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View Full Version : Concerns, need some feedback



gamma
04-21-2009, 06:26 AM
Did a quick intro, but want to give more details.

Husband is 52, about a year and a half ago, he developed skin problems. Started on his back and arms, however back looked totally different then arms. By the time I talked him into getting it looked at, it was then on his neck, chest and face.

Went to a Derm, who diagnosed it as psoraisis. 7 months of treatment, no improvement, it actually got worse. It was now on his hands, ears, scalp, nose, cheeks, lip, and the other areas were now covered more. Husband stopped treatment, stopped going to Derm.

Got the name of another Derm, from my sister. She had skin cancer a few years ago, said she did research, and she kept hearing of this Derm. So off Husband went to this Derm.

When Derm walked in, he said that is not psoraisis, you have the malar rash and discoid lupus. Did a skin biopsy(first derm never did one), gave him some creams, see you in 10 days. Skin biopsy came back as skin lupus, but Derm never said what kind, nor did we see the actual skin biopsy report. Derm ordered blood work, sent him to eye Dr to have eyes checked, gave him some cream. Cream has made a slight improvement.

Blood work ordered, CBC w/Diff, C3, UA, ENA, ANA, CMP, Anti RO, Anti LA. Another mess up, they told husband UA was not urine, some other test(silly me did not go with him for this), so he never got the UA done.

Results-
CBC w/Diff, everything within normal range
CMP, only thing off is a high on SGOT/AST
Immunology(that is the way lab has it written),
ANA Titer-reactive 1:40 does not say negative or positive
Speckled pattern
Anti SS-A, positive
Anti SS-B, negative
Anti-SM, Anti-SmRNP, Anti-RNP, all negative
C3, 127 normal range is listed 88-200
Derms office was suppose to call when results came in, however 2 weeks passed nothing. Husband called, nurse said, it took long because Derm had a few concerns that he needed to check, but he was satisfied with the results. Said they were waiting on eye Dr report, when it came in they would call in Prescript for Plaquenil.

Now our concerns, what the heck is satisfied with, suppose to mean. The AST level that is up, has to do with the liver, and to us, maybe some concern should be there on that.

Derm told him it was discoid. We agree he does have discoid looking lesions, scalp for sure to us is discoid. However what is on his back and shoulders, matches pics of subacute. From reading, really makes no difference as far as treatment, however subacute common to test positive for SS-A RO, which husband did. Subacute, seems to have mild SLE symptoms associated with it. Husband is extremely tired(way beyond normal), lots of hair loss this past year(men don't go bald in his family, just early gray, he has been gray since he was 26), and hair loss is not confined to scalp lesions, joint pain in hips, knees and hands.
Never did have the UA, told nurse, and she said no big deal.

When husband was being treated for psoraisis, he was put on Humira. Humira is used to treat auto immune, but mainly arthritis ones. It is however an immune suppressing drug, a powerful one at that. So we are wondering if that has something to do with his 1:40 ANA titer. From reading we have noticed that people being treated, there ANA titer will go down.

Derm wanted to know family history on lupus. There is none is husband's family. However there is auto immune in several males. Also my son who is 21 has had some problems since he was about 16. All rather vague symptoms, everyone just shoves off. Extreme fatigue, joint aches and swelling(put off to sports, but still here now that he does not play). Fatigue is so bad, we call him mono boy and coma boy, beyond normal teen fatigue. He has passed out about 3 times a year since he was 16. Husband also passed out this summer, never has in the 27 years I have known him. My son has been to several kinds of heart specialists for the passing out, all checks out ok. Passing out occurs in warmer months, we are pretty positive it has to do with the darn sun. He has had on several occassions blood drawn right after passing out. His electrolytes are all good, so not from dehydration.

I know this is very long, so sorry, however don't know what info here is important or not. Bottom line, husband feels like crap, to many mistakes in this already, and concerned that Derm is brushing much off. I am making him go to a rheumy(already advised here to do that). But just need some feedback here, if we are making more out of this then we should, or if we do need to be concerned with what is going on so far.

mountaindreamer
04-21-2009, 06:47 AM
hi gamma,

you are absolutely NOT making too much of this, yes you need to be concerned and continue to seek answers. Lupus is not as common in men, but usually when a male has it, the disease is more serious than with females. I am presently getting my son into a rheumy for ANA tests because of some of his symptoms.

i am glad you are getting him to see a rheumy, i hope the dr. will be able to answer your questions....

i also started plaquenil before i had a solid diagnosis, so this should not be a problem.

i am not the expert on the different lab results, but there are several here who have a lot of knowledge and these and i am sure they will be along soon.

I have seen some really good threads where saysusie and/or oluwa have really explained the different lab results....i will see if i can find them and get back with you.

i am so glad your husband has you on his team.

rob
04-21-2009, 06:59 AM
Hello Gamma,

At the risk of sounding overly simple in my recommendation, I'm going to say your husband should see a Rheumotologist. He could have systemic lupus rather than discoid, and a rheumo is the specialist who makes the diagnosis. I was diagnosed with SLE five years ago. One thing you said stands out-hair loss. The men in my family also do not go bald. My Dad is 72 and has all his hair. One of the things that tipped me off to the fact that I had SLE was hair loss. I had two irregularly shaped patches on the BACK of my head just fall out one day (it eventually grew back). My barber said it was Alopecia Arreata. I looked up the meaning of that term and found out that many people with this are diagnosed with an autoimmune disorder. I'm 41 now, and still have all my hair like my father. Long story short, added to my other non-specific seemingly unrelated symptoms, it added up finally. I also have terrible fatigue, and back before I was diagnosed and started treatment, I passed out on 3 separate occasions while experiencing heavy fatigue, and it was not heat stroke or related to being dehydrated.

As far as your questions about the specific numbers on the test results, I'm going to have to leave that for someone else to interpret, I'm terrible with numbers and not really
qualified. If your husband does not have systemic lupus, it still does not sound like your dermo knows what the hell is going on, and I would be inclined to fire him/her and find a new one. Unfortunately, there is a serious, and widespread lack of knowledge and understanding of Lupus in the medical community. You may need to go through a few specialists before you find a good one. I hope you and your husband can get the answers you need. Welcome to our group, please make yourself at home.

Rob

P.S. I never had anyone for support, or help back when I was being diagnosed, so I can tell you that what you are doing to help your husband is a great thing.

mountaindreamer
04-21-2009, 07:18 AM
hi gamma,

i found the following information among our threads,

all posts are listed under "new members - introduce yourself"

1. "need advice" - page 4 / Saysusie's post dated 3/2/09

2. "blood test results" - page 7 / Saysusie's post dated 1/26/09

3. "Hi - I'm worried" - page 7 / Saysusie's post dated 1/4/09

hope you can find some lab result answers within these posts. Saysusie is an enclypodia of information.