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Living with Psoriatic Arthritis (PsA)

I'm losing all my hair 😟

#1

My rhumetologist says it could be the prednisone. I’ve been on 5 mg per day for 5 months with no end in sight. I’ve lost about 1/3 or my hair so far. It’s really bad. I also have moderate acne on my chest. I haven’t had a pimple in many years until this breakout.

I made the mistake of trying to stop taking it cold turkey. That was a mistake. I got really sick. Bad flare up, super nauseous, allergies really bad (I don’t normally suffer from allergies except in spring), and my eyes caught on fire. I had to get help from my optometrist and he gave me, guess what, more steroids in the form of eye drops.

I’ve also been getting steroid injections in my joints, one or two at a time, of 40 mg depo medrol. Yep, more steroids.

Rhumetologist said she will have to slowly wean me off the prednisone since I’ve been on it so long. She said my adrenal glands stop making them while I take them and that explains why I get sick if i stop them.

I am taking 4 mg of folic acid a day, 2500 mg of biotin, biosil, hair skin nails supplement and an herbal hair and skin supplement.

I just ordered some hair extensions but I am worried I will lose so much hair I won’t be able to even wear them. I would have to move on to a wig. I’m only forty one and have super sensitive skin. I’m not sure I will tolerate the extensions much less a full wig.

My only hope is that I will stop needing all the steroids soon snd my hair will grow back.

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#2

I’m sorry :cry:. I would have thought that the level of prednisone that you are on would be manageable, but obviously everyone is different. You should always talk to your doctor about stopping a medication though. It wouldn’t help your hair but might have minimized the trouble coming off it. I hope things smooth out soon.

By the way, if you’re feeling self conscious about your hair there’s lots of hair coverings that you might find more tolerable.

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#3

Hi there. It’s very disturbing to lose our hair, and I hope this is just a temporary thing for you. I don’t think I’ve ever heard of anybody losing their hair from taking prednisone.

Alopecia and Alopecia areata are conditions that cause hair loss, and some members here have had this happen to them. I also read about Telogen Effluvium, which is the thinning or shedding of hair more than what is normal. I’m beginning to worry it’s what I have, because my hair has been falling out like crazy lately.

I hope you get some answers about your hair loss. Take comfort in knowing most of the time hair grows back after Alopecia areata. It’s very understandable that you’re upset!
Sybil? Can you give her some reassurance?

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#4

I can’t offer any help other than to say I’m sorry too. The only time I shed lots of hair was when I went on a very low calorie diet to shed a serious amount of weight. It came back after but not to what it was. Since then I did take pred for the better part of a year mostly on lower doses than you are presently, my top dose was 4mg per day but I never stayed on that daily for more than a week at a time and truly it didn’t affect my hair.

So just big hugs from me.

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#5

Yes and no … ‘no’ because I lost a lot of hair a couple of years ago and know how unsettling it is, plus no matter how often people tell you it is likely to grow back, nothing other than a cast-iron guarantee will do.

But ‘yes’ too … because your hair is very likely to grow back. I think I had about 6 months of increasing baldness. The large bald patches were completely bald, mine wasn’t a case of ‘thinning’ either. And then something just seemed to switch back on and it started to re-grow very rapidly.

Your comment about your adrenal glands rings an alarm bell with me … sounds like your body has taken a real jolt and hair follicles are sensitive. I reckon, tell yourself you couldn’t care less about hair loss and any other white lies that may help while you focus on getting back to better health overall.

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#6

Thank you all for the support. I am back on the prednisone. Only made it 4 days without. I got super sick and sore. So I am not sure where this is going or when it will end, but I hope everything works out. Thanks again!

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#7

Stoney, Can you please elaborate and share any information you may have about “other hair coverings that might be more tolerable”? I ask because I also have hair thinning due to health and medication issues. I can’t take the skin and nail vitamins due to my liver issues and N.A.S.H. I’ve researched the glue in hair extensions and they look wonderful but since I suffer from migraines the clip ins wind up hurting my scalp. I was just hoping you may know alternatives that I am not aware of, thanks

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#8

Check out this conversation -

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#9

Hi Kmwestmo!
I started losing my hair after taking MTX, Embrel and Humira. I take 10,000mg of biotin daily as well as AG Pro (vitamins recommended by docs I work with). I am sad to report that I am seeing minimal new growth, but my lost has significantly lessened. I actually have a topper that I started wearing because I was so embarrassed by my “bald” (that is how I see it) head. It’s been over a year since I purchased the topper, and wear it significantly less now. My goto is a thick headband that covers the portion of my head that is thin.

