Generic vs brand name entocort

DebE13 · Post by **DebE13** » Mon Dec 12, 2016 10:03 am

Any experience with the brand name working better than the generic? Sadly, still having issues and there is no improvement with the WD taking 3 Pills/day. I asked my GI and they have no problem writing a new script but are raising an eyebrow when I say I have 4-6 WD/day with my strict diet.

I am hoping my D is tied into my anemia and thyroid. Grasping at anything now. I am mo ing into doctor #4- not an endo this time but looking for either more T3 to get in the upper range of their normal or try NDT. I'd also like another opinion on my ferritin level still being low (25). I still feel like the walking dead and there has to be a reason. Hopefully this doc will be willing to look at the whole picture. Obviously having that much D- I am not absorbing much of anything.

Fingers crossed, once again

T · Post by T » Mon Dec 12, 2016 10:31 am

Deb
I was on A 4 month treatment (generic) but when the pharmacy did not have enough half of my pills was marked Entcort (same price)
But neither worked for me just A waste of money but some people have had good luck with it

Terry

DebE13 · Post by **DebE13** » Mon Dec 12, 2016 11:04 am

It does help control grumbles and night issues but nothing beyond that. So what do you do? I already said I will not go back on prednisone (that stopped working too- don't remember the dose only the horrible side effects)

Gabes-Apg · Post by **Gabes-Apg** » Mon Dec 12, 2016 11:24 am

Deb

I already said I will not go back on prednisone (that stopped working too-

not wanting to 'add' to your stress, but maybe entocort/predisone is not working for you anymore (regardless of if it is generic), this has occurred for other members.

DebE13 · Post by **DebE13** » Mon Dec 12, 2016 11:34 am

I'm figuring that is the situation but though it may be worth a try. I have excellent insurance and have been using it so it won't go to waste. Even though the D continues it does help at night. It's hard to get a good night's sleep in general but even more so when I am waking because I'm afraid of an accident.

Gabes-Apg · Post by **Gabes-Apg** » Mon Dec 12, 2016 11:44 am

when I say I have 4-6 WD/day with my strict diet.

my other suggestion based on the statement above, maybe your current triggers are not food related, and your ongoing issues are more likely to be environmental /external.

T · Post by T » Mon Dec 12, 2016 12:21 pm

For over A year I stayed on A strict diet of very few items any small amount of grease made me sick so it was no beef or pork.
Pepto to coat my gut coconut oil daily (my DW would load up my white rice with it)straight bone broth in A mug and drink it in the evening .
I started to add foods back into my diet in April and now I have Bile Reflux (I just thought MC was acting up nope)

Terry

Post by **tex** » Mon Dec 12, 2016 12:22 pm

Deb,

The only difference between Entocort EC and generic budesonide is the inactive ingredients. But of course that can matter for some of us. However, the manufacturer of Entocort EC makes a generic version that is identical to the name brand product (including inactive ingredients). The only difference is the packaging.

As far as iron absorption is concerned, you're already avoiding a couple of foods that inhibit the absorption of iron — soy and eggs. Calcium is also a big inhibitor of iron absorption, but I would assume that you're not taking any calcium supplements. If you're still taking cholestyramine, the timing might be causing it to sequester the iron in one or more meals. But you're right . . . the D associated with MC makes the absorption of most nutrients very iffy, and for all I know it may make the absorption of iron especially difficult.

Selenium is needed for the conversion of T4 to T3. IBDs deplete selenium (along with many other trace elements). Have you ever tried a selenium supplement? I wouldn't exceed more than about 50 mcg per day in the long run (400 mcg is the upper safe limit), but 100 mcg per day for a few days might tell you whether or not it can make a difference.

I wish I knew of a safe way to shock your immune system into resetting. It seems to be stuck in a rut.

Tex

Janie · Post by **Janie** » Mon Dec 12, 2016 4:12 pm

From a newbie, I will keep you in my prayers, Deb.

DebE13 · Post by **DebE13** » Mon Dec 12, 2016 5:23 pm

Thanks for all of the thoughts and suggestions. I am hoping it is not food related but the wondering continues.... nightshades? rice? and a list of other "good" foods that may or may not be it. The only was is trial and error and I haven't been to great about doing that after my whole thyroid ordeal. I can generally tell if a food disagrees with me and it's almost always immediate. There are a few things that I relate to an arthritis type feeling a few days later, so I'm still learning. Although there may certainly be something I'm eating that I shouldn't.

