Can you help me think this through?

[Beth]

Hi all,

I've been doing well with being on 3 mg of entocort every other day since November. It's controlled the D beautifully and eliminated the cramping, so long as I avoid every single one of my sensitivities. But I'm suspicious that it may be the cause of extreme insomnia and very strange and debilitating foot pain. I've always been prone to insomnia, but for the past 2+ months it's been the worst it's ever been, which is saying a lot. And I've developed very strange muscle soreness in my feet that makes it difficult to walk and leaves me hobbling after I actually go out for a walk around my neighborhood. So here's my question: would you risk going off the entocort for a month or so to see if it makes a difference? I know that stopping and starting up again can cause the entocort to stop working. I'm nursing my daughter, so I really need to make sure that I don't lose the ability to eat the few foods I can tolerate. But I also really need to sleep and to walk! Suggestions, thoughts?

Thanks!

[mzh]

I have debilitating foot pain while on and off Entocort. You might be low in calcium and magnesium though. Ask your doc about this. You can tested to see if you're low or not.

[Beth]

MZH - do you mean you have foot pain associated with entocort? Or that the pain comes and goes, unconnected to the meds? And I had my mag and cal tested in January: they were fine. Thanks for the tip, though.

[mzh]

No, I'm saying that I have them whether on or off. IOW, the Entocort didn't have anything to do with the pain since it's there regardless. It might be different for you though.

[tex]

Elizabeth,

This isn't chiseled in stone, but in general, corticosteroids tend to cause neurological side effects, rather than issues within muscle tissue. For example, consider this old post made by Sally, after she suffered through numerous attempts to wean off prednisone:

Intense burning on the top of the feet.

I have talked to several people who have been on prednisone for one thing or another long term and they report this. When I was withdrawing from pred it took over a month for the burning to go away. Nothing relieved it.

Love,

Sally

Another symptom of prednisone withdrawal

And remember that she was talking about withdrawal symptoms.

Tex

[TXBrenda]

Are you sure there is nothing wrong with your feet? I wore arch supports when I was in the fifth & sixth grade (around 45 years ago) to try to correcct pronation. The pain didn't start until about 15 years ago. I was diagnosed with heel spurs then.

Hope you can get to the bottom of this, no pun intended.

[DebE13]

Beth, sorry you have to make this choice. I'm going to try skipping three days between each 3mg dose. I know how you feel not wanting to tempt fate. I had sleep issues when I took prednisone and have never been the same since. I wear earplugs every night and that helps me sleep. Although I hope there isn't a major disaster - I'd sleep through it.
There are so many odd issues that seem to pop up with MCers it's hard to tell if it's drug related. On prednisone I had quirky things with my feet, mostly they felt like they were full of lead and I walked funny. Now I have an incredible tenseness in the back of my neck and shoulders that comes and goes . I don't know if its related to entocort but I'm already on such a tapered dose that I will have to deal with whatever happens next. It is scary to think of what I'd do if a 9mg dose didn't work. I guess your choice all depends on how much your feet and sleep are bothering you and if you are able to put up with it until you can taper even more. Sorry I didn't have more insight.

Deb

[carolm]

Beth, I'm not on Entocort any more but in reference to what Tex said about corticosteroids causing more neurological symptoms: I've had a couple of times that I reacted to food during a challenge and I thought "I'll just take 6 mg and if I've caused inflammation this should help". Much to my surprise when it kicked in I was light headed and had some mild hand tremors. Definitely a neuro- reaction. I've done this twice and had the same reaction both times. I'm questioning whether your foot pain would be caused by the Entocort.

Before you drop the Entocort and risk getting your GI track out of balance you might consider getting acupuncture. There's no drugs and it's clinically proven to help with pain. I'm thinking it would help your sleep too. It just might be an effective alternative. It won't upset your GI tract. It helped me get rid of intense daily nausea. Just a thought...

take care,
Carol

[Leah]

Tough decision Beth. I guess you could try to go every three days and see if there is a difference in how you feel.
I agree with Tex, what you are feeling could be neuro pain and not muscular pain.

Leah

[Beth]

Thanks, all. I actually did try acupuncture, and it really didn't make a difference, either with the sleep or the foot pain. I'm just so surprised by the muscle pain and the burning feeling (yes, I get that, too) in my feet. Sometimes I lie in bed at night and feel this crazy burning ache in my feet. I'm very active and am a huge fan of hiking, so this kind of pain doesn't feel like it makes sense. I mean, I worked out my entire pregnancy and walked nearly every day at the end. You'd think if I were going to feel foot pain that it would have started at that point with the weight gain and change in gait. Maybe it really is neurological, then. I guess I'm willing to stop the meds for a little while to see if it makes a difference. And if it does, then I'm going to have to seriously reconsider how to handle the colitis.

Tex, do you think I'm putting myself at risk for the meds to stop working if I find my foot pain isn't related to entocort and I want to go back on again?

I wish this weren't so complicated!

[tex]

Elizabeth,

Is your vitamin B-12 level sufficient? The reason I ask is because when my peripheral neuropathy began to develop, sometimes the soles of my feet would burn as if I were standing on hot coals. And occasionally, I would have idiopathic pain on the tops of my feet. (I've never taken an oral corticosteroid).

I believe that years of untreated gluten sensitivity was the cause of my peripheral neuropathy, but after taking Metanx (a prescription vitamin combination of the active forms of vitamins B-12, B-9, and B-6) for a year or two, my peripheral neuropathy is greatly diminished. This suggests to me that I might have had a vitamin B-12 deficiency at some point early on, before I figured out that I needed to cut gluten out of my diet. And other members have posted about pain that usually involves paresthesia, that resolved after I suggested that they try a vitamin B-12 supplement. Note that an adequate level of folic acid is necessary in order for the body to absorb/utilize B-12.

This might be a long shot, but I thought it worth mentioning.

Tex

[Gloria]

Hi Beth,

Have you considered seeing a podiatrist? It's possible that you have plantar fasciitis. Orthopedic inserts can help tremendously with the foot pain. I don't think a burning sensation is associated with the condition, however.

Gloria

[wonderwoman]

Several years ago I was having terrible pain in my feet when I took off my tennis shoes. Especially durning the night when I got up to go to the bathroom I could hardly step on the floor. Podiatrist could find nothing wrong. I discovered I had put arch supports in my tennis shoes at my husbands recommendation and they were throwing my feet into an unnatural position. When I took the arch supports out, the foot pain stopped.

[DebE13]

How long did you get Acupunture treatments? I'm on my 17th visit and it does take time. They told me to count on at least 20 treatments and give myself at least a year for healing. Hard to accept but realistic. I've been dealing with MC since 2007.

[TXBrenda]

Gloria & Charlotte

Your comments are similar to mine in nature. When my foot pain started about 15 years ago I was very active & over 100 lbs lighter. I hope Beth can find some relief.