Hair and nails with RA.

Hair is really a big deal to most women, for me it was a great source of entertainment in my thirties, when I was finally finding myself and had become free I chose to experiment. One of my favorites was what my then future husband called "the pot scrubber". My hair was about four inches long and bleach blonde. I would get a friend to part it out and put it in little pony tails all around my head, I would pay all the money I have right now for a picture of that hair, I think the fact I was able to do things like that shamelessly was one of the reasons he loved me, who knows, who cares? I have him now sucker.

My dreads, favorite hair of all time! Total freedom from societal expectations.

 In any case, I have had all colors, lengths, dreadlocks, weaves, I've done it all and I loved it. I finally was getting my hair long again after cutting my dreads off at my scalp (they were pulling so much, I just couldn't take the pain) when I finally made it to my Rhumey. The first thing she put me on was MTX and folic acid with no explanation. Of course I googled away as soon as I got home and my bet is if you take MTX or have been RXed it, at some point or right now, and it sat or is sitting where? On top of the microwave? In the medicine cabinet? In the fridge? How many times have/did you take it out and look at it and put it off another day? Not there yet? These are things you will probably do. I giggle now when I think about my encounters with Mobic and how I read about it and there was no way in hell I was going to take such a dangerous drug and now I don't even stop talking or pay attention when the infusion nurse slides a needle into my vein for the Remicaide, the one that there really was NO WAY IN HELL I was ever taking it but yet one day early this year I tearfully said "Remicaide" when Dr. G asked me what I wanted to do since my second attempt at Humera was obviously a failure. So, back to our hair and the beginning of my battle... I started the Methotrexate and I was pretty sick, lots of pukey days, had to lay down, drink water, sleep, sleep, and then I would sleep more. I took my folic acid even though I really didn't know why.

Question: Why Should Rheumatoid Arthritis Patients Take Folic Acid With Methotrexate?

Answer: Methotrexate (MTX) is a chemotherapy drug that prevents cell reproduction by interfering with folic acid activation. MTX is also used in the treatment of psoriatic arthritis and rheumatoid arthritis. Although very effective, its use potentially may produce serious side effects including nausea, mouth ulcers, blood problems, liver cirrhosis, and hair loss.

Prolonged treatment with MTX may also lead to folic acid deficiency. To reduce the risk of these side effects, without fear of interfering with its efficacy, a maximum daily dose of 5mg of folic acid is recommended for those patients taking MTX on a regular weekly basis.

Answer provided by the late Dr. Raymond Federman, a respected rheumatologist.

So, about six weeks into the MTX I started noticing that my hairbrush was getting really full, and that my hair was breaking. I wore my hair in pony tails a lot and I didn't notice until pretty late in the game that I had a circle around my head of broken hair about two inches long, it seemed to be the breaking point for the hair in the holder. Also, as time went by more and more hair was falling out and it was all over the bathroom, the pillowcase, my food, blowing onto people in the car with the windows down, it was very upsetting. I asked my Dr. and she said take Biotin, I take 1500 mcg's but you should ask your Dr. what dose they think is good for you. In any case, I still lost a great deal of hair for several months and it seemed to taper off and chill a bit but continue to break and split. The other thing is my fingernails went to paper thin and go absolutely as far back as they can because they tear and crumble. No one in my house will cut my toenails anymore because of the crumbling and I know that it would be pretty freaky, but all winter I was stuck with crazy nasty toenails and going to the mall to get my nails done was just out of the question, being exposed to so many people and getting sick, walking that far, someone grabbing my bones... there has been a meme floating around on FB and it says something about to "please don't wear sandals this summer if it looks like you could fly over a lake and grab a fish for dinner with your toes"... that was me, but I had to just rock my 6 month grown out pedicure with color on half my nails and nothing on the other and crazy long toes, it was so gross and embarrassing. I can't reach my feet so there was nothing I could do about it and that was that until I had a trip come up and mom treated me to a pedicure and I just waddled in and wore a mask and entertained myself with how grossed out the poor lady was over my toenails and how they crumbled. She told me to go to the Dr, because "that's no good". HA!

So, currently I have hair growing back from that big initial hair loss. It is not reddish brown and wavy, it is grey, wirey, and curly. In the Oklahoma humidity I have a gray afro and long reddish turning grey hair all at the same time and it's freaking AWESOME.

Rockin' the MTX fro on a Dr. trip.

I find it important to note, at no point has any leg hair nor my lady mustache hair fallen out, both are thriving I am proud to say.

Now that I have started Remicaide and continued MTX I noticed that my hair has started falling out again. This time there is no playing around and it isn't a minor thing. I asked my husband a few times at first if he was noticing and he said no but the shower drain said otherwise and when you are standing in 4 inches of water in your shower, it's pretty clear. My bun is literally a third of the size it used to be, but I'm not complaining, a girl on a support group went completely bald 11 days after her first infusion, luckily she rocks it but I'm not so sure I would look as good as her. Also, by no means am I making light of her situation because I am sure that it must be devastating. 

I have a lot of women new to the hair loss issue ask what to do and I'll just explain my game plan. This works two ways for me because I also have very real loss of hand grip and so holding appliances and such would never work. So I say if you want to keep your hair, in addition to a super-healthy diet, and supplements, I would do a simple do-nothing hair style. Let it be long, keep it short, but don't color, curl, blow dry, put anything with alcohol in it, just wash with simple shampoo that is as chemical-free as you can get and condition, towel dry, and comb lightly starting from the bottom. Do not use hair ties! My hair is long enough I twist it into a knot and that is pretty much it. I also use a good leave-in conditioner. There are lots of good ones out there, I wouldn't go a day without it. Also, protect your hair from the sun and the wind, letting your hair whip around on a motorcycle or with windows down and if you are anything like me it's going to break off, split, and look like hell. So, the moral to the story is, be nice to your hair. No chemicals, no heat, just love and conditioners.

A light brushing produced this in under a minute. 

 As far as fingernails go if you get your nails done you are going to really have to pay attention to your nail bed, it can get really thin and if they are grinding it down to put new nails on you just might learn a new kind of pain, so I would consider just getting them professionally painted and not put on, a good manicure can go a long way and not damage your nail bed because they take a real long time to heal. Don't forget, everything takes a real long time to heal now, the meds you are on suppress your immune system so a little tiny thing can turn into a real big deal. I'll have to tell you all about Africa some day, the minor surgery I had for a little pencil eraser sized growth that took me to the ER twice and the Dr. and urgent care three times. It had to come off, but think about anything elective that has to heal, you have to prepare and that means going off meds and that means.... well all kinds of things. I just want to say that now that you have RA, you really need to reconsider your plan for those new knockers your husband wants to buy you!