Can Lialda be used for Crohns - those with hair loss read

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FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 4/15/2008 10:40 AM (GMT -7)   
Hi all! Despite the fact that I changed my birth control a month and a half ago I am still experiencing significant hair loss.  It isn't noticable to others because my hair was thick to begin with.  But I notice, and my huband notices.  Someone on the UC forum posted that they were invited to a roundtable discussion at Shire.  When members went last year they where wined and dined.  I mentioned that I would be interested in going if they were accepting crohns patients.  The poster mentioned that he had been on Lialda at the time he was contacted.  Lialda is made by Shire as is Pentasa.
 
I am fairly certain that my Pentasa is causing my hair loss.  I was reading about Lialda and I saw this section on patient's stories: http://www.lialda.com/patientstory.asp The post by "Marla" caught my attention.  She was losing hair due to her medication and when she switched to Lialda it stopped.  I am skeptical about Lialda being once per day.  I am pretty sure Pentasa was a UC medication before it started being used for crohns.  I am doing very well crohns wise on the Pentasa and am very hesitant to make any changes with it.  Has any one on here tried Lialda? Does it work for crohns?
 
 
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


Pampers
Regular Member


Date Joined May 2007
Total Posts : 76
   Posted 4/15/2008 10:57 AM (GMT -7)   
I am on Lialda for Crohn's. I started about a month ago, and it replaced my Colazal. I have not had any hair loss from this product yet (so far it's still growing in from when I lost it during a prednizone taper)

So far my experience with Lialda has been good. Other than the gas and the stink of the med (smells exactly like a skunk roadkill) its been alright. I'll post if anything changes though.

Anyone else have feedback for FitzyK23?
DX with UC 8 years ago/Re-Diagnosed with Crohn's 6/26/2007
Canasa / 1 per day
Azathioprine / 100 MG Day
Lialda(new) 2 per day
Rowasa / 1 per day
Humira
 
Tried:
Asacol / 12 per day
Levaquin 1 per day
Flogyl 1 per day
Prednizone / 40 MG Day( finished taper!!!) 
Colazal/ 9 per day
Entocort/ 3 per day
 


FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 4/15/2008 11:02 AM (GMT -7)   
Yikes, a stinky med? Does it taste skunky too? I was just looking at the side effects of Lialda and hair loss is listed as one! Amazing that they are advertising on their website that this drug treated someone else's UC and stopped their hair loss yet Lialda can cause hair loss in and of itself.

My doc hasn't suggested this yet. I feel like I am on my own finding a solution to the hair loss. GI doesn't think its the Pentasa. Primary is still trying to find the cause. I have low calcium but she doesn't think that could be doing it. I will be having my blood check again soon to make sure.
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 4/15/2008 12:16 PM (GMT -7)   
I was losing hair by the handful last fall, until I started taking a folic acid/B vitamin supliment daily.  It took a week or two, but the hairloss stopped and it's growing back.  I have a lot of hair also, so it wasn't really noticible to others, but it sure bothered me!

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/15/2008 1:56 PM (GMT -7)   
Does the folic acid upset your stomach at all like Iron can?
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1131
   Posted 4/15/2008 3:07 PM (GMT -7)   
Lialda can be used in Crohn's if it's in your colon.
 
 


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 4/15/2008 3:15 PM (GMT -7)   

I've been taking folic acid for over 3.5 years to combat hair loss caused by Imuran. Some time ago I wrote a a post about hair loss and CD meds. Here is the portion I wrote on Pentasa:

Mesalamine [Pentasa, Asacol] can also cause hair loss. Unfortunately some physicians are not as compassionate in recognizing that excessive hair loss can be quite traumatic to the sufferer. Hair loss from mesalamine can sometimes be controlled or minimized by dosage change. If you suspect that your doctor is going to say that hair loss is NOT due to the mesalamine and you suspect it is, the following study can be printed out to take to your appointment.

Diffuse alopecia as side effect of mesalazine therapy in Crohn's disease

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=8553032&dopt=AbstractPlus


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 4/16/2008 6:29 AM (GMT -7)   
It hasn't bothered my stomach, but I always take it with food.

