Help with sudden hair loss and possibly poor doctor advice:

[Nylarthotep]

Hello all,

I'm new here and have come by to ask your expert opinions. I have an issue with an overactive immune system. My doctor prescribed me a steroid drug a few months ago to decrease activity of my immune system. About 1 month into the treatment my hair began to fall out in one spot near the back.

First, a bit of background:
I'm 42 years old and have a full head of hair. I've never experienced any hair loss, and none of my family members on either side are balding. My hair is normally VERY thick and is basically the same as it was in my 20's.

So I started this steroid treatment, and some began to fall out. Not too much, maybe 50-100 hairs a day mostly from the back region, but enough to worry me. I went back to the doctor and he said the medication could possibly be causing an increase in DHT or progesterone levels in my scalp. He said most likely it would grow back after the treatment since I don't seem to be male pattern baldness prone, but that he could prescribe a medication to stop it. I said sure like an idiot without doing proper research.

He prescribed me Propecia. 5 Mg daily. So I started taking it and for a month saw no real change. Losing some hair here and there - still not noticeable. At around the 1 month mark, however, a disaster hit. My hair started falling out like CRAZY from everywhere. More from the top, but not just from the back - from the front as well. Also, quite a bit started falling out from the sides! So I went back to him extremely concerned both because of this and because my sex drive had ceased to exist. I did some research before returning and saw a lot of people claiming this initial "shed" was normal and to ride it out - but strangely I didn't find a single person who had come back and said they actually had good results after the "shed". Not to mention I didn't want to regrow hair in the first place! I simply wanted to prevent it from falling out due to the medication.

So I went back to see him and he was surprised this had happened. He said he had never experienced this before and took me off the Propecia right away. He said it should stop within a week or two. Well it is now a month later and as I sit here I can run my hands through my hair and get 1-5 hairs in my fingers each time - over and over again. I bet I'm losing 500+ hairs a day from all over my head and have been for a month. My hair is now so uniformly thin I want to shave my head, but he tells me not to since then we won't be able to tell how much continues to fall out. He refuses to refer me to any kind of specialist. My hairline isn't receding and in no area am I completely bald, but it is thinning uniformly, even on the sides. You can see my scalp all over even when it is dry - it looks awful. He keeps telling me it will stop and start to grow back in a few months, but I'm starting to think he is CRAZY. He has given me terrible advice thus far.

So I'm here now asking for your help. What should I do? Will the hair grow back? Was it a good idea to stop the Propecia? I assume it wasn't a good idea to take it in the first place! I bet I've lost a good 20% of my total volume of hair in the last month - sides and all. I keep hoping it will slow down but each day it just continues. It has also become VERY dry - to the point I don't even shampoo it any longer. It used to be VERY oily to the point I used salicylic acid shampoo daily. I have now gone without washing it for a week and it is still dry as can be. I'm worried the Propecia ruined my hair!

I have some white hairs here and there but no miniaturized ones I can see - the ones that are falling out are thick and black! Some have a little dot of something on the end of them where they come out. I can't tell if any new ones are growing in anywhere and going to a specialist isn't an option since he won't refer me and insurance won't pay for it.

The doctor also switched me to a different steroid medication that he said wouldn't cause such high levels of DHT/Progesterone. I find it hard to believe this is all due to the steroid since it seems to be common with the Propecia and has gotten much worse since I took the Propecia.

Any help/advice or encouragement would be wonderful. I'm at a loss of what to do and the doctor is no help. He acts like it's no big deal I'm slowly going bald. He also says not to stop the steroid (I considered it) because the Propecia is probably what is making it fall out and we need to wait for it to stop or slow down from the Propecia first before we can tell if the new steroid is causing hair loss. But by then it may ALL be gone, LoL........

Any advice for a desperate man? Any info on how long this "shed" usually lasts and whether it actually DOES grow back would be wonderful.

