Need Help - first post - Medication/ flare-up

brucifer · Post by **brucifer** » Wed Mar 26, 2014 1:41 pm

My first post - I'll try this again LOL, I believe the first attempt went into the Ozone... I'm Bruce, diagnosed with LC over two years ago by colonoscopy/biopsy. Had better insurance then and was treated with Entocort successfully. Now working Temp job with 'bad' insurance. Flare up since January, have missed alot of work. Saw the Gastro today, he put me on 3 weeks worth of LIALDA (mesalamine) with the intent to switch me over to sulfasalazine after that.

He'd rather have me back on Entocort, but it's not within my financial reach. Could anyone provide me with a reputable Canadian Pharmacy to order through? Doctor will write me prescriptions for that purpose.

The other question I had was the alldaychemist website and what the Entocort substitute was: any ordering advice would be appreciated. My search abilities aren't that great LOL. My job and home life is kind of riding of finding a solution to my LC flare-up/medication thing. Trying to be brief today but i'll give more details about myself in the future. Thank you all for being here - Bruce.

Post by **tex** » Wed Mar 26, 2014 4:33 pm

Hi Bruce,

I'm sorry that you had a need to post, but welcome to the board. Frankly, I would be afraid of sulfasalazine, because it carries a high risk of adverse side effects. It's an old drug, so it's cheap, but it's not very practical for someone who has MC. And mesalamine is almost as expensive as Entocort (budesonide). The domestic cost of medications suitable for treating MC is absolutely ridiculous. The pharmaceutical companies are ripping us off royally (with the apparent blessing of our government).

Hopefully someone will post a link to a Canadian pharmacy where they have had good results, but I'm not familiar with them. I am familiar with alldaychemist, because their products are at least 40 % less expensive than most Canadian prices. Apparently, alldaychemist is where the Canadian pharmacies buy their supplies, because I remember someone posting that when they bought from a Canadian pharmacy, they received the exact same product that they received from alldaychemist, namely Budez CR. Here's a link:

http://www.alldaychemist.com/budez-cr.html

Prescriptions by U. S. doctors are worthless across borders, but Canadian pharmacies require them anyway.

It's probably some sort of feelgood gesture. No prescription is needed when ordering from alldaychemist (at least it wasn't the last time I checked). Members here who are using the Budez CR say that it works just as well as the branded (AstraZeneca) product (Entocort). Most people order a 3-month supply, because the shipping cost is roughly the same. Since the order has to go through Customs, we can't order more than a 3-month supply at one time (they will confiscate larger orders, unless the addressee holds the proper license for importing drugs), and total turnaround time for an order to be delivered is usually around 2 weeks (depending on how long it takes to get through Customs).

Again, welcome aboard, and please let us know how well this works out.

Tex

christinakay · Post by **christinakay** » Wed Mar 26, 2014 4:40 pm

Bruce,

I have been using Canada Pharmacy for over a year now. Great service. I get 100 budesonide for about $65. It takes
about 10 business days to receive the meds. I scan the actual paper script then e'mail it to them. You can call
the 800 number on their website. Hope this helps.

Christina

Leah · Post by **Leah** » Wed Mar 26, 2014 5:03 pm

Welcome Bruce. I hope you do decide to get the Budesonide, but be aware that some people don't have the immediate effect they got the first time around with that drug. Each subsequent time someone goes back on it, it seems to work less each time. Have you also changed your diet? If you want to stay in remission, you may have to look into that.

Take Care
Leah

brucifer · Post by **brucifer** » Wed Mar 26, 2014 5:26 pm

Tex and Christinakay, thank you SO much for your responses. My Gasto Doctor talks so fast and 'furious' that though he's a very nice guy I walk out with unanswered and occasionally un-asked questions. I was taking 2 entocorts from Nov. 2013 up to about a month ago when my major naseau began to get unbearable along with the fatigue we all seem to know so well. They were dated/filled October of 2012 and were stored in the basement (dry). He had said that Entocort doesn't go bad, but does he really know that? I think otherwise, I could be wrong, no idea of "shelf life".

Tex, I see your point with the sulfasalazine with the research I've done since I posted - doesn't seem like a good Idea. Thank you for the link to alldaychemist: I've also found Canadapharmacy.com that seems reasonable, but a little strange with their amounts - Doctor gave me a written script for a month's worth and 3 refills of Entocort, but can only get 300 pills at the most - will think on this.

I've taken today's dose of 2 Lialda and will be calling about going back on Entocort; not sure that's what's going to work with the age of what I've got left. Any danger of taking the 3 weeks worth of Lialda and then switching back? I'm really confusing myself now LOL.

Just wanted to tell you Tex I found this site and was a constant daily visitor for a long time: Earning a living after long unemployment kinda got in the way. This site is a godsend and I will make my presence known/ tell more about myself as time allows. Thanks again both of you - Bruce.

DebE13 · Post by **DebE13** » Wed Mar 26, 2014 5:41 pm

I don't have anything helpful to add but I wish you luck. I've been on entocort for years, always trying to get off of it but it makes my MC tolerable. I agree, this site is a lifesaver!

Don't be a stranger.

Gabes-Apg · Post by **Gabes-Apg** » Wed Mar 26, 2014 5:47 pm

Bruce
G'day from Aus.

One thing that might be worth considering, nausea can be linked to mast cells/histamines, you have probably seen this topic mentioned many times, that is because so many MC'ers have mast cell/histamine issues.

H2 blockers might improve things for you.

Take care.

Post by **tex** » Wed Mar 26, 2014 9:35 pm

Bruce wrote:He had said that Entocort doesn't go bad, but does he really know that? I think otherwise, I could be wrong, no idea of "shelf life".

