View Full Version : New & confused

10-26-2008, 01:55 PM
My finacee has had every test from a hidascan to a heart cath. Now they just did blood work to consider Lupus which his dad had . Tomorrow they will have the blood work results & hopefully something back from 3 stomach biopsies. We are pretty sure it is Lupus though. He has so many symptoms I didn't know could be Lupus related. Head sores, ear sores, joint pain, stomach pain, shortness of breath ,chest pain , tingling fingers , leg swelling and more. They were sure he had a stomach thing causing it all maybe even cancer. So he had a endoscope and he didn't even have the ulcers he had been getting treated for over the last 40 years . His stomach was fine. That's when they really started to consider Lupus. At this point I think we just want to know what we are facing. The unknown is scarier than the thought of Lupus.

So, I have a few questions though if you don't mind ...

1. When they send him to the specialist where do they usaually start with all of this ? Tests ? Treatment ? How does it take to get in to see one ? We waited 3 months to see a GI we turned out to not need.

2. Anyone else get orange skin with a normal liver test ? He passed the first test but they just did a GGT b/c he turned orange after his endoscopy. We should know something tomorrow on that.

3. Can he work ? Right now he's in so much pain he's struggling to work . With treatment does any of this improve ? Or should we worry about disability ?

4. and most important what can I do to help him ? I started giving him some fish oil , EPO and vitamins. Starting these seemed to help alot. Now he can atleast eat and isn't doubled over in pain 24/7. He says now it's more a dull pain. I try to be supportive , let him nap and keep him away from the sun . Stuff like that. It just sucks to watch him hurt . I'd rather hurt than watch him heart.

Thanks for listeining. I think I just needed to let it all out.

10-28-2008, 08:47 AM
Hi luvinmyninja,

Welcome to our group. Someone should be along shortly who has
some experience related to your questions. Please make yourself at home.


10-28-2008, 02:17 PM
Hi Luvinmyninja,
I just read your post here. I have no clue as to why your husband turned orange. I never heard of that happening before due to an endoscopy.

I think that he needs to see a Rheumatologist. Can he get a referral to a Rheumatologist from his PC doctor? Has his PC ordered testing to look for Lupus? If he has and the tests clearly indicate that he may have it, then the PC can send the results to the Rheumatologist with him. I know that this is how I got diagnosed. Some Rheumatologists will reorder the tests and some won't. I know the Rheumatologist I see did not reorder the tests he just said that I indeed have Lupus and put me on several medications. I think that he should be tested for Lupus since his father had the illness. My doctor told me that the CDC ruled that Lupus is inherrited and since his father had it and he is a first degree relative he may very well have it too. I don't know how long the wait is to see a Rheumatologist. I think it depends on what part of the country you are in and how many Rheumatologists are practicing in your area. If the tests are positive, I think that the PC could start him on some of the Lupus medications like Plaquenil and an NSAID for inflamation. I don't know what else to tell you and I hope that you can get some definitive answers tomorrow. Please post and let us know and I will keep you and your husband in my prayers.


11-11-2008, 10:10 AM
Hi Luvingmyninja..

First welcome..hugs..I don't think we met. I am Oluwa...

I am happy to know he has the support of you. You are a very compassionate person with unconditional love...

Regarding your questions...

Orange skin...maybe an increased beta carotene consumption. It can result in the appearance of slightly yellow to orange-colored skin. Like carrots, tomatoes. Are the whites of the eyes yellow or white? White is a good indication nothing is happening with the liver...yellow, maybe jaundice. And some say the orange skin tinge is an indicator the liver is cleansing itself....

Usually the first specialist referred to is a Rheumatologist. Test he may conduct or order are...

o Complete blood count
o Erythrocyte sedimentation rate (ESR)
o Urinalysis
o Blood chemistry
o Complement levels
o Antinuclear antibody test (ANA)
o Other autoantibody tests (anti-DNA, anti-Sm, anti-RNP, anti-Ro [SSA], anti-La [SSB])
o Anticardiolipin antibody test
Skin biopsy
Kidney biopsy

Note these are only tools to assist in a diagnose and not a diagnose test in itself...they are all apart of the evidence...

Treatment can be, but not limited to....