 

[duality8]

Hi. Sounds terrible I must admit. I would say that if you started the steroid treatment first and it began to fall out starting from then - that would imply that as being the cause of the hairloss. You also mention stopping Propecia but it continues to fall which again points to the steroid, not to mention that you are currently on a different steroid treatment but still noticing so much hairloss. Have you tried sending a message to any of the forum memebers who you read stating the hair loss on steroids was an 'initial' problem to see if it ever resolved? You could also contact the company that makes both steroid treatments to see if they have ever recieved feedback from users about hairloss when taking it. I haven't used propecia myself so cannot comment on its side effects, if any. Anyone else reading have any idea?? Pls post.

I wouldn't rely your doctor if his advice hasn't been good so far. Many a time you just have to do your own thorough research and find out things for yourself.

 

[dallasboy]

Dude, steroids are the cause. Why are you on them? TRT, HRT?

Steroids can be very bad to the hairline, just google steroids and bodybuilding and you will see (it ramps up DHT). Also, steroids (and Propecia) can reduce your sex drive to nothing....more than likely the steroids did it because I doubt taking propecia for 1 month can drive your sex drive down.

When you take steroids (which is test), your body will stop make its own test, which is called "shut down", which means your d*ck will quit working. What bodybuilders do to restart the process after a round of roids, is to take SERM's and estrogen blockers along with natural test boosters.

Another thing, is you could be going through a shock process in the body, which can lead to rapid hair-loss all over the head...which usually reverses itself after the initial shock.

 

[Nylarthotep]

Dude, steroids are the cause. Why are you on them? TRT, HRT?

Steroids can be very bad to the hairline, just google steroids and bodybuilding and you will see (it ramps up DHT). Also, steroids (and Propecia) can reduce your sex drive to nothing....more than likely the steroids did it because I doubt taking propecia for 1 month can drive your sex drive down.

When you take steroids (which is test), your body will stop make its own test, which is called "shut down", which means your d*ck will quit working. What bodybuilders do to restart the process after a round of roids, is to take SERM's and estrogen blockers along with natural test boosters.

Another thing, is you could be going through a shock process in the body, which can lead to rapid hair-loss all over the head...which usually reverses itself after the initial shock.

They aren't the type of steroids you're thinking of - they are another variety used for lowering immune system response and increasing red blood cell count. I was on the same steroid a couple years ago for the same health issue (glomerulonephritis) and didn't experience any hair loss.

I asked him to run more tests on my hormone levels but he refused, telling me not to worry and that things will "even out" eventually.

I really think the main cause is the Propecia. Everything got much worse the moment I hit the 1 month mark of Propecia use - which seems about normal for the "shedding" to begin from what other users say. Overnight it went from minimal hair loss to massive - and this was well into the steroid treatment. Also, the low sex drive is a common side effect of Propecia since it lowers DHT levels in the blood. The steroid I'm on shouldn't cause low sex drive - or so the literature says.

I'm pretty much on my own here so any help you can give would be wonderful. Perhaps some idea of how long this awful intitial shed from Propecia lasts and how much hair can be shed due to it?

 

[DoctorHouse]

What autoimmune disease or disorder did your doctor diagnose you with that you need to take steroids? Some autoimmune diseases can lead to hair loss. For instance, Hashimoto's thyroiditis can cause hair loss. Remember according to some doctors, they feel balding can be some form of an autoimmune process or disorder.

 

[kc444]

Has the loss of sex drive persisted? And why did he prescribe 5mg? That's the usual dose for prostate disorders, not hair loss. Also, I'm not a doctor, but I wouldn't think that this type of steroid would affect DHT at all, but I could be wrong. What is the name of the steroid?

If you are losing hair all over your head equally, it's probably not male pattern baldness. Maybe I missed it, but could you provide us with a timeline as far as when you went on finasteride and when you got off of it?

 

[Nylarthotep]

What autoimmune disease or disorder did your doctor diagnose you with that you need to take steroids? Some autoimmune diseases can lead to hair loss. For instance, Hashimoto's thyroiditis can cause hair loss. Remember according to some doctors, they feel balding can be some form of an autoimmune process or disorder.

