Humira, Methotrexate, Embrel and hair loss Any ideas.

[noot]

Is there anyone out there that has had to take the drugs of humira, methotrexate or embrel for rheumatoid or psoriatic arthritis? I'm a newly diagnosed patient of psoriatic arthritis and my doc says I need one of these drugs and one of the side effects is hair loss. I realize that my life and joint health is more important than my hair but I was wondering if someone has words of wisdom. I've been reading these boards and at the age of 51 have finally acquired a beautiful head of hair that I am quite fond of. I'm very distressed by the new diagnosis but the thought of losing my hair just makes it 10 times worse. Any ideas would be appreciated. Thank you so much.

[torrilin]

Side effects don't always happen. They're a possibility, not a sure thing. Some side effects are very common, others are very rare. Your doctor should be discussing how rare and common the various side effects are, not just giving you an unordered list. Also, with a lot of drugs it's unusual to have side effect X without also having W, Y, and Z, because if you change X, it has a lot of other effects. Your doctor should discuss this sort of thing with you, so that you understand what to look for in case of problems.

Also, depending on the side effect, there may be ways to mitigate or avoid the problem. In the case of hair loss, it often is at least partly nutritional, so it may be that making an effort to get adequate amounts of vitamins, minerals and macronutrients would help. Drugs often interact in complex ways with our food, and you can easily run into situations where a food rich in a certain nutrient interferes with a drug absorbing, or the drug interferes with the nutrient absorbing. Hair loss can also be hormonal... and changes in your body's natural hormone balance usually are not good any more than changes in your nutrition are. If the drugs' mechanisms are understood, your doctor can discuss these sorts of issues with you. (unfortunately, we do not always understand why a given drug works, just that it works)

I happen to have a very serious (and potentially deadly) reaction to albuterol, a common asthma medication. I also have asthma, and until fairly recently there wasn't a substitute for albuterol. Luckily, it's a *very* rare set of side effects, and luckily, my asthma is very mild. Basically, if you know someone with asthma, I'm one of the reasons their rescue inhaler isn't an over the counter drug. Even so, it's possible to treat me with albuterol and not kill me (or I wouldn't be here to write this). It's not fun, for me or anyone else. But sometimes the risk involved in giving me the drug has been worthwhile. For most people, the drug is safe, and doctors often treat albuterol inhalers as something to just hand out any time a patient has breathing trouble... and they're right to do so! Just doing that with me is not such a good idea :). It's part of my job as a patient to understand when it's worth it to take a risky medication. I'm the world's leading expert in how MY body works, and it's my job to make sure the doctor is checking all the fiddly bits.

Thankfully, hair loss isn't life threatening :). But it is a fairly serious warning sign... so if your doctor is not taking your concerns seriously, it is worth being a fussbudget. This doesn't necessarily mean refuse to try the medication, but you should have some kind of plan in place so you are agreed about what counts as a good response to the drug, and what counts as bad. When I have a medication change, I might wind up having 3-8 different doctor's visits to check that the drug is doing what we want, that I'm taking it right, and that nothing unusual has shown up. 3 would be really low for a totally new drug for me, and 8 would be more typical for a drug with a complicated dosing schedule. It's expensive to do lots of medication checks, but it's a LOT cheaper than me winding up in the hospital for a month while they detox me. And it's way better than dead :D.

As reassurance, I also happen to take a pair of drugs that are considered somewhat risky together. Very often, patients would have a lot of trouble with the combination. For me, it works fine, with each drug doing exactly what it ought and nothing special coming up. You may well get lucky and wind up in a similarly fortunate situation.

[renia22]

Sorry to hear about your diagnosis. My suggestion would be to see a Naturopath or another Holistic Practitioner for a second opinion.

[noot]

Thanks Torrilin and Renia, I did get a second opion and xrays which show bone distruction are quite convincing. My doc called today and I discussed the side effect of hair loss along with other questions and he did say the methotrexate was the drug with the most hair loss and to used Rogaine while taking the Humira if hair loss occurs. I guess keeping your joints and not taking years off my life is definately more important than hair. It's just another thing to deal with. Hey nausea and low appetite is also a side effect so maybe I'll be able to lose some weight at least. Right?

[lapushka]

You won't know until you try. And your joint health *is* more important than anything. I understand, though, how you feel. You could look up the medication inserts online and read about the side effects, usually they are classified into common, less common to occur - if that would make you feel any better. At least your doctor is taking the possible side-effects serious and is ready to fight against them (rogaine) should it be necessary.