I am sorry that I can’t offer you my go to “cures”, but know that you do have someone going through the same thing and I can offer you hope.

I got my topper in 2-17. What I have learned since then is that my hair doesn’t make me the person that I am. Although when I do go “out” and want to dress up I will put my topper on. But my everyday is just a headband. It is really just our attitude towards our appearance that others see, and not our shortcomings.
I hope that your loss slows and that you can find your confidence again whether or not your hair comes back.

Best of luck to you and please feel free to reach out if you ever need someone to talk with!!!

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#10

Hi Kwestmo. I’m so sorry about your hair loss! Has it changed at all over the months? I developed alopecia areata last year while on Enbrel. Multiple bald patches all over my head as big as 2 square inches and as small as 1/2 an inch. It’s so distressing and makes me sad! Especially when I first discovered it, but I still have moments when I find a new patch and have a crying session. Neither my rheumatologist nor dermatologist believe it’s related to any of my PsA medications because there are obvious areas of baldness rather than overall thinning (which can happen with drugs like methotrexate, I believe). What I’ve learned is alopecia areata is its own autoimmune condition and stress can be a huge trigger. I can sometimes notice burning and tenderness sensations on my scalp. The good news is that over time I am responding to corticosteroid scalp injections with new patches of hair growth. It takes a couple of injection rounds and grows back in odd directions but it’s something. Anyway I was hopeless a year ago and began being hopeful once I found a good dermatologist. It takes a huge team of medical pros to keep us well sometimes. Whatever your challenges and solutions are, do hang in there!

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#11

sha, this happened to me but alongside a big psoriasis flare. There was always the possibility that the two things were coincidencal. However eventually we (my rheumy and me, dermatology weren’t that great really) decided to re-start Mtx - all the skin and scalp issues dated from a few weeks after stopping it.

A few weeks after re-starting Mtx my skin cleared and the hair started growing back. The photo below shows the re-growth stage, my hair grew incredibly quickly from there on. I only had a few spots of psoriasis on my scalp, some of which had become concrete-hard accretions of skin cells, which is where the baldness started, but much burning and tenderness on apparently clear skin, just like you report. I would speculate that Psoriasis was affecting the scalp somehow, even where it wasn’t visible. I know that ‘invisible’ psoriasis sounds a bit weird, but then a lot of things about PsA and P are weird! I used to dab apple-cider vinegar on my scalp to cool the burning. I was desperate by then & used that type of vinegar simply because it was expensive and folks on the internet endorsed it. To me that is desperation! I daresay any vinegar might help.

Has anything changed medication-wise, apart from starting Enbrel? Any other big changes of a chemical nature, even stopping (or starting) smoking, for example? Again, speculation only but I think physical stress related to purely physical changes can also trigger baldness. Just something to bear in mind in case this gives you any leads to work on. I like to think my hair would have grown back anyway once my body adjusted to doing without Mtx …

Sorry to be so speculative rather than offering facts. But keep thinking outside the box.

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#12

I’m have amazing results with the hair on my head and all over my body regrowing! I have made a radical diet change, started exercising daily, I am taking the right supplements and using Ayurvedic oils on my scalp and body. I’ve eliminated all chemical products from my life as is humanly possible.

I had to shave my legs for the first time in a very long time last week! Never thought I would enjoy shaving, lol. I have tons of 2 inch hairs on my head. My joints are improving and I am not longer going to the pain clinic.

Much of this improvement was brought about my current situation of divorce. As much as it hurts, this is exactly what I need to get my life together rather than continuing to pity myself and feel helpless to do anything about it. It does hurt, my body-mind, heart and soul to go through this process but the results I am seeing are nothing short of a miracle brought about by a hopeless situation. The join pain is still always there. It is worse at different times and still, yes, at times nearly intolerable. However, compared to where I was a year ago, I am a new person!

If anyone wants to know about my regimen for self-care that has so changed my life and outlook on my future, please contact me. I would love to help guide you in any way that would be of help.

Love and light to you all!

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#13

One should NEVER underestimate the effect stress of the disease (and life) can have on the body… Hair is the first to go. TG its not memory LOL

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#14

What a fabulous post @Kmwestmo, I’m so delighted for you that things are turning around so well for you, given where you were at. It’s just lovely.

