit better for you mate. xxx

05-22-2011, 05:19 PM
Neutrogena puts out a great 100 SPF sunblock for the face. You can get it at walmart and it is really clean feeling; not heavy at all. It is called Neutrogena Ultra Sheer Dry Touch sunblock. You can use it for any part of your body but it is really great on the face!

Also, welcome you to WHL! We are so glad that you joined our family!

05-23-2011, 06:56 AM
Hello ferrini,

How are you feeling in yourself today?? xxx

05-24-2011, 04:29 PM
Hello ferrini,

How are you feeling in yourself today?? xxx thanks Peridot for explaining about bloodwork. ..this illness is so confusing. one moment i feel fine ..10 minutes later..i am pooped and hurting. how long do flares last?

thanks everyone for advice on sunblock.

am very weary the last 2 days.. thanks

how are you feeling?

05-24-2011, 04:47 PM
Hello Ferrini,

It's a shame it works the bloods how it does because if it did'nt mess about with them, so many people would be diagnosed straight away, i came lucky with mine but the only thing that was holding back was the anaemia which i mentioned.

That's how it affects your body and the flares you think your having is the actually pain which comes with SLE i can have it either in one or two parts of my body and after so long it eases and then bang that pain as shot to another place, that's why there's no rest from it but if you do have a good flare which is constantley on then it can last from 2wks or more according to how strong it is.

The actually wearyness your feeling is your mind waiting to see and feel what's going to happen next, it's like it's putting you on edge wondering what's next, a large majority of us either wake wondering it or going through the day feeling the same.

Myself the same as ususal until they sort me out on drugs refering my body and skin but i went today for a pre-op to make sure i was ok for an operation and if i don't hear nothing by friday with the bloods they took for checking, then i'm in the all clear for the operation, i was added to the surgeon's list on the 27th april.

Everything is just one pure WAITING GAME and thank you for asking. xxx

05-25-2011, 04:44 PM
ferrini, i really hope your day tomorrow is a better on and try not to get on edge much i know it's hard to say but it can make the pain and what your going through feel slightly harder to cope with.