The disorder I have is called glomerulonephritis. My immune system becomes overactive and begins attacking my kidneys, causing kidney function to crash. At one point before they figured out what the problem was I was on dialysis and everything. That was a couple of years ago. They treated me with a steroid and an immunosuppressant at the time. My kidney function started to improve, and then they got me on a strict fitness regimen. I didn't take any drugs for a couple of years, but last year I got sick with strep and they started to notice increased immune system activity again, so they put me back on a steroid in August - not the same one I took the last time. The steroid I was on the last time didn't cause any side effects in the year+ I took it.

Everything was fine from August to late December - but then in late December one day out of the blue I started to notice some hair falling out - mostly from the back of my head. Not too bad, but enough to ask the doctor about after it had been happening for a couple of weeks. This is when the doctor put me on Finasteride at 5 Mg daily - early in January. I took the Finasteride from early January until the beginning of February - that's when all of a sudden one day hair started falling out by the handful - after a month of the Finasteride. It was and still is falling out all over - sides and all, although slightly more is coming from the top. I can grab a handful of hair even from the sides and pull gently and between 3-10 hairs come out each time.

So at the beginning of February as soon as I noticed this "shedding" I started doing research and found it was common with Finasteride when it started to work. I didn't want to regrow hair, however - it had been given to me to PREVENT hair loss from the medication - so this was defeating the purpose. I notified the doctor right away and he took me off it and switched me from the steroid I WAS taking to the one I took previously for a year with no side effects. So since the second week of February I've been taking only the steroid that I previously had no issues with. No Finasteride. I have been off the Finasteride for about 3 weeks. Still, hair is falling out like crazy, however, which has me worried. I had hoped it would stop by now. I plan to just shave my head for a couple months and then let it grow back uniformly, but my doctor doesn't want me to shave it until we see the problem has stopped.

I'm beginning to think he doesn't know what he is doing, however, so that's why I'm hoping you all can help me here. He doesn't want me off the steroid since it is keeping my immune system in check........and this steroid previously didn't cause me any issues, so he doesn't think I'll have any issues this time. I don't know why he didn't just give me this one in the first place......but that's hindsight.

So I think that provides a good timeline and explanation of the situation. If anyone would like more info just ask. Thank you all for your quick responses in the matter......

 

[Nylarthotep]

Has the loss of sex drive persisted? And why did he prescribe 5mg? That's the usual dose for prostate disorders, not hair loss. Also, I'm not a doctor, but I wouldn't think that this type of steroid would affect DHT at all, but I could be wrong. What is the name of the steroid?

If you are losing hair all over your head equally, it's probably not male pattern baldness. Maybe I missed it, but could you provide us with a timeline as far as when you went on finasteride and when you got off of it?

I think I answered al of your questions but one above. Yes, I'm still noticing decreased sex drive. It was sky high until starting the Finasteride, then decreased significantly about 1-2 weeks in to the Finasteride treatment. It still has not returned.

 

[DoctorHouse]

I did some research about your autoimmune condition and it can be associated with hair loss. Lupus is considered to be glomerular too. You may be experiencing a telogen effluvium or a diffuse alopecia areata sometimes associated with autoimmune disease. The Propecia could have induced a telogen effluvium as well as it did to me. However, I think maybe minoxidil might have helped more than Propecia in my case. I used both at the same time so I don't know which one helped. People that tend to have autoimmune disorders can show diffuse loss which is your case.

I would research a good diet you can use when you have your type of autoimmune condition. If you read online you will find most autoimmune diseases can be controlled by a good diet as well. They recommend to stay away from processed foods with corn, soy and wheat and eat organic. Stay away from caffeine, artificial sweetners and alcohol. Get plenty of exercise and reduce stress.. I have Hashimotos and changing my diet has helped me feel so much better. I think if you control your disease, your hair will eventually improve. I think something topicals that fights inflammation like copper peptides might help your situation too.

I really think in about 6 months you might recover from the shed as long as your disease is under control. Keep us posted. Autoimmune disease really can wreak havoc on your body and your life and your hair. However, things can get better when they are under control.

