Cholestyramine

[terre]

I've been on Cholestyramine for 11 days (2 of those days I only took 1/2 dose)....it causes ringing in my ears, but I decided to put up with that side effect in hopes of D improvement.

I'm wondering how long it has taken for others to see results? My doctor said I could take one to two (4 gram) packets per day. I am very hesitant to up it to two because I don't want the ringing to get worse.

Thanks,
Terre

[tex]

And that's the rub of course — taking a lower dose means that it will probably take longer to see any benefits, and if the dose is inadequate you may never see any benefits. But taking more (and taking if for a longer period of time) might cause permanent tinnitus.

Oh, the joys of playing drug roulette.

Tex

[terre]

Do you have any advice for me? I guess I should try twice a day and see what the outcome is.....maybe the ringing won't get any worse.

BTW, I called my gyno and asked for a script for compounded hormones (bio-identical?) to apply topically to the skin. I will finish the prescription that I take by mouth on Monday and will switch to the topically applied on Tuesday. I figure I need to try this in case the oral is keeping me from improving. Fingers crossed.

Thanks,
Terre

[Gabes-Apg]

Terre
the hard part of giving advice for this stuff is everyone is different - each person has to weigh up the pro's and cons as it applies to them.

my thought is - what is worse troublesome bowel motions? or the ringing in the ears?
also keep in mind that the cholestrymine does not work for everybody.

the other aspects to the effectiveness of the cholestrymine working
- are you sure that you are avoiding all major triggers? food, environmental, stress etc
- what are your Vit D3 levels like? if you are deficient in Vit D3 any medication has limited scope to improve things
- are you stressed about changing to hormone cream? additional stress will also impact MC symptoms

[tex]

Tinnitus effects are usually unpredictable. Often they resolve after a drug is discontinued, but nothing is certain, because we all seem to be affected differently.

The experiences of many members of this discussion board are that topically-administered hormonal treatments may be safer than oral, but for many, topical application can still prevent remission. Again, it's an individual issue, and as Gabes says, the effect depends on how our body reacts to them.

I'm sorry I can't be more helpful.

Tex

[terre]

Thanks Gabes and Tex....your thoughts and advice are appreciated. Sometimes it seems we can't win for losing. I'm not giving up just yet!

Gabes, I'm not stressed about switching to hormone cream.....I just thought the topical medicine would help with remission, but obviously that's not true for everyone. I have no idea what my vitamin D levels are, I am taking 5,000 IU supplement once a day. I am doing Epsom salt foot baths once a day. As far as what's worse the ringing or the D....well, both are troublesome.

As far as what I'm eating, I am reading and trying to follow guidelines and hoping for remission. One good thing is after laying off the beef broth, I tried a small amount last night and no tummy issues....so I will try it again tomorrow.

Thank you both for your help,
Terre

[Gabes-Apg]

if you are deficient / have ongoing inflammation 5000iu per day may not be enough.
it would be worthwhile getting the level checked.

[terre]

I know this has been discussed before, so forgive me for asking....do I have my doctor check this and if so is there a specific test? I guess I should have B level checked also (Hydroxy 25 test or something like that)? I think I've read that Magnesium will not give a true reading due to the body pulling it as needed for constant level in blood?

Thanks,
Terre

[tex]

The vitamin D test is a 25(OH)D, or 25-hydroxyvitamin D test. Your PCP (or any other doctor) can order the test. If your doctor balks at ordering a test, you can order the test that many of us here use, direct from the lab:

https://vitamindcouncil.zrtlab.com/

I have checked their results against the results from the lab my doctor uses, based on blood samples drawn only a few days apart, and the results were right on the money — a perfect match with the results from the lab that my PCP uses. You don't have to go to a lab to get blood drawn for the ZRT test — they send a collection kit that includes supplies for pricking a fingertip, similar to the methods used by diabetics for testing blood sugar.

Yes, unless you're having relatively severe magnesium deficiency symptoms, a blood test will always show normal magnesium levels.

Tex

[terre]

Thanks for responding. I forgot to ask about testing for B vitamins (or would it just be B-12)? Any special test to ask for?

Also, I'm having trouble finding a sublingual B vitamin that doesn't have fructose or stevia.....do you have any suggestions....or would it be such a small amount that I shouldn't worry about it?

Terre

[tex]

B-12 is the most important, so testing B-12 may be sufficient. However, if you turn out to be low in B-12 it could be because of insufficient B-9 (folate), because we cannot absorb and utilize B-12 unless we have adequate levels of folic acid (or the active form, methyl folate). And if we are low in both B-12 and B-9 we may also be low in B-6 (which is necessary in order for the body to produce diamine oxidase which is used to rid the body of excess histamine). IOW it's possible to have histamine issues because we are deficient in B-6.

A lot of the sublingual B-12 products contain either some form of stevia or sugar alcohols (such as mannitol or sorbitol), or both, Too much of any of them are a problem for me, but the small amounts of those sugars in pills have never bothered me.

Tex

[terre]

As always, you explain things in a way I can understand.....thanks Tex. I'll check with my doc during my next appt. and see about B-12 and Vit D testing and if there is an issue with getting the vitamin D test, I will use the lab you recommended.

Terre

[bevfromwa]

Terre, I looked and looked for a suitable sublingual B-12, finally settled on Bio Nutrition 6,000 mcg. It's methylcobalamin and only has Di calcium phosphate, silica, cellulose and cherry flavor. Free of gluten, yeast, corn, dairy, sugar, salt, wheat, soy and preservatives. I don't know why these manufacturers think they need to put all the sugar, real or fake and other garbage in pills, but this seems to be pretty innocuous. I think Tex said about 2,500 mcg is a good dose, so I just use my handy dandy pill splitter and take 1/2 each day. I've also added folate--another one difficult to find in the proper form. I've tried either 800 or 1000, can't tell a difference.

The best source I found for these--and just about everything else--is vitacost.

Hope this helps.

Beverly

[terre]

Thanks for the helpful post Beverly.

Terre

[terre]

Any advice?

As you can see from my first post....I started Cholestyramine on March 1st and was taking 4 grams in the AM (two of those days I only took 2 grams)....no improvement.

On March 12th, I began taking 4 grams in AM and PM (5 days)....no improvement. The only positive is the urgency is not as bad (like instead of going directly to toilet when my feet hit the floor, I can wash my face before heading to toilet in the AM).

I see where folks have indicated that they have been on this med for months (or longer), but I have no idea how soon they saw improvement. If I saw improvement in D, I would be glad to continue on, but just wondering how long to give it for improvement to be seen. I am following the guidelines for meals, but obviously something is not working.

Also, I've noticed that some posts indicate that their D is worse in the AM and for the most part that is also true for me.....why is that?

Thanks,
Terre

PS: Ringing in ears continues, but did not seem to get worse when upping the dose.