Hi Maggie,
How are you? You've been fairly quiet the last week (unless I missed something). Are you finding any relief from the Entocort? I certainly hope so.
Let us know how you are doing.
Katy
Maggie
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning Kate and All,
I have been quiet and you haven't missed any postings from me. I wanted to wait 3 weeks before posting anything about the Entocort to give it a really good trial period but since you asked here goes.
it has been WONDERFUL for alleviating the D. I have gone from almost 15+ times per day down to 2 or 3 maximum and was worked instantaneously. However - drum roll please - coupled with my heart medication I have been in dizzy land for the past week. Started it last MOnday and have had serious stability problems and have actually fallen twice. I spoke with my gastro yesterday and my cardiologist and they still want me to continue to do both. Big Discovery from my blood tests - all 7 vials done last week and ordered by the gastro - is that my Folic Acid levels are non existent - .1 of 1%. I have added 1.0 mg of folic acid starting today and the dizziness is not there. I had bought folic acid and calcium to take last week but did not want to disturb the other 2 meds but he wanted me to start folic immediately. My blood condition - macrocytosis - quite enlarged plateletts and treated by the hematologist is a side result of low folic acid. Think the hematologist would have discovered that a year ago. My gastro also told me he has never seen such a low folic reading in the last 20 years he has been practicing. No surprise to me since nothing I get is normal.
Also, the leg cramps were very severe the past 2 weeks and this should help that.
Will give another report in a couple of weeks and then will see him again and hopefully the dosage of 3 per day will be cut back.
I must say what everyone else has said and that is that other than being a dizzy head it has given me new found freedom and a real sense of life back.
Love, Maggie
I have been quiet and you haven't missed any postings from me. I wanted to wait 3 weeks before posting anything about the Entocort to give it a really good trial period but since you asked here goes.
it has been WONDERFUL for alleviating the D. I have gone from almost 15+ times per day down to 2 or 3 maximum and was worked instantaneously. However - drum roll please - coupled with my heart medication I have been in dizzy land for the past week. Started it last MOnday and have had serious stability problems and have actually fallen twice. I spoke with my gastro yesterday and my cardiologist and they still want me to continue to do both. Big Discovery from my blood tests - all 7 vials done last week and ordered by the gastro - is that my Folic Acid levels are non existent - .1 of 1%. I have added 1.0 mg of folic acid starting today and the dizziness is not there. I had bought folic acid and calcium to take last week but did not want to disturb the other 2 meds but he wanted me to start folic immediately. My blood condition - macrocytosis - quite enlarged plateletts and treated by the hematologist is a side result of low folic acid. Think the hematologist would have discovered that a year ago. My gastro also told me he has never seen such a low folic reading in the last 20 years he has been practicing. No surprise to me since nothing I get is normal.
Also, the leg cramps were very severe the past 2 weeks and this should help that.Will give another report in a couple of weeks and then will see him again and hopefully the dosage of 3 per day will be cut back.
I must say what everyone else has said and that is that other than being a dizzy head it has given me new found freedom and a real sense of life back.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Maggie,
Wow! No wonder you have been having health problems. Hopefully, that discovery will help to resolve a lot of issues that have bothering you. I'm wondering the same thing about your hematologist - do you suppose he found his specialty certification in a box of Cracker Jacks? LOL.
You probably won't have to worry about this for a while, because of the huge folate deficiency, but please be sure that you keep plenty of vitamin B-12 in your system. There is research documentation that shows that when vitamin B-12 status is low, high serum folate is associated with anemia, macrocytosis, and cognitive impairment. When vitamin B-12 status is normal, however, high serum folate is associated with protection against cognitive impairment. 1 mg of folic acid is only two and a half times the RDA, but anything over 0.8 mg is considered to be more than the body can normally safely utilize, so please be sure that you're getting plenty of B-12, along with the folic acid.
Here's a reference on that research:
http://www.ajcn.org/cgi/content/abstract/85/1/193
If this resolves the dizziness problem, then things are definitely beginning to look up for you, and that's great news.
Love,
Tex
Wow! No wonder you have been having health problems. Hopefully, that discovery will help to resolve a lot of issues that have bothering you. I'm wondering the same thing about your hematologist - do you suppose he found his specialty certification in a box of Cracker Jacks? LOL.
You probably won't have to worry about this for a while, because of the huge folate deficiency, but please be sure that you keep plenty of vitamin B-12 in your system. There is research documentation that shows that when vitamin B-12 status is low, high serum folate is associated with anemia, macrocytosis, and cognitive impairment. When vitamin B-12 status is normal, however, high serum folate is associated with protection against cognitive impairment. 1 mg of folic acid is only two and a half times the RDA, but anything over 0.8 mg is considered to be more than the body can normally safely utilize, so please be sure that you're getting plenty of B-12, along with the folic acid.
Here's a reference on that research:
http://www.ajcn.org/cgi/content/abstract/85/1/193
If this resolves the dizziness problem, then things are definitely beginning to look up for you, and that's great news.
