More health issues caused by Entocort & Pentasa

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Savannah's mom

Savannah's mom

Joined
Aug 9, 2011
Messages
51
Location
Lake Jackson, TX
Hi everyone! Savannah as been doing exceptionally well the last few months besides some mild symptoms the occasional tummy ache, fatigue, headaches, some weight loss, weak, cold, not sleeping well, there is probably more things she has complained about.
We went to see her GI back in June and decided since she has been doing so well not to do the colonoscopy and endoscopy depending on blood and stool samples.. Her calprotectin was just slightly elevated but way better than her past results. But, her labs came back abnormal, these labs have always been normal in the past.
Her thyroid level is normal but the TSH is high which indicates Hypothyroid and she is no longer producing her own Cortisol these numbers are worrisome and we need to repeat the blood work, says Dr J. So, we did July 19th.. I heard from the nurse yesterday Dr. J is on vacation. The labs came back the same so now we are to see an Endocrinologist. Which I assume will prescribe more meds..
IBD is vicious!! I am so mad and worried!! Every visit we went I expressed my concerns about all the medications Savannah has been on for the last 2 years.. Only to be told the meds are safe I would ask about Savannah being tired al the time coming home from school taking naps almost everyday! Dr J would tell me she has no outwards signs of steroids so I am sure she is ok.. But I don't think he tested her cortisol until June. And there are people that have been on Pentesa for years with no problems... and I go look at Savannah's chart and she has a new diagnosis that has not been discussed with me at all Proteinuria, Not going to get upset about this until I talk to her doctor on Monday.
I really want her off all the meds and if IBD symtoms return start treating the symptoms again her doctor is worried about what may happen with her IBD, I am now worried about the medicines they seem to be causing more damage.. Maybe not to her tummy but the rest of her body is going crazy.

I wish there was one tab that covered Vent, Angry, and Worried.
I have not updated her meds down below but he did agree to reduce her Entocort from 3 a day to 2.
Really looking for advice any advice on what to do, what questions to ask, what to be most concerned with.. Thank you in advance!!!!
 
Hugs
Unfortunately once you have one autoimmune disease ( Ibd)
More tend to follow regardless of meds.
If she has hashimitos thyroiditus it is life long.
Pentasa ( which is very mild btw) does not affect the thyroid.
Pentasa basically is an aspirin like creme that affects the top surface of the intestine.

I would really wait to talk to the doctor.
Going off all meds and waiting for symptoms to show on the surface is not really a good plan.
Since inflammation can simmer causing damage ( which can not be fixed but only removed) for a very long time without causing any symptoms on the outside.

I know a new dx is hard and stinks.
If your child is feeling so poorly maybe the pentasa wasn't enough .
I am not sure how long she was entocort .
But it is similar to pred just less is absorbed systemically.
 
Savannah has been on Entocort since September of 2011(almost 2 years) 9mg a day until last week when the doc agreed to lower to 2 because of the Cortisol results and because she hasn't had any flairs for a bit.
I am not taking Savannah off any medications without her doctors approval :) just venting!
 
Wow that is a long time for entocort .
Why not a true maintence meds like Imuran or 6-mp since pentasa wasn't enough alone?
Even pred losses effectiveness after long periods.
Have you gotten a second opinion?
If not it does t hurt or even mean you are leaving your current Gi
Just that you need a second set of eyes who is fresh.
You can't have both ulcerative colitis and crohn's by the way ( which is the first flag)
It is one or the other .
You can have crohn's colitis which means the crohn's is located primarily in the large intestine or colon.
Have you been seen at Texas children's ?
We have taken my son for 2 second opinions
Still with our first Gi - just when kids are not textbook it helps alot.

Good luck
 
Savannah's doc is at Texas Chidrens.. What Dr. J said was Savannah has IBD in the early stages we will be treating her for Crohn's and Ulcerative Colitis. She has inflammation from her stomach down into her Duodenal and all thru the part of the colon they could get to because of spasms they could not complete the colonoscopy to dangerous(even at our last appointment he said her spasms were impressive and he will never forget them another reason not to complete another colonoscopy). When they did the upper gi with that contrast stuff they could see thickening into the cecum and some other parts.
We have been talking about taking her over to Memorial Herman's Childrens GI clinic. We may do that just to get a second opinion and maybe get her off some of these meds.
 
In that case you need to go get a second opinion from somewhere they see the out of the ordinary regularly like Boston children , chop, or Cincy
They are the top three in the country for kids

You don't go to a smaller place for a second opinon .
At least we would not worth the effort .
 
Unfortunately we do not have the luxury of traveling for medical care. So, Tx Childrens and Memorial Herman are our only choices. Marni's Mom uses Memorial Herman I am going to talk to her some more about taking Savannah over there.
So, Hypothyroidism or the hashimitos is or could be another immune disorder? so, nothing to do with meds she has been on just her immune system acting up some where else?

Savannah's first abnormal labs were a little later in the day but before the doc reorder the test he said even for it being later in the day her Coritsol should not have been that low. So when we took her in for labs for the second test it was first thing in the am.. Same results. I have ordered copies of all the lab work but I won't have them until next Friday..
 
Entocort is still a steriod and for some has caused adrenal issues and osteoporosis .
The studies were done at 9 mg max a day for 8 weeks and then only 6 mg to be used for maintence .

Every med has risks this one just has different risks.
Please talk to your doctor about your concerns.
 
To clarify, was the cortisol drawn before taking the a.m. budesonide? (If not, I would question the value of the test).

Assuming the blood test was before the a.m. dose, it would suggest that enough entocort is being absorbed into the bloodstream and suppressing her ACTH (the hormone which stimulates cortisol production) and her endogenous (own) cortisol production. This is what happens when people are on prednisone. How old and big (weight) is she? Has she been growing?
 
Hashimitos ( hypothyroidism) are one in the same.
It is an auto immune disorder.
The thyroid becomes enlarged because it is working so hard but doesn't have enough thyroxine .
So the doc will have you see an endo .
Simple blood test at first then yearly blood draws once she has stable levels.
One small pill a day.
It can effect energy
Thinking
Gi tract ( motility - constipation)
Your heart etc...
It is good they caught it early .
 
I had to go ask her dad he said he is pretty sure she had her morning meds before her blood was drawn. And she is still slowing growing taller but losing weight she is down to 88lbs. Savannah just turned 11 in June.
 
Yes I am glad they caught it early.. Monday Dr J will be sending over a referral to the Endocrinologist the nurse that I talked to Friday said he may take a few days for them to call to set up an appt but she used to work over there and said they will look thru all of Savannah's medical record an see who is best qualified to treat Savannah assign the doc then call me with an appt. but by Friday we should have an appt. Savannah has some of the symptoms Of the Hashimoto's but they are some of the same symptoms she had for years..So I guess the are general immune disorder symptoms... WoW wonder what else my baby is going to have to endure?? You know, she was born 17 weeks early 1lb 4oz 11 inches long.. She is blind in her left eye because of being premature and by the time she was 5 she started having tummy issues..
 
I am so sorry to hear that your lass is having issues with her meds. :ghug:

Unfortunately Budesonide, whilst having less side effects than Prednisone in what would be deemed a normal course, 3 months, it doesn't mean it is immune from the same side effects Prednisone has particularly when used long term. I don't know why your GI has taken this path but it would not be deemed a normal one. Is there something peculiar to your case that he chose a long term steroid?

As mlp has said, the normal mode is to use steroids short term as a way of gaining remission and then move you onto what is often referred to as a 'steroid sparing' treatment for the longer term.

Dusty. xxx
 
Long term steroid use doesn't seem to be a 'normal' course of treatment, however, perhaps it is used in certain circumstances??? FWIW, my aunt has used low dose steroid (5mg) together with imuran for many, many years. However, she was diagnosed in her 50s, so much different than a child.
 
Poor statural growth could be due to hypothyroidism, excess corticosteroids (entocort) or Crohn's inflammation or a combination of these. It's hard to know what's up in Savannah's case. The higher the TSH, the more significant the hypothyroidism is and the more likely that would cause poor growth. (What was the TSH?) Similarly, the higher steroid dose, the bigger effect on growth-- of note, you said she doesn't have "outward" signs, which makes me think the steroid effect is not that large.

Weight loss is not at all characteristic of steroid excess or hypothyroidism; these conditions cause weight gain. Unless there is another problem, any weight loss would suggest an issue with the Crohn's.

Fatigue can occur with hypothyroidism but also with Crohn's.

Sleep is increased in hypothyroidism.

Hashimotos is very common and easily treated as long as one remembers to take the thyroid medication replacement.

What proteinuria are you referring to? Depending on the amount, it may be benign and/or transient (from exercise or "orthostatic"). If a dipsick urine shows protein, a 24 hour urine collection may be obtained to quantitate the protein. Sometimes a first morning urine for protein and creatine are checked.
TRANSIENT PROTEINURIA
Transient (functional) proteinuria is temporary and clears when the inciting factor remits or is removed. Transient proteinuria can occur with fever, exercise, stress, or cold exposure.17,23,24 It may also be caused by hemodynamic alterations in glomerular blood flow.

ORTHOSTATIC PROTEINURIA
Orthostatic proteinuria is not uncommon in children, particularly during adolescence. The diagnosis is suggested with normal protein excretion (i.e., negative dipstick test result or UPr/Cr of 0.2 or less) in a spot, first-morning urine sample after the child has been supine for the entire night, but increased protein excretion (i.e., positive dipstick test result or UPr/Cr greater than 0.2) at least four to six hours after the child has been upright.25 The cause of orthostatic proteinuria is not clear; however, the anatomic compression of the left renal vein has been suggested.26 Long-term studies with follow-up ranging from 20 to 50 years have demonstrated a benign course.27,28
Click to expand...

(((HUGS)))) It is difficult to be given a bunch of abnormal labs without a lot of information.
 
Oh lets see.. When Dr J first put Savannah on Entocort I think it was suppose to be temporary. Savannah was 9 and only weighed 50lbs there was pretty good improvement in her weight almost right away.. With in a couple of months she was not only eating for the first time in years but was actually trying new things but would still from time to time have flairs. So, the doc wouldn't change anything, well, he would say she is doing good but still having some issues so let's keep her on the meds for a few more months. The few more months would roll around and we would have a flair so the meds would stay. The last 6 months or so she really hasn't had any issues. So now he has starting weaning her off the Entocort. Between her Cortisol results and her not really having any issues it is time. We will see how this goes she did come to me the other day with stomach pain but it didn't last and the only other thing is she isn't really eating again. We will be at 6mg for a month if all goes well if not I am going to push for another maintenance drug and not go back up to 9mg of the Entocort.
He never once mentioned the proteinuria to me when we leave our checkups he get a print out of our next appointment and it has a diagnosis area and it is listed in there. She has urine test just about every time we go because of the Pentasa. In April I called an checked out the urine test to see if she had an infection because sometimes Savannah can not pee she will set in the bathroom for 20 minutes trying to pee. All they told me was she has no infection. When the doc calls me Monday I am going to address this again. I didn't release until a few days ago Savannah was still having this issue. Savannah quit talking to me about how she feels unless it is really bad. I think because every time she does there are more test.
 
Poor Savannah. Grace is starting to get the same way with not telling me things and she's four.

Have you notice if the urine problems happen during flares?
 
No, her tummy is well for the most part I assume anyways besides the weight loss complaints are rare.. The pee thing I am not real sure about she doesn't talk to me I only know it is continuing because I needed to go and we only have 1 bathroom and I had to ask her if she was constipated and she told me she couldn't pee. So, when I asked her about it she said there are times she just can't pee no pain or burning it just won't come out. We first learned about this in April. I didn't release it was a continuing problem. Then I seen the proteinuria and looked that up. and it has to do with kidneys she is not diabetic and her blood pressure is always closer to being to low than to high so I don't know.. It does have immune system disorders as another cause for this proteinuria also.
 