 

[Nylarthotep]

I did some research about your autoimmune condition and it can be associated with hair loss. Lupus is considered to be glomerular too. You may be experiencing a telogen effluvium or a diffuse alopecia areata sometimes associated with autoimmune disease. The Propecia could have induced a telogen effluvium as well as it did to me. However, I think maybe minoxidil might have helped more than Propecia in my case. I used both at the same time so I don't know which one helped. People that tend to have autoimmune disorders can show diffuse loss which is your case.

I would research a good diet you can use when you have your type of autoimmune condition. If you read online you will find most autoimmune diseases can be controlled by a good diet as well. They recommend to stay away from processed foods with corn, soy and wheat and eat organic. Stay away from caffeine, artificial sweetners and alcohol. Get plenty of exercise and reduce stress.. I have Hashimotos and changing my diet has helped me feel so much better. I think if you control your disease, your hair will eventually improve. I think something topicals that fights inflammation like copper peptides might help your situation too.

I really think in about 6 months you might recover from the shed as long as your disease is under control. Keep us posted. Autoimmune disease really can wreak havoc on your body and your life and your hair. However, things can get better when they are under control.

I have a flawless diet and spend 1-2 hours in the gym a day. I'm in unbelievable shape. I did this with the goal of - like you said - controlling the condition without medication. It worked for quite some time - until I came down with a nasty strep infection which got my immune system going again. They put me on the steroid as a pre-emptive measure to ensure my condition didn't get out of control again. I don't expect to have trouble keeping it under control. I don't use stimulants, don't drink, don't smoke......eat VERY clean.......etc. I'm under 10% body fat at around 200 pounds.

Also, like you said - at this point I'm fairly certain the hair loss was due to my condition and would have been fine had I not taken the finasteride. I'm mainly wondering how long I can expect this "shed" from the finasteride to last? Under normal circumstances how long does it usually last? I want to have an idea so I can determine if it was indeed caused by the finasteride. I'm hoping to get assurance that this is normal with finasteride and some kind of time frame I can look forward to for this to stop, LoL! It is becoming more worrisome as it goes on longer and longer......

 

[kc444]

Has the loss of sex drive persisted? And why did he prescribe 5mg? That's the usual dose for prostate disorders, not hair loss. Also, I'm not a doctor, but I wouldn't think that this type of steroid would affect DHT at all, but I could be wrong. What is the name of the steroid?

If you are losing hair all over your head equally, it's probably not male pattern baldness. Maybe I missed it, but could you provide us with a timeline as far as when you went on finasteride and when you got off of it?

I think I answered al of your questions but one above. Yes, I'm still noticing decreased sex drive. It was sky high until starting the Finasteride, then decreased significantly about 1-2 weeks in to the Finasteride treatment. It still has not returned.

Most people say that the sex drive returns after about two weeks, but it will probably take longer for you since you were taking a higher dose than most people (5mg vs 1mg). I would give it another two weeks or so for it to leave your system and for your hormones to return to normal. According to research posted on this site, finasteride remains fully active even at very low levels, so you just need to give it time.

 

[Nylarthotep]

Does anyone have any idea how long the shed normally lasts? I would think the length of time the shedding lasts would be different than the length of time it takes for the Propecia to leave the system......

 

[Nylarthotep]

Well my fiance looked through it today and there seems to be a lot of new growth in the front. She couldn't tell in back because it's fairly long, but hopefully that's a good sign. I'm currently down to losing maybe 100 or so hairs the last two days. At the worst it was like 500. It's looking a bit thicker, especially when I wash it, so hopefully that's a good sign that the finasteride is wearing off. Perhaps I'll post some photos so you can tell me what you think. Any thoughts? Sex drive isn't back yet but "performance" in bed is fine even though the normal drive isn't there, btw.....

 

[Nylarthotep]

Still falling out, although new growth is evident. Anyone with advice on how long to expect this shed to last?

 

[Nylarthotep]

Well I saw my doctor today and he suggested trying .5 Mg of Dutasteride a day. I've read that it is similar to Finasteride but with MORE chance for side effects and a half-life that lasts for months. I think he's crazy. Any advice or ideas?