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#15

I understand exactly how you feel Kmwestmo, and so pleased it is onwards and upwards for you. I had a somewhat similar experience, good on you for taking it as an opportunity and getting your self care really working for you :two_hearts:

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#16

After reading through this, I’ve got more concerns…I’ve had painful scalp (invisible psoriasis) for quite some time now—2 years at least. I’ve been on Enbrel 4.5 years, and I never thought this had anything to do with Enbrel. It gets worse if I don’t wash my hair e/o day—by the 3rd day it’s very sore. My concern is that I continue to lose more hair than normal—at least more than my normal. As I’m washing my hair in the shower, I get strands of hair on my face and in my hands, and many more when I comb my hair. There are 2 places on the back of my head where the hair is extremely thin—so far no fully bald patches, but obviously less hair than the rest of my head.

@Kmwestmo, I would be interested in your regimen for self-care.

@Sybil, how did you get your hair to grow back? Just restarting MTX? I’ve never taken MTX, so that couldn’t be why I have the painful scalp and thinning hair. I like the idea of using apple cider vinegar, but I imagine the relief doesn’t last too long. I’ve held ice packs on my head a couple times! :smile:

My dermy prescribed some ointment last year for this problem, but I really don’t want to put greasy ointments on my scalp—I did that for almost 40 years—I’m done with it unless active scaly psoriasis shows up!

I’m wondering…would it help to take folic acid?

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#17

No no no to folic acid and b vitamin supplements in general unless you are folate deficient. Folate levels have an effect of increasing t cells a b cells something that causes PsA symptoms. But that being said grandma j has your doc ever checked this vitamin b/folate levels? The most common effect is, wait for it, leukopenia… So you might be on to something, but supplement unless you know you are deficient.

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#18

Yes, the first completely bald patch appeared about a month after stopping, then there were more and they enlarged over a period of 6 months or even longer. Rapid re-growth began less than a month after re-starting Mtx. So it was truly that cut and (blow-)dried.

Note that there was no thinning, just plain overnight baldness that worsened. I think thinning may suggest a different cause(?). The hairs I lost invariably had the root attached … it’s worth checking. Some hair that falls out naturally will have roots but other stands on the hair brush will clearly have broken off … I think mostly rooted ones suggests some sort of shock / stress reaction.

You’ve mentioned the uncomfortable scalp before though, so thinking back I really sympathise.

Sounds like tntlamb may be on to something. I think the best diet you can get down your neck is also highly advisable for hair. Lots of green veg (sorry if preaching to the converted).

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#19

I’ll write it out for you asap.

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#20

I don’t want to contradict what tntlamb said about folic acid; however, I take 4 mg per day. I started on 1 mg, upped it to two, then about 6 months ago to the final amount of 4. That may or may not be what has helped, but it hasn’t hurt in any way so I’ll keep it for now.

The first major thing that turned my hair loss was this:

https://store.lifespa.com/product/healthy-hair-tablets/

After about two weeks my underarm hair started to grow back, dark and thick and quickly.

I do not allow chemicals, including all hair products, to touch my scalp or body as much as I can control. Anything you put on your scalp will be taken into your bloodstream. I use ayurvedic shampoo and hair oil. There are a lot of good hair oils and each have different consistency. If you dislike feeling oily, use it before you shower. Really rub it in hard. Scalp massage increases circulation and delivers the supplements and vitamins you’re putting in your body to your follicles. I also have a scalp massager by conair i use as often as possible. It relieves headache a lot and again, stimulates circulation to follicles.

Many people, including my rhumy, told me to take “hair, skin and nails” supplements. They are all different so I researched what each of the ingredients offers and worked those into my diet through food.

I take collagen peptides with my morning vegan protein shake. This really helps skin problems as well.

I went vegetarian about 5 weeks ago. I eat a 90% plant bases diet, and I hated vegetable until now, and still don’t like many of them. Cooked correctly, many of them become sweet. Also, beans, lentils, nuts, seeds, whole grains such as wild rice and quinoa and fruits are on the menu. I use Ghee, whole milk, the collagen as I mentioned daily, and I have an occasional egg. All cow products must be grass fed and organic. Non-homogenized milk is best but hard to find.