[renia22]

Thanks Torrilin and Renia, I did get a second opion and xrays which show bone distruction are quite convincing. My doc called today and I discussed the side effect of hair loss along with other questions and he did say the methotrexate was the drug with the most hair loss and to used Rogaine while taking the Humira if hair loss occurs. I guess keeping your joints and not taking years off my life is definately more important than hair. It's just another thing to deal with. Hey nausea and low appetite is also a side effect so maybe I'll be able to lose some weight at least. Right?

Haha about the weight loss :).

Also, sorry I should have clarified, I meant to say a second opinion about the treatment (not the diagnosis). Unless you are okay with the treatment plan your doctor is advising, of course, but if it isn't sitting well with you, oftentimes there are alternative remedies available that don't cause as many side effects, and can be amazingly effective. If you are interested, here is a link that you may find helpful:

http://www.connecticutcenterforhealth.com/health_concerns/rheumatoid_treatment.htm#2

Not sure who is reputable in your area..

[PrincessIdril]

I'm sorry to hear about your diagnosis.

The reason that hair loss is a potential side effect you've been told about is because methotrexate is a drug used in cancer treatments however for arthritis it's taken at a much lower dosage. So while hair loss in an issue it won't be as bad as cancer suffers get.
My mum has been taking methotrexate for quite a long time for her rheumatoid arthritis (possibly approaching a decade now but I'm not 100% on that). While my mum has lost hair she still has a full head of it, all that happened is that she has lost thickness. She still has lovely long hair, which is almost at TBL now. And to me at least her hair loss seems to have slowed down a bit in recent years (she might disagree with that but that's my impression).

When you say Humira is also an option for you I assume you are referring to the TNF blocker Adalimumab? If so my mum uses that to and I don't actually remember hair loss on the list of side effects. She uses it in combination with the methotrexate as studies as shown the drug is more effective and for longer when taken with methotrexate. These drugs have been great for my mum, they've really helped with her condition. She's only been using the Humira for a couple of years but it's really helping to keep her mobile. She actually needs both of her knees replaced and currently she is able to avoid that as while her knees are bad they don't hurt her.

And for her at least the nausea associated with methotrexate only lasts a few hours. She takes it before bed and sleeps it off, by morning she feels fine so don't worry about that side effect too much either.

[Elayne]

Well, one thing to consider is that psoriatic arthritis left to do its thing can also cause hair loss...

Anyways I certainly haven't heard of hair loss being a common side effect of any of the Biologics for psoriatic arthritis. (Humira, Enbril, Remicade, etc.) With methotrexate sure, it can happen, but at the dose for PA it still isn't super common. Off the top of my head there is also leflunomide and sulfasalazine for common, front line treatments for PA, which may or may not have a better side effect profile.

For my own experience with psoriatic arthritis treatments, methotrexate didn't do much to help and made me very tired the day after my dose, but no hair loss. Corticosteroid injections worked well short term, but always resulted in a nasty rebound when they wore off. Humira (without methotexate) got things under control the very first shot and have had only a bit of swelling and itching at the injection site for side effects.

[torrilin]

Hey nausea and low appetite is also a side effect so maybe I'll be able to lose some weight at least. Right?

God, I hope not. It looks like you don't have a whole lot to lose judging from your icon :). While my response to albuterol is lousy, the reason I'm *on* the risky drug combo (an SSRI and SSRI relative) is because I have serious weight loss problems with most other drugs that would work for my ADD. We're talking I'll cheerfully lose over 10% of my bodyweight, even if I were already underweight! For my particular make and model of body, that leaves me a solid 40-50lbs under the weight where I have good athletic performance. With the risky combo, I get to have a brain that works and a body that works, and I can put on actual muscle.

I'd rather be "too fat" and have the endurance to bike 50 or 60 miles than too skinny and barely have the energy to bike 3.

This kind of thing is why a doctor that listens is precious. For a lot of ADD patients, exercise is really important for their function. I also have early onset osteoarthritis due to some bone deformities, so I need to get regular exercise for that. And like all asthma patients, regular exercise is essential for my lungs to work their best.

It sounds tho like your doctor really wants you to do well, and they're hoping to find a treatment plan that will provide a good balance. I'll keep my fingers crossed for you.

[noot]

Thank you so very much for your response. I feel so much better and have talked myself off the ceiling after reading the post. You take Humira, Your hair is gorgeous and you feel better too. Life is good. Thank you Elayne

[Bethmc]

I also have psoriatic arthritis and take Humira and Methotrexate. I think I might be losing a little more hair than before, but then I am getting older lol. It really doesn't seem to be a big problem, though. I just try to do things that will help my hair like oiling, using a silk pillowcase, braiding at night, taking hair vitamins, etc. I'm sorry to hear that you are having to deal with this illness, but hopefully they have caught it early. Oh, I also use henna/indigo and the henna strengthens your hair and seems to make it thicker, or at least appear thicker. Hope this helps!