NSAIDs: For people with joint or chest pain or fever, drugs that decrease inflammation, called nonsteroidal anti-inflammatory drugs (NSAIDs), are often used. While some NSAIDs, such as ibuprofen and naproxen, are available over the counter, a doctor's prescription is necessary for others. NSAIDs may be used alone or in combination with other types of drugs to control pain, swelling, and fever. Even though some NSAIDs may be purchased without a prescription, it is important that they be taken under a doctor's direction. Common side effects of NSAIDs can include stomach upset, heartburn, diarrhea, and fluid retention. Some people with lupus also develop liver, kidney, or even neurological complications, making it especially important to stay in close contact with the doctor while taking these medications.

Antimalarials: Antimalarials are another type of drug commonly used to treat lupus. These drugs were originally used to treat malaria, but doctors have found that they also are useful for lupus. A common antimalarial used to treat lupus is hydroxychloroquine (Plaquenil)*. It may be used alone or in combination with other drugs and generally is used to treat fatigue, joint pain, skin rashes, and inflammation of the lungs. Clinical studies have found that continuous treatment with antimalarials may prevent flares from recurring. Side effects of anti-malarials can include stomach upset and, extremely rarely, damage to the retina of the eye.

Corticosteroids: The mainstay of lupus treatment involves the use of corticosteroid hormones, such as prednisone (Deltasone), hydrocortisone, methylprednisolone (Medrol), and dexamethasone (Decadron, Hexadrol). Corticosteroids are related to cortisol, which is a natural anti-inflammatory hormone. They work by rapidly suppressing inflammation.

Corticosteroids can be given by mouth, in creams applied to the skin, or by injection. Because they are potent drugs, the doctor will seek the lowest dose with the greatest benefit. Short-term side effects of corticosteroids include swelling, increased appetite, and weight gain. These side effects generally stop when the drug is stopped.

It is dangerous to stop taking corticosteroids suddenly, so it is very important that the doctor and patient work together in changing the corticosteroid dose. Sometimes doctors give very large amounts of corticosteroid by vein over a brief period of time (days) ("bolus" or "pulse" therapy). With this treatment, the typical side effects are less likely and slow withdrawal is unnecessary.

Immunosuppressives: For some patients whose kidneys or central nervous systems are affected by lupus, a type of drug called an immunosuppressive may be used. Immunosuppressives, such as cyclophosphamide (Cytoxan) and mycophenolate mofetil (CellCept), restrain the overactive immune system by blocking the production of immune cells.

These drugs may be given by mouth or by infusion (dripping the drug into the vein through a small tube). Side effects may include nausea, vomiting, hair loss, bladder problems, decreased fertility, and increased risk of cancer and infection. The risk for side effects increases with the length of treatment. As with other treatments for lupus, there is a risk of relapse after the immunosuppressives have been stopped.

Work or not..that would be up to him and his doctors and for disability benefits that would be up to the agency to approve. Many of us work, full time, part time or no time..like me.

Supplements...Fish Oil, EPO are all great supplements. But one should consult with their doctor so as not to affect any prescribed drugs. I was prescribed Fish Oils and a Super B complex. My husband just picked up EPO for me and I will use it on my skin today, not orally.

Fish Oil for inflammation, also reduces triglycerides...we are more prone to heart diseases. EPO is supposed to be great for the skin and hair...orally for eczema, psoriasis.

What other vitamins is he on? Some suggest high doses of vitamin C. Me, I wouldn't..our immune systems are already on high alert...

Read about, ask more....someone always know something...

Keep looking for his wellness and too, he needs to. He needs to educate himself if he isn't doing so already. Having a disease or even not diagnose yet, we have to ride up front and not in the back seat when it comes to our own personal health care...

Thank you for all you are doing for your finance'...He is lucky, fortunate and I hope a grateful man for having you.


11-11-2008, 02:30 PM
He went to the dr today & they do think it's Lupus. We are finally being refered to a Rheumy . Yea !! He takes epo, fish oil , b complex and a calcium,magnesium zinc combo. The dr said we could try DHEA while we wait to get to the Rheumy in December . I am worried this will make his moodswings worse . Anyone take it We are also going to keep a journal to see what makes this worse. I have noticed beef and tomatoes seem to make him feel crappy. Any other foods that seem to be triggers ? This is just so overwhelming.

11-13-2008, 01:14 PM
I took DHEA for awhile some years ago. It helped to kill pain once I took it for awhile, but it has some residual side effects. For one thing, it can increase libido.