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BlueBird
09-18-2011, 03:52 PM
Hi All,

I guess my question is how important is it to see a rheumatologist if you suspect lupus? My husband got his first blood clot at the age of 20 (in his arm, strange place). After his second blood clot, I made him see a hematologist. She diagnosed him with APS. He is now on Coumadin for life, and has had 5 clots in total. He is 27.

We noticed 2 or 3 years ago that his urine was really foamy (sorry if TMI). I requested that he ask his primary care doctor about it. His doctor sent him to a nephrologist, where they said he had proteinuria and some other issues, but for now they are just monitoring him. We decided not to do a biopsy because of the Coumadin. The nephrologist put him on blood pressure medication and his blood pressure is now controlled.

I was going through his original paperwork from December 2009 from his first nephrologist (we moved cross country) as I was putting papers away, and saw that he had a positive ANA, speckled, 1:40. From what I have read, 1:40 might be considered as negative to some, but the lab paperwork said positive. The first nephrologist he saw recommended that he see a rheumatologist.

Also, since I have known him, he has scarring on his back that looks quite a bit like a discoid rash. He started complaining this week that the joints in his hands were hurting, and I started wondering about lupus again.

Right now, he is having monthly INR checks and he visits with his nephrologist every 3-4 months. I told him that I would like him to see a rheumatologist, but he doesn’t see the reason to. He said if he had lupus he wouldn’t want to know. I thought it would be better to know, so it would be easier to handle, and there would be a doctor looking out for anything additional that might come our way (maybe?).

So, should I request again that he get a referral to a rheumatologist, or is there really no reason to?

Thanks for any advice.

rob
09-18-2011, 05:56 PM
Hi Bluebird,

A Rheumatologist is the primary specialist who will both diagnose, and treat Lupus. They generally work in conjunction with your PCP, and sometimes with other specialists such as a Neurologist, but the Rheumatologist is the "point man" for a diagnosis and treatment plan. If Lupus is suspected, seeing a Rheumatologist is of the utmost importance.

In regards to your husband not wanting to know if he has Lupus or not, I'll be blunt-He absolutely needs to know. The reason, is that with proper meds, Lupus disease activity can be controlled. However, if Systemic Lupus goes untreated, it can run rampant throughout the body causing organ damage that in many cases can be irreversible, and sometimes fatal. A proper treatment program keeps Lupus disease activity from gaining a foothold and becoming uncontrollable. The sooner a person with Lupus starts a proper treament program the better.

Rob

steve.b
09-18-2011, 09:57 PM
hi bluebird,
i am glad you are here to support your husband.

i am a male and almost 50.

it is my belief that nomatter what the problem is....... your husband needs to find the correct treatment.

maybe you do not need to try to place a title on his illness, just get treatment.

i know for me the title was a problem ..... the fear of what the title means is extreme.

rob
09-19-2011, 05:15 AM
hi bluebird,

i am glad you are here to support your husband.


Steve,

Good point. I agree 100%!



Bluebird,

It's a good thing you are doing in being so supportive of your husband. If it turns out that he does have Lupus, having a supportive spouse or other family member can make a huge difference in his overall long-term outlook.

Something that comes up often in regards to men and Lupus, is that this disease in the past has been mischaracterized as being "A Woman's Disease". Some men can be really put off by this stigma, and resist even considering Lupus as a possibility. We have a substantial number of male members here, Steve and myself being only two of them. If your husband ever wants to talk, we would be happy to talk to him and help in any way we can.

I hope you and he can find the answers you need,

Rob

Linda From Australia
09-19-2011, 06:28 AM
Wecome to WHL BlueBird. I do wish you all the best as you support your husband. It must be such a difficult time for you, and I really appreciate that you are trying to understand what your husband is going through. Please pop in and have a chat with us as often as you like.

red246
09-19-2011, 06:41 AM
BlueBird,

I wholeheartedly agree with what the others have said! It is imperative that he sees a Rheumatologist. Lupus can be treated. It cannot be cured, but it can be treated. My viewpoint is this: If he found out that there was a chance he could have cancer, wouldn't he go to a specialist to find out for sure? To get treatment? Please keep us updated.

tgal
09-19-2011, 10:07 AM
Hi Bluebird. I just wanted to take a moment to welcome you to the WHL family. I really can't add to what the others have said because they are on target. With meds a person with Lupus can live a long and mostly normal life. The longer one is not on meds the more damage it can cause internally.

Anyway... Very nice to meet you and your husband is very lucky to have you in his life!

BlueBird
09-20-2011, 05:59 PM
Thank you all so much for your responses. I spoke with my husband and he is going to speak with his primary care doctor at his appointment this week about a referral to a rheumatologist. Thank you again.

tgal
09-20-2011, 06:38 PM
Thank you all so much for your responses. I spoke with my husband and he is going to speak with his primary care doctor at his appointment this week about a referral to a rheumatologist. Thank you again.

It is so good to hear that he is going to go! Please keep us updated!