Love,
Tex
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
Maggie, I'm so glad to hear that. And glad they figured out this low-folic acid issue. Perhaps getting that boosted will also help the overall well being feeling. Take your time before tapering (although I've never taken meds for MC). Enjoy the freedom from living in the loo (as you so eloquently put it).
You deserve it.
Katy
You deserve it.
Katy
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Hi Tex,
The gastro doc did mention that I should consider also taking the B12 to boost things and level all out. Did not show low B but thought it would be a wise idea. Failed to mention that in my post.
And yes - the hematologist got one of those stupid paper toys and it was his degree in the Cracker Jack Box. What the heck happened to the good toys we got as kids?
If this solves the majority of my problems, I surely will be able to have a happier life and a great vacation. Was not looking forward to entertaining the Brits along with 2 grandsons and feeling this way.
Love, Maggie
The gastro doc did mention that I should consider also taking the B12 to boost things and level all out. Did not show low B but thought it would be a wise idea. Failed to mention that in my post.
And yes - the hematologist got one of those stupid paper toys and it was his degree in the Cracker Jack Box. What the heck happened to the good toys we got as kids?
If this solves the majority of my problems, I surely will be able to have a happier life and a great vacation. Was not looking forward to entertaining the Brits along with 2 grandsons and feeling this way.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Maggie!
This warms my heart
- of course *not* the dizziness/folate issue - but the Entocort success! I know you have suffered for soooo long - to be down to 2-3 trips a day must be such a great feeling!!
I have a feeling this is the beginning of some real progress for you - and I'm glad in a way that *something* triggered them finding the folate problem...onward and upward!
Continued wishes for good health - and how fabulous you are feeling better for your vacation
Love,
Mary
This warms my heart
- of course *not* the dizziness/folate issue - but the Entocort success! I know you have suffered for soooo long - to be down to 2-3 trips a day must be such a great feeling!!I have a feeling this is the beginning of some real progress for you - and I'm glad in a way that *something* triggered them finding the folate problem...onward and upward!
Continued wishes for good health - and how fabulous you are feeling better for your vacation
Love,
Mary
Maggie,
I am soooooo glad you are finally feeling better! It must be such a difference in your life being able to "function normally" for a change -
normal is for us!
Here's to continued improvement and a wonderful vacation and the rest of your life!!!!!!!!!!!!!
Love,
Mars
I am soooooo glad you are finally feeling better! It must be such a difference in your life being able to "function normally" for a change -
normal is for us!Here's to continued improvement and a wonderful vacation and the rest of your life!!!!!!!!!!!!!
Love,
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
Yeah Maggie,
Your improvement is so exciting! My mother's doctor said that you cannot get too much Folic Acid. They had her on 2mg and then what she was getting in her multi. I was concerned that she was getting too much, but if he was correct, you can't get too much. I also take Zinc for muscle cramps. I think that helps as well.
Pat
Your improvement is so exciting! My mother's doctor said that you cannot get too much Folic Acid. They had her on 2mg and then what she was getting in her multi. I was concerned that she was getting too much, but if he was correct, you can't get too much. I also take Zinc for muscle cramps. I think that helps as well.
Pat
Hi Maggie,
I'm thrilled for you! What a relief to be free of D for the first time in what - 7 years? I think your over-all health will improve because now you are absorbing more nutrients. And then the folic acid supplement will help also.
You must feel like a new person! No more sleeping in the loo - remember those days? Keep me posted on your progress.
Love,
Alice
I'm thrilled for you! What a relief to be free of D for the first time in what - 7 years? I think your over-all health will improve because now you are absorbing more nutrients. And then the folic acid supplement will help also.
You must feel like a new person! No more sleeping in the loo - remember those days? Keep me posted on your progress.
Love,
Alice
Pat,
You're quite correct - overdosing with folic acid is not a major problem. I apologize for posting that caveat about it.
A couple of years ago, we had a discussion about B-12, and the fact that an adequate supply of folate must also be available, in order for the body to properly utilize the B-12. Someone, (an ex-nurse, I believe), posted that 0.4 mg is the RDA, and twice that amount is the upper safe limit, (0.8 mg), and should not be exceeded.
I just accepted that statement at face value, and never questioned it. Now that I have looked it up though, I see only glowing reports about how beneficial it is, with virtually no risks associated with taking it in larger doses, as long as there is no deficiency of B-12. It just goes to show that it's always a good idea to check out claims like that.
Shame on me for passing along such misinformation, and thank you for correcting my mistake.
Tex
You're quite correct - overdosing with folic acid is not a major problem. I apologize for posting that caveat about it.
A couple of years ago, we had a discussion about B-12, and the fact that an adequate supply of folate must also be available, in order for the body to properly utilize the B-12. Someone, (an ex-nurse, I believe), posted that 0.4 mg is the RDA, and twice that amount is the upper safe limit, (0.8 mg), and should not be exceeded.
I just accepted that statement at face value, and never questioned it. Now that I have looked it up though, I see only glowing reports about how beneficial it is, with virtually no risks associated with taking it in larger doses, as long as there is no deficiency of B-12. It just goes to show that it's always a good idea to check out claims like that.
Shame on me for passing along such misinformation, and thank you for correcting my mistake.
Tex
