Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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i'm done :(

lionprincess00
lionprincess00
I'm done with enbrel! I didn't brush my hair for several days and gently pulled it back. Brushed yesterday to a massive wad full of hair, and washed it this morning to the same. It's half, HALF the thickness it was. I have literal white bald spots as well as facial crown major thinning.
I WILL be bald if I don't get off it. It's been 9 weeks, 9 more and it will be gone. I quit arava and it didn't slow or stop. I dropped to half dose of Plaquenil and no change. I was hoping it wasn't the enbrel, but this began within a week of starting enbrel injections. I am not due to see the rheumy til July, and I fear her reaction to me quitting or desiring to.
I saw enbrel has a half life of 70-130ish hours, so within a couple weeks if it was enbrel the loss will slow right???
Id rather have the 20 diarrheas a week on arava than go bald
:'''(
That's probably what I'll wind up doing. I just am scared my rheumy won't understand. Maybe I'll call her tomorrow and scedule to see her sooner than july.
Thx for the vent. So sad right now over this. All meds have side effects we would rather avoid, but completely bald is my limit!
deleted_user
deleted_user
Good luck with the decision and hoping your rheumy realizes that it is your body and you know yourself and reactions to medications better than anyone else.
beechfeet
beechfeet
Oh no, sad for u, I understand. I had huge hair loss when this
lousy disease kicked into high gear. It's not mere vanity , it's
tough to deal with. now I have tufts of excesdive hair growth from my stint on pred. Hope it starts to grow back soon. take care
lionprincess00
lionprincess00
Thx guys. Some within my circle don't agree with the decision reminding me the reason I began these meds in the first place. But I just can not deal anymore. It's so much of it and because it's every day, it won't stop til it's gone. Thx for the encouragement.
Thewino
Thewino
Lion,

It's your body and your body self image. This is an important concept and one that your Rheumy needs to accept.

My hair thinned so much that you could easily see my scalp and this was before starting Enbrel. I couldn't stand this look any longer and just went with a buzz cut. But, being a female, this is obviously not an option for you.

I know where you're coming from though. I couldn't stand the way I looked with thinned out hair.

Regards,
TheWino
deleted_user
deleted_user
Oh I am so sorry :( I can't even imagine your feelings.
sammyo1
sammyo1
That's a tough one.
Have to say I'd feel the same.
I thought my hair was thinning on Enbrel but couldn't be sure as had it cut shorter & layered. It did curl. Thought I was going crazy but nope it curled on the injections. Straighter now that I'm off.

Yes side effects of these drugs are hard to deal with.
It's your life & what you feel you can live with. Others may have an opinion but it's simply not their body.
I'm sorry you have to deal with this.
Sammy
annettearizona
annettearizona
Good idea to call and even if they still can't get you in till july,perhaps they can make some suggestions/adjust meds with you before then.
deleted_user
deleted_user
We all have our limits, and sometimes it's the things that other people think are less significant that push us over the edge and just make us want to scream at this disease and all we go through because of it and the meds we have to take. I hope you can find a different medication that works better with your body and provides relief from the symptoms!
nonightshades
nonightshades
good luck girl. sounds tough for you either way. just my rather odd opinion but remember that singer that did the song "Nothing Compares to You"? I always found her look very sexy.
trishcorsi
trishcorsi
You need to talk to your rheumy, there are drugs available to offset the hair loss, I know this from experience. I am one of those "vain" people who can't really handle the balding part that seems to come from medication. My daughter gives me a rack of crap about being vain, but it is what it is. I might have RA but I don't have to look ill!!! Your rheumy has to understand you are still you; you just happen to have a creepy disorder. Welcome to our group and good luck. Trish
lionprincess00
lionprincess00
Thx everyone. I will NOT take the enbrel Wednesday night, and I made an appointment to see the rheumy this Wednesday (next appt was in July). I took a pic of my loss today, and boy it's impressive. If she doesn't understand she's nuts, but she will because...well...it's a ton!

I plan to go back to arava, 500mg once a week and 400mg Plaquenil, what I wss on before this hayride of adding enbrel.

I'll also take my leftover enbrel on ice to see if she wants it. If not, I'll call the manufacturer, and beyond that I dont think there's anything else I can do with it besides the trash.

Thx for the encouragement and listening to my vent everyone.
mary-k
mary-k
lionprincess00 I have a question. I been on Enbrel for six weeks, with some relief, will I start loosing my hair to? It has been risky to even try Enbrel, as I have cirrhosis. My medicines are limited I can try. I can not have Mexthoextrate, and not sure about predisone. I can not deal with the thought of hair loss!
lionprincess00
lionprincess00
I don't think so. It's listed as a rare, unknown amount of cases, side effect. Mine was noticeable the first hair washing I had after my first injection. It wasn't a gradual "what's happened!" That snuck up on me. No, it was all at once. It started that day, washing my hair, a day or two within my first shot. If you have been on it 6 weeks it and notice nothing, I wouldn't worry too much. My rheumatologist doesn't think it is the enbrel I feel, but now I've quit almost all meds I KNOW it is.
Again, very rare from my readings for tnf a inhibitors to cause this amount of hair loss, and it was immediately after my first dose.
mary-k
mary-k
Thank you for explaining, I am so sorry about this happening to you, I don't think doing what makes you feel best as you can is ever a wrong thing. I hope you can get to the bottom of it quickly, and it will stop. It must be horrible to face that everyday. Good luck to you. P.S I hate being that small part of side effects, it has happened to me to with other medicines.
deleted_user
deleted_user
Thanks for sharing. My hair is very thin also. It never grew back after I went off methotrexate, but I had not connected it with Enbrel. I started both at the same time (I think). I now have a question for my rheumy.