Sorry I need to vent at pharmaceutical companies - part 2

[Cog]

I hope someone from a pharmaceutical company reads this in the hope that they realize the negative impact on what they call inactive ingredients are on patients

So today I was informed by my Doctor that at least two of the tablets I am prescribed contain potato starch. One of the tablets I have been taking for 16+ years
I have specified that potato is an allergen for me since the 1990’s
I know from experience that potato starch and wheat upsets my crohns. No french fries and no bread

I have tried in the past to contact the pharmacy companies to find out out what the non active ingredients are - to be told they do not know and they can change - not helpful in many ways deceitful

I know from experience that I cannot put wheat down as an allergen because again the drug companies do not specify the ingredients so I cannot get the prescription

Pick your poison

I can go into a supermarket pick up a processed food and for the most part have an idea of the ingredients - try explaining that to the pharmacist

Credit to to the pharmacist that actually read my allergen list and found out the tablets concerned
Clearly all my doctors over the years are not made informed - trust me there have been many again responsibility is with the pharmaceutical company to inform

Why has it taken the industry so long to figure out that inactive ingredients can have an adverse reaction?

This is not rocket science

So for years I have been taking these tablets and now I find out the root cause of headaches

Some folks I know have more severe reactions to certain ingredients - which sadly may be a reaction to the inactive ingredient rather than the active one

How does a patient know if a drug is giving them a bad reaction or the inactive ingredient?

"You will just have to put up with the headaches if you want to keep your condition under control"

And now I find out (because of one diligent person) that the have laced the drug with something that is a poison to me
My point is that if a patient is prescribed a medication they should be informed about the ingredients. Telling me all the side effects and complications are wonderful - not so helpful

Allow patients to make more informed decisions and allow for open discussions with Doctors

You are not giving away trade secrets here

 

[my little penguin]

@Cog
One thing that can be helpful when asking
“Is it safe for a person with a life threatening food allergy to take drug xyz manufactured by your company ?”

“When this drug is produced is it produced on the same lines or same facility as other products containing my life threatening allergen xyz?”

Get a letter from your board certified allergist stating you are allergic to xyz .

We have not had any issues with drug companies and inactive ingredients when stated above
But my child has life threatening (anaphylaxis) to tree nuts and fish so we are very clear of the risks involved to the drug company

The pharmacy also flags drugs for us.
Additional sites like drugs dot com or drug interaction sites are extremely helpful

 

[valleysangel92]

I have had coeliac disease since I was 14, I have very severe disease and my lips swell at even a trace of gluten so I absolutely understand how important it is to know what's in everything you put in your body.

In the UK, all potential allergens have to be clearly marked in the pharmaceutical guide book used by physicians, they also have to be on the label of the medicine box and all non active ingredients must be listed on the patient information leaflet even if they aren't a common allergen. From what you're saying this obviously isn't the case in the US which surprises me to be honest.

In the UK if the doctor doesn't know the allergens in the drug then the best person to ask is the pharmacist, if you could find a really good one they may be willing to try and filter out brands that aren't safe for you. If this can't be done and you can't get a safe version of the med its the doctors responsibility to work an alternative out.

I agree with MLP, even if you have to play it up a little, stress the seriousness of your situation, don't let them play it down as just getting a headache or something.

 

[Cog]

Thanks to you both

 

[Cog]

Today I spent 45 minutes on the phone with a a very nice pharmacist going through my drugs to identify the ingredients

My conclusions:

Drug 1 - 7 manufacturers: 5 with starch and no information on which starch it is derived from. 2 had no starch at all but only one is available on my drug plan
Drug 2 - 12 manufacturers:10 described the ingredient as 'starch' no further information 2 could provide a liquid option but they contain alcohol - so my next question from which grain is the alcohol derived from - my guess is wheat - I am hoping for a call back from one manufacturer on Monday

If you enter any starch based product like wheat or potato as an allergen - the pharmacist cannot prescribe the medication because they do not know the source either

The deception of these drug companies intentionally or otherwise is disgusting - one extra word in their ingredients and we all would have saved time

On the lighter side of life when we reviewed the ingredients

Why would you add sodium lauryl sulphate (as you find in shampoo and household cleaners) in a drug?

Why would you add a stool softener in cholesterol lowering drug? Polyethylene glycol - Miralax's active ingredient! and yes this was an inactive ingredient for this drug

Now I am emailing the manufacturers to see if I can get an answer

Thanks again for listening

 

[my little penguin]

Which starch bases are you allergic too ?
Can a compound pharmacy help ..
More than a few allergic kiddos I know use compound pharmacies so then they exactly what is in the med -no extra unknowns