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View Full Version : Hairloss, again.



debbie-b
04-12-2013, 01:47 PM
What am I going to do?
Before I was ever diagnosed, I had hairloss. After diagnosis and with Lupus meds, my hairloss was pretty much gone, even with taking MTX.
Now, that I am not on any meds ( because of my liver), my hairloss is back and worse than ever.
My husband said it was lucky, that I have alot of hair, otherwise, I would be almost bald.
I am loosing a handful of hair, every day. Just running my fingers through my hair, will leave 30-40 hairs in each hand. Never mind washing my hair or brushing it, my drain is full, every time and so is my brush.
From what I have read, all three of my lovely diseases ( Lupus Sle, RA and Sjogrens) will cause hairloss.
Am I doomed to be bald, because I can't take any of the usual AI meds?
I have got to say, I HAVE HAD IT with this damn disease and there is nothing I can do. Wasn't it enough, that I am in pain 24/7, that I can't do what I want to do, when I want to do it, now I have to lose my hair?
Sorry for the rant, I am very frustrated today.

Debbie

tomcatsgirl
04-13-2013, 06:44 AM
Hi Debbie, I just wanted to send you a hug. I am so sorry you are having a rough time. Hair loss is not easy to deal with. This disease is not easy to deal with at times. I wished I had some majic words to make you feel better. As others including you have told me rant away. Don't be sorry for your frustration it's warranted.
~Take Care~

jmail
04-13-2013, 07:58 PM
Hey Debbie, they'll (insurance) probably dis-allow the 'off-label' use of IVIG for you, but maybe not, due to your circumstances. You might ask about it with your rheumy. It's a very expensive treatment, at about $15,000 a treatment (it's blood plasma from like 1000 people), and it may actually cause you more issues than it'd help, but it doesn't impact the liver the way conventional meds do (usually), but will raise the enzymes some. It doesn't hurt to ask if they have any more ideas for treatment options.

Kjell
04-13-2013, 08:01 PM
Hi Debbie. I'm so sorry. I too went through hair loss about 15 years ago. I was 27, an was told it was stress. It wasn't, it was lupus and I cried all the time. It really took a toll on my self esteem so I understand what you are going through.. I was put on spirnolactone and not sure why but it stopped. I have no idea if that would help you or not but may be worth looking into.. Take care

debbie-b
04-13-2013, 08:11 PM
Hey Debbie, they'll (insurance) probably dis-allow the 'off-label' use of IVIG for you, but maybe not, due to your circumstances. You might ask about it with your rheumy. It's a very expensive treatment, at about $15,000 a treatment (it's blood plasma from like 1000 people), and it may actually cause you more issues than it'd help, but it doesn't impact the liver the way conventional meds do (usually), but will raise the enzymes some. It doesn't hurt to ask if they have any more ideas for treatment options.

Thanks for your reply.
What is IVIG, is it for hairloss? I am sure the insurance would not pay $15,000 for one treatment.

Debbie

debbie-b
04-13-2013, 08:14 PM
Hi Debbie. I'm so sorry. I too went through hair loss about 15 years ago. I was 27, an was told it was stress. It wasn't, it was lupus and I cried all the time. It really took a toll on my self esteem so I understand what you are going through.. I was put on spirnolactone and not sure why but it stopped. I have no idea if that would help you or not but may be worth looking into.. Take care

Hi Kjell,

Is Spirnolactone a Lupus med? I am glad it helped you.
If I could just take the MTX again, I know it would help, with my pain and my hairloss.

Debbie

Kjell
04-13-2013, 08:16 PM
Actually spirnolactone is to lower blood pressure but had an off label use for skin and hair problems.

jmail
04-18-2013, 02:35 PM
IVIG is a blood plasma product, with the immunoglobulin components. It takes usually about 2 1/2 hours for an infusion session. It's "labeled" use is for boosting a person's immune system components, which can be a "bad" thing for lupus patients, since it gives your body more to use. But for some, it works. In my case, it brings up my energy level, decreases inflammation, etc. If your hair loss is from lupus, and they can't treat you otherwise, it might be an option, though expensive. I still have to do plaquenil and prednisone though...

debbie-b
05-29-2013, 10:03 AM
Well guys, I now know for sure, that my hairloss came from the Lupus itself.
I took my second MTX shot yesterday and am on Medrol ( pred) for about 10 days and my hair loss is GONE. Any ideas why? I am thinking the Lupus is really trying to destroy my body, in every way, the muscles, joints, tissue, skin, tendons and maybe even the roots of my hair.
I am also pain free for about 8 days now.

Debbie

Mica
05-29-2013, 11:26 AM
UGH I know exactly how you feel. Some days when I just run my fingers through my hair chunks will fall out. Those are the days i'm scared to take a shower. I have been trying to grow out my hair because I have never done that before since I had lupus but its not very successful right now. MTX was my main problem when I lost hair, and I was 15 at the time so it was super embarrassing, I just had wisps left and it never grew back to it's full potential.

debbie-b
05-29-2013, 11:59 AM
UGH I know exactly how you feel. Some days when I just run my fingers through my hair chunks will fall out. Those are the days i'm scared to take a shower. I have been trying to grow out my hair because I have never done that before since I had lupus but its not very successful right now. MTX was my main problem when I lost hair, and I was 15 at the time so it was super embarrassing, I just had wisps left and it never grew back to it's full potential.

Am I the only one, who's hairloss stop's when taking MTX?

Debbie

Mica
05-29-2013, 02:44 PM
Am I the only one, who's hairloss stop's when taking MTX?

Debbie

I don't know, but lets knock on wood in case we all jinx it.