Pampers
Regular Member


Date Joined May 2007
Total Posts : 76
   Posted 4/16/2008 9:25 AM (GMT -7)   
the Lialda just stinks to hih heaven, but it doesnt taste bad at all. But whe you open up the lid you get a stink come at you like the bottle has gas. Not too pleasant. :)

If I notice any hair loss I will definitly post. Not yet to speak of, so far so good.
DX with UC 8 years ago/Re-Diagnosed with Crohn's 6/26/2007
Canasa / 1 per day
Azathioprine / 100 MG Day
Lialda(new) 2 per day
Rowasa / 1 per day
Humira
 
Tried:
Asacol / 12 per day
Levaquin 1 per day
Flogyl 1 per day
Prednizone / 40 MG Day( finished taper!!!) 
Colazal/ 9 per day
Entocort/ 3 per day
 


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 4/17/2008 4:36 PM (GMT -7)   
I just started Lialda last week - I am currently in a flare and am hoping this calms the inflammation.  I have been taking 6mp and have taken prednisone twice in the last year and have had a lot of hair loss - the drs are not sure if it is from the medicine or from the trauma on my body of being sick.
 
Does Lialda cause hair loss?  I don't know a ton about it - my dr is also asking me about starting Remicade instead but I think I would like to try Lialda and see how that works.

bkennett
New Member


Date Joined Apr 2008
Total Posts : 2
   Posted 5/23/2008 11:15 AM (GMT -7)   
I took Lialda for 6 months and had severe hair loss....up to 45%!!! It hard to deal with. I just switched to a sulfa drug to treat UC-- I'm hoping this will stop the hair thinning. I'm also taking Biotin supplement for my hair? Has anyone had this same issue? I'd like to know how long it took for your hair to grow back.

Any help would be great!!!

not creative
Regular Member


Date Joined Mar 2007
Total Posts : 466
   Posted 5/23/2008 3:45 PM (GMT -7)   
I was on Lialda for my Crohn's for nigh on a year before I flared too much for it to handle and I was switched to Humira. Now, I'm in a mini-flare my GI put me back on lialda along with the Humira and I think it might actually be helping as I've been starting to feel better.
It never caused hair loss for me and was a real life saver in the not-having-to-take-75-asacol-a-day department. I take all four at night and it's fine. I have found that they do smell icky coming out of the package but don't taste like anything.

bkennett- I lose my hair in times of hardcore stress (crohn's flares, hospitals, stress) and have lost it significantly a few times in the last 5-6 years. I used Nioxin and it did seem to help. Also, there was this stuff a stylist gave to me called "Stretch" it was bright pink and came in a tub, she said it was from somewhere on the east coast.
Laurenne, 23 Student @ University of California, Davis.
Dx'd w/ IBS and CD in 2002
On Humira, Strattera, Zoloft, (Multivitamin, Flax Oil, and Omega complex when I remember.)


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 5/23/2008 6:37 PM (GMT -7)   
eyes  I don't care what the GI's say...Imuran, Pentasa, 6mp...they cause hair loss.  After my first resection the GI said "everyone thinks the hair loss is from the drugs, however, it is from the trama of the surgery and the level of infection that was in the body".  Well, I do agree with the trama/infection part and I bought her explanation hook, line and sinker at the time.  I am currently going through yet another period of hair loss and I know I can't reduce the Imuran, so if anyone finds a solution, please post it!

ssmith415
New Member


Date Joined May 2008
Total Posts : 5
   Posted 5/24/2008 1:42 PM (GMT -7)   
Hello
I've only experienced hair loss with predisone.....I have been on Lialda for over 6 months, and I am still growing the hair that was lost during the high doses of seriods. I ALWAYS take it with food, and have no problems with taste!
-Sherri
Sherri-28 yrs old
Crohn's Disease-diagnosed 1/2007
5mg predisone
Lialda
Azasan
Remicade Treatments every 6 weeks
B-12 Shot every month
Multi-Vitamin


chrissy27
Regular Member


Date Joined Oct 2007
Total Posts : 67
   Posted 5/25/2008 9:25 PM (GMT -7)   

Hi :-)      I've been on lialda for about a year now and i haven't really noticed a significant amount of hair loss but i have noticed some recently, nothing to be concerned about....but it could be stress. 

