Visit the Microscopic Colitis Foundation Website
Just got of the phone with my GI's NP and they do not have any samples for me of Entocort. It was suggested that I go on Asocol (sp?) but they don't want me going on any type of generic form. They are mailing me a script for the Asocol along with a lab slip so they can monitor my liver and kidney's. The explination for not going on Sulfasalazine or Azulfidine is because of my history of side effects from other medications. When David contacted the pharmacy about the cost of going on Asocol he was told that the co-pay was going to be just as expensive as Entocort. It seems like trying to get any med samples or a discount on what I need is slowly but surely coming to a "dead end" very quickly.
Love and God Bless:
Jodi
The news was not good.................
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
jodibelle352
- Angel
- Posts: 610
- Joined: Sat Jun 21, 2008 10:57 pm
- Location: Michigan
- Contact:
The news was not good.................
May God and All His Angels, watchover, protect and guide you "One Day At A Time".
-
jodibelle352
- Angel
- Posts: 610
- Joined: Sat Jun 21, 2008 10:57 pm
- Location: Michigan
- Contact:
Hi Dee:
I have been keeping a very close journal on what I eat and want causes me to have a flare of D. If I eat or drink too much dairy the D flares until I've eliminated it from my system. Usually "down for the count" for at least 2-3 days. So I do not eat or drink dairy. I do use skimmed milk on my cereal but use a very small amount.
Others on the boards talk about their GI's having samples of meds and for some reason neither my GI or PP have any samples at all for me. After speaking to Jeannie who is my GI's NP she is sending me a script for Asacol but after talking with Mike our pharmacist this will also be very costly. So right now starting today I've decreased my dosage to 3mgs 1 capsule to make what I have stretch for at least a couple weeks. I'm just praying and keeping my fingers crossed that I can tolerate being on the lower dosage and hopefully just go off the medication all together by being VERY careful of what I eat and doing my best to stay GF. I tried decreasing my dosage back in Jan. and within 3 days the D was back "full force" so I'm hoping my gut and my colon have had more time to heal and that I will beable to just maintain my health with diet alone.
Thank You for your love and support. Today I've been trying to relax by crocheting. LOL Don't quite know why but crocheting usually helps me relax. I'm doing my best not to let the "stinking thinking" take over like I did yesterday. So far I'm doing pretty well and have decided that I'm not going on something that's going to raise hell with me as other previous meds have done.
Love and God Bless:
Jodi
I have been keeping a very close journal on what I eat and want causes me to have a flare of D. If I eat or drink too much dairy the D flares until I've eliminated it from my system. Usually "down for the count" for at least 2-3 days. So I do not eat or drink dairy. I do use skimmed milk on my cereal but use a very small amount.
Others on the boards talk about their GI's having samples of meds and for some reason neither my GI or PP have any samples at all for me. After speaking to Jeannie who is my GI's NP she is sending me a script for Asacol but after talking with Mike our pharmacist this will also be very costly. So right now starting today I've decreased my dosage to 3mgs 1 capsule to make what I have stretch for at least a couple weeks. I'm just praying and keeping my fingers crossed that I can tolerate being on the lower dosage and hopefully just go off the medication all together by being VERY careful of what I eat and doing my best to stay GF. I tried decreasing my dosage back in Jan. and within 3 days the D was back "full force" so I'm hoping my gut and my colon have had more time to heal and that I will beable to just maintain my health with diet alone.
Thank You for your love and support. Today I've been trying to relax by crocheting. LOL Don't quite know why but crocheting usually helps me relax. I'm doing my best not to let the "stinking thinking" take over like I did yesterday. So far I'm doing pretty well and have decided that I'm not going on something that's going to raise hell with me as other previous meds have done.
Love and God Bless:
Jodi
May God and All His Angels, watchover, protect and guide you "One Day At A Time".
