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fuzzywuzzy 
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Joined: 22 November 2009
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Posts: 16
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 Topic: Freakin Hair Loss!!!! $#*?@
Posted: 17 April 2012 at 10:30am |
Hi everyone,
I haven’t posted in a very long time….actually I have not been regularly active on this forum but you guys have always graciously answered my questions.
A while ago, I posted regarding MTX and hair loss. I also mentioned that my RD had said that the next step would be to give Arava a try. Well, my hair loss subsided and carried on with the MTX for a while….up until 4 months ago actually. It was not working for me and I was clearly in need of a change of meds. I went on Arava in November and it took 6 weeks for it to kick in. And when it did, I felt great. I started running 5 km, I play and dance with the kids, I’m doing aerobics…really I feel wonderful. I have managed to escape most of the side effects…with the exception of one….the feakin hair loss!!! And to me…this is the absolute worst one possible. I could manage an upset tummy, even diarrhoea…but losing my hair by the hand full…I can’t stand this. I wish I could be that person who says…”well, too bad for my hair, my body is feeling the best it has in years”…but I can’t. It’s too upsetting to see all this hair…I already see and feel and difference in texture and quantity. Realistically, and mathematically for that matter, I can’t continue to lose this much hair and not be bald!! I don’t have a particularly full head of hair (my hair is fairly think to begin with).
The explanation I read on the web is that Arava and MTX and others like it prematurely send the hair into the Telogen phase (the resting phase) and after 100 days in this phase, they fall….as they would normally. However, instead of 10% of the hair being in this phase…a much higher percentage is involved.
I guess I have a few questions :
- Will the hair loss stop at some point…like will my body get used to it and not shed my head of hair?
-Even if I stop Arava, will my hair continue to shed…I mean, is the damage done? And for how long?
-I’m on Biotin, multivitamins, grape seed extracts and using Nioxin shampoo and conditioner…what else can I do? My RD says folic acid is not necessary on Arava (although there is some in the multivitamins).
My next option is to start a Biologic. I have been told this by my RD. I think he mentioned Enbrel as the first to try. Does Enbrel cause hair loss? And I read that Enbrel is usually taken with MTX or Arava…but no way am I going to continue the Arava and quite frankly I don’t particularly wan to take MTX either. Can Enbrel be taken alone? Is it less efficient?
Oh and another side effect of the Arava that I have encountered is weight loss…although it is not clearly obvious whether the Arava contributed directly to my weight loss or rather indirectly due to the fact that I have been more active. I lost over 30 pounds and I have thrilled to be back at my normal weight (after years of fertility hormones and a triplet pregnancy). If I stop Arava, will I gain all the weight back?
Sorry…my post is long and not very well structured…
I’d love to hear back from you with your experience…
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-32 year old female
-JRA since the age of 5
- MTX, Sulfasalizine, Plaquenil, Orudis,
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fuzzywuzzy
Newbie
Joined: 22 November 2009
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Posts: 16
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Posted: 18 April 2012 at 6:50am |
No posts 
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-32 year old female
-JRA since the age of 5
- MTX, Sulfasalizine, Plaquenil, Orudis,
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lorrie
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Joined: 12 August 2006
Location: Brisbane, Aus.
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Posts: 355
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Posted: 18 April 2012 at 4:09pm |
Am sure u will get more posts soon. Allow for busy schedules, and time zone differences around the world - am in Aus. and it was 3.30 a.m. my time when u posted  I've been on Arava for about 18 months now and yes, I found that I'm so much better on it. Sadly, no weight loss, so I think your feeling less achey and more energetic wd have something to do with it. Moving around sometimes is a little difficult for me as 30 years of RA with some OA thrown in has left its mark. I did find that Arava gave me the 'trots' for a while until I cut out some of the fruit n fibre from our healthy diet. Once body grew accustomed to the med. it was all ok. Yes, there was a little hair loss but that happened on mtx also. Rheumy has me on both meds plus Celebrex. I take Biotin and another vit. B tablet, and am careful not to blow-dry hair any more than necessary. My hairdresser has several times assured me I have plenty of hair. It's just so fine but always been like that. I hope you find some medication that will suit, so that you can hang on to most of that hair!! Lorraine
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"The swords of battle are numerous, and none more effective than humor" - Stephen Jay Gould
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fuzzywuzzy
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Joined: 22 November 2009
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Posts: 16
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Posted: 29 April 2012 at 4:57am |
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I'm so upset. My hair is falling out like mad...90 strands as of this morning!! Damn this is so unfair... I've called my RD and I'm waiting for a call back but I know that ultimately I will have to make a choice between staying on my meds and feeling great but continue losing my hair... Or quit the meds and feel like crap my keep my hair...