 

christina


27 yr old female, diagnosed with crohn's colitis with stricture of the colon april 2007, first fistula- october 07 :(  
joint pain and swelling
 
 
current medications:  Imuran 50 MG, Lialda 1.2g, tramadol 50mg when needed, remicade


Illy
Regular Member


Date Joined May 2008
Total Posts : 117
   Posted 5/25/2008 11:46 PM (GMT -7)   
on the Lialda website, it mentions hair loss as a possible side effect:
 
 
Lialda and Pentasa are both mesalamine, so not sure why they wouldn't have the same effects, positive and negative.
 
I think the advantage to Lialda is supposed to be the reduced dosing, otherwise should be the same as Pentasa.

athenstr
New Member


Date Joined Jun 2008
Total Posts : 7
   Posted 6/2/2008 3:37 PM (GMT -7)   
Regarding Lialda/mesalamine:

Dose is important, as the literature with which I am currently familiar shows that hair-loss as a side effect is dose-dependent (and *reversible*). My understanding is that it's quite an uncommon problem, at least on lower doses of the drug (2 tablets/day, for example).

I'm not a medical doctor, but rather a PhD student in the life sciences with a pretty decent working knowledge of physiology and pharmacology. I realize that I'm no authority on any of this stuff, but I think it's very likely that GI flare-ups are a much more common culprit for hair loss than mesalamine. If that is in fact the case, effective mesalamine treatment should mitigate (not necessarily stop) excess hair loss stemming from GI stress.

I'm a 25 year old male. about 2-3 months ago, I noticed that I was shedding excess hair. Because it seemed to be coinciding with fluctuations in my apparent GI health, I scheduled appointments with both a dermatologist and a gastroenterologist.

I met with the dermatologist first, and have been taking finasteride (~1mg daily), eating more protein, taking a biotin supplement (biotin forte w/ zinc - 3mg x 2 daily), taking a lysine supplement (500mg x 2 daily), and taking a multivitamin (currently some crap from Kroger, should probably change that soon). I'm also trying to be sure to get a solid intake on iron (don't go overboard on that one, though, it can be harmful!). It supposedly takes at least 3 months to tell if finasteride (aka propecia, proscar, etc) is working. I sometimes think I can tell, and sometimes I'm not so sure.

I met with the gastroenterologist about 2 weeks ago, and have been taking Lialda (2.4mg daily) since then. I did notice that it seemed to be causing headaches for the first 7-10 days, and it coincided with (maybe caused?) worse diarrhea/urgency problems for the first 3-5 days. If these actually were side effects of the drug, they're gone now.

It does seem that I am noticing fewer small (immature) hairs being lost since starting my dermatologist-inspired regimen. I suppose I haven't been taking Lialda long enough to notice if it's exacerbating the excess shedding, but I will be sure to post here if I believe it is.

Maybe I'm just an optimist, but I'm expecting to see significant thickening of my hair over the next 6-9 months. Whether it's from lowered DHT levels (thanks to finasteride), or a Lialda-aided gradual recovery from GI flare-up-induced telogen effluvium, I don't really care.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13455
   Posted 6/4/2008 4:18 PM (GMT -7)   
Broom, I have been on Lialda for UC since June 06. A month ago my gi doubled my dose to 4 pills instead of two for a bad flare. I take Entocorte for my cd. My flares are so much alike its hard to say which is causing what,lol. I have had great results doubling the medication. I do have an abdominal fistula and had to go back on Remicade in March. In the fall of the last year I started losing hair, alot for me, hair on my pillowcase every day, losing it when washing it. This was very unusual for me. Finally in the past month things have slowed down in that dept thank goodness cause I was getting thin and my hairdresser even noticed it. I think my hair loss was due to a flare going on. Susie


athenstr
New Member


Date Joined Jun 2008
Total Posts : 7
   Posted 6/8/2008 12:49 AM (GMT -7)   
Also:

Shire's official website for Lialda (http://www.lialda.com/faq.asp) lists "hair loss" as one of the "most common" side effects. I believe someone has already mentioned that in this thread. However, it might also help to put the phrase "most common" into perspective. If you take a look at the literature that came with your medication, you'll see a section entitled "Adverse Reactions." Here, you'll see a table that lists all of these "most common" side effects, which are defined as such because they were the only side effects experienced by at least 1% of Lialda takers during two phase 3 clinical trials.