It's a shame when YOU are the one connecting the dots and the doctors.


I hope you get answers.
HUGS
 
Hello, I have a little update. I took Savannah to see another doctor Friday for a second opinion on her meds. He was not shocked to hear Savannah has been on Entocort for nearly 2 years he said in adults Entocort is considered a maintenance drug by some doctors. He said to wean her off the Nexium and Meloxicam she should be off both of those by Sept. 1st. Sept 4th she is scheduled for an endoscopy and colonoscopy so we can see how she is truly doing. If further meds are needed he would like to use the 6MP and Pentasa as her maintenance drugs. I am also praying that he will be able to complete this colonoscopy Dr J was not able to because of severe spasms he was worried he would damage Savannah's colon.
The new doc also already put in a referral for Savannah to see the Endocrinologist since Savannah doc at Texas Childrens forgot!!! YEAH Forgot!!!
He also ordered some more urine test to make sure all is normal, he did say that it is rare but some kids with IBD are more prone to Kidney stones that the average kid. I hope this is not the case.

Looking up already!
 
Thanks for the update Savannah's mom. :)

Sounds like the second opinion was well worth it! Yay for clear directions and progress! :dusty:

I hope you continue to get the answers you need and Savannah finds long and lasting relief, bless her. :heart:

Yes, unfortunately there can be increased for kidney stones due to absorption issues in the small bowel. My own kids for example are more prone to uric acid stones as they have had an ileocaecal resection and the distal portion of the ileum is where uric acid is reabsorbed back out of the body and into the bowel so it can be excreted. A build up of uric acid in the blood can lead to kidney stones and/or gout. Even without surgery scar tissue in the ileum or chronic inflammation can have the same effect.

Dusty. xxx
 
Glad the appointment went well, hope things get better and they manage to do the colonoscopy this time. Can't believe the other doc forgot to make the appointment!
 
Thank you for the info DustyKat and all the support from everyone. This is truly and awesome group!
The info about the ileum is interesting now I am not as knowledgeable as I should be but if I am right they did a Upper GI xray series w barium so they could see the cecum and ileum and the Radiologist said it looks like there is some thickening that indicates Crohn's and her bowels are moving slower than we would like to see. So, she may have some issues in that area.
I did go look at a diagram of the intestines and the first Gi stopped the Colonoscopy at the Ascending colon, since getting some of the inflammation under control her IBS doesn't seem to bother her as much so with that said I am feeling good about the doctor being able to complete this colonoscopy.. My question is how far does the doc typically go with a colonoscopy?
 
Better late than never update... Decided to just add it to this tread.

Savannah is now completely off the Entocort(Budesonide) and doing well!! YAY!!

She had a colonoscopy/endoscopy Sept 4.. She had no visual signs of any active disease!!! Another YAY!!!! I'm not a doctor but when the NEW Gi showed us the pics even I could tell her intestines are much healthier and happier than they were before meds..
The biopsies came back with Cryptitis in the duodenum and colon so he is keeping her on the Pentesa( went up to 2000mg a day) but for now that is the only treatment she is on and so far so good.

Savannah's last Cortisol test were normal we go back the 23rd of November to have a more thorough test were they take different samples of blood over several hours...

Savannah's thyroid test are still abnormal but do not require treatment yet. TSH was in normal range but high. Her free T4 is in the normal range but low, and her thyroid antibodies are positive indicating inflammation in her thyroid, or thyroiditis. With the thyroiditis there is a chance she will actually become Hyperthyroid ( I was told before she was leaning towards hypo) and will require a supplement in the future. For now they will be doing labs every 4-6 weeks.

Savannah is still having headaches and she has thrown up a few random times very few complaints about ab pain her weight goes up and down but over all she is doing really well. Thankful she is off a lot of the medicines that she was on for the last 2+ years.
 

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