I do not take calcium. I haven't tried selenium but could definitely give it a try. I am determined to find out if I feel better with my free T3 in a higher range. I was last tested in November and it was 2.1 pg/mL with the range being: 2.1 pg/mL to 4.1 pg/mL. I simply asked my endo if I could up my dose since I continue to feel fatigued and read many thyroid patient benefit from having their meds adjusted in the winter months. I just wanted to try- as in if it didn't help, I would go back to my standard dose. What could that possibly hurt? I was thrilled with the endo because he agreed with the switch to Tirosint which took almost all of my shoulder pain away and I've had less carpel tunnel flares. It was agonizing. (I'm hoping the entocort will prove to act the same way, although won't be in the least surprised if it doesn't).

I find it..... amusing... ridiculous... whatever the right word may be without using profanity, that I was encouraged to join the ThyCa support group and I read over and over of other people's success yet when I ask to try the same methods that have been the "Oh my God" moment that changed other people's lives, I get a flat out rejection. I'm not necessarily the sharpest tool in the shed but it's pretty easy to pick out my free T3 is at the lowest end it could possibly be before being out of the range. Is my request really that far fetched? Rant over.

Ferritin- same thing. I was reading an article by Dr. Nikolas Hedberg who stated how symptoms can set it at levels below 50. Mine was at 13 a few years ago and is now at 25 after about a year and a half of supplementation. He goes on to state that thyroid function may not be optimal until levels reach 90. Yes, the range is 15-150 but again, it seems like a good subject to look into.

I'd like to get those two areas improved before I turn my sights back on food. Hopefully he will agree. If you look up at the sky tomorrow around 3pm and see a big mushroom cloud over towards WI- you'll know it's just me having a melt down.

Post by **tex** » Mon Dec 12, 2016 7:00 pm

Deb,

I agree that your minimal T3 level is a big part of the reason for your lack of energy. That's why I suggested the selenium, in case low selenium is the reason why you're not getting a good conversion rate. But if that doesn't make a difference, then your thyroid medication should be adjusted to resolve it. No one does well when their test results are at the lower limit of the range.

Good luck tomorrow.

Tex

DebE13 · Post by **DebE13** » Wed Dec 14, 2016 9:25 am

I think I will try the selenium- couldn't hurt.

Had a great visit!! Although I've been excited before. I came prepared with my ipad loaded with my lab result history and an article about ferritin/thyroid (more for my own reference to stay on task with reference ranges). He didn't offer NDT but said absolutely to increasing my T3 meds from 10 to 15 mcg/day with a check back in two months. We're also squeezing in more iron and if that doesnt help my numbers increase more, then we may talk about iron infusions. This doctor comes from the Philippines and has roots in tern and western medicines so he isnt just about throwing pills at you and calling it good. He made it clear that that we are operating out of the guidelines and mentioned not suing him in the future which I found humorous but would suspect that is why I am having such a difficult time finding someone to treat based on symptoms since my numbers are so "good." He found so issues with my request to simply try it out and see what I feel like with my free T3 numbers in the upper end of thier normal. I am curious if adding the extra 5mcg will change my TSH or not. Hopefully, it won't.

It does make me sligtly apprehensive because he isnt and endo so this isnt his area. Internal medicine is his area and he did make it clear that adjusting meds can have serious consequences but I already know that and I would guess he was trying to find out my motivations. We discussed my past three endos and he did comment that in this region of WI is is very unusal for doctors to prescribe the T4/T3 combination therapy. Tell me about it! It is really a shame.

He was also familiar with LDN and will take that overr too. I was cautioned that if my endo finds out he is now dispensing my thyroid meds I may be dropped. I would fully expect that but hopefully things will improve and I will make my switch. I will need to figure out how to handle my annual cancer check but my new doc said he can order the ultrasound and if anything shows up on it he can recommend another endo or I can choose whoever I'd like and he will work with him.

All I know is I've lost enough time so I just need to keep moving forward. It's now a 20-25 min drive instead of just up the hill from my house but will be well worth the time and effort if i can get the spring back in my step. Fingers crossed.

He did say to take 10 mcg in the morning and 5 mcg in the early afternoon but I'm wondering if two afternoon doses would be better. I seem to tank out around 2pm.

brandy · Post by **brandy** » Wed Dec 14, 2016 11:11 am

Post by **tex** » Wed Dec 14, 2016 12:32 pm

Great. It appears that you have finally found a doctor who listens and is willing to help.

That's what most of us are searching for. Good for you.

Tex

DebE13 · Post by **DebE13** » Wed Dec 14, 2016 12:41 pm

It helps having support here. Reading all the positive outcomes makes me determined to keep trying. If others find a way then why not me too? Apparently I've chosen the long, meandering path back to health, haha. I'm just incredibly thankful to have people who share their ups and downs. It at least gives me a roadmap to follow.