Saw Doctor Yesterday - Forgive my memory if I already posted

[Linda in BC]

Hi Rich;

I am so pleased to hear of the positive changes in your condition, your life/attitude and your work schedule! The neat thing about life is that we all get where we are going eventually, it just may take us a little longer when we slow down the pace of our journey; but taking a little longer to get there may actually make the journey more enjoyable, and give us longer there once we do, and a better destination to enjoy! Blah, Blah.. I am rambling but hope you know what I am trying to say...

I have made a purchase from allldaychemist.com before and was very pleased with the transaction. You do not need a prescription and that fact is serving me well again as I had to order entocort from them just yesterday. My doctor only gave me a one month prescription for Entocort ( I had thought it was three) and when I realized this and tried to make another appointment with him to get more, I could not get in to see him until Nov. 1, because he is away. It took a month to get it from the online "Canadian" pharmacy I ordered it from before ( that had to ship it to the US) and if I wait until Nov. 1, I will run out for sure, before I get more. So I just went ahead and ordered it myself from India. It takes a while to get here from them also (allow a month) but am hoping, now that i am down to 6 mg /day, that I will have enough to last until the new script gets here. This way, too, I feel I can taper down at a pace I believe will work and, as Ant said, not have to count on my Doctor to listen to my pleas to continue if he wants me to stop it sooner than I think I should.

By the way, for any other Canadians on here wanting to order form alldaychemist.com, this time, when I went to place my order, they responded saying that they cannot deliver to Canada anymore "because of customs issues." Luckily I can get it delivered to the US and just go down across the border and pick it up myself, because we are so close.

Best regards and fingers crossed for your (and everyone's!) continued improvement,
Linda

[ant]

Dear Rich

I do believe that MC has shown me the good side of slowing down.... I am stopping to smell the roses and making plans to live a bit more (more about that in a few months, if those plans come to fruition)

I think you already have the answers about the generic.

I may have to go "covert ops.

Yup, I went "covert ops".

Best, Ant

[Gabes-Apg]

Rich

I am pleased that my 'tough love' helped! i saw alot of similaraties in yourself that i went through 3 years ago (when my MC symptoms made their first appearance)
it took me 2 years to move on an accept the change that was happening with my body and my mind. and i only did the final acceptance when i had the MC diagnosis.

dealing with the MC cheeky monkey is very reliant on mental. meds and diet can only do so much, having the right attitude about the symptoms, what treatments to use, any limitations, the progress that is made towards remission is really important.

sounds like you had a good appointment with your doctor, i believe that if you show them you have a strong grip on what you are doing to manage the symptoms then they will not challenge you. remember it is difficult for majority of the medical profession to have a patient with ongoing symptoms, they are conditioned to write a script and the pill will fix it...

have a great weekend

[tex]

Linda,

Thanks for the heads-up on the Canadian Customs change of attitude. I am really concerned that with the ill-conceived health care reform bill that was recently passed in the U. S., the same thing will be happening in this country at some point in the near future. I believe that if I were contemplating a need for budesonide in the near future, I would go ahead and order a supply now, because once the regulations are changed, "that's all she wrote" - that door will probably be closed forever, (or until the next congress decides to change the laws, and/or the next administration decides to "enforce" them differently). Such imports are currently illegal, but the administration has ordered Customs to allow shipments to individuals to pass through, while confiscating wholesale shipments. Unfortunately, that status could change at any minute, with a single phone call.

Tex

[hoosier1]

Linda, Gabs, Tex, Ant, all:

Yep, the "tough love" worked. I submitted :) I grew tired of resisting. My attitude was going against my motto of trying to simplify my life. Like I said earlier, it is just one more feature of me.

And I just ordered my backup supply on Entocort generic online. I do have a question about what I just ordered. Do you find it to be "as effective" as the name brand drug? For the price of the name brand drug, I may as well be ingesting pure gold.

I think I am going to stay on the full dose through the end of the year. This order will help me to do so. A month to get it to my door though seems like a long time to ship. Nevertheless, it is nice to have as an option, at least for now. I share Tex's fear about the changes to our healthcare system limiting our options (and our freedoms... but that is a political rant that I will avoid for now) on this affordable drug going forward. Our government will screw it up.

Regards,

Rich

[Gloria]

I think I am going to stay on the full dose through the end of the year.