How about folic acid? Is this something that could help? My RD said that it wasn't necessary to continue taking it with Arava. I started a whole load of vitamins ... Desperate means call for desperate measures. I take grape seed extract, biotin, a vitamin specifically for hair and nails, and a multivitamin.
I wish I could chat with someone in the same boat...
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-32 year old female
-JRA since the age of 5
- MTX, Sulfasalizine, Plaquenil, Orudis,
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lorrie
Senior Member
Joined: 12 August 2006
Location: Brisbane, Aus.
Online Status: Offline
Posts: 355
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Posted: 30 April 2012 at 5:36pm |
Rheumy didn't mention coming off folic acid when I started Arava - possibly because I'm still on mtx - so I still take .5 mm a day. Some folk take more. Worth asking your rheumy about it. Does your hairdresser have any hints to help? I do know that we all lose a certain number of strands of hair a day, but forget the number - and at certain times of the year I tend to 'moult'. I know it's scary to see loose hair on comb, in hairbrush ... but not as bad as ending up in a wheelchair because meds have been discontinued. Speak to rheumy and hairdresser and I hope they can come up with something that will help. Lorraine
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"The swords of battle are numerous, and none more effective than humor" - Stephen Jay Gould
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lorrie
Senior Member
Joined: 12 August 2006
Location: Brisbane, Aus.
Online Status: Offline
Posts: 355
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Posted: 30 April 2012 at 5:40pm |
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P.S. There are lots of members in this group - SURELY someone can add to my comments to help our newbie!!!
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"The swords of battle are numerous, and none more effective than humor" - Stephen Jay Gould
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fuzzywuzzy
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Joined: 22 November 2009
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Posts: 16
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Posted: 01 May 2012 at 6:27am |
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100 srands a day is considered normal...I'm losing 3 times this amount...if not more. I'm pretty sure that it is the Arava that is causing this.
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-32 year old female
-JRA since the age of 5
- MTX, Sulfasalizine, Plaquenil, Orudis,
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Brisen
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Joined: 09 June 2007
Location: So. California
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Posts: 3712
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Posted: 01 May 2012 at 2:58pm |
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I wish I could offer advice, as I'm on Arava also. Fortunately for me, I have the opposite problem. I also take Prednisone, which I'm sure is the reason for my hair being so thick. When I first started Arava (4 yrs. ago?) I did experience some hair loss, and I did ask my RD about Folic Acid. He said it doesn't help with the side effects of Arava...it only helps with MTX.
One of my previous co-workers (who also has RA) experienced complete hair loss while on Arava. She was diagnosed with Alopecia Areata, and her RD (who is also mine) never would admit that the Arava could have been responsible.
I would just have to recommend doing what you're doing...taking biotin and hair/nail vitamins. Also, since I went on permanent disability, I only blow dry my hair once or twice a week. I let it air dry most of the time since I don't go out much. I really think the combination of limited blow drying and taking Prednisone are the reason for my thick hair.
Hope things turn around for you soon. Let us know how it goes.
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Gale
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babs10
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Joined: 09 March 2008
Location: USA
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Posts: 5820
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Posted: 02 May 2012 at 9:49am |
fuzzy.... get yourself some Biotin 1000... and make sure you are taking a multi-vitamin! We neglect our needs sometimes... and this is one of them.... we need to be sure we are getting the right vitamins and minerals
Biotin helped me tremendously when I was losing hair..
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your2msart
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Joined: 14 July 2005
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Posts: 6
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Posted: 31 July 2012 at 3:29pm |
Sorry for the hair lose. I to was on Arava and found I could not deal with the hair lose. As a women that is my pride and joy and seeing I had a head full of hair before I started this disease journey. I just couldn't do it. Also that Arava stays in your system for a very long time after you stop taking it. I guess I need to by my som Biotin to see if it will thicken up.
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