Do not take hot showers. Take warm enough for your comfort. Use a good wide tooth comb, especially after oiling scalp to disperse it through you hair before shower, never on wet hair. Let it air dry if possible. If you must blow dry, use coolest setting and keep it far from your head. Really massaging the scalp vigorously with the oil stimulates lymphatic drainage which is good for so many reasons. Do this everyday or as often as possible.

Supplement wise, ashwaghanda, triphala and the healthy hair tablets are what I use. Together the ashwaghanda and triphala will lower blood sugar so monitor this. Take triphala for three months, then stop for three months. Take the ashwaghanda every day. The amount you need will be different for everyone. Ashwaghanda has a multitude of health benefits, not just for hair.

I cannot say if any of these things offers more benefits than any of the others. But the results I am seeing are more than I ever believed possible. I was ready to shave my head and give up. But like i said, when the underarm hair, body hair and scalp hair started coming back with “intensity” is the word i think i am looking for, I was ecstatic.

Please research all of these things and choose what feels right for you. At the very least, start with the hair oil, vigorous massage and invest in conair scalp massager. It was like 15 bucks at Meijer. It feels wonderful and provides a lot of tension relief.

Also, cardiovascular exercise will further stimulate circulation and blood flow everywhere in your body and encourages lymphatic drainage. If your lymph is clogged and not draining, the garbage gets back into the bloodstream and the liver says, hey, i already processed this and didn’t know what to do with it in the first place, and it sends it to the fat cells to be stored where it remains, slowly poisoning you. Daily bodily oil massage and skin brushing encourages lymphatic drainage when done properly. In ayurveda, skin brushing is called Garshana and there are gloves made of rough pure silk that your rub all over, then oil massage whole body, then shower. You will see amazing results.

i recommend https://store.lifespa.com/

This is a doctor who links ancient ayurvedic wisdom with modern scientific studies. Very good info. He is also on youtube. The website offers really good sources of all the things I’ve mentioned.

Utmost importance is your diet. Vegetarian or not, you need clean, unadulterated food. Nutrient dense, low calories. Whole, organic foods as much as possible. Eliminate ALL processed foods. The more your body is working to clear out garbage, the less time and energy it can devote to healing itself.

I have come a very long way in the past 6 months since I committed to healing myself. I couldn’t keep waiting for the stelara to work. It is helping for sure, but i still rely on prednisone. i’m stepping it down .5 mg at a time since I was on it for so long. It will take about a year to get off it. i can’t wait. I no longer going to the pain clinic, thank God! Don’t get me wrong, i suffer constantly from joint pain and sore muscles, but I am so much better than even 6 months ago.

Some of this may seem weird to you, i originally looked into ayurveda as a way to lose weight. i struggled throughout my life with ups and down of weight. I’m 5 foot 1 and got up to 223 lbs. i am now 167 after 6 months of this lifestyle and didn’t fully commit until january 15th when my separation from husband triggered a fire inside me to WORK for it.

Positive thinking, meditation and acceptance and especially forgiveness are key to healing. Try to get out of feeling like a victim of this disease. I do not condemn anyone who feels that way. I did for a LONG time. But this is something you can release and it will trigger a fire in you as well. Use it to power through the next few months if you decide to try any of these things. Do consult your physician before trying the supplements. I don’t know you or your details so I can’t say what is right. This is what is working for me and I hope some of this may help you, too.

Above all, LOVE yourself and your mind-body. It has not betrayed you. It is crying out for healing. It is not your fault you have this disease and no one who does not suffer from it can really understand. So, in light of this, listen to yourself. Comfort yourself by focusing on self care, as often as possible. Caring for your body will stop the fight/flight/freeze response and take you into parasympathetic calm. When your body learns to trust you again, by knowing when it needs nutrients, it will get them rather than garbage it cannot use, it will respond with enthusiasm. You will feel far less hungry, all cravings will stop and you will start to actually taste and appreciate your food without the overstimulation of salt, sugar and additives. One controversial topic is caffeine. Some are for it. I am not. I eliminated it and have far more energy now. Stimulants act like steroids in that the body would rather use them than use food and body fat for energy. We’re just programmed that way genetically. As a human endowed with reason and the ability to choose, you can choose what to eat and how to treat your body. You’re not confined to follow your genetic drives.

Good luck on your journey and please ask me if you have questions. Thank you for caring enough to share your thoughts and time with me.

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