Hello, Im Hobbits and I am suffering with hair loss. About a year ago I was diagnosed with Rheumatoid Arthritis, an auto immune disease where the bodies own immune system attacks the joints in the body causing severe inflammation and bone erosion and if unchecked permanent disability.
The drugs used to treat this disease are toxic, one of which is the gold standard is called methotrexate used in chemotherapy to kill your immune system, thus stopping your immune system from attacking your joints. The dose given to RA patients is not as big as those given to cancer patients, so you usually do not go completely bald from methotrexate, but you can loose a significant amount of hair. Usually you are put on a few of the RA drugs at the same time called DMARDS or disease modifying drugs. The ones I have been on are Plaquinil, Arava, Sulpasalizine and Methotrexate: I am starting the biologic drug Humira in December.
I was reading a post earlier after googling hair-loss and found this forum, I couldn't find the post once I once registered, I am a new user just joined today and trying to figure out how to navigate around.
The post was about people deciding to take Sulphasalazine, claiming it promoted hair growth. It is a DMARD used for Rheumatoid Arthritis and Inflammatory Colitis. There were people wanting to go on it and people ordering this off the internet. This made me very sad. Someone posted it gave significant hair growth, I can tell you from experience it does not, in fact, it is a drug that causes hair-loss and this is even noted in the side effects on the actual drug leaflet. All the RA drugs work by suppressing your immune system, in the course of suppressing your immune system hair follicles close, this causes your hair to not only break off, but fall out at the root. This side effect actually tells you the drug is working, and doing what it is supposed to do. You can also loose body hair, eyebrows, eyelashes etc. Please do not take this drug thinking it will promote hair growth...you will loose hair and the drug takes months to get out of your system, so you may have hair loss for months after stopping this drug. I have to take these drugs, if I do not my RA will flare and I wont be able to work. Its a trade off.....mobility vs hair?? you would think its a no brainer....but loosing hair is devastating to your self esteem and your identity. Only people loosing hair understand this and know exactly what I mean.
I am a woman, and I often wondered if hair loss affected men the same devastating way it affects women, reading some of the stories on here I know now it does. Every time I wash my hair clumps come out, enough to plug the drain, and stop the water from going down. I have long hair and for me my hair is what makes me feel like a woman, it makes me feel attractive...I cry as I loose more and more everyday. Well meaning people tell me to cut it and wear it short, or oh you have lots of hair...on any given day my son can run his hands across the bathroom floor and scoop and handfull of my hair. My family members didnt understand my distress, so I saved a weeks worth of hair loss.....they looked with huge eyes in shock at how much I am actually loosing.....I have had some really bad days where I get all weepy and just cry.
Other days I am more accepting of my condition.
A shout out to say hello to everyone on here, I hope I can learn more coping skills from others on here. Im glad to find this forum and know Im not alone.
The drugs used to treat this disease are toxic, one of which is the gold standard is called methotrexate used in chemotherapy to kill your immune system, thus stopping your immune system from attacking your joints. The dose given to RA patients is not as big as those given to cancer patients, so you usually do not go completely bald from methotrexate, but you can loose a significant amount of hair. Usually you are put on a few of the RA drugs at the same time called DMARDS or disease modifying drugs. The ones I have been on are Plaquinil, Arava, Sulpasalizine and Methotrexate: I am starting the biologic drug Humira in December.
I was reading a post earlier after googling hair-loss and found this forum, I couldn't find the post once I once registered, I am a new user just joined today and trying to figure out how to navigate around.
The post was about people deciding to take Sulphasalazine, claiming it promoted hair growth. It is a DMARD used for Rheumatoid Arthritis and Inflammatory Colitis. There were people wanting to go on it and people ordering this off the internet. This made me very sad. Someone posted it gave significant hair growth, I can tell you from experience it does not, in fact, it is a drug that causes hair-loss and this is even noted in the side effects on the actual drug leaflet. All the RA drugs work by suppressing your immune system, in the course of suppressing your immune system hair follicles close, this causes your hair to not only break off, but fall out at the root. This side effect actually tells you the drug is working, and doing what it is supposed to do. You can also loose body hair, eyebrows, eyelashes etc. Please do not take this drug thinking it will promote hair growth...you will loose hair and the drug takes months to get out of your system, so you may have hair loss for months after stopping this drug. I have to take these drugs, if I do not my RA will flare and I wont be able to work. Its a trade off.....mobility vs hair?? you would think its a no brainer....but loosing hair is devastating to your self esteem and your identity. Only people loosing hair understand this and know exactly what I mean.
I am a woman, and I often wondered if hair loss affected men the same devastating way it affects women, reading some of the stories on here I know now it does. Every time I wash my hair clumps come out, enough to plug the drain, and stop the water from going down. I have long hair and for me my hair is what makes me feel like a woman, it makes me feel attractive...I cry as I loose more and more everyday. Well meaning people tell me to cut it and wear it short, or oh you have lots of hair...on any given day my son can run his hands across the bathroom floor and scoop and handfull of my hair. My family members didnt understand my distress, so I saved a weeks worth of hair loss.....they looked with huge eyes in shock at how much I am actually loosing.....I have had some really bad days where I get all weepy and just cry.
Other days I am more accepting of my condition.
A shout out to say hello to everyone on here, I hope I can learn more coping skills from others on here. Im glad to find this forum and know Im not alone.