PLEASE help! My hair is falling out...

[Deanie1]

If you switch to the injectible mtx, nausea should not be a big factor. I like to take mine right before bed so that I can sleep off any nausea, however I get very minimal nausea. It does seem to work very well with the Enbrel for me. Now, I just need to jump through the hoops to get back on it.

I am hoping to have hair for WDW but I suppose if I don't, nobody will think it is a big issue. Trying to figure out how I can incorporate a bald head into a Halloween costume! Of course, I am not totally bald yet. First stop, the hat shop.

 

[jeanneg4of4]

Just thought I would add my two cents since I have 12 years under my belt. Biotin really makes a difference. I take 2, 5mg a day. I never lost enough hair to have to cover my head. I always had really thick hair up to begin with. I did have to pull my hair up in a clip to hid some "thin" areas and no one was the wiser. I second taking the mtx at night. Deanie1, I love the idea of incorporating the hair loss into a costum. Great Way to think out of the box and have fun.

 

[Aladora]

I am hoping to have hair for WDW but I suppose if I don't, nobody will think it is a big issue. Trying to figure out how I can incorporate a bald head into a Halloween costume! Of course, I am not totally bald yet. First stop, the hat shop.

Deanie, I popped the bandana in the mail yesterday as I was running some errands. I meant to put in a note but the kiddo distracted me and I totally forgot!

 

[Deanie1]

Thank you so much, Aladora. I will watch for it in the mail. I will make sure to get it back to you as soon as I have enough hair regrowth back.

 

[Worldgirl]

If you switch to the injectible mtx, nausea should not be a big factor. I like to take mine right before bed so that I can sleep off any nausea, however I get very minimal nausea. It does seem to work very well with the Enbrel for me. Now, I just need to jump through the hoops to get back on it.

I am hoping to have hair for WDW but I suppose if I don't, nobody will think it is a big issue. Trying to figure out how I can incorporate a bald head into a Halloween costume! Of course, I am not totally bald yet. First stop, the hat shop.

Thanks for the advice about mtx. For Halloween you could incorporate your baldness by being Dopey from Snow White or Charlie Brown.

 

[Granny square]

Biotin helped my son when his fell out after he was hit with type one diabetes.

 

[Deanie1]

Haha, I had thought about Charlie Brown! Dopey is a good one, though. I talked to my rheumatologist briefly on the phone today and she doubts that ALL of it will fall out but I am not sure about that. It gets worse everyday. She took me off mtx completely so all I have is Plaquinol. Hopefully, I will get approved for Enbrel by the time I get home. Unfortunately, I am getting a lot of pain and one foot is really sore. I will try to have some down time in the park each afternoon. It is often such a long walk to get to the buses that an afternoon break at the hotel is just too daunting. Hall of Presidents, Universe of Energy, etc. And there is always the wheelchair option.

 

[D-ko]

Are you taking Methotrexate? It made tons of my hair fall out! I already don't have a thyroid due to cancer so this was NOT helping!

There were tufts all over the house - we laughed and said we had kittens sleeping all around the house.

I just wore a hat or .. nothing I colored my hair too (my hair is naturally black) and it made my scalp not seem as sparse and my hair seem thicker.

Good luck! It sucks, I know!

 

[Deanie1]

D-ko, yes I have been on methotrexate since 2005. I tried different strengths but settled in at 15mg/wk in pill form. On May 15, I was put on sulfasalazine and 25mg mtx injections. I felt lousy from day one but had to persevere for 4 months. I spent the first 3 wks under a blanket on the couch. After a month, I started to feel better but at around the 2 month mark, my hair started to fall out. Since my hair was so thick, I thought nothing of it for another month when I was loosing tons of it in the shower and it was so much thinner. Also, my eyebrows are half of what they were. I guess the hair loss could be from either the mtx or the sulfa and I am off both now and only have the plaquinol and an anti-inflammatory. My hair loss gets worse and worse by the day and my joints are very sore, especially in my feet. I don't know how I am going to manage at WDW. Right now I am waiting to see if they will fund my enbrel again or if I will have to try more drugs. Frustrating!

I am taking multi-vitamins, biotin, a B complex vitamin and I have bought two different hair products to stimulate the follicles. One of them says that it may get worse before it gets better so I am saving that for after WDW. Any other suggestions are most welcome. I have got more info from the DIS than any medical site on the internet or from my doctors.

 

[D-ko]

Deanie1, Isn't Methotrexate just a joy? My life revolves around this: Monday through Friday struggle through work, Friday night - take MTX, 2 hours later, puke my butt off, fall asleep (drug myself to sleep), wake up around 4am, puke violently AGAIN, drug myself heavily again, then feel miserable Saturday, feel slightly better Sunday and Monday we start all over again. AND I have tons of pain pills too :s

We visit Disney often (always renting an ECV) and just spend a few hous at the parks. We don't do much else so Disney is our only getaway. We tend to go when it's not hot there becaue otherwise it's just not doable.

 

[ttintagel]

I haven't lost hair on Methotrexate, but it gave me terrible mouth sores and problems with my gums. So, while my Disney pictures may feature a full head of hair, some of the smiles are a little iffy! (Doing better on a much smaller dose now.)