Xeljanz and Hair Loss vs. Major Flareup and Hair Loss

I know hair loss and thinning hair is quite troubling. The majority of the time hair loss is a delayed reaction to the worst of your flare (by 1-3 months) and hair regrowth is a delayed reaction (again by 1-3 months) to recovery from your flare. Hair is expendable, it takes a lot of energy and nutrients to continuously grow. During periods of ill health (malnutrition, anemia, and low vitamin b, b12 and d) our body ceases that growth and hair falls out. Once that health episode is resolved, hair growth resumes. Hair loss is mentioned as a rare side effect of all of our meds, all with different mechanisms of action, different active and inactive ingredients. Even those of us who don't take any meds experience hair loss during flares.

Here's a good watch in hair loss and IBD from the Michigan IBD school:

https://youtu.be/p-1KvIBVcZc

Mostly, you have to wait it out. Make sure you're no longer anemic and malnourished. Some say biotin-based shampoo helps hair regrowth.

There are two self care things I did when my hair felt brittle and I experienced severe hairfall after a flare

1) 3 drops of Ylang Ylang essential oil + 3 TBS Virgin Coconut oil massaged into hair and either left overnight (depending on how dry and weak it feels) or washed off with a shampoo after 1 hour under a tin foil and warm towel. This does a lot to relax one's mind too and leave hair feeling moisturized.

2) Pure aloe vera (the gel) mixed with 2 Tbsp of olive oil . Massage through hair and scalp and wash off after 30 minutes. This did something quite miraculous for me to arrest excessive hair fall.

Try shampooing your hair less frequently when it is at its weakest. These routines may help strengthen your hair along the way for sure but it was the iron transfusions that actually put a stop to it for me ( I was badly anemic). Excessive hairfall (and when in clumps especially) is certainly an internal issue or deficiency that needs to be addressed. The external self care measures may just support you on your journey to healthier hair. Certainly check thyroid levels too in addition to the others.

Once you feel more settled in your gut you could perhaps look at specific hair supplement too. Biotin taken internally is supposed to be helpful for hair growth. I find I don't tolerate it well so stick to a collagen supplement which does help with hair too.

Sherrie, you had a terrible flare up & it's going to take time for your body to heal & reset. Your body was robbed of nutrition. Your hair will grow back, it's going to take time. You had mentioned in another post that you were anemic, this can also cause cold hands.

Try your best to lower your stress level, stress is so hard on the body. Glad to read you are responding to Xeljanz!

Losing my hair was the worst of it certainly because not only was it scary to see so much falling out just like that. It dramatically altered my appearance too and I was terrified I would be bald in no time. Hair being my best feature so very distressing. It got so bad at one point that I went on to buy a wig! Thankfully my endocrinologist (and not my GI ) decided my iron supplements were doing nothing for me and if anything were aggravating things more and put me onto iron transfusions - I had two of Ferriinject - and that is when it all came together for me. Took about a month to stop completely but within the first two weeks of it I noticed my hair fall had dramatically reduced. My hair is certainly growing well again but not as healthy and lush as it was until a year back. It will for you too certainly.
The drastic weight loss from a flare does literally make muscle tone vanish too. You will have to gradually add more protein depending on what you can and cannot tolerate into your diet. Took me about 4 months to put on decent muscle tone again. It will certainly happen with time. Don't think too much about it. I think calcprotectin levels take a while to level back again, so you are looking at a couple of months from now if you are out of a flare. Be kind and patient with your body through all of this and know that it is doing everything it can to heal itself and your meds are helping too. Things I have found that absolutely aggravate my condition is mental stress, too much physical stress, a diet that is bad for me and dusty weather/pollen. Once I find ways to deal with these, troubling symptoms subside. Others are triggered by different things. You will have to keep track of things that make your symptoms worse so you can identify them as triggers and address them differently when you are in such situations. That approach seems to work best for me. This is pretty a much a lifelong marriage, even if it is the partner you never wanted!. One eventually learns to redefine normal and find ways to adjust with it. Keep doing what you are doing and keep asking questions. I certainly find it very helpful to read through people's experiences on this forum. You will be ok. Hugs.

I am 80 years of age and have been on Xeljanz for 2.5 years and have a good head of hair so doubt your hair loss is being caused by Xeljanz.
On another note here in Canada hair dressers have been closed for quite some time because of Covid and I have to talk nicely to my wife to cut it for me.