Jodi,
I don't know if you saw my other post, but I have a prescription of Entocort that I will gladly send you. I can't take the stuff b/c of the s/e and I would hate to have to dispose of this when someone else could benefit from it. I have already gotten rid of my Asacol (couldn't take that either). I am glad that you are in better spirits.
Love,
Rose
I don't know if you saw my other post, but I have a prescription of Entocort that I will gladly send you. I can't take the stuff b/c of the s/e and I would hate to have to dispose of this when someone else could benefit from it. I have already gotten rid of my Asacol (couldn't take that either). I am glad that you are in better spirits.
Love,
Rose
-
jodibelle352
- Angel
- Posts: 610
- Joined: Sat Jun 21, 2008 10:57 pm
- Location: Michigan
- Contact:
If you are decreasing your dosage of Entocort to 3 mgs., you probably should forgo that small bit of skimmed milk with your cereal. If you have a blender and a fine sieve, you can easily make your own rice milk for the cereal. My recipe is here: http://www.perskyfarms.com/phpBB2/viewt ... =rice+milk
It only takes 30 minutes to make 3 quarts after the rice is cooked. Each quart only costs about 20-40 cents (for the 1/2 cup rice).
Good luck with reducing your dosage. You just might be healed enough to get away with it.
Gloria
It only takes 30 minutes to make 3 quarts after the rice is cooked. Each quart only costs about 20-40 cents (for the 1/2 cup rice).
Good luck with reducing your dosage. You just might be healed enough to get away with it.
Gloria
You never know what you can do until you have to do it.
-
jodibelle352
- Angel
- Posts: 610
- Joined: Sat Jun 21, 2008 10:57 pm
- Location: Michigan
- Contact:
Thank You Gloria:
I'm going to do my best to follow your recipe for rice milk for my cereal. It sounds like it should be easy enough for me to make. Today I didn't have Bailey (my grand-daughter) so I've been doing everything I can to possibly relax which is crochet or sometimes just have what David and I call "Our quiet time". No t.v., no radio and we actually turn off the ringer on the phone. LOL It may sound crazy to some but after yesterday's outburst I truly decided that I was NOT going to allow myself to fall back into that BLACK HOLE of depression.
I'm really hoping that since Jan. my colon, intestines and gut have had just that extra amount of time to heal so that a flare with D doesn't happen. Last time I tried to decrease my dosage by the 2nd day late in the afternoon the flare of D started and the 3rd day it was horrendous! So far I'm feeling well and except for some constipation this a.m. my stool has been formed and firm. Still NO tummy talking to me saying mean and hurtfull things. LOL If/When my tummy starts making noise is my warning that I better prepare myself for a flare.
I am however trying to stay positive that this time I'm going to succeed.
Love and God Bless:
Jodi
I'm going to do my best to follow your recipe for rice milk for my cereal. It sounds like it should be easy enough for me to make. Today I didn't have Bailey (my grand-daughter) so I've been doing everything I can to possibly relax which is crochet or sometimes just have what David and I call "Our quiet time". No t.v., no radio and we actually turn off the ringer on the phone. LOL It may sound crazy to some but after yesterday's outburst I truly decided that I was NOT going to allow myself to fall back into that BLACK HOLE of depression.
I'm really hoping that since Jan. my colon, intestines and gut have had just that extra amount of time to heal so that a flare with D doesn't happen. Last time I tried to decrease my dosage by the 2nd day late in the afternoon the flare of D started and the 3rd day it was horrendous! So far I'm feeling well and except for some constipation this a.m. my stool has been formed and firm. Still NO tummy talking to me saying mean and hurtfull things. LOL If/When my tummy starts making noise is my warning that I better prepare myself for a flare.
I am however trying to stay positive that this time I'm going to succeed.
Love and God Bless:
Jodi
May God and All His Angels, watchover, protect and guide you "One Day At A Time".
Jodi,
For the occasions when you may not have time to make rice milk, another option as a milk substitute is hempmilk, (milk made from hempseed). It's a little expensive, but it's pretty rich, and a little goes a long way - it tastes great, too, and it's loaded with omega 3 fatty acids, and other good stuff. It's gluten-free and dairy-free, and it doesn't even require refrigeration, until you open it. That way, you can keep a quart on hand, without refrigeration, in case you might need it. The downside is that, like so many foods, not all of us can use it - it seems that there are never any guarantees, when it comes to foods that we can eat.
Another possibility would be coconut milk. It's pretty rich, too, (high calorie), so you might need to cut it a little with water or something, though I've never tried diluting it.
Love,
Tex
For the occasions when you may not have time to make rice milk, another option as a milk substitute is hempmilk, (milk made from hempseed). It's a little expensive, but it's pretty rich, and a little goes a long way - it tastes great, too, and it's loaded with omega 3 fatty acids, and other good stuff. It's gluten-free and dairy-free, and it doesn't even require refrigeration, until you open it. That way, you can keep a quart on hand, without refrigeration, in case you might need it. The downside is that, like so many foods, not all of us can use it - it seems that there are never any guarantees, when it comes to foods that we can eat.
Another possibility would be coconut milk. It's pretty rich, too, (high calorie), so you might need to cut it a little with water or something, though I've never tried diluting it.
Love,
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.
Another is Almond Dream milk, which I use for drinking. But it costs $4 per half-gallon, on sale, $4.69 regular price - in the same range as Hemp milk. I don't want to spend $8 - $9 a gallon on milk, so I use the rice milk for my cereal and all of my cooking and baking. At 20-40 cents per quart (depending on the cost of 1/2 cup of rice), it reduces the overall cost of my milk.
I've noticed that I've quickly gotten used to the taste of any milk replacement. When I switched to the Almond Dream, I missed Rice Dream, but I'm used to the almond flavor now and don't even notice it. I think we adapt more quickly than we realize.
Gloria
I've noticed that I've quickly gotten used to the taste of any milk replacement. When I switched to the Almond Dream, I missed Rice Dream, but I'm used to the almond flavor now and don't even notice it. I think we adapt more quickly than we realize.
Gloria
You never know what you can do until you have to do it.
Gloria,
Good point. When I first tried hempmilk, I didn't like the taste. It didn't take long, though, before I preferred it to cow's milk. I need to locate some of the Almond Dream, and try it. I'll bet it won't take long to get used to.
Tex
Good point. When I first tried hempmilk, I didn't like the taste. It didn't take long, though, before I preferred it to cow's milk. I need to locate some of the Almond Dream, and try it. I'll bet it won't take long to get used to.
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.
-
jodibelle352
- Angel
- Posts: 610
- Joined: Sat Jun 21, 2008 10:57 pm
- Location: Michigan
- Contact:
Hi Gloria:
I've never tried rice milk or almond milk but I'm going to do my darndest to adjust to it one way or another. LOL
I should know by late tomorrow afternoon or Sat. at the latest if going down the 3mgs/1capsule of the Entocort is going to hold me so I can go off it completely or if it's going to cause me to have a flare of the D.
It's my hopes that if I go into this change with a more "positive attitude" instead of being apprehensive and stressed out about it that things just might work. I would still like to get my hands on just 1 person in our Government who is in charge of the health and wellbeing of those of us who only have Medicare for insurance and have to deal with the prescription insurance through Part D. Just put me in the same room with him/her for a day without any interuptions and I would give them some wake up calls in regards to the way hundreds of thousands who are on Medicare have had to skrimp on next to nothing because of very serious mistakes having been made when Part D first went into effect.