In this table, you'll also see that hair loss (aka "alopecia"), was reported by ZERO of 177 patients taking 2.4g/day (2 tablets, once daily). Out of 179 patients taking 4.8g/day, only TWO reported alopecia (1.1%).

I acknowledge the possibility that some patients experienced hair loss but did not notice and report it during what appear to be 8-week clinical trials, but I think that's pretty speculative.

I also acknowledge that, in the Netzer paper cited by Ides, it is reported that 4g of Pentasa seemed to cause hair loss that was supposedly mitigated but still present after a dose reduction to 2g. However, I'd expect mesalazine administered in the form of Lialda to be lighter on the side effects, due to its more localized delivery of the drug.

athenstr
New Member


Date Joined Jun 2008
Total Posts : 7
   Posted 6/10/2008 7:36 AM (GMT -7)   
I thought cross-linking this might be useful to those following this thread who aren't browsing the forum:
http://www.healingwell.com/community/default.aspx?f=38&m=445715&g=1149955#m1149955

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10392
   Posted 6/10/2008 7:44 AM (GMT -7)   
This topic has been cussed and discussed to death in the UC forum. After some research, the bottom line is that every med used for UC - 5-ASA's, steroids, immunosuppressants, biologicals - show hair loss as a possible side effect. Not all people get it, in fact most don't. And sometimes one 5-ASA will cause hair loss while another stops it for one person, but for the next person it's just the opposite.

One of the most aggravating things about IBD and its treatment is that everyone seems to have a different experience. Some of our members report taking Biotin daily has helped with hair loss.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4096
   Posted 6/10/2008 9:53 AM (GMT -7)   
Has anyone tried Rogaine? I am taking Pentasa, and at the moment my GI symptoms are under good control, so I don't want to mess with stopping the Pentasa. I have a hard time taking vitamins as it messes up my GI system, but I try to eat a healthy diet. I was wondering if Rogaine would negate the hair loss from the pentasa
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 8 250mg pills per day, Cipro 1 week/month, Metamucil, probiotics


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 6/16/2008 11:50 AM (GMT -7)   
Does Lialda stop the urges and frequency issues? Do you get full bowel control back, like when you have to "go" you can control it if you're not close enough to the toilet, because currently my issues are still those 2 things, when I have to go it's immediate and although I am doing better frequency wise (usually 5/day, except during my periods then it can be much more) I'd like to know if Lialda combats that issue as well and does it help during the times of mensturation when things tend to get worse.

Any experiances anyone has with these issues that you can share would be greatly appreciated....although I'm not sure if it would be an option for me because imuran never worked for me in the past.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


athenstr
New Member


Date Joined Jun 2008
Total Posts : 7
   Posted 6/18/2008 7:29 AM (GMT -7)   
I'm a male, so I can't comment on the menstrual issues. I can, however, state with confidence that Lialda completely eliminated my urgency/diarrhea problems after about two weeks. It did seem to make things worse at first, and I almost discontinued use of it. I've been on 2 tablets per day. So far, so good.

soppendeuff
Regular Member


Date Joined Jun 2008
Total Posts : 27
   Posted 6/20/2008 12:31 PM (GMT -7)   
Hi.

I also experienced a great deal of hair loss after I went off the birth control pills. It could just be hormonal fluctuations. My hair loss stopped after two months. Sometimes it takes awhile to get your natural hormones flowing again after having become accustomed to the artificial hormones in the pill.

That'd be my guess here...not the Lialda. You have my sympathy...that was a brutal time for me.

Best,
Leslie
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