Hi Tex,
I wasn't happy to hear about the statins. I take Crestor. Just curious to know if anyone has managed to control MC with diet alone, in spite of having to take statins.
Also, if statins caused MC, and someone stopped taking statins, would they heal on their own?
I do hope that my visual problems are just from the cataract, and not from other neurolgical issues.
Marion
maintanance dose ?
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I don't know the answer to that one. As drug-induced MC goes, statins are pretty low on the list of offenders. IOW, the risk is much lower than for someone who takes repeated doses of antibiotics, NSAIDs, PPIs or SSRIs, for example.Marion wrote:Just curious to know if anyone has managed to control MC with diet alone, in spite of having to take statins.
Maybe, but that sort of depends on how long the inflammation has been present. For drug-induced cases where the offending drug is discontinued before leaky gut becomes a major problem, success rates should be fairly high. If the inflammation continues long enough, though, food sensitivities eventually develop.Marion wrote:Also, if statins caused MC, and someone stopped taking statins, would they heal on their own?
Most people who have neurological side effects from budesonide have more than one symptom. They can range from balance issues and vertigo to headaches and some people experience blurred vision, headaches, tremors, etc.Marion wrote:I do hope that my visual problems are just from the cataract, and not from other neurolgical issues.
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.
Is it worth updating a new RX for the blurred vision? I'd imagine the only help for that would be to go off the budesonide? I'd rather put up with the aggravation of it than go back to horrible D. Hopefully this won't be forever. Can the blurred vision turn to anything worse or be a permanent side effect?
DebE,
Unfortunately, I don't know enough about the effects of corticosteroids on vision to be able to confidently address your questions. I'm pretty sure that the blurred vision is temporary, and will resolve when the drug is discontinued. That has been the outcome so far with everyone who has had the side effect (as far as I am aware), but I have no idea if there are any long-term risks involved. The only time I've ever experienced blurred vision due to a corticosteroid was caused by ear drops following the removal of an ear fungus. I noticed that after a few days my vision in the eye nearest to that ear was beginning to become blurred. I stopped using the ear drops and after a couple of days, my vision returned to normal.
It might not hurt to discuss your situation with an opthalmologist, because I have no idea whether a new prescription might help.
Tex
Unfortunately, I don't know enough about the effects of corticosteroids on vision to be able to confidently address your questions. I'm pretty sure that the blurred vision is temporary, and will resolve when the drug is discontinued. That has been the outcome so far with everyone who has had the side effect (as far as I am aware), but I have no idea if there are any long-term risks involved. The only time I've ever experienced blurred vision due to a corticosteroid was caused by ear drops following the removal of an ear fungus. I noticed that after a few days my vision in the eye nearest to that ear was beginning to become blurred. I stopped using the ear drops and after a couple of days, my vision returned to normal.
It might not hurt to discuss your situation with an opthalmologist, because I have no idea whether a new prescription might help.
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.
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Joefnh
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Each time I have taken Entocort or prednisone I did notice a slight change in my eyesight but found it returned each time after discontinuing the med. I would imagine the steroids could effect eyesight in 2 ways.
First steroids tend to raise the pressure inside if your eye which would change the shape of the eye slightly thus altering your vision slightly.
Second steroids can reduce and swelling around the eye and potentially the ocular muscles which are used to control focus. This effect would most likely affect someone who is dealing with allergies which result in the localized swelling around the sinus and ocular cavity.
First steroids tend to raise the pressure inside if your eye which would change the shape of the eye slightly thus altering your vision slightly.
Second steroids can reduce and swelling around the eye and potentially the ocular muscles which are used to control focus. This effect would most likely affect someone who is dealing with allergies which result in the localized swelling around the sinus and ocular cavity.
Joe
In that case, a new vision correction prescription should help.Joefnh wrote:which would change the shape of the eye slightly thus altering your vision slightly
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.
Tex,
Thanks for the additional information regarding visual problems and other neurological problems. Thankfully I don't have any of the other symptoms, so it is probably just my cataract.
Would love to hear from any others that have had a cataract and are on this drug. Did they experience changes?
The initial changes in visual acuity seemed to happen quite rapidly in the first two months on budesonide. It has not improved, but it doesn't seem to be getting any worse (I hope).
I think I have a long road ahead of me on budesonide. Right now if it is a good morning I take one, if it is bad, I take two.
Still looking forward to Gi appt and Ophthalmology appt.
Marion
Thanks for the additional information regarding visual problems and other neurological problems. Thankfully I don't have any of the other symptoms, so it is probably just my cataract.
Would love to hear from any others that have had a cataract and are on this drug. Did they experience changes?
The initial changes in visual acuity seemed to happen quite rapidly in the first two months on budesonide. It has not improved, but it doesn't seem to be getting any worse (I hope).
