Update: I have been taking d-mannose in powder form for a few days now. This coincided with me coming off pepto-bismol and my MBs are loose again. So, so far, it is not proving to be helping. However, I doubt much of it reaches my colon, especially as it is in powdered form. I will keep taking it for a while longer and try and find a pill form.
All Best, ant
Progress report and supplement that's helping
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Everyone, I thought I would give another update on my experience with D-Mannose. I am still doing great. I have been on D-Mannose 2 months and off entocort for 5 weeks now. For me, it seems to have been a replacement for the entocort and has actually given me better results. I'm going to continue this for the next several months and then maybe I'll try to do without the D-Mannose and see what happens. I check in with my pcp in January and I'll see what she thinks. She's the one who suggested I try this. I'm just kind of an experiment in progress so we'll see what happens. Happy Thanksgiving to you all, Love JoAnn
That's wonderful news, JoAnn. I hope that you are still enjoying remission when you see your PCP in January and that you'll be able to maintain it without the D-Mannose. It would be great if others can use your method and have success also.
Gloria
Gloria
You never know what you can do until you have to do it.
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Thank you JoAnn,
I'm going to look into it and look for it at the health food store. I'll let you know how it goes . . .
Marsha
I'm going to look into it and look for it at the health food store. I'll let you know how it goes . . .
Marsha
Hi Everyone, I've been away awhile and need to post an update. I was doing fantastic until the 2nd week in Dec. when a combination of things happened. Three of my students threw up at school and I started not feeling well. That weekend we had homemade turkey soup and my husband, son, and I all got sick with D and stomach problems. My husband and son got well, but I went downhill and all my progress with MC was undone. I struggled through the holidays and ate very simply trying to get back on track, but it never happened. I finally caved in this past week and went back on entocort. Within 2 days, things are almost normal. Last time I went on entocort, it took weeks to see any improvement. What does that mean, Tex?
Anything positive? I wanted so bad to not be dependent on entocort. My copay has gone through the roof-$250! I'm not sure where to go from here. How soon would you start tapering? Living with this disease is like living on quicksand-you never know when you're going under! I was hoping I had healed enough to not have this problem. Those few months with the Dmannose were wonderful and I felt so good. I think I'll still use it and hopefully get back to where I was. Thanks for listening and any advice is appreciated. JoAnn
Anything positive? I wanted so bad to not be dependent on entocort. My copay has gone through the roof-$250! I'm not sure where to go from here. How soon would you start tapering? Living with this disease is like living on quicksand-you never know when you're going under! I was hoping I had healed enough to not have this problem. Those few months with the Dmannose were wonderful and I felt so good. I think I'll still use it and hopefully get back to where I was. Thanks for listening and any advice is appreciated. JoAnn
Oh, JoAnnn - I'm so sorry to read about your setback.
As you know, I've had relapses after stopping Entocort and have tried to regain control without going back on it. I've found each time that I need to take Entocort. The length of time and the dosage required depends on how quickly I respond. You are responding very quickly, so I think that you could begin tapering quickly.
When I had problems in May, I took 2 pills for 2 days and didn't get any relief, so I upped the dosage to 3 pills for 2 days and began to improve. I then reduced to 2 pills for 11 days. By then, I was having Normans just once a day and felt comfortable going down to 1 pill a day. The type and frequency of my BMs were what determined my dosage.
During my most recent relapse, I was slow to increase Entocort, but finally went on 3 pills per day for 11 days before I felt I could reduce to 2 pills a day. I stayed on 2 pills a day 9 days until Norman began appearing again. I've been taking 1 pill a day for about 4 weeks and am, for the most part, doing well. If I didn't have surgery and probable airplane travel to worry about, I would probably be tapering to one pill every other day by now.
I think that you could probably follow a much faster tapering timetable, because it sounds like you've been healing and were doing so well. Plus, your relapse was very sudden and is probably temporary. Let's hope that's the case.
Gloria
As you know, I've had relapses after stopping Entocort and have tried to regain control without going back on it. I've found each time that I need to take Entocort. The length of time and the dosage required depends on how quickly I respond. You are responding very quickly, so I think that you could begin tapering quickly.
When I had problems in May, I took 2 pills for 2 days and didn't get any relief, so I upped the dosage to 3 pills for 2 days and began to improve. I then reduced to 2 pills for 11 days. By then, I was having Normans just once a day and felt comfortable going down to 1 pill a day. The type and frequency of my BMs were what determined my dosage.
During my most recent relapse, I was slow to increase Entocort, but finally went on 3 pills per day for 11 days before I felt I could reduce to 2 pills a day. I stayed on 2 pills a day 9 days until Norman began appearing again. I've been taking 1 pill a day for about 4 weeks and am, for the most part, doing well. If I didn't have surgery and probable airplane travel to worry about, I would probably be tapering to one pill every other day by now.
I think that you could probably follow a much faster tapering timetable, because it sounds like you've been healing and were doing so well. Plus, your relapse was very sudden and is probably temporary. Let's hope that's the case.
Gloria
You never know what you can do until you have to do it.
JoAnn,
What a bummer. You apparently got hit with a double whammy. I'm so sorry that you had to go through the holidays without remission. I don't remember how long you had been in remission, before that happened, but remember that it takes a year or two for the intestines to completely heal, so you were probably still at a heightened risk level, and all the enteritis caused by the viruses/bacteria, apparently overwhelmed your immune system, and it kicked into high gear, and didn't know when to stop producing T-cells.
That's a mighty high co-pay. If you need a cheaper source of budesonide, and you don't mind ordering meds over the inernet, see my second post in the thread at this link:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10953
All of this is uncharted waters, so you will have to follow your instincts, to decide when to reduce the dose. Your body will tell you, if it hasn't healed enough for a reduced dose to maintain remission, but as Gloria mentioned, I would think that the process should go much faster than it did the first time. Hopefully, before something like that happens again, your body will have healed enough that you will be able to weather the "storm", and not fall out of remission for more than a few days, at worst.
Please keep us posted on your progress. As you can see from Gloria's sharing of her experience, such information is very valuable for future reference.
I wish you the best of luck in regulating your treatment, and a speedy return to "med-free" remission.
Tex
What a bummer. You apparently got hit with a double whammy. I'm so sorry that you had to go through the holidays without remission. I don't remember how long you had been in remission, before that happened, but remember that it takes a year or two for the intestines to completely heal, so you were probably still at a heightened risk level, and all the enteritis caused by the viruses/bacteria, apparently overwhelmed your immune system, and it kicked into high gear, and didn't know when to stop producing T-cells.
To me, that quick response suggests that you were on the verge of remission, and so the Entocort didn't have much to do, to accomplish that goal. I totally agree with Gloria, and I consider her suggested schedule for treatment adjustment, to be a very valuable resource.JoAnn wrote:I finally caved in this past week and went back on entocort. Within 2 days, things are almost normal. Last time I went on entocort, it took weeks to see any improvement. What does that mean, Tex?
That's a mighty high co-pay. If you need a cheaper source of budesonide, and you don't mind ordering meds over the inernet, see my second post in the thread at this link:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10953
All of this is uncharted waters, so you will have to follow your instincts, to decide when to reduce the dose. Your body will tell you, if it hasn't healed enough for a reduced dose to maintain remission, but as Gloria mentioned, I would think that the process should go much faster than it did the first time. Hopefully, before something like that happens again, your body will have healed enough that you will be able to weather the "storm", and not fall out of remission for more than a few days, at worst.
Please keep us posted on your progress. As you can see from Gloria's sharing of her experience, such information is very valuable for future reference.
I wish you the best of luck in regulating your treatment, and a speedy return to "med-free" remission.
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.
Dear Tex and Gloria, I love you guys! Thanks for the information and boost to my spirits. Gloria, you amaze me that with all you are going through that you still take the time to help and lift me. I will follow your adivce on the tapering and see what happens. Thank you Tex for helping me understand what happened. It encourages me to keep going and not get so down about it. I am definitely going to order online next time. I have an appt. next week with my pcp and will discuss all this with her. She's learning along with me and I'm sure she'll prescribe the generic entocort instead of having to go back to my gi. I hope I can soon get back to where I was. Gloria, my prayers and positive wishes to you as you proceed with your decisions and procedure. Thank you both again. I will post again as things unfold. JoAnn
JoAnn,
If I recall correctly, you don't need a prescription to order from either of those sites. Your doctor may not be enthusiastic about endorsing the use of those offshore pharmacies, since they bypass the U S regulations of Big Pharma. They seem to be reliable, though, because at least a couple of members have ordered the generic version in the past few months, and I assume that the product performs reliably, since we haven't heard anything to the contrary. Officially, (in this country, at least), there is no such thing as a generic version, (IOW, it's not legal for sale in this country.) Also, since the shipment has to go through customs, I believe that it takes 2 or 3 weeks for delivery, which can be a problem if someone needs it in a hurry.
Tex
If I recall correctly, you don't need a prescription to order from either of those sites. Your doctor may not be enthusiastic about endorsing the use of those offshore pharmacies, since they bypass the U S regulations of Big Pharma. They seem to be reliable, though, because at least a couple of members have ordered the generic version in the past few months, and I assume that the product performs reliably, since we haven't heard anything to the contrary. Officially, (in this country, at least), there is no such thing as a generic version, (IOW, it's not legal for sale in this country.) Also, since the shipment has to go through customs, I believe that it takes 2 or 3 weeks for delivery, which can be a problem if someone needs it in a hurry.
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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Tex and Gloria,
What nice responses to Joannes post. I am impressed. Very compassionate, and informative.
I thought I'd let you know that I've been taking d-mannose for about 10 days, starting with a small amount, increasing up to 3 times a day just the last 3 days. I've had to stop taking the Caltrate that I usually take to stay "Norman-ized", because now it's too much, and unnecessary. It's a little early to be too encouraged, but I have noticed the same kind of general trend taking d-mannose that Joanne has written about. I'll keep checking in to let you know if it does continue to help me.
Marsha
What nice responses to Joannes post. I am impressed. Very compassionate, and informative.
I thought I'd let you know that I've been taking d-mannose for about 10 days, starting with a small amount, increasing up to 3 times a day just the last 3 days. I've had to stop taking the Caltrate that I usually take to stay "Norman-ized", because now it's too much, and unnecessary. It's a little early to be too encouraged, but I have noticed the same kind of general trend taking d-mannose that Joanne has written about. I'll keep checking in to let you know if it does continue to help me.
MarshaHi Marsha,
That's great news, of course, and I hope the benefits continue.
Yes, definitely, please keep us updated on your response to it.
Tex
That's great news, of course, and I hope the benefits continue.
Yes, definitely, please keep us updated on your response to it.
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.
Thanks Tex for educating me about how to proceed when using those pharmacies. I am definitely going to look into it. It's such a relief to know there are other options. I'm very encouraged by how fast I'm responding to the entocort and will follow Gloria's advice on tapering. I'm going to continue to keep the Dmannose as part of my treatment since it seemed to help me so much before my Dec. problem. Good luck to you Marsha, I hope it gives you the same benefits I experienced. I'll let you know where this journey leads me next and hope it will be helpful. Tex, thank you for providing this "safe harbor" with so much love, support, and information. JoAnn