OK gang here I am 4 months later back for more advice. Sorry I haven't been keeping up with what's going on here but have been in "fairly" good shape with entocort 3 mg X3 all first thing in AM. About a week ago my script had to be renewed and all of a sudden I found myself taking some kind of pink capsule instead of the familiar grey and brown Entocort. Found out it's generic Budesonide. I'm having side effects that are almost as bad as before Entocort. Cramping, lots of gut noise etc but fortunately still no WD. I read on a Crohns site others had problems with generic similar to this.
On another topic the arthritis pains are still there. Taking one Ultram a day and 6 to 8 XS Tylenol (generic Walgreens brand because they seem to work better for me than the real stuff). My Internal Med doc set me up to see a Rheumatologist to talk about whether I should stay on the Humira I've been on for about 8 mos now or go back to the Enbrel I'd been on for about 6 yrs for my psoriasis. I seemed to have less joint pain with the Enbrel but that could have been due to taking the Celebrex daily (which is what the GI doc says caused the Collagenous Colitis I have now!.....just in case y'all forgot who I was :-).
Hope everyone here is as well as possible....thanks in advance for any advice.
I'm in the FL panhandle in case y'all forgot.....guess I know what I'll be doing this weekend.....getting ready for TS Isaac!
Phil
4 mos later.....
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Phil,
The generic budesonide has different inactive ingredients than Entocort EC and they are probably causing your GI symptoms.
I agree with Zizzle. The gluten in your diet is almost surely the cause of your arthritis, and very likely the psoriasis, also. At one time, (about 10 years ago), I had arthritis pain and stiffness so bad that I often had to use a cane to walk, and the joints of some of my fingers were swollen and extremely painful, and they were growing crooked and twisted. All that stopped after I adopted the diet and my gut healed. I haven't had any need for a cane since then, and even though my fingers didn't straighten back out (of course), I have no joint pain.
Good luck with your treatment and with the storm.
Tex
The generic budesonide has different inactive ingredients than Entocort EC and they are probably causing your GI symptoms.
I agree with Zizzle. The gluten in your diet is almost surely the cause of your arthritis, and very likely the psoriasis, also. At one time, (about 10 years ago), I had arthritis pain and stiffness so bad that I often had to use a cane to walk, and the joints of some of my fingers were swollen and extremely painful, and they were growing crooked and twisted. All that stopped after I adopted the diet and my gut healed. I haven't had any need for a cane since then, and even though my fingers didn't straighten back out (of course), I have no joint pain.
Good luck with your treatment and with the storm.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Dear Phil,
Sorry the generic seems not to so good. Do you know if the pill is exactly the same composition as Entocort or if there is some ingredient in it that you could react to? I am no expert, but Humira as well as Budesonide should be a pretty potent.
Best wishes, Ant
Edit: Just seen Tex's response which posted just before me, which answers my question.
Sorry the generic seems not to so good. Do you know if the pill is exactly the same composition as Entocort or if there is some ingredient in it that you could react to? I am no expert, but Humira as well as Budesonide should be a pretty potent.
Best wishes, Ant
Edit: Just seen Tex's response which posted just before me, which answers my question.
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"Softly, softly catchee monkey".....
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Joefnh
- Rockhopper Penguin
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Hi Phil I would check on the inactive ingredients to see if they are different than the brand name. They are supposed to be the same, but it does sound suspicious.
Gluten is certainty an issue for all autoimmune diseases like arthritis and psoriasis.
I also deal with MC (CC) and have Crohns and was recently diagnosed with Anklyosing spondylitis in my lower back. With these diagnosis they are considering switching me from Imuran to Humira, so I'm very interested to hear about your experiences with Humira or Enbrel.
I hope you feel better soon and that the storms are not too bad
BTW you may want to see if soy or dairy is bothering you as well, many of us react to soy ingredients and given your reaction to the generic Entocort I would be suspicious of dairy. For some reason many many meds have dairy components in them.
Take care
Gluten is certainty an issue for all autoimmune diseases like arthritis and psoriasis.
I also deal with MC (CC) and have Crohns and was recently diagnosed with Anklyosing spondylitis in my lower back. With these diagnosis they are considering switching me from Imuran to Humira, so I'm very interested to hear about your experiences with Humira or Enbrel.
I hope you feel better soon and that the storms are not too bad
BTW you may want to see if soy or dairy is bothering you as well, many of us react to soy ingredients and given your reaction to the generic Entocort I would be suspicious of dairy. For some reason many many meds have dairy components in them.