That sounds like a good plan. I'm considering doing the same thing. I read an older post which said that the recommended time for reducing the full dosage is to wait until you've had 3 full months of Normans. I'm on week 6 right now, so the new year will put me at 3 months.

I know there are others here who have been able to decrease the dosage after just a few weeks, but they have typically seen quick results and have not seen any deterioration when they've reduced.

Tex,
I too, was alarmed by Linda's experience with Canadian Customs shutting down the out-of-country prescription orders. My prescription costs haven't increased for next year, but DH plans on retiring in April of 2012. It sure would be nice if I could maintain on a smaller dosage by then, but that's a big "if."

I guess I'd better order a supply from overseas while I'm still able to. If I don't need it by 2012, I'll just add it to the pile of other foods/supplements that I've purchased in quantity that I no longer tolerate...

Gloria

[tex]

If I don't need it by 2012, I'll just add it to the pile of other foods/supplements that I've purchased in quantity that I no longer tolerate...

I hear you. I bought a lot of stuff that I couldn't use, also, while I was recovering.

I believe that one of those sites, (it may be alldaychemist.com, but I'm not sure), mentioned somewhere that they are able to get up to a 3 month supply through customs, (implying that larger shipments may be confiscated. Anyway, anyone contemplating ordering more than that at one time, might want to check with them before ordering.


Rich,

A lot of that shipping time is wasted as the package sits in line, waiting to get through Customs.

As far as I'm aware, everyone using the generic product has been satisfied, and no one has reported noticing any difference between it and the product made from gold.

Tex

[wonderwoman]

I have 48 Entocort brand name and 300 generic on hand. I am taking one capsule a day and Nov 1st I will try eliminating 1 capsule a week and see how that goes and then eliminate a 2nd one. At that rate I should have enough for over a year. That is unless I have a flair and need to increase the dosage. If we only knew what the future holds regarding our needs and the availability of the drugs.

I have had 1 Norman a day for over two months, with an occasional 2nd BM later in the day that tends to be a little softer but no D. Praise the Lord.

[ant]

Dear All,

For me the generic worked just fine. Indian "gold" seems to be the same as western "gold", just cheaper to buy.

I have a stock of it in my fridge.

I have a question that may be relevant for anyone else wanting to stock up for an uncertain future. Should it be stored in the fridge, or cold the fridge be too cold? Also I wonder how long the pills remain active if stored in ideal conditions (whatever those conditions are)?

Best, Ant

[tex]

Ant,

The standard label recommendation for virtually all medications, including vitamins and minerals), is to store the product at 77 degrees F, (25 degrees C), and away from light and moisture. Brief storage between 59-86 degrees F, (15-30 degrees C), is permitted. I've seen that on virtually every label that I've checked, (including Entocort EC). I used to keep my vitamins and meds in the refrigerator, (back before I took any meds regularly), but after I started taking prescription drugs on a regular basis, I checked out the storage recommendations, and found that they are universal, so I now store them at room temp. Since they all have a one-size-fits-all recommendation, though, I seriously doubt that temperature is all that critical. In general, higher storage temps will lead to accelerated deterioration, while lower temps make them vulnerable to moisture condensation, (and therefore possible deterioration due to excess moisture).

The biggest problem with storing drugs in the refrigerator, (IMO), is the fact that every time you take them out and open the bottle, warm air will enter the bottle, and warm air can hold more moisture than cold air, (due to the laws of thermodynamics). Even though the air inside your home might check out at only 50% relative humidity, (at 21 degrees C), as it cools down inside the pill bottle, it will become more saturated with moisture, and it may even reach the point where liquid water precipitates out, if the temperature difference is great enough.

Taking a pill out every day, will provide a fresh source of moist air, on a daily basis, which sets up the potential to precipitate out additional moisture, every day, as the air inside the container cools down. This can steadily degrade the product, of course, because most products store best at about 50% relative humidity, (or less), and as the humidity approaches 90 to 100%, some medications, (especially tablets and lozenges), may begin to break down fairly quickly.

Now if you happen to reside in Alaska, and the temperature inside your igloo is always near freezing, then low temperature storage will be fine, because the air in your igloo will always be just as dry as the air in the pill bottle.

Tex

[hoosier1]

Thanks for the feedback everyone. I think "stocking up" looks like a good idea. I may be placing a second order very soon just to do that.

Glad I stumbled upon this group. Had I not, I would have been tapering off Entocort way too soon.