He apparently read the same article that I did. It depends on the medication, and storage conditions of course, but in general, research shows that most medications are good far beyond the printed expiration date. In fact, most still work well enough for all practical purposes, decades after the expiration date. Check out the link that I posted in this old thread:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17057

Bruce wrote:Any danger of taking the 3 weeks worth of Lialda and then switching back?

If it's working for you, I'm not aware of any reason why you shouldn't be able to safely do that.

You're very welcome,
Tex

carolm · Post by **carolm** » Sun Mar 30, 2014 9:34 am

Bruce-- I just wanted to add that my primary care physician prescribed Sulfasalazine while we were waiting for my GI appt to come around. It was awful. I swear that stuff is poison. With my LC I felt dizzy, nauseated, and weak for about 1/2 the day. On Sulfasalazine I felt that horrid ALL the time. After trying hard to take it, I titrated myself off of it. I was truly better off without it. My suggestion is 'don't go there'. When I told my GI that I would refuse to take it if she prescribed it her response was "we don't even use that stuff. I would never prescribe it. There are much better medications out there." and she prescribed Entocort, which I took for 4 1/2 months. It really helped me get back on my feet while I sorted out my food issues.

Any way, that's my 'two cents': Avoid Sulfasalazine.
Good luck.

Carol

brucifer · Post by **brucifer** » Sun Mar 30, 2014 4:24 pm

Wow Thank you everyone for your help and best wishes. Lialada didn't work well for this mornings "potty time". 'Nuff said about that. Had a message to call my Gastro and will call his office tomorrow from work to find out what their advice is. Sitting on about 1 1/2 months worth of Entocort, but was given permission to go off in Feb. because of all the naseau in the morning, had been taking those 2 pills in the morning since November when Problems actually got worse (I went back and checked dates LOL, still keep a daily journal including my BM's).

Sorry if I'm rehashing some of this. Carolm thanks for the warning about sulfasalazine - got that same vibe from TEX. Won't go there. And Gabes too, trying to read about antihistamines in dealing with nausea and saw your post a few pages in. Think I'll stop at drugstore tomorrow and try taking some last thing before bed to see what effect that has. Any type, just an antihistamine to start with I suspect ? Experiment time...

I suspect doctor's message will be to go back on "old" Entocort - will find out tomorrow. And plan on Canadian or allday to get Entocort.

Leah - yeah, need to seriously get 'serious' about diet. Previously being a serious weight trainer, I was familiar with amino's and protein pwders.

I had lost 35 pounds in a months time when they (doctors) decided it was serious enough for a colonoscopy -duh, right? I supplemented with L-Glutamine, some Arginine and everyday weight gainer protein shakes to SLOWLY regain some weight. Was originally at 165, have been maintaining between 150 and 155 for a long time. Probably a good idea to start again at least with L-Glutamine, I could tell difference with that and the protein shakes. Was and still am never hungry until nighttime... I think You supp'd with some aminos if I remember correctly...
Just want to not be on the pot 2-3 times in the morning "flushingout" my system and then feeling nauseous all morning; the low energy level is also seriously in play.

If anyone has a suggestion as far as a specific post/thread to read about mast cells and antihistamines in helping with this, I would appreciate it. I'm on a laptop an have serious problems typing on this thing LOL after last several jobs involved dual screens and regular keyboards. Takes me forever LOL, and my fiance is on it a lot on Face book which I don't use or even have a page -"off the grid" because of my job experience, have worked with people's personal information for many years and am extremely cautious about stuff like that.

about mastcells and antihistamines but will try every/anything - have to do my homework but time/computer access a little limited. Gotta go, thnks to EveryOne!

Post by **tex** » Sun Mar 30, 2014 5:51 pm

Bruce,

Try the links in my first post in the thread at the link below, for information on how mast cell issues are associated with MC, and how to deal with them:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17780

I hear you about Facebook — I don't go there. And since I'm not a bird, I don't tweet, either.

There are plenty of conventional ways to get the news.

Tex

Leah · Post by **Leah** » Sun Mar 30, 2014 6:50 pm

Yeah Bruce, if you want to get to any stage of recovery and healing, you are going to have to get serious about diet. I also used L-Glutimine for about 6 months along with the Entocort ( but my diet was also very restricted). Be careful with protein shakes because they tend to have lots of ingredients that can make things worse… even the source of protein can be a problem ( Whey, Casein, soy, pea…etc.). Better to stick with real food protein. Time to be a carnivore!

Leah

Lesley · Post by **Lesley** » Sun Mar 30, 2014 7:45 pm

I agree. Every one has one or more ingredients that I can't eat. The only one I can use is hemp and it's revolting to me.

carolm · Post by **carolm** » Sun Mar 30, 2014 9:10 pm

Bruce-- I also had horrible nausea every day. I'd go to bed feeling relatively good then wake up with terrible nausea that wouldn't let up until about mid-to-late morning. I frequently had to take Zofran or OTC meclizine. My nausea was always strong. Even when my other symptoms were improving the nausea remained. I did use a PPI for awhile, then weened myself off and went with Zantac since it has antihistamine properties. It helped. I took one in the morning and one at night and saw nice improvement, yet the nausea was still lingering in the morning.

What really helped me to turn the corner and completely resolve the nausea was acupuncture. I was tired of taking meds and thought this was one way to treat it without taking any more meds. I was a quick responder and after 2 sessions the nausea was gone. I continued to get acupuncture for several more weeks, moving my appointments further and further apart. It helped me with motion sickness too.

I still take Zantac in the morning along with my Claritin because I think the antihistamine properties continue to help me. But the daily nausea has never returned since receiving acupuncture nearly 2 years ago. I haven't had any acupuncture for about 18 months.

So something else to consider on your journey to health.

Carol