Take care
Joe
To add to Joe's post, there are currently two brands of generic budesonide sold in this country. One is manufactured by the maker of Entocort EC, and it is claimed to have ingredients identical to Entocort EC. The other brand has different inactive ingredients. Check the manufacturer listed on your pill bottle. If the manufacturer is AstraZeneca, the ingredients should be identical. If any other manufacturer is listed, the inactive ingredients are different.
Tex
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Phil,
I was wondering how you are doing so it is nice you popped up.
I took the pink generic budesonide for 4.5 months. I have the bottle but I flat out can't see a mfg on it. I'm almost certain I got an astra zeneca insert but I'm not for sure.
I had pretty significant gurgling and cramping b/f going on budesonide, had non stop gurgling while on budesonide and a little bit of cramping, and had gurgling for 4 mths after getting off of budesonide. It has just been the last 8 weeks that I've had minimal gurgling.
Gurgling/cramping can be a significant part of this disease.
Have you started any diet changes? My preexisting 15 years of arthritis disappeared after going GF.
Regards, Brandy
I was wondering how you are doing so it is nice you popped up.
I took the pink generic budesonide for 4.5 months. I have the bottle but I flat out can't see a mfg on it. I'm almost certain I got an astra zeneca insert but I'm not for sure.
I had pretty significant gurgling and cramping b/f going on budesonide, had non stop gurgling while on budesonide and a little bit of cramping, and had gurgling for 4 mths after getting off of budesonide. It has just been the last 8 weeks that I've had minimal gurgling.
Gurgling/cramping can be a significant part of this disease.
Have you started any diet changes? My preexisting 15 years of arthritis disappeared after going GF.
Regards, Brandy
I really like this forum.....can always count on y'all to reply when I'm searching for answers so thanks to everyone!
I have another interesting tidbit to update. The nurse at the doc's office who prescribed the Entocort for me told me yesterday that when she called the pharmacy to find out more info, they told her I'd been on generic all along. I knew the pills looked different so had to have an explanation. I also knew the pills they had been dispensing were marked with the brand name Entocort EC (Enteric Coated?....I've heard these dissolve in the intestine vs in the stomach and therefore cause fewer side effects) and the size 3 mg. I thought I had also heard that a generic cannot have the original licensee's name on the pill. I think that would be a patent infringement and there would be lawsuits. Anyway after getting some samples from my doctor of the brand name Entocort (Astra Zeneca) I decided to stop by and chat with the pharmacist. I waited to open the bottle on purpose in front of her and showed her the brown/grey cap with the name on it and told her this is the exact capsule they had been dispensing to me so there's no way it could have been generic and mentioned the issue of not marking with brand name for generics. She educated me and said Astra Zeneca actually makes their own generic and they are allowed to put it in the same capsule as the brand name since they are the Original licensee. I never knew that but I guess it makes sense for the original licensee.....they might as well compete with the generics and that way can still make money on the formula even if it's generic. I would think it would be the same inactive ingredients as the original but who knows. I had thrown away the old bottles so wasn't able to verify it but will take the pharmacist's word for it. She also assured me from here on out they would order the generic Astra Zeneca special for me.
As for the diet, I still haven't changed anything. I'm going to discuss it with the Rheumatologist and see what she says about it.
The Enbrel was a Godsend to me for the psoriasis as I'd spent years (since 1981) smearing topical creams on my lesions and although they helped, the Enbrel was the only thing that had caused almost total remission. Only reason I switched to the Humira was to see if it would help the arthritis more and my doc thought that would be less stressful since the injection is administered every other week vs every week with the Enbrel. The Enbrel I was using was a preloaded hypodermic and the Humira is the autoinjector so if you are needle phobic I guess the auto-injector is better. I used to be needle phobic but after I saw what the Enbrel could do for me (and it worked very quickly for me.....only about 3 wks if I remember correctly) the shot didn't really bother me.
BTW I'm also taking the glucosmine/chondroitin with hyaluronic acid daily and have been for about 5 yrs now. I'm a believer in supplementation and have received some relief from that one but it's not working as well as it was when I was also taking the Celebrex (but according to my GI doc that's the culprit that caused my collagenous colitis). So I guess I'm still hanging onto the hope that if I can stay off the Celebrex (and I have been for over 3 months now) and other NSAIDs, maybe the CC won't come back on me when I stop taking the Entocort. Another thing I saw somewhere was something about the Entocort was supposed to be for 8 weeks maximum. Anyone have an opinion on that? I'd hate to trigger some other malady from taking the Entocort too long!
Thanks again to all and best wishes!
Phil
I have another interesting tidbit to update. The nurse at the doc's office who prescribed the Entocort for me told me yesterday that when she called the pharmacy to find out more info, they told her I'd been on generic all along. I knew the pills looked different so had to have an explanation. I also knew the pills they had been dispensing were marked with the brand name Entocort EC (Enteric Coated?....I've heard these dissolve in the intestine vs in the stomach and therefore cause fewer side effects) and the size 3 mg. I thought I had also heard that a generic cannot have the original licensee's name on the pill. I think that would be a patent infringement and there would be lawsuits. Anyway after getting some samples from my doctor of the brand name Entocort (Astra Zeneca) I decided to stop by and chat with the pharmacist. I waited to open the bottle on purpose in front of her and showed her the brown/grey cap with the name on it and told her this is the exact capsule they had been dispensing to me so there's no way it could have been generic and mentioned the issue of not marking with brand name for generics. She educated me and said Astra Zeneca actually makes their own generic and they are allowed to put it in the same capsule as the brand name since they are the Original licensee. I never knew that but I guess it makes sense for the original licensee.....they might as well compete with the generics and that way can still make money on the formula even if it's generic. I would think it would be the same inactive ingredients as the original but who knows. I had thrown away the old bottles so wasn't able to verify it but will take the pharmacist's word for it. She also assured me from here on out they would order the generic Astra Zeneca special for me.
As for the diet, I still haven't changed anything. I'm going to discuss it with the Rheumatologist and see what she says about it.
The Enbrel was a Godsend to me for the psoriasis as I'd spent years (since 1981) smearing topical creams on my lesions and although they helped, the Enbrel was the only thing that had caused almost total remission. Only reason I switched to the Humira was to see if it would help the arthritis more and my doc thought that would be less stressful since the injection is administered every other week vs every week with the Enbrel. The Enbrel I was using was a preloaded hypodermic and the Humira is the autoinjector so if you are needle phobic I guess the auto-injector is better. I used to be needle phobic but after I saw what the Enbrel could do for me (and it worked very quickly for me.....only about 3 wks if I remember correctly) the shot didn't really bother me.
BTW I'm also taking the glucosmine/chondroitin with hyaluronic acid daily and have been for about 5 yrs now. I'm a believer in supplementation and have received some relief from that one but it's not working as well as it was when I was also taking the Celebrex (but according to my GI doc that's the culprit that caused my collagenous colitis). So I guess I'm still hanging onto the hope that if I can stay off the Celebrex (and I have been for over 3 months now) and other NSAIDs, maybe the CC won't come back on me when I stop taking the Entocort. Another thing I saw somewhere was something about the Entocort was supposed to be for 8 weeks maximum. Anyone have an opinion on that? I'd hate to trigger some other malady from taking the Entocort too long!
Thanks again to all and best wishes!
Phil
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Christine.
- Gentoo Penguin
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Phil
I know changing your diet can be daunting but it has been nothing short of a miracle to find that when I went gluten free to control my mc, lo and behold the psoriasis lesions disappeared. My friends and my daughter are amazed since no one remembers me without my elbows, knees and feet covered with red scales. I would much rather give up the bread and not take heavy duty drugs. Try it for 2 or 3 weeks......I will bet you will see improvement in your psoriasis (and hopefully your mc)
Christine
I know changing your diet can be daunting but it has been nothing short of a miracle to find that when I went gluten free to control my mc, lo and behold the psoriasis lesions disappeared. My friends and my daughter are amazed since no one remembers me without my elbows, knees and feet covered with red scales. I would much rather give up the bread and not take heavy duty drugs. Try it for 2 or 3 weeks......I will bet you will see improvement in your psoriasis (and hopefully your mc)
Christine
Hi Christine and thanks for your reply
My psoriasis was in almost complete remission with the Enbrel for about 6 yrs. My dernmatologist who has been treating that condition for almost 25 yrs changed me to Humira just before I started with the CC symptoms but I was also taking Levaquin for sinus infection along with prednisone and attributed the WD to the antibiotic. After 6 months of WD a GI doc finally did the colonoscopy which resulted in the CC diagnosis. I still can't help but blame the Levaquin 10 day course for the initial outbreak which never seemed to go away until I got on the daily Entocort which I've been on for a little over 4 months now. My fear is on my next visit the GI doc is going to wean me off the Entocort and it will all come back again. The psoriasis is still in complete remission with the Humira but I'm wondering if the Humira may have had something to do with the CC onset too so am going to see a rheumatologist for advice on that in a couple of weeks. Maybe they can advise whether the combination of the Humira, Levaquin and the steroid caused something to go haywire? Right now I'm just grasping for answers and hoping I don't also have dietary changes required on top of everything else.
Thanks again,
Phil
My psoriasis was in almost complete remission with the Enbrel for about 6 yrs. My dernmatologist who has been treating that condition for almost 25 yrs changed me to Humira just before I started with the CC symptoms but I was also taking Levaquin for sinus infection along with prednisone and attributed the WD to the antibiotic. After 6 months of WD a GI doc finally did the colonoscopy which resulted in the CC diagnosis. I still can't help but blame the Levaquin 10 day course for the initial outbreak which never seemed to go away until I got on the daily Entocort which I've been on for a little over 4 months now. My fear is on my next visit the GI doc is going to wean me off the Entocort and it will all come back again. The psoriasis is still in complete remission with the Humira but I'm wondering if the Humira may have had something to do with the CC onset too so am going to see a rheumatologist for advice on that in a couple of weeks. Maybe they can advise whether the combination of the Humira, Levaquin and the steroid caused something to go haywire? Right now I'm just grasping for answers and hoping I don't also have dietary changes required on top of everything else.
Thanks again,
Phil
Phil, sometimes I've found that the dietary changes can be the easiest and simplest. Trying to juggle a bunch of drugs with their associated side effects is a lot more complicated for me, anyways. Many (most?) here have found their MC symptoms to return when weaning off Entocort if they haven't eliminated their food intolerances. I started getting arthritis in my 40's and tried all the remedies (glucosamine, fish oil, etc). I am now, for the most part, pain free, which I believe is due to my elimination of gluten. I've always wanted to get to the source of my issues. It seemed to me that many medications just treated the symptoms without eliminating the problem. Just my opinion. Deb
Phil,
I do hope you talk to your rheumatologist with an open mind about diet changes. My rheumatologist said he has many patients who have improved dramatically on gluten free diets, but he didn't offer up that information until I asked specifically about it. You see, your docs are making a small fortune off you. If they claim ignorance about diet, in spite of the growing mountain of evidence supporting a GF diet, I'd venture to call that malpractice. The GF diet is not that difficult. Options abound nowadays. Just commit to try it for 2 weeks to start and see how you feel.
You are on very potent medications with potentially severe long-term (or short term) consequences. Imagine no more weekly trips to the doc for injections? No more copays? No more health risks from immune supression? No more pain?
I hate that we have to seem so pushy about the diet. It's just that people here recognize what a clear-cut case you are of needing to be gluten free. So many like you have done this with amazing success. You seem very motivated to get better. After all, you see your doctors all the time, you seek advice, you know the current situation is not working. What do you have to lose besides junk food? It's a small price to pay to get your health, time and life back.
I do hope you talk to your rheumatologist with an open mind about diet changes. My rheumatologist said he has many patients who have improved dramatically on gluten free diets, but he didn't offer up that information until I asked specifically about it. You see, your docs are making a small fortune off you. If they claim ignorance about diet, in spite of the growing mountain of evidence supporting a GF diet, I'd venture to call that malpractice. The GF diet is not that difficult. Options abound nowadays. Just commit to try it for 2 weeks to start and see how you feel.
You are on very potent medications with potentially severe long-term (or short term) consequences. Imagine no more weekly trips to the doc for injections? No more copays? No more health risks from immune supression? No more pain?
I hate that we have to seem so pushy about the diet. It's just that people here recognize what a clear-cut case you are of needing to be gluten free. So many like you have done this with amazing success. You seem very motivated to get better. After all, you see your doctors all the time, you seek advice, you know the current situation is not working. What do you have to lose besides junk food? It's a small price to pay to get your health, time and life back.
Hi Phil,
Add me to the list of people whose docs pushed for me to take these drugs to control my arthritic pain and GI symptoms. I am told I have psoriatic arthritis without the skin troubles - yet. My docs now fully support my diet changes and tell me I do more to keep myself healthy than any medicine. They all tell me I am a model patient.
It takes some effort to figure this out, and I still have some GI issues and some pain, but I am MUCH better than I was just a few months ago, and everyone here will give you all the help and support you need.
I, like others, urge you to give it a try.
Kathy
Add me to the list of people whose docs pushed for me to take these drugs to control my arthritic pain and GI symptoms. I am told I have psoriatic arthritis without the skin troubles - yet. My docs now fully support my diet changes and tell me I do more to keep myself healthy than any medicine. They all tell me I am a model patient.
It takes some effort to figure this out, and I still have some GI issues and some pain, but I am MUCH better than I was just a few months ago, and everyone here will give you all the help and support you need.
I, like others, urge you to give it a try.
Kathy
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mzh
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Phil, you asked if anyone has been on Entocort longer than 8 weeks. Yes. I've been on it for 7 years. Interestingly, my cortisone level is in the normal range. It's almost on the low side. One would expect the exact opposite. Knowing this, I'm not nervous about taking it long term. It's expensive though.
I'm also gluten-free and that helps, especially with the aches and pains.
I'm also gluten-free and that helps, especially with the aches and pains.
Also have sleep apnea