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auslady
New Member


Date Joined Jun 2010
Total Posts : 11
   Posted 6/18/2010 12:57 AM (GMT -7)   
Hi
I was searching on the net for information about Crohn's disease and any reported hair loss when taking mesalazine/ mesalamine. I was diagnosed with Crohn's a year ago, but probably had it for the last 20 years!
I have proved to be a problematic patient: I reacted to sulphasalazine, so was on mesalazine and prednisolone. The plan was to wean me off prednisolone and onto Azathioprine. I reacted badly to Azathioprine as well.
The next plan was to wean me off prednisolone. Once I stopped taking the prednisolone (still on mesalazine) my hair started to really fall out.
While I am sorry to hear other people have had this side effect, I am at least grateful to know I am not alone.
I am not really sure what other options will be, but I will return to my GI now feeling more confident that I know what is causing the hair loss.
look forward to chatting with you all
auslady

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 6/18/2010 4:41 AM (GMT -7)   
Hi auslady and welcome, I too was on those drugs for my crohns/colitis and proceeded onto remicade infusions then built the antibodies so was taken off that and onto humira injections but for me none of that worked either so I ended up with an ileostomy. I don't post here regularly anymore but drop by to see how everyone is going and chime in once in a while. I post mostly on the ostomy board and also diagnosed with RA so I post there as well. But all up I was diagnosed with Crohns/Colitis 22 years ago and have been on so many drugs I have almost forgotton them all. Anyway glad you found the site but sorry you have to be here, if I can help with any questions I would be only too happy too. But I would say your GI may want to try remicade or humira as they seem to work really well in most cases. Take care and keep us posted
Doreen

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/18/2010 5:58 AM (GMT -7)   
Hey auslady and welcome to Healingwell. I too am maintained solely on Asacol and do have some hair shedding myself. From my understanding taking some additional Folic Acid and if you can tolerate it some Biotin will help to stop the hair shedding. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

auslady
New Member


Date Joined Jun 2010
Total Posts : 11
   Posted 6/18/2010 6:31 AM (GMT -7)   
Thanks Doreen and Nanners
I will try the Biotin and Folic Acid in the first instance. I was reading about the fish oil and Total Balance vitamins - has anyone been brave enough to go for the all natural approach? I am pretty sure my GI would not endorse this for me as he is concerned about a stricture. I have heard of remicade, but I am not sure if I qualify, is that more for ulcerative colitis?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/18/2010 6:36 AM (GMT -7)   
I would not stop the med you are on if it is working. Why fix something if it ain't broke. Many of our meds cause hair shedding. I know it seems like its alot, but I don't really think its that much.


Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

auslady
New Member


Date Joined Jun 2010
Total Posts : 11
   Posted 6/18/2010 6:42 AM (GMT -7)   
Just thought of something else: joint pains! it was my joint and back pains that I went to the GP about. This seems to be under control at the moment. I take it this is not uncommon?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/18/2010 9:35 AM (GMT -7)   
Not at all, joint issues are a big problem for most of us. I am in remission and still suffer alot of joint pain.
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

auslady
New Member


Date Joined Jun 2010
Total Posts : 11
   Posted 6/18/2010 7:03 PM (GMT -7)   
I have lost quite a bit of hair. it is now definitely thin, I will not leave it down, but I do not want to cut it much shorter because this way I can at least put it up. I realise in the scheme of things this should be the least of my worries, but the rest I can hide from others. this is getting obvious. There is no harm in trying the biotin, folic acid and fish oil/
I take a multivitamin, and have just started on calcium with vit D supplement. There is Biotin and Folic Acid in the multi

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 6/19/2010 6:19 AM (GMT -7)   
No remicade is widely used for crohns as well auslady, it is quite successful in a lot of cases. Joint pain sure is another problem most of us endure along with this dreaded disease, mine was diagnosed as Rheumatoid Arthritis , there are a few of us that have this along with our crohns. I have never been confident to try just natural therapies as I was afraid of doing myself more harm than good, although things like probiotics, and general vitamins I have been on and they certainly shouldn't be a problem, but I never took anything without checking with my doc first. Good luck
Doreen

Aussie1971
Regular Member


Date Joined May 2010
Total Posts : 115
   Posted 6/19/2010 6:47 AM (GMT -7)   
Hi Auslady, sorry to hear about your hair loss. I'm another that has suffered from hair loss (amongst many other things) over the years. I have noticed it is worse since taking 6mp and my hair is noticibly thinner now. I just try and not let it bother me too much. I also suffer some very debilitating joint pain and know it's common in Crohn's sufferers.
39yr old Single Mum of 3 Girls living in Sydney, Australia. Diagnosed with Crohn's April 2009 after suffering for over 20 years.
 
Current meds: 6mp, Salofalk granules, somac, Vendolizumab clinical trial, mobic and panadol osteo.
 
Also dx with Spondyloarthritis of the sacroiliac joints and psoriasis.


auslady
New Member


Date Joined Jun 2010
Total Posts : 11
   Posted 7/26/2010 5:50 AM (GMT -7)   
hi all
I am sorry I have not been on line to respond for a while. Thank you all for getting back to me. I am sorry to hear others have to deal with these joint pains as well. I have suffered sacro-iliac pain for years but had thought it was due to a work injury. It was very frustrating as I would get quite debilitating pain but could not explain what I had done to cause it (now I know -probably nothing)
My family and I went on a short break to Victoria this last weekend, we made it a long weekend by leaving Adelaide Thursday night after work. I have noticed that is my joints are going to play up these days it often starts with my shoulders aching and being a little 'crunchy'. I had not had an attack for about a month so was just looking forward to the holiday, but sure enough, Thursday night in the care I noticed that feeling, and by Saturday morning the joint and sacro iliac pains were full blown
So not happy!!
I am off to my gastro guy in early August, so will discuss what to do. I did see a rheumatologist, but it seemed he was going to be directed by the by the gastroenterologist so there did not seem much point to keep seeing both. Now I am wondering if I should go back and discuss this with him. Will work it out.

Claudine it must be hard looking after 3 children on your own, I hope you have supports.
I have one child and was a single mum and I know how tired I felt and the joint pains were so hard to work through, not to mention the tiredness and all the other weird things that go on with this disease.
My apologies again for not getting back sooner. has anyone heard from Nanna?

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 7/26/2010 10:03 AM (GMT -7)   
Auslady, when my joints get really bad I take ibuprofen. Just for a day, not longer, because it will definitely cause my bowels to hurt. But the ibuprofen does help me.

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 7/26/2010 6:22 PM (GMT -7)   
What, hair loss as well............I guess that explains the dramatic thinning I have noticed lately.  GREEEEEAAAAAAAT! smhair
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
 
 

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