Health issues after stopping budesonide

[luanne]

I've now been off budesonide for several weeks, after being stopped by my physician without tapering. I posted about the side effects I had including pretty significant muscle and joint pain. Most of that has resolved, thankfully, but I continue to have pain in my hands and sometimes in my feet and hips. I had no other effects from stopping it, thankfully.

However, about 3 weeks ago I came down with a bad cold. The acute part went away within a week, but now I continue to have a productive cough, sinus problems, and just feel run down. I also developed a sharp pain under my breast that feels musculoskeletal. I went to my doctor who ordered an x-ray to rule out pneumonia or plurisy. The x-ray came back normal. She said if I didn't feel better by this Friday, in 3 days, I was to call and she would prescribe antibiotics. She also told me to take ibuprofen for the pain in my chest wall. I know that is a no-no with colitis. She said probably a couple wouldn't affect it.

So, I guess my question is, would my immune system be affected by stopping the budesonide in that I would have a hard time fighting off infections for a while? It's now been a few months since I have felt good. I am planning on getting a flu shot this fall but want to make sure I won't have any problems with that as well. I was also wondering how long before all my joint pain would be gone. I find it hard to do certain things with my hands. I have also gained weight and feel puffy. I haven't been as active because of the pain and being sick, but I also haven't been eating more than normal, and in fact, my appetite has been less than normal.

Anyone have some info on this or advice? Thanks.

[tex]

but I continue to have pain in my hands and sometimes in my feet and hips

Those are typical symptoms of corticosteroid withdrawal. However, they are also listed as side effects while taking Entocort.

She also told me to take ibuprofen for the pain in my chest wall. I know that is a no-no with colitis. She said probably a couple wouldn't affect it.

It's possible that taking ibuprofen might not trigger an MC reaction, but I would be afraid to take a chance ubless the pain were intolerable.

The other symptoms that you have described (cold, lingering cough that produces mucus, sinusitis, weight gain, puffiness of the face, general feeling of discomfort, etc.) are all associated with the use of Entocort (rather than Entocort withdrawal).

Normally, such side effects begin to fade away a few weeks after Entocort is discontinued, so it's odd that they would be showing up so late in the game.

Tex

[luanne]

Just thought I'd update you since my last post in August. A lot has happened since then.

It's now been 3 months since being abruptly stopped on the budesonide. In my last post, I had had a bad cold. Well, that did turn into bronchitis (with which the coughing cracked 2 ribs) and a sinus infection, for which I was started on an antibiotic. That caused unrelenting diarrhea. From there, it was downhill. I felt very sick, my white count went up, I developed a fever, and my heart rate went up to 115. My doc called about the high white count and wanted to test for C. diff. I wanted to go to the hospital because I felt so sick. I was admitted and given levofloxacin and other meds along with fluids. I was very dehydrated and still had unrelenting pain, including the sharp chest pain from the cracked ribs, which weren't discovered till about 2 weeks ago. They did countless tests and 2 chest x-rays. I was negative for C. diff. but my potassium was very low. When they got the potassium up to 4 and found my C. diff was negative, they discontinued supplemental potassium, didn't take anymore blood tests for it, and sent me home, even though I still had severe diarrhea. It turned out I had a bad UTI without symptoms of that. It was resistant to most oral antibiotics. I was sent home with oral levofloxacin and developed an allergy to it. I also developed a severe yeast infection. All my illnesses were bad. My GI was on maternity leave so I did see her PA 2 times who was not concerned about all this and prescribed Questran. It did not help much.

Since then, I started on a low-fiber diet along with taking psyllium. That has helped a lot. My pain has continued. I have been taking Norco for it, which helps me function but does not take away all the pain.

My doc wanted me to see the GI doc, not the PA, so today I finally got in to see her. Lo and behold, I should NOT have been stopped on the budesonide! What a shock! She validated all my concerns and is putting me back on it for 3 months, with hopes of tapering after that. So, after 3 months of all this yuck, I should feel a lot better in a few weeks. Gave me a little taste of what it's like to be in chronic pain.

During this time I've had countless lab tests and been into see my doc at least 15 times. She finally ordered a cortisol test a few weeks ago that was normal. I never had an adrenal test. She also ordered inflammatory tests because of my joint pain. My ANA came back positive so she referred me to a rheumatologist. I'm thinking it could just be the colitis but we'll see.

This brings me to today. It's been a frustrating journey, and I'm so glad I found this forum to vent and get information. Thanks for listening! I'm leaving for Hawaii tomorrow! Just what I need!

[DJ]

Hello Luanne, I'm sorry for what you have been through. Just a few comments. I would not feel comfortable taking Ibuprofen. NSAIDs contributed to my MC. I would not feel comfortable stopping Entocort abruptly.
I am weaning off of Entocort and with each reduction I have physical pain, mood changes (stressed feelings), and a bit of difficulty keeping my gut in balance. I'm happy to hear that you will wean off of the Entocort this time. I recall a tremendous reduction in aches and pains when I went on Entocort. As I come off, its the reverse - sans the diarrhea. Good luck and be well!

[tex]

Hi Luanne,

You've certainly had a rough ride, with more than your fair share of side issues. I'm glad that your GI doc is finally getting her act together regarding your treatment program.

Hopefully the Entocort will get your symptoms under control, so that you can enjoy your trip to Hawaii.

Thanks for the update.

Tex

[DebE13]

I'm sorry you went off so rapidly. I tapered off prednisone too fast and had similar issues that you are describing. My taper was my own uneducated doing because of frustration. Your doctor should get a kick in the pants.