MDJunction - People Helping People
 
Ask a Question
11/29/2011 08:19 PM

Imuran or Benlysta: Hair Loss??

ginny09
Posts: 18
New Member

Hi everyone,

Has anyone experienced hair loss with Imuran? My rheumatologist & I are pretty sure that my hair loss is from Imuran, so I have tapered off Imuran. Does anyone know how long it takes for the hair loss to stop after taking Imuran? My hair is falling out in clumps & I have stopped washing my hair as frequently, stopped using any products or heat, and stopped fixing my hair in an effort to preserve what hair I have left. I am really starting to get depressed about this and hope that someone has some advice. I do not think that the hair loss is from lupus itself because it did not start until I had been on the Imuran for about 4-5 months.

In other news, I just received my fourth Benlysta infusion and I am starting to think that it will be my miracle drug!! My energy level is back to pre-diagnosis levels and fatigue is virtually gone! Also, after this fourth infusion, my persistent rashes all over my body are FINALLY starting to fade after almost a year of constant severely-burnt looking skin... I hope that the hair loss is not a side effect of Benlysta (there are no reports of alopecia/hair loss from Benlysta), but if anyone has experienced hair loss from Benlysta could you please let me know? I am just wondering if this will get better once the Imuran finally gets out of my body or if it will be an ongoing problem with Benlysta administration.

Thank you... I hope someone has some suggestions about what to do with the hair loss? Cut it off? Any vitamins/supplements that anyone has had success with?

Thanks!

Ginny

Reply

11/29/2011 08:47 PM
redhairali
redhairali  
Posts: 3742
Group Leader

Hi Ginny and welcome to the group. It is wonderful that Benlysta is helping you. I have never been on Iumuran so I can't speak on side effects, but I have lost a LOT of hair do to lupus. It is very annoying. But right now that is about the worst I am dealing with and that is ok by me. I hope your hair starts growing back soon.

Alison


11/30/2011 06:48 AM
Lynnette1212
Lynnette1212  
Posts: 1167
Senior Member

My dr recommended taking Biotin. It's over the counter, in the supplement section. It has done wonders for my hair. You just need to take one a day. I also have cut back on washing my hair. I do it 2-3 times a week now. My hair is in the best condition it has been in in years. I am also on Imuran and I have not noticed an additional hair loss. I just had dose #2 of Benlysta. I think I have heard of just one other girl having hair loss with benlysta. But it could be related to ten other things too. Good Luck and Welcome to our wonderful Family. We hope u stick around. Lynnette

11/30/2011 07:59 AM
ncgirl
ncgirl  
Posts: 969
Member

Hi Ginny Smile I am sorry about the hair loss. I have dealt with that issue off an on over the last few years due to Hyperthyroidism. It's usually cyclical for me but just recently it was severe. In addition to vitamins or Biotin, you can use Nioxin Shampoo, Conditioner and scalp treatment. The line has different shampoos for different stages of loss. I currently am doing the strongest formula they make for noticeably thinning hair. A lot of cancer patients use it after chemo. I have always had good success with Nioxin. It at the very least stops the shedding until your hair can regenerate. It also stimulates your scalp and promotes hair growth. It is a bit pricey... Expect to pay $50 for the kit in the U.S.

Hugs to you! ~ Julie

Post edited by: ncgirl, at: 11/30/2011 08:02 AM


11/30/2011 12:29 PM
mumeva
mumeva  
Posts: 6150
Group Leader
I'm an Advocate

I am on a low dose of imuran 50mgs because it does cause elevated liver enzymes with me. I have lost a lot of hair do to different medications that I have taken. I have cut my hair short so it doesn't seem to fall out like it used to.....besided it's a lot easier for me to care for and to fix in the mornings. I think these ladies have some good suggestions for you.

Eva


12/01/2011 07:52 PM
ginny09
Posts: 18
New Member

Thank you all for your suggestions! I will definitely give them all a try. Thanks Smile

01/10/2012 05:45 PM
Kwells
Posts: 1
New Member

I have been on both immuran and now on my fifth treatment with Benlysta. I didn't notice any hair loss with immuran but I seemed to catch every virus under the sun. Even ended up with shingles, and that was the last straw. I have a up and coming rheumatologist who has trained at well know lupus clinic and McMaster University and he was very excited to try me on Benlysta. I had very high hopes. I myself have Had lupus for 14 years and couldn't tell you how many symptoms I've had over the years or how many times I've been tested for cancers because of the lupus mimicking different ones. I can tell u my treatment with Benlysta has not been all great. For anyone with severe joint issues id recommend that you try it because I'm a new person with my mobility. I've been able to do things that a year ago I couldn't have tried doing like holding my nephew for two long because my arms was be useless for days afterwards. On the down side, I have been keeping a diary of anything that happens since my Benlysta treatments started. I have noticed a few things of concern. One being an extreme amount of hair loss. I can run my hands through my hair and clumps fall out. It's been extremely depressing for me as a have little hair to lose as it is. The other concern I have about Benlysta is the fact that almost immediately after starting it I began to have migraines on a daily basis. It usually starts the same time of day around three or four pm and if I catch it on time with medication I can limit the severity of the attack, but not catching it on time leaves me in bed right from work and out for the rest of the night. I have been missing so much work due to migraines because I can't be around any light. I had really high hopes for this treatment and I feel that the bad things are outweighing the good in my case. I've asked to speak to my rheumatologist in regards to stopping the treatment. Just wanted to know if anyone has had a similar experience with it, and what they would choose to do. Continue and see if the bad stuff goes away or stop and put up with the regular symptoms of which I'm used to.

01/10/2012 08:02 PM
hawakeita
hawakeita  
Posts: 1913
Senior Member
I'm an Advocate

Hello kwells and welcome to this group. There are a few of our members who have started the Benlysta, and some of them, like you, are keeping diaries, some on this website, so you can hear directly from them what the Benlysta's been like. I have not started Benlysta but am in the process of learning as much as I can about it, and one place that I have found to have a lot of information and tons of people taking it is Benlysta Buddies on Facebook. It's a closed group. You can check out NURSEBLACK's diary on this website and reach out to her about becoming a member. She's one of the admins. I wish you all the best. And if you decide to post your diary of your experiences with Benlysta on here, I think a lot of people would benefit. Please come by often and update us on how you're doing.

01/11/2012 05:49 PM
mumeva
mumeva  
Posts: 6150
Group Leader
I'm an Advocate

Hi Kwells....welcome to this fantastic support, as you can see we have some wonderful, compassionate members here. I was sent a packet on Benlysta just a few days ago, not sure why as I never asked for one but it will be interesting to read up on it. My Rheumy won't put me on this as I have severe CNSV Lupus and she said it would not be good to try on me.I am currently taking Rituxan infusions every three weeks and have been since 2009.....going on two years now.....still have good days and bad. I think reading NurseBlack 's diary and Lynnette's will be beneficial. Any time you need to vent, cry or just to share or ask questions please feel free to post often.

Eva

Reply

Share this discussion with your friends:


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved