Thank you Tex and BearcatRx,
It's in the middle of the night here by me, and I cannot sleep because of the pain, so I went up and saw your messages. While trying to fall asleep, I kept wondering what may cause this awful pain. Since my theories don't hold water, there must be something I do or eat. I am GF and DF, no sugar, no additives, very little fiber. I take 5.000 i.u. of vitamin D3, magnesium spray and foot soaks, B12, B9 and B6, in addition to vitamin C and zink.
I came to think of the Lactocare (probiotics) I take, to prevent possible side effects from Diclocil. Could the probiotic contain things that can trigger this pain reaction? It says on the package that I should take 1 capsule two hours prior to taking Diclocil, which I do, and I take 4 Diclocil (500 mg each) capsules per day.
1 capsule contains:
Lactobacillus acidophilus: 1,2 billions
Bifidobacterium lactis: 1,2 billions
Lactobacillus paracasei: 0,4 billions
Lactobacillus rhamnosus: 0, 2 billions
in addition to corn fiber, fructooligosaccharides, hydroksypropyl metylcellulose and dye: titanoxid.
Maybe my immune system can't tolerate this much probiotics?
Lilja
CC and broadspectred antibiotics
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Lilja,
I'm sorry that the pain is preventing you from sleeping. It wouldn't be unusual for a probiotic product to cause digestive system upset or abdominal pain, but it would be very unusual for one to cause pain in the legs, hips, lower back, etc.
I am beginning to wonder if you might be unusually sensitive to Entocort (budesonide). A few members here have reported neurological side effects to budesonide after only a few days of use, and your symptoms are all neurological effects.
Tex
I'm sorry that the pain is preventing you from sleeping. It wouldn't be unusual for a probiotic product to cause digestive system upset or abdominal pain, but it would be very unusual for one to cause pain in the legs, hips, lower back, etc.
I am beginning to wonder if you might be unusually sensitive to Entocort (budesonide). A few members here have reported neurological side effects to budesonide after only a few days of use, and your symptoms are all neurological effects.
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 Lilja,
Brandy here, a former Entocort user.
Sorry you are suffering. I had a number of neurological side effects while I was on Entocort (4.5 months). Some of my symptoms it would be hard to identify if they were due to MC or due to Entocort. The vast majority went away two weeks after my last Entocort pill so I suspect I was susceptible to side effects. I was age 51 as reference at the time. During week 3 and week 4 of my Entocort usage (still on 3 tablets in a.m.) I had joint pain such that it was difficult to walk around the grocery store. I could barely walk from car to door then sat on the senior citizen bench while the boy friend shopped. (6 months prior I could walk 6 miles at a time.) I stayed on Entocort despite the side effects because I thought they would lessen at lower dose. The side effects lessened in a minor way but were still extremely problematic even at one pill every three days.
THIS IS PURE SPECULATION......perhaps you are "feeling" the side effects more now since your body is under extreme inflammation and stress? Again pure speculation.
I've also experienced joint pain on my MC journey from being gluttened or soyed (not on Entocort.) This was pretty severe as I could not bend my fingers to type for about 4 weeks. I suspect my pain was heightened at this time due to pretty severe work stress at the time.
How are your MC symptoms now?
Brandy
Brandy here, a former Entocort user.
Sorry you are suffering. I had a number of neurological side effects while I was on Entocort (4.5 months). Some of my symptoms it would be hard to identify if they were due to MC or due to Entocort. The vast majority went away two weeks after my last Entocort pill so I suspect I was susceptible to side effects. I was age 51 as reference at the time. During week 3 and week 4 of my Entocort usage (still on 3 tablets in a.m.) I had joint pain such that it was difficult to walk around the grocery store. I could barely walk from car to door then sat on the senior citizen bench while the boy friend shopped. (6 months prior I could walk 6 miles at a time.) I stayed on Entocort despite the side effects because I thought they would lessen at lower dose. The side effects lessened in a minor way but were still extremely problematic even at one pill every three days.
THIS IS PURE SPECULATION......perhaps you are "feeling" the side effects more now since your body is under extreme inflammation and stress? Again pure speculation.
I've also experienced joint pain on my MC journey from being gluttened or soyed (not on Entocort.) This was pretty severe as I could not bend my fingers to type for about 4 weeks. I suspect my pain was heightened at this time due to pretty severe work stress at the time.
How are your MC symptoms now?
Brandy
Hi Lilja,
Forgive me as I have not followed the science behind your discussion with Tex and BearcatRX.
I forgot to mention.....My neurological symptoms arose if I remember correctly about 4 days after starting the daily 9mg dose of Entocort. In retrospect I probably should not have been driving while taking the 9mg dose.
Re: probiotics.....I've had loose stools from them but never joint pain.
Brandy
Forgive me as I have not followed the science behind your discussion with Tex and BearcatRX.
I forgot to mention.....My neurological symptoms arose if I remember correctly about 4 days after starting the daily 9mg dose of Entocort. In retrospect I probably should not have been driving while taking the 9mg dose.
Re: probiotics.....I've had loose stools from them but never joint pain.
Brandy
Thank you for putting so much time and effort in trying to detect the reason.
The pain has not slipped the grip, but I have been thinking all night.
I remember the first time I had antibiotics, it was in 1973 and I had a throat infection. 14 days after the antibiotics my whole body was covered by a rash, that turned out to be psoriasis. The second time, a couple of years later, I had another throat infection (and I even remember the names of the two antibiotics I got this time). I got so ill, that I had to go to the hospital. My throat thickened, so I couldn't swallow and I had big black bruises on my legs. They kept surveying the bruises and counted my white blood platelets for four days.
After that, I waited almost 40 years before I dared to accept antibiotics again. My psoriasis has been there all these years, but it disappeared when I cut gluten and diary in 2013.
Maybe Diclocil belongs to the same "family" as the above mentioned antibiotics.
Fortunately, this coming Friday my antibiotic regimen is over, and at the same time I had planned (long before the antibiotics) to start tapering off the Entocort from 1 capsule a day to 1 every second day. It's a pitty that these two things occur at the same time, so I won't be able to tell what medication did the harm, but I will be happy to become pain free, which I'm sure I will. And the pain is neurological pain, of that I'm sure.
Thank you, Tex, Brandy and BearcatRx
Lilja
The pain has not slipped the grip, but I have been thinking all night.
I remember the first time I had antibiotics, it was in 1973 and I had a throat infection. 14 days after the antibiotics my whole body was covered by a rash, that turned out to be psoriasis. The second time, a couple of years later, I had another throat infection (and I even remember the names of the two antibiotics I got this time). I got so ill, that I had to go to the hospital. My throat thickened, so I couldn't swallow and I had big black bruises on my legs. They kept surveying the bruises and counted my white blood platelets for four days.
After that, I waited almost 40 years before I dared to accept antibiotics again. My psoriasis has been there all these years, but it disappeared when I cut gluten and diary in 2013.
Maybe Diclocil belongs to the same "family" as the above mentioned antibiotics.
Fortunately, this coming Friday my antibiotic regimen is over, and at the same time I had planned (long before the antibiotics) to start tapering off the Entocort from 1 capsule a day to 1 every second day. It's a pitty that these two things occur at the same time, so I won't be able to tell what medication did the harm, but I will be happy to become pain free, which I'm sure I will. And the pain is neurological pain, of that I'm sure.
Thank you, Tex, Brandy and BearcatRx
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
The board acts weird from my side of the world. It has worked so slowly both yesterday and tonight. Maybe there is some maintenance or upgrading work going on?
As to Brandy's question regarding my CC symptoms right now: I have one BM per day, not firm but not watery either, which is quite a difference from 20 visits to the toilet, incl several visits during nighttime. I haven't had the time & energy to reflect so much around my MC because of the S. aureus lump in my arm, the antibiotics and the pain.
Sorry for being so negative. I'm usually not
As to Brandy's question regarding my CC symptoms right now: I have one BM per day, not firm but not watery either, which is quite a difference from 20 visits to the toilet, incl several visits during nighttime. I haven't had the time & energy to reflect so much around my MC because of the S. aureus lump in my arm, the antibiotics and the pain.
Sorry for being so negative. I'm usually not
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013