Prednisone did not help

[dannysmom]

Hi - My name is Jeanne and my 13 yr old son, Danny, has been sick for nearly 2 years now. His symptoms are constant fatigue, constant abdominal pain, diarrhea typically 2 days a week (a few times a day). He also has some eye pressure & sees lots of floaters, joint pain (jaw, knees, ankles), occasional mouth sores and headaches. He has been on home instruction most of this time as he is too fatigued to attend school. Despite being seen by >20 doctors (of different areas of specialty), trying about a dozen medications (including prednisone), a few diets (including no dairy, no gluten, & SCD) - we still have not found any treatment to help.

His 'probable' diagnosis comes from a Promethius IBD panel that was positive for cBir-1 with a pattern consistent with Crohn's. The pathology on his scopes showed non-specific inflammation throughout his entire digestive tract that could be due to IBD, allergy, or infection. No lesions were visualized in the scopes. He had 2 pill cam studies. The first one showed that the camera pill remained in his stomach for the entire 8 hours. A follow up stomach-emptying test was normal. A second pillcam was placed endoscopically and noted a mostly normal small intestine with one area that could be a small early Crohn's lesion.

His GI works at a top university hospital and is very caring. He is humbled by Danny's condition and his ability to help. I really need a support group. I've hesitated to join a Crohn's group do to a questionable diagnosis ... but it is the only thing we have so far.

Questions:
- A one month Prednisone trial made my son's symptoms much worse. (Diarrhea more than 10x each day) I know most people have bad side effects with prednisone (Danny did too), but has prednisone made your Crohn's symptoms worse?

- We've noticed that when Danny catches a cold, his Crohn's-like symptoms get worse too. Has anybody else noticed this?Thanks

 

[Shannon]

I'm sorry to hear your son is going through this! But yes, his symptoms are very consistent with Crohn's. Pred did not make my diarrhea worse, and I personally haven't heard of it doing so to that degree (10x daily!?), but perhaps someone else might have some insight. As far as the cold goes, if Danny indeed has this autoimmune illness, any type of sickness can flare up the bowel issues, definitely. People with autoimmune have to take special precautions to avoid cold and flu season, especially, because the immune system is already compromised - everything is connected.

 

[DustyKat]

Hi Jeanne and :welcome:

I'm so sorry to hear your son is going through all this. What dose of Prednisone was your son prescribed? I can't answer your question about the Pred as my daughter has never been on it. Have a browse through the Undiagnosed Club........................

http://www.crohnsforum.com/showthread.php?t=13113

Unfortunately so many here have had similar stories to yours with long lead in periods before diagnosis. Most of the symptoms you describe are what Crohns sufferers have when flaring. My daughter had headaches, sore eyes, joint pain - knees but tended to constipation although it is more normal to have diarrhoea. Do you keep a diary? If not here is a link to the suggestions you might like to include in one. They are helpful in keeping track of symptoms because as you would know it easy to forget the finer points when you are dealing with this day in and day out..............................

http://www.crohnsforum.com/wiki/Diary-Inclusions

Keep pushing the docs until you get the answers you need. In our case my daughters test results kept coming back normal right up until she had emergency surgery so these days I take any result with a grain of salt if it doesn't match what I am seeing in front of me. If results are normal and she is well, good. If results are normal and she is symptomatic, fight the docs.

I am a great believer in trust and faith in your GI and he certainly sounds like he is doing what he can but do you think a second opinion might be worth a shot, you know, a set of fresh eyes maybe?

I hope you stay around because this is a great place for support and info and we would love to have you here. Oh and it doesn't matter whether you have a diagnosis or not! Good luck and welcome aboard! One more thing, where are you located? It's good to know this as others here may be able to provide good info on docs and hospitals near you.

Take care,
Dusty

 

[Astra]

Hi Jeanne (that's French for Joan!)
and welcome

I'm sorry poor Danny is suffering like this! What dosage of Pred was he on? Usually this is the first line of attack for any inflammation, so I'm surprised it made him worse.
If there's a possibility of infection, have they tried Metronidazole (Flagyl)?
Have they tried the immuno suppressants, Azathioprine or Mercaptupurine?
If none of these have worked, how about asking for a biologic, Remicade, Humira or Cimzia?
Poor Danny seems to have every sympton of Crohn's going! And it doesn't matter that there's no diagnosis yet, you're very welcome here with us! Any questions, fire away!
Once you get familiar with the forum, have a mooch thro the sections.
Lotsa luv
Joan xxx

 

[dannysmom]

Thanks for the all the quick replies. I'll try to answer all the questions.

Danny's prednisone dose was 30mg daily. He did this for 2 weeks - but since symptoms got much worse, we then started to taper down for another few weeks. He has tried Pentasa (2000mg daily) for 6 months but no real noticeable improvement. He has also recenlty been on a cipro/flagyl combination for 2 months. It seemed to help the first few weeks, but then did not. We have our next appt w/our main GI on Monday. We also consult with another pediatric Crohn's expert GI who is in agreement with our first GI. We live on Long Island and go to doctors in NYC (Columbia & Mount Sinai)
Thanks for your support. We are open to trying other treatments.

 

[saidinstouch]

It sounds like he might need to try something like remicade if it is crohns related due to the severity of the disease. The other possibility is that maybe it is viral in nature and is presenting with a number of symptoms. I don't know which viruses could do this, but a lot of them probably have antigen blood tests that can be done to see if he has one. I just found out I was exposed to HepB as a child before I got my immunization for it (long before the crohns for both). A virus probably isn't the cause, but it can't hurt too much to ask and get it checked out.

 

[effdee]

The prednisone could be making his symptoms worse. If you look up the novel listed as side effects, you'll find that diarrhea, joint pain, mouth sores, and blurred vision.

Something that messes with the immune system can effect Crohn's, unfortunately. You just have to do your best to stay well.

Has your son seen an ophthalmologist? I used to see one yearly because my dad has glaucoma and when he saw I was on prednisone he wanted to see me every 4 months until I was on a low dose or off of it.

I agree that looking into a biologic medication (Remicade, Humira, Cimzia) since his symptoms sound severe. Best of luck to your son and family.

 

[Astra]

Maybe the dosage wasn't high enough? Most people start on 60mg.
I started on 50mg for a month then started to taper by 5mg every month, I will reach zero next week, it has took me nearly 10 months to do this, but it's healed me nicely, I was seriously ill with an infection and was told I nearly died! I was about to rupture.
If it was me, I'd try the Pred again and save the 'big guns' for the future, only because this med saved my life and I had no problems with it. I have no pain or D now.
good luck Jeanne with whatever you decide
xxx