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Here in Hong Kong it is less than 1 hour 'till Christmas..... so Happy Holidays one and all
The good news....
I am now 7 weeks without Entocort. My BMs are 90% normal and I have just added goat's cheese into my diet without any apparent problems.
The not so good news.....
However, I have noticed that as the Entocort is wearing off I have joint aches in my fingers, elbows and (mildly) in my knees. I had morning joint aches in my fingers before, which gradually went away when I was on a full Entocort regime. But I never before had a problem in my elbow and knees.
I assume this is RA and due to leaky gut. Question is what to do about it? Perhaps I could go back on a very light Entocort dose like one 3mg every 5 days. I had planned to go skiing this March, but if I have RA symptoms that might not work out.
Anyway, as things are so much better in the gastro area I am overall very thankful at this festive time.
That is indeed good news. And the fact that you could add goat's cheese to your diet without any GI symptoms is a good sign that healing is probably widespread.
I've experienced those joint issues before also, and they were the most pronounced in my fingers (causing some of them to grow crooked and twisted). Apparently osteoporosis was the problem in my case. I decided that casein was probably contributing to the problem. I can tolerate casein just fine, without any GI symptoms. But an EnteroLab test showed that I produce antibodies to casein. (It also showed that I was apparently getting trace amounts of gluten in my diet). Anyway, by making changes to eliminate the gluten cross-contamination risk, and by cutting all dairy products out of my diet, my osteoporosis symptoms have disappeared.
Thanks for the update, and Happy Holidays to you, also.
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.
Magnesium would help with joint pain, RA, etc....
Zinc, Vit C will help with cell rebuilding, leaky gut healing, clearing toxins etc.
additional Vit D3,
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I too can have a little cheese, like parmesan on GF pasta. Casein doesn't cause GI symptoms, but will make me achy the next day.
When I stopped Uceris I felt 'flu like symptoms', joint pain, etc for a couple of days.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Congrats Ant! I made it 41 days off and decided I needed to go back on. Frustrating but it is what it is. Maybe the next yime around it will be longer. It does make a difference having trace amounts in your system. I was doing one pill every five days and it made a difference. After pushing it out to once a week I started to try even longer then just gave it up to see what happened. Good to hear you are having success. Sorry you are having the RA symtoms now. I hope you find just the right dose to supress those pains. Merry Christmas!
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
You told us something about your fingers. I have also a problem in one of my fingers (and in my hand). My doctor doesn'y know what it is and sent me to a hanclinic, but they have a waitinglist for some months. (I also have the Dupuytren illness, but this looks different.) The finger is thickened and not straight. Here is a foto of my hands, it is the left one. Does it looks similar to your handproblems? I don't have pains.
Thank you for your good wishes for us. I wish you alsoo happy hollidays!
Good that you are for 7 weeks without entocort now!
I discontinued entocort 2 weeks ago and I really hope I don't have to start again, because I used it some years and my resistence became so afwul bad, that I will do anything (a lot) to avoid starting again.
Maybe you can find a medicine, that works for your pains, but does not have side-effects.
I wish you good luck.
I also had bad joint stiffness in hands, and it has mostly gone away on Entocort. It flared up each time I reduced the dose, except I had no issue the last time when I went from one a day to 3x/week. I am going to try and go off and see how it goes. If the joint issues come back, I will try to do a very low dose like Deb is doing, and see if that is enough.
It is weird to think that just 1 every 5 days makes a difference, Deb, but good that it can. Do you have to do 3/2/1 for a while, before going back to one every 5?
Sonja wrote:Here is a foto of my hands, it is the left one. Does it looks similar to your handproblems? I don't have pains.
You say, "it is the left one". I assume that you mean the left one in the photo (which is actually your right hand). Am I correct, or do I have it backwards?
I posted some photos of my hands several years ago (because of a discussion about lines and other damage to nails). If you look at my first post on the page at the link below, and click on the last photo in that post, you can see an enlargement of the photo that shows the arthritis damage to 3 of the fingers of my right hand (the first, second, and fourth fingers). And the damage is described below the photo in my post.
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.
Ant, If 1 entocort every 5 days makes a difference in the way that it really helps, then I think is worth doing it! Maybe it's possible to go on ski-holidays.......
Tex, its my left hand; I made the picture with Photo Booth (on my Mac). It makes mirror-images (sorry, don't know the proper name).
I looked at the photo's of your hands; not really a similar problem compared to mine, I think. My finger is specially thickened in between the junctions.
Sonja wrote:I looked at the photo's of your hands; not really a similar problem compared to mine, I think. My finger is specially thickened in between the junctions.
Yes I believe you are correct, with either type of arthritis the joints are swollen and inflamed, but not the areas between the joints.
That's good news that your first GF Christmas was free of problems. You have good self-control and that is very important for controlling and preventing MC symptoms.
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.
Joint pain ebbs and flows for me but I find if I eat mostly paleo and minimize night shades then I'll have no joint pain for months on end.
I tested two piece of fudge over the holidays, they had butter and evaporated milk in recipe. Severe knee pain for two days. I'm definitely reacting to casein.
When I'm glutened or soyed I'll have joint pain for 6-8 weeks.
There are folk remedies on the web. I tried the drunken raisins......loved the taste.......could not tell that they helped. Currently I'm having an inch of tart cherry juice with sparkling water. tart cherry juice is a long time remedy for gout.
I've read something about discontinuing entocort and the problems we can eventually get, besides BM-problems.
I'm GF for 5 weeks now and without entocort for 2 1/2 weeks.
My BM are rather well :-), but I expected that I would feel myself much better, because of the GF diet. But that's not the case. I had flulike symptoms for 4 weeks and now that's practically over since a week, but I have all the time a light headache and I am quickly irritated. This is not normal for me. Now I wonder: is this possibly a effect of stopping entocort? Or does it mean that I have more foodsensitivities?
I also am getting pain in some parts of my hands and fingers, especially when there is pressure on, and also in my shoulder (one side). I wonder can this be RA?
I wonder if anybody recognizes this?
Sonja
It took me a long time to heal....like 2 years. 4.5 months on Entocort and 20 months of healing. I found it helpful to evaluate my healing in 6 or 8 week chunks of time. It seemed hopeless and like I was not improving but when I looked back upon where I was 6 or 8 weeks previous.....yup I had improved. I also had some peaks and valleys where I kind of felt worse before I got better.
Re: irritability-----I had irritability and pretty severe anger issues (unusual for me). My iron was extremely low. Once I got my ferritin scores up the irritability and anger went away. Suggest keep an eye on your ferritin and iron blood scores.
Re: joint pain. Are you eating yogurt or cheese? If so suggest discontinue for awhile.
Looking back I remember feeling overall pretty lousy when I got off of Entocort and during year 1 and year 2. Now I feel better than I did pre MC.