Did you know that several thousands of us who had followed to the LETTER the set requirements for signing up with a Rx Drug Insurance giving permission to have the premiums deducted from our S.S. checks to find out a year later that the premiums were never deducted? Yup, you heard me right. David and I were one out of several thousand who thought the premiums were coming out of our checks and it wasn't. Of course the Insurance Co. blamed S.S. and S.S. blamed Medicare for the oversite. David and I were almost $2,500.00 dollars behind in premiums between the both of us before we found out and Humana decided that they would arrange for us to catch up the back premiums as long as we paid an additional $250.00 per month as well as pay our current monthly premium until we were all caught up.
When you have 2 in your house hold with Chronic Illnesses like it is with David and myself this type of over site is devastating to say the least. We just get ourselves out of that mess and now the Insurance Company's have increased the premiums 3 or 4 times the amount we once paid and have now added deductables, increased our co-pays and medications they once covered the NO LONGER cover.
I know that their are sooooooo many who are even in worse shape than David and I and I feel that our Government has been aware of these problems but NEVER once informed any of us it was going on. David and I found out by accident. An article was written a put in the Tuscola County Advertiser titled "Golden Years Tarnished By Non-Payment Of Premiums". We received so many calls from other Seniors, those on Disability as well as those receiving SSI who read our story and contacted S.S. to also be told that premiums were not being deducted and that they were behind on premiums.
The insurance companies explination for this was they didn't inform anyone because S.S. once they deduct the premiums from our checks hold back and don't send the premiums to them for 6-9 and even 12 months. Then they send it all in at one time. HELLO!!!!!!!!!!!! Is that anyway to do business? I DON'T THINK SO!
That's one of the reasons I get so upset. It's because NOBODY seems to know or even care what many of us have had to put up with. I've got a complete folder we every e-mail sent, letter received and I've kept a ledger with every check # and amount and date sent out. The insurance company as well as S.S. wanted us to just have the premiums deducted as we agreed to at the beginning. David and I told them "Screw You! Our original agreement is null and void when you broke the contract. Now we are going to send in our payments each month ourselves so that we know that it's paid!"
Sorry I'm venting so much but at least on these boards I'm able to get things off my chest instead of holding everything inside.
Love and God Bless:
Jodi
I've never tried rice milk or almond milk but I'm going to do my darndest to adjust to it one way or another. LOL
I should know by late tomorrow afternoon or Sat. at the latest if going down the 3mgs/1capsule of the Entocort is going to hold me so I can go off it completely or if it's going to cause me to have a flare of the D.
It's my hopes that if I go into this change with a more "positive attitude" instead of being apprehensive and stressed out about it that things just might work. I would still like to get my hands on just 1 person in our Government who is in charge of the health and wellbeing of those of us who only have Medicare for insurance and have to deal with the prescription insurance through Part D. Just put me in the same room with him/her for a day without any interuptions and I would give them some wake up calls in regards to the way hundreds of thousands who are on Medicare have had to skrimp on next to nothing because of very serious mistakes having been made when Part D first went into effect.
Did you know that several thousands of us who had followed to the LETTER the set requirements for signing up with a Rx Drug Insurance giving permission to have the premiums deducted from our S.S. checks to find out a year later that the premiums were never deducted? Yup, you heard me right. David and I were one out of several thousand who thought the premiums were coming out of our checks and it wasn't. Of course the Insurance Co. blamed S.S. and S.S. blamed Medicare for the oversite. David and I were almost $2,500.00 dollars behind in premiums between the both of us before we found out and Humana decided that they would arrange for us to catch up the back premiums as long as we paid an additional $250.00 per month as well as pay our current monthly premium until we were all caught up.
When you have 2 in your house hold with Chronic Illnesses like it is with David and myself this type of over site is devastating to say the least. We just get ourselves out of that mess and now the Insurance Company's have increased the premiums 3 or 4 times the amount we once paid and have now added deductables, increased our co-pays and medications they once covered the NO LONGER cover.