[Eyedea]

Hello. I also had these concerns when I was diagnosed with RA about 5 years ago. I was worried methotrexate would cause hair loss, which is actually one of the reasons I started growing my hair, since I figured I should keep as much of it as possible.
I've been taking methotrexate along with Humira, prednisone, painkillers, folic acid and calcium, but stopped the biologic injections recently mostly due to insurance/financial issues. I also want to see how I feel without it...
Anyway, for years I never noticed thinning or excessive shedding, but after a bad reaction to dye last year led me to lhc I paid more attention. After my scalp issue was resolved I was still aware of how much I was shedding, up to 300 hairs a day (yes I've counted...) which worried me.
It wasn't until a few months ago that my mom suggested vitamin b12 injections to try help with major fatigue. Like a miracle the fatigue lifted, along with decreased overall pain among other things. Almost right away my shedding decreased to about 50 hairs a day! I wish a doctor had told me about it sooner, but there's no money in vitamins and natural treatments, is there? :/
Long story short lol - these drugs are scary but living without them could be worse. Try not to worry about all the possible side effects and take the good with the bad. I hope your health and your hair will fare well. :)

[metricfuture]

While you're waiting for a final decision on which therapy you're going to start, try some (unsweetened) black cherry juice. While I'd never suggest a natural remedy in lieu of conventional therapy without first discussing it with your doctor, my mother-in-law noticed some pretty immediate and impressive results when she was drinking it on a daily basis. Bonus points: it's cheap, it's full of antioxidants and vitamin C, and it tastes pretty alright (assuming you like cherries and don't mind tart flavors). Worth a shot, I'd say. Most of the studies out there are on it's affect on RA and Gout, but there are some preliminary studies started on PA, too.

[noot]

Thank you PrincessIdril for the reassurance. I've just read that a lot of folks experienced hair loss but when I went to the actually pamphlet, I didn't see hair loss mentioned with humira alone, just when methotrexate added. Thanks again and I hope your mom is doing ok. I'm not as panicked as I was.

[noot]

Thank you Eyedea for the tip on B12. I've written in my book to mention to the rheumatologist when I see him. I hope you continue to do well without the humira.

[noot]

Bethmc, Thank you for your reply. My doc told me I have a "sever case" based on Xray, number of digits swollen and the sacrioilitis that I've had. I've just been diagnosed in the last 2 weeks so I'm still at that OMG stage. I'm a nurse and used to taking care of folks and not being a patient so all of this has just came crashing down on my head. I'm getting a hold of myself and coming to grips with the realization of life is going to be different. Thank you for responding to me. Sorry for typos as swollen fingers and really tired already. I guess things will be better with drug, even if there is some hair loss.

[Mely]

I have RA and have been taking Enbrel for years. I don't think it causes hair loss. My hair is thinner now than when I was younger but it is probably my age. (my older sister's hair has also got thinner and she doesn't take any of these medications).

However my rheumatologist wants me to take start taking methotrexate along with the Enbrel. In fact I have a bottle of the pills that has been sitting in the cupboard for a few weeks and I'm scared to take them. I'm worried about hair loss. However I have found it reassuring to read about other people who have taken methotrexate without much hair loss. I'm supposed to take 15 mg once a week, and then take 5 mg of folic acid 24 hours later.

[lmfbs]

I have crohns and have been on remicade (and others), but remicade is another TNF inhibitor, so the most similar. I often have a shed when I get high doses (over 80mg) but it's nothing serious and definitely hasn't caused very noticeable thinning.

Keep your insides as healthy as you can - it's the best thing you can do for your hair, and general health. However, please don't consider avoiding a drug because of the side effects. Sure, try homeopathy, juice fasts, acupuncture or whatever, but do it in conjunction with actual medication, please. Never put your hair ahead of your heath.

[akilina]

I had to take 16 pills of methotrexate for 4 days solid. I know its wayyy different, and for a way different thing than any of your diagnosed problems but I was so happy that I didn't lose any hair. I was truly worried I would, after that I had surgery and was under anesthesia then taking a ton of vicodin...I still feel really lucky that I haven't experienced any hair loss. If anything....I shed less strangely enough. I understand being fearful of having to lose hair in any situation like this. I know I worry about things like that alot.
Good luck..Hopefully it all works out and your hair stays in your head :)