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Need Your Help Please


Tessa
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Since my last app. with the Cardiologist and the TTT I am still trying to find a Pharmacy where they can compound FLORINEF without Lactose.

I have been surfing the Net, called many, asked others, etc. And I am still blocked without access to my prescribed treatment just because - up to now - they say no, we cannot compound Florinef without Lactose.

It seems that I have no right to getting the treatment that can help me to cope better with POTS just because I am intolerant to gluten and casein. This is unfair. I feel hopeless and sad. :)

I still have symptoms, I am still feeling sick when I keep standing... And I need this drug.

I am sure that there have to be many people out there with the same sensitivities that I have (gluten and casein) who need Florinef and there must be a Pharmacy who can compound it. Don?t you think so?

But where & who?

As it would be very difficult for me to call all the Pharmacies in different countries, it would be of great help if you could ask your usual Pharmacy if they can or know a Pharmacy where they can compound Florinef without Lactose.

The more of you asking, the more chances to find it.

Please, I need your help.

Looking forward to hearing from you and thanking you all in advance for your help and collaboration,

Love,

Tessa

Edited by MightyMouse
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good ppl and they compound some of their own medicines- worth a phone call.

Fisher's Specialty Pharmacy Services

Web Site: http://www.spsdrug.com

Address: 3904 Perrysville Ave.

Pittsburgh, PA 15214

Phone: 412-231-3777

Fax: 877-231-8302

Email: pharmacist@spsdrug.com

Hotline: 888-347-3416

We are an independent, full-service pharmacy specializing in infertility, hepatitis , and HIV mediations and are dedicated to high quality service. Our staff is experienced and focused on meeting your needs. At Fisher's SPS, you get the health care you need and the service you desire at a price you can afford.

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I called the compounding pharmacy I use for hormones and they said they would check and call back, but they haven't called yet and won't open again till Monday. They are Signature Pharmacy in Orlando (they mail) 888-323-7788. Good luck.

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Guest tearose

Sorry you are having so much trouble. There are two compounding pharmacies near me but will that even help you? You need one near you, right? I can ask if it can be done and how if you need me to. I suppose another approach is to call the maker of Florinef and ask for them to recommend a place you can get this compounded from.

I hope there are some answers for you soon.

take care,

tearose

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I wanted to chime in to second Tearose on a point: Call the drug company itself, or write to them. It's important to them, I'm sure, that their product be as availible as possible to their customers...that's simple good business logic. So, I'm sure your feedback will be valuable to them...and probably to other patients who might encounter the same problem as you are having now. Also, they might be the best authority to help you find a distributor close and convenient to your location.

Good luck!

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Tessa,

I don't know if this helps you since you are not in the states, but my ANS specialist strongly believes that milk is a big culprit for many POTS/NMH patients and he always refers me to the following pharmacy, which he says does a good job with compounding meds without too high fo a cost.

Abrams Royal Pharmacy

8220 Abrams Rd

Dallas, TX 75231

Tel: 214-349-8000

Fax: 214-341-7966

He requests the meds to be 'compounded without milk protein, lactose, or other food protein additives'. (I just had this email exchange with him a few days ago).

Unfortunately, many, many meds have some form of lactose in them. It's very common and very difficult to find meds without lactose. Also, if a medication is still under patent, it cannot be compounded.

Hope this helps,

Emily

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Thank you all for your help and contribution. You are lovely, my friends.

:)

I am sorry I did not answer to your posts earlier, but I had a terrible flare up of symptoms this weekend and I am still not feeling the way I felt before it.

I still feel weak, sometimes exhausted...

Your help has been most helpful.

Emily, I found that the Pharmacy you mention has Florinef without Lactose. I have a dear friend in Texas who is trying to get it for me.

:)

Again, thank you all for your help.

Take care,

Love,

Tessa

P.S.: I need some rest now... Hope to log in tomorrow.

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I don't have any help, but I think it's ridiculous that lactose is such a common ingredient in medicines- surely there's an allergen-free alternative?

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Tessa,

I am so grateful I happened to see your post and you might be able to get the medicine you need. I REALLY trust my doctor to choose a reputable pharmacy and he uses this one for his highly allergic patients.

Megan, et. al.,

I don't think there are probably enough people out there who are THAT allergic to lactose or forms of it (like you'll see lactate this and lactate that in pills) to make it worth the companies creating meds without the lactose.

For those that are though, it is a HUGE expense, and also a huge challenge if the meds are still under patent and can't be compounded. I think it's just a useful binding agent.

When I called my local pharmacy that does compounding they were like you want this medication WITHOUT LACTOSE????? As if I was the first person who ever made such a crazy request. The dude had to go searching forever for a formula to make the med! Lesson learned--go with the experienced pharmacy that Tessa is using! ;)

Emily

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If you're just lactose intolerant (like I am) you can just take lactase pills before you have anything with lactose in. Problem solved!

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If you're just lactose intolerant (like I am) you can just take lactase pills before you have anything with lactose in. Problem solved!

Thank you, Tanzanite, but I am afraid that I am intolerant to casein, which makes it impossible for me to consume dairy. :lol:

Yes, Emily I got the same question when I asked it without Lactose for the first time at the Pharmacy... Without what? ;)

My Cardiologist, Chemist, Pharmacy, etc. have been checking around and there is no other drug as Florinef, because it is the only one including the fludrocortisone acetate, which seems to be so good for me...

I just hope I can get it and try it, in fact, that?s the only way to know if it is effective with me... You know, we all react in a different way to the same drugs.

Looking forward to get a light soon and thanking you all for your contributions, comments, suggestions, care and help,

Love,

Tessa

BTW: I am better from the last flare up...

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Tessa,

How did you figure out you were insensitive to milk proteins to the point that you needed them out of your meds? You must have been really savvy to figure that out!

I never thought about it until I saw my current ANS doc and he was the one who said that about 30% of his patients are dairy intolerant (and yes, you are right it is to ALL milk proteins--so you need to avoid whey, casein and lactose) And, taking pills like Tanzanite suggested won't deal with the issue.

He said that most are not so sensitive that they can't tolerate milk in their meds, but he suspects that I am one of those folks! Lucky us, right?

Do you notice an improvement in your POTS and GI distress when you stay away from milk products?

Just curious!

Emily

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How do you figure out if you are dairy intolerant? Do you just eliminate it all and see if you improve?

And how do you know if it is just lactose intolerant or dairy intolerant?

I know that milk makes me feel much worse but I've never known if I'm completely intolerant, or if it's just hard to digest and so it makes me tired.

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How do you figure out if you are dairy intolerant? Do you just eliminate it all and see if you improve?

And how do you know if it is just lactose intolerant or dairy intolerant?

I know that milk makes me feel much worse but I've never known if I'm completely intolerant, or if it's just hard to digest and so it makes me tired.

There are tests doctors can do. But one you can do yourself is something like drink 2 glasses of milk together, wait a few hours and see if you react. Then on another day eat lots of cheese in one go. If you react to the milk and not cheese you're lactose intolerant. If it's cheese then you're allergic to dairy.

With me, I suspected it when last year I had homeopathy hayfever pills. As it's pretty much all lactose, after taking a couple, within a few hours I had awful stomach pains, gas, felt sick, and then had an upset tummy. It happened everytime I took them.

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