I know that their are sooooooo many who are even in worse shape than David and I and I feel that our Government has been aware of these problems but NEVER once informed any of us it was going on. David and I found out by accident. An article was written a put in the Tuscola County Advertiser titled "Golden Years Tarnished By Non-Payment Of Premiums". We received so many calls from other Seniors, those on Disability as well as those receiving SSI who read our story and contacted S.S. to also be told that premiums were not being deducted and that they were behind on premiums.
The insurance companies explination for this was they didn't inform anyone because S.S. once they deduct the premiums from our checks hold back and don't send the premiums to them for 6-9 and even 12 months. Then they send it all in at one time. HELLO!!!!!!!!!!!! Is that anyway to do business? I DON'T THINK SO!
That's one of the reasons I get so upset. It's because NOBODY seems to know or even care what many of us have had to put up with. I've got a complete folder we every e-mail sent, letter received and I've kept a ledger with every check # and amount and date sent out. The insurance company as well as S.S. wanted us to just have the premiums deducted as we agreed to at the beginning. David and I told them "Screw You! Our original agreement is null and void when you broke the contract. Now we are going to send in our payments each month ourselves so that we know that it's paid!"
Sorry I'm venting so much but at least on these boards I'm able to get things off my chest instead of holding everything inside.
Love and God Bless:
Jodi
May God and All His Angels, watchover, protect and guide you "One Day At A Time".
-
MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Jodi,
I am hoping and praying that you won't need the Entocort any longer when you get completely get off dairy. It may take awhile but give it your best try.
Cristi posted this recipe for rice milk which looks really easy:
1 cup hot Suchi rice
3 cups hot water
blend in blender for 3 minutes
Haven't tried it myself but it looks ultra easy.
Pat
I am hoping and praying that you won't need the Entocort any longer when you get completely get off dairy. It may take awhile but give it your best try.
Cristi posted this recipe for rice milk which looks really easy:
1 cup hot Suchi rice
3 cups hot water
blend in blender for 3 minutes
Haven't tried it myself but it looks ultra easy.
Pat
-
jodibelle352
- Angel
- Posts: 610
- Joined: Sat Jun 21, 2008 10:57 pm
- Location: Michigan
- Contact:
Hi Gloria:
There are alot of Deep Holes in how S.S., Medicare and Medicare Part D works. When they put this in motion a couple years ago they didn't think ahead at all to any of negative effects that would or could happen. They just went forward and decided, we'll deal with things as they happen and not worry about them right now.
Well............................our health care systems SUCKS!!!!!!!! What irritates me the most is that SOMEONE WAS AWARE of everything that was going on but did NOTHING to warn the Seniors, Retirees and Disabled that a mistake was made.
All I want from our State and Federal Government is some HONESTY. If something isn't going well................................TELL US!!!!! We will be a hell of alot more understanding if we're told the truth then waiting until after the fact just to find out that we've been "blindsided" yet again, again and again.
Another thing Gloria, as a woman you need to be aware of when it comes to Medicare. You are aware of that Lovely Yearly Physical us women are SUPOSE to have? Yuppper!!!!!!!!!! The mammo and pap to make sure our plumbing is in order?
Let me tell you in advance so you don't have a massive coranary when your bill comes.
#1. Medicare covers your Pap Test and your Mammogram.
#2. There's a catch though. Inform your Physician that he/she may ONLY do the Pap Test itself.
#3. Tell your physician that they DO NOT have your permission to give you any other part of a physical exam. As a breast exam or anal exam. They are to only do the Pap Test NOTHING ELSE!!!!!!!!!!
#4. If your physician gives you a complete physical exam. Medicare WILL NOT COVER THE CHARGES and you will get socked with a bill of $150.00 or more because they touched your body!
My PP was really giving me the evil eye a few weeks ago when I needed my Pap and Mammo done. When he came in the exam room I told him point blank. ONLY DO THE PAP TEST!!!!!!!!!! Do not touch me or charge me for doing a complete physical because if you do Medicare will not cover the charges! Doc knew I meant exactly what I said but was not aware of the small print involved with Medicare Billing. Many physician have NO IDEA that if they do more than just a Pap on a patient that Medicare won't pay. My PP now knows.