I think I have a long road ahead of me on budesonide. Right now if it is a good morning I take one, if it is bad, I take two.
Still looking forward to Gi appt and Ophthalmology appt.
Marion
Hi Mim and Deb13,
I've been off of Entocort now for 5 months and have actually seen "eye improvement" today.
Mim--I had 3 incidences of pretty extreme blurred vision prior to getting on Entocort but I believe mine was tied to neurological situations related to the disease.
Deb and Mim--I don't wear glasses and only use a low level reading glasses (1.5) and I'm age 51. Back in October the MC fatigue was so severe that I decided I was too fatigued to shave my legs. I also realized that when standing up I could no longer see the hairs growing out on my calves. I chalked that up to deteriorating eye site due to "aging." Went to get my legs waxed--never had done this before---because the MC fatigue was overwhelming. Since October I've been getting my legs waxed about every 6 weeks or so as I was still too fatigued too shave. It was tricky since I could never tell the length of growth due to the deteriorating vision. Today all of a sudden I could see the hairs on my calves since the first time since October. I'm guessing either MC and/or Entocort affected my vision but today all of a sudden it appears to be back to what it was prior to MC. That being said it has taken a long time to get back to normal--like 8 months--so Deb I'd probably talk to your eye Doc about changing your lens. I'm thinking down the road you'll see improvement but why suffer in the meantime. This was probably TMI for the men but the eye thing can be unsettling. Brandy
I've been off of Entocort now for 5 months and have actually seen "eye improvement" today.
Mim--I had 3 incidences of pretty extreme blurred vision prior to getting on Entocort but I believe mine was tied to neurological situations related to the disease.
Deb and Mim--I don't wear glasses and only use a low level reading glasses (1.5) and I'm age 51. Back in October the MC fatigue was so severe that I decided I was too fatigued to shave my legs. I also realized that when standing up I could no longer see the hairs growing out on my calves. I chalked that up to deteriorating eye site due to "aging." Went to get my legs waxed--never had done this before---because the MC fatigue was overwhelming. Since October I've been getting my legs waxed about every 6 weeks or so as I was still too fatigued too shave. It was tricky since I could never tell the length of growth due to the deteriorating vision. Today all of a sudden I could see the hairs on my calves since the first time since October. I'm guessing either MC and/or Entocort affected my vision but today all of a sudden it appears to be back to what it was prior to MC. That being said it has taken a long time to get back to normal--like 8 months--so Deb I'd probably talk to your eye Doc about changing your lens. I'm thinking down the road you'll see improvement but why suffer in the meantime. This was probably TMI for the men but the eye thing can be unsettling. Brandy
Hi Brandy,
I really appreciate all of the information that you shared. You are right! The eye thing is very disturbing! I have problems even in the grocery store trying to read signs as to what is in each aisle! I'll just have to stay with the store where I know where everything is located.
It has not been the best of weeks. I thought I could handle gluten free mayo. Apparently NOT! I guess that finishes my testing regarding SOY! The gluten free mayos all have SOY! It is a slow process, but I am learning what to avoid. Others on this site have said that SOY IS EVIL! I agree!
Took two budesonide this morning and stuck to the basics for food ---- Vermont Organic Cinnamon Applesauce (they come in 4 packs), and my own homemade French Canadian Creton (love that stuff). No pain today! Yeah!
I still worry about my vision, but really have no choice regarding the budesonide --- have to get the inflammation down -- it is so bad that the right side of my body is still distended.
Marion
I really appreciate all of the information that you shared. You are right! The eye thing is very disturbing! I have problems even in the grocery store trying to read signs as to what is in each aisle! I'll just have to stay with the store where I know where everything is located.
It has not been the best of weeks. I thought I could handle gluten free mayo. Apparently NOT! I guess that finishes my testing regarding SOY! The gluten free mayos all have SOY! It is a slow process, but I am learning what to avoid. Others on this site have said that SOY IS EVIL! I agree!
Took two budesonide this morning and stuck to the basics for food ---- Vermont Organic Cinnamon Applesauce (they come in 4 packs), and my own homemade French Canadian Creton (love that stuff). No pain today! Yeah!
I still worry about my vision, but really have no choice regarding the budesonide --- have to get the inflammation down -- it is so bad that the right side of my body is still distended.
Marion
Hi Leah,
It is so nice to hear from someone that knows what this is all about. I have just been depressed all day, and that is not like me at all. Normally I'd be out tending my flower gardens (far too many gardens for any sane person, but I love flowers), or off visiting the kids. I spent pretty much the whole day on the computer learning more about CC and MRT testing, etc. The highlight of my day was finding out that the Boarshead products are all gluten free. I did go to the little market in town to get some sliced turkey from the deli. I hope I'm OK with that. I'll be taking some to work with me.
Is the Hain's Safflower Mayo also free of soy.
I think it was one of your posts that clued me in to my (probable intolerance to green peas, and likely other legumes). Thank you for that. After looking at my food diary back through May, that whole category will be off the list for now.
Still on 2 budesonide per day. Would love to level off to one, but it seems that I can't even manage that.
I have to stop feeling sorry for myself! One of the hardest things is to look at my old favorite recipes, and realize that 99% of them are off limits!
Marion
mARION
It is so nice to hear from someone that knows what this is all about. I have just been depressed all day, and that is not like me at all. Normally I'd be out tending my flower gardens (far too many gardens for any sane person, but I love flowers), or off visiting the kids. I spent pretty much the whole day on the computer learning more about CC and MRT testing, etc. The highlight of my day was finding out that the Boarshead products are all gluten free. I did go to the little market in town to get some sliced turkey from the deli. I hope I'm OK with that. I'll be taking some to work with me.
Is the Hain's Safflower Mayo also free of soy.
I think it was one of your posts that clued me in to my (probable intolerance to green peas, and likely other legumes). Thank you for that. After looking at my food diary back through May, that whole category will be off the list for now.
Still on 2 budesonide per day. Would love to level off to one, but it seems that I can't even manage that.
I have to stop feeling sorry for myself! One of the hardest things is to look at my old favorite recipes, and realize that 99% of them are off limits!
Marion
mARION
Marion,
If you are down to 2 Entocort pills a day after just 6 weeks, I'd say you've made pretty good progress.
Here are the ingredients in Hain's Safflower Mayonnaise:
Other Ingredients: Expeller pressed safflower oil, whole eggs, grain vinegar, filtered water, egg yolks, salt, egg whites, dehydrated cane juice, spice, lemon juice concentrate, honey, [mixed tocopherols (vitamin E) ingredients not found in regular mayonnaise], natural flavors, paprika extractives (for color).
My Note: Mixed tocopherols is made from soy.
Soy-free Vegenaise doesn't contain soy, gluten, dairy or eggs, but it does contain pea protein.
I am intolerant to all of the above, plus vinegar, so I make my own mayonnaise. My recipe and a couple of others for mayonnaise are in Dee's Kitchen, if you are interested in making your own.
Gloria
If you are down to 2 Entocort pills a day after just 6 weeks, I'd say you've made pretty good progress.
Here are the ingredients in Hain's Safflower Mayonnaise:
Other Ingredients: Expeller pressed safflower oil, whole eggs, grain vinegar, filtered water, egg yolks, salt, egg whites, dehydrated cane juice, spice, lemon juice concentrate, honey, [mixed tocopherols (vitamin E) ingredients not found in regular mayonnaise], natural flavors, paprika extractives (for color).
My Note: Mixed tocopherols is made from soy.
Soy-free Vegenaise doesn't contain soy, gluten, dairy or eggs, but it does contain pea protein.
I am intolerant to all of the above, plus vinegar, so I make my own mayonnaise. My recipe and a couple of others for mayonnaise are in Dee's Kitchen, if you are interested in making your own.
Gloria
You never know what you can do until you have to do it.
Hi Marion. I'm sorry to hear that you are feeling down. We all have those days. Like Gloria said, if you are down to two pills a day after only six weeks, you are doing well. This all takes time. I had a mini flare right before I left for camping. It was a bummer, but i upped my pills a little and did the best I could while I was there. Remember that you are still healing and that you will react less and less to things the more you heal. I am at the five month mark and although I still react to things I am testing, I bounce back faster now.... AND I GET ANSWERS! I tried to look at it this way .... You are in the hardest part of your journey right now. As time goes on, you will learn and then know what foods make you feel good. It does get easier. I know exactly how you feel about old recipes. Believe it or not, I was a classicly trained pastry chef in my early days. I can cook! Now I am still racking my brain trying to figure out how to change recipes, so that my family can enjoy our meals.But I am slowly collecting a new set of recipes. You are doing great so far. Keep leaning
Gloria, I didn't know that ingredient is from sot. Damn! I don't seem to react to the small amount of soy in it I guess. I also found a Mayo from Spectrum ( brand). It's Canola Mayo. Ingredients:Canola oil, whole eggs,water,honey,white vinegar,sea salt,mustard,lemon juice concentrate. It's pretty good. Could I make my own? sure, but it goes bad faster than i use it.
Hope you have a better day tomorrow Marion.
Leah
Gloria, I didn't know that ingredient is from sot. Damn! I don't seem to react to the small amount of soy in it I guess. I also found a Mayo from Spectrum ( brand). It's Canola Mayo. Ingredients:Canola oil, whole eggs,water,honey,white vinegar,sea salt,mustard,lemon juice concentrate. It's pretty good. Could I make my own? sure, but it goes bad faster than i use it.
Hope you have a better day tomorrow Marion.
Leah