 

[kc444]

That seems like terrible advice and from what you're saying, it sounds like your doctor doesn't have a clue. After experiencing finasteride side effects, I think people are crazy to use dutasteride. It works in the same way but is more potent. If you got side effects from finasteride, they will be worse with dutasteride. You should go to a dermatologist to see if you have androgenetic alopecia or if it is a side effect from your medication or immune condition. I don't think the type of steroid you are taking increases DHT, so if that is the case and it is caused by your medication, finasteride/dutasteride won't help you at all. What is the name of the steroid you're on?

If it is male pattern baldness, stick with finasteride, not dutasteride. It sounds like it is probably something else, but a physical exam by a dermatologist may be the only way to know for sure.

 

[Chris87]

Sounds like your doctor doesnt really know what the f*** he's doing and he's just poking around in the dark now. To prescribe you 5mg of finasteride daily to a guy who doesn't have male pattern baldness is just retarded. Even more retarded is suggesting you go on dutasteride, as it is more potent than finasteride.

I don't think its male pattern baldness. You're in your 40s, have no hair loss on either side, and have had perfect hair up until now. Also, I've never heard of male pattern baldness losing hair from the back of the head (unless you mean your crown, then that is pretty common)

Sounds to me like it has something to do with your condition or the steroid.


I wouldn't f*** around with finasteride or dutasteride if i were you.

Let us know about your sex drive though..im interested to hear your progress on that as well

 

[Nylarthotep]

Sounds like your doctor doesnt really know what the f*ck he's doing and he's just poking around in the dark now. To prescribe you 5mg of finasteride daily to a guy who doesn't have male pattern baldness is just retarded. Even more retarded is suggesting you go on dutasteride, as it is more potent than finasteride.

I don't think its male pattern baldness. You're in your 40s, have no hair loss on either side, and have had perfect hair up until now. Also, I've never heard of male pattern baldness losing hair from the back of the head (unless you mean your crown, then that is pretty common)

Sounds to me like it has something to do with your condition or the steroid.


I wouldn't f*ck around with finasteride or dutasteride if i were you.

Let us know about your sex drive though..im interested to hear your progress on that as well

Originally the slight loss was further back than the crow - well behind the "swirl" cowlick or whatever it's called......

So it's still falling out today. Seemed to slow down a bit but now it seems worse again. Shaved my head last week. Looks better, but you can see empty hair follicles if you look close. And now I just notice tiny short hairs falling out, LoL. The follicles are dark in color though, not like when someone goes bald and they look just like normal skin. When I shaved my head the hair loss in the back was most obvious - where it had originally started coming out. But now that it has had over a week to re-grow, that part looks normal again. Now it's just that there are a lot of empty follicles all over if you look closely. It isn't only in one area either - it is uniform - some here, some there......all over the head. Hairs falling out all over the head - even down on my neck.

Sex drive not back yet but my skin is getting oily again, slowly........so I think that's a sign the DHT is coming back. I've always had skin troubles but it dried up completely when I started the finasteride.

I'm not trying dutasteride, obviously. The doctor seemed angry I "defied" him.

Oh, and I stopped the steroid for 2 weeks to see if it had any effect - but it didn't. And my white blood cell count is high so they really want me to remain on it.

Any continued advice or thoughts is welcome. At least the back area where I originally started losing the hair is growing back nicely.......

 

[Chris87]

It sounds like it is some different kind of alopecia to me. I don't believe it is the typical male pattern baldness. No male pattern baldness I've evver heard of starts at the back of the head like that. I would seriously find a doctor who specializes in alopecia. Some forms of alopecia, I've heard, are thought to possibly be caused by an immune response.

 

[Nylarthotep]

Anyone familiar with how long it takes for hair to grow back after falling out? Just curious......I know the phases and all but I'm wondering when I can expect to see.......say......hairs that fall out today due to finasteride start to regrow.

Wish I'd never started it - the back where this whole thing started looks fine now - it's the other areas that look bad at this point, which only started after the darn finasteride.......and it just keeps coming out. Sides, neck, and all........