Does this seem right?????????????????? Hell NO! But that's how the program works and believe me they are not going to tell you a darn thing. Unless you find out from someone who's had this happen to them then you are in for a Whopper of a Bill. Now if you have other insurance besides Medicare you may find that whatever Medicare won't cover they will but you really need to check it out before you end up with a debt you were not expecting.
Sorry to take so long on this but David and I have been dealing with these issues for several years now and we start feeling secure and safe because we've been watching very carefully what's going on and BINGO.............................The Part D insurance companies are now charging 3-4 times more for Premiums and raising our co-pays on medications. Then medications that in Dec. they were covering they are NO LONGER covering. That's why my Entocort went from a $4 co-pay to not being covered at all.
If you have any questions I'll gladly share the horror stories of how the Fed. and State Government does the "Nasty Dance" with those on S.S.
Love and God Bless:
Jodi
There are alot of Deep Holes in how S.S., Medicare and Medicare Part D works. When they put this in motion a couple years ago they didn't think ahead at all to any of negative effects that would or could happen. They just went forward and decided, we'll deal with things as they happen and not worry about them right now.
Well............................our health care systems SUCKS!!!!!!!! What irritates me the most is that SOMEONE WAS AWARE of everything that was going on but did NOTHING to warn the Seniors, Retirees and Disabled that a mistake was made.
All I want from our State and Federal Government is some HONESTY. If something isn't going well................................TELL US!!!!! We will be a hell of alot more understanding if we're told the truth then waiting until after the fact just to find out that we've been "blindsided" yet again, again and again.
Another thing Gloria, as a woman you need to be aware of when it comes to Medicare. You are aware of that Lovely Yearly Physical us women are SUPOSE to have? Yuppper!!!!!!!!!! The mammo and pap to make sure our plumbing is in order?
Let me tell you in advance so you don't have a massive coranary when your bill comes.
#1. Medicare covers your Pap Test and your Mammogram.
#2. There's a catch though. Inform your Physician that he/she may ONLY do the Pap Test itself.
#3. Tell your physician that they DO NOT have your permission to give you any other part of a physical exam. As a breast exam or anal exam. They are to only do the Pap Test NOTHING ELSE!!!!!!!!!!
#4. If your physician gives you a complete physical exam. Medicare WILL NOT COVER THE CHARGES and you will get socked with a bill of $150.00 or more because they touched your body!
My PP was really giving me the evil eye a few weeks ago when I needed my Pap and Mammo done. When he came in the exam room I told him point blank. ONLY DO THE PAP TEST!!!!!!!!!! Do not touch me or charge me for doing a complete physical because if you do Medicare will not cover the charges! Doc knew I meant exactly what I said but was not aware of the small print involved with Medicare Billing. Many physician have NO IDEA that if they do more than just a Pap on a patient that Medicare won't pay. My PP now knows.
Does this seem right?????????????????? Hell NO! But that's how the program works and believe me they are not going to tell you a darn thing. Unless you find out from someone who's had this happen to them then you are in for a Whopper of a Bill. Now if you have other insurance besides Medicare you may find that whatever Medicare won't cover they will but you really need to check it out before you end up with a debt you were not expecting.
Sorry to take so long on this but David and I have been dealing with these issues for several years now and we start feeling secure and safe because we've been watching very carefully what's going on and BINGO.............................The Part D insurance companies are now charging 3-4 times more for Premiums and raising our co-pays on medications. Then medications that in Dec. they were covering they are NO LONGER covering. That's why my Entocort went from a $4 co-pay to not being covered at all.
If you have any questions I'll gladly share the horror stories of how the Fed. and State Government does the "Nasty Dance" with those on S.S.
Love and God Bless:
Jodi
May God and All His Angels, watchover, protect and guide you "One Day At A Time".