anyone have any lupus info to share?

[lumaie]

I only ask here as I know so many of us/our families have multiple autoimmune issues.

My mom was just dx'd and called me. MS I know. Lupus I don't. There hasn't been any answers posted at the Lupus forum, so--as usual, I came here!

Any first hand, daily-life info would be much appreciated.

Thanks so much and God bless,
Lumaie

[Lyn]

I was dx'd RRMS five years ago. Both my sister and my niece have Lupus, so there is a definite autoimmune thread in my family. I also have ITP - which is where my spleen attacks my platelets and leaves me prone to bruising and bleeding (also autoimmune) and I have a brother who has had two or three attacks of Bell's Palsy - which I think is also auto-immune. Seems we come from the shallow end of the gene pool.

Hope this is the kind of info you were after.

Cheers

Lyn

[lumaie]

Hi Lyn,

Thanks for responding. My 2 biggest questions that I am trying to get answers to are these: What type of doctor treats your loved ones' Lupus? Do they actually treat the Lupus?

They gave Mom the test results, bumped up her pain meds and sent her home again with the advice of "Live with it until the pain gets so bad you can't." Like a good Lady, my Mom plans to do just that...but the pain is what had her back at the doctor's office to begin with!

I've contacted a national organization on her behalf and was told they cannot make suggestions or offer advice...so Thanks for your help.

God bless,
Lumaie

[Jakaloke]

Here's a web site (http://www.arthritis.ca/types%20of%20arthritis/lupus/default.asp?s=1) with some basic info about Lupus. A rheumatologist is the guy you want to see.

[Lyn]

Jakaloke was right that the doctor you were after would be a rheumatologist. I am also pretty sure - depending what areas the Lupus is affecting (and there are over a hundred possible symptoms) she may need to see another specialist, such as a haematologist, dermatologist, urologist - or even a heart specialist for that matter.

Your mum should find a good rheumatologist (one that is trustworthy and compassionate). That way he/she can refer her to other specialists as needed.

As far as I know, there is only symptomatic treatment available for this - cortisone steroids being the most common for flares. There are also topical treatments for skin problems, and anti arthritic/rheumatic preparations if joints and muscles are involved.

There is a Lupus page on this forum that you should check out too.

Hope this helps

Lyn

[lumaie]

Thank you both.

God bless,
Lumaie

[Barb]

lumaie

I am one of those teetering on dx's so I will answer the best that I can since my neuro has cleared the way for me to go to a rheummy at this time. (he wanted to get the neuro part stablized first)

The rest are right as far as where to start with seeing a doctor and from there the rheummy will refer out to other specialties as needed. Some things your mom may need is sun screen for out in the sun if she breaks out in a rash, a hat, light jacket, etc (depending on where you live) Sun/heat can start the rash break outs and depending on the type of rashes and where they are depends on the type of treatment. But from what I have read they recommend that you keep covered up as much as possible.

Just like with MS, heat can also bring on fatigue. And something else to watch out for is if in a cold climate her fingers and toes turning blue/purple *raynards* - so she may need warm gloves and socks for winter time.

As for medications - they do have meds for lupus - from my understanding some can get expensive - I have a friend with Lupus - and with insurance she still pays out quite a bit each month - so if your mom can't afford it you may want to check into the programs that are available for help with medications. Like partnership for america (I think) which go on income guidelines which will cover the majority of the costs and she may have to pay little or no cost at all.

Other than that - if she has trouble walking - cause it does hurt at times (friend says) tell her to use a cane for balance if needed - don't be shy about that. I know my friends leg swells up from time to time. Not sure why, could be because of the type of rash she has since her rash in on her legs. The only other thing would be to keep an eye on her blood pressure - because unlike some illnesses with Lupus, sometimes your blood pressure will bottom out instead of climb.