Genetic Disorders Forums

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its long like capsual its white with a A or upside down V on one side and 150 on the other ## white capsule with an upside down V 150 on one side and blank on the back side. ## I have these pills in my jar of CVS pharmacy chest congestion relief. It's suppose to be 400 mg guaifensin and 20mg dextromehorphan. However, in the save jar I found other pills with TCL 280 that have also been identified as guaifensin... go figure! ## Did you find out what they were? ## Generic mucinex dm. I buy them for my dog

4 REPLIES Updated in Kalydeco

I was Dx with Mitochondrial Myopathy in 9/09 after much testing and labs and finally by muscle biopsy. I was recently told by my neurologist that there had been some research done revealing their effectiveness of Leucovorin in helping to control the duration, intensity and frequency of muscular spasms and cramping, sometimes crippling in its active phases. I began this therapy and within just a few weeks I was having less intensive cramping, the duration was even for less amounts of time. It became more tolerable. It did not do much in controlling the weakness and fatigue I felt but any relief was greatly appreciated, The local pharmacies had to pool their supplies to fill my prescription, I guess my dosage was higher than the usual. It was in a word experimental. I was taking 75 mg eve...

2 REPLIES Updated in Leucovorin

My 48yr Brother is Suffering From Ochronosis. Can We Buy Tab Nitisinone in Indian Market? Please give me the details in this regard. ## Kindly let me know if NITISINONE Tablets are available in India. If yes, then I would also like to know the source for purchase of the same. The Drug is required for a child of 3 years who suffers from heart irregularity. ## please give address & contact details of medicals in india from where Orphadin - Nitisinone drug is available. ## I want nitisinone tablet for my 2 years baby..suffering from tyrosinemia desese ## Is Nitisinone available in India for the treatment of albinism. If tell me the source. ## Is Nitisinone available in India. What is the address of the shop where it is available. Is it use for albinism. What is the price & how it u...

6 REPLIES Updated in Nitisinone

Im turning 20 on 2/9 and i have been taking orfadin since i was 6 months old.because i have been diagnosed with tyrosinemia. I was supposed to get a liver transplant but this new mediction saved me from it. I take 48mg twice a day. Doctor prescribed but i feel it is too much. Thoughts? ## I think that in such a situation, with such a dangerous medical issue, that your best and safest bet is to follow your doctor's instructions, because they are going to know more than anyone else. Learn more Orfadin details here. If they've kept you from needing a transplant for this long, I'd say they're doing pretty well, so far. And congratulations to you on such and I hope you have a fantastic 20th birthday. Is there anything else I can help with? ## DO YOU NEED A PRESCRIPTION FOR NI...

2 REPLIES Updated in Orfadin

my son is suffering in tyrosinemia type-1st. Treatment is only capsule orfadin (salt, nitisinone) if any body have any information related how i can find this medicen in india or address of any authorized medicare in india, please let me know {edited for privacy}. ## Hi Rouf, Sorry to hear about the condition your son is in. I don't know what the laws are like over in India regarding Orfadin (Nitisinone) being available over-the-counter or via prescription-only (as I am here in the US where it is classified as a prescription drug). But it sounds to me like it may be a good idea to contact the doctor who originally diagnosed him with this ailment and see if he/she knows where to find the medication that was recommended for treating it. You could also just walk into any pharmacy there...

1 REPLY Updated in Nitisinone

Where can I buy Urolene Blue please? {edited for privacy} ## Methylene Blue (aka Urolene Blue) Where can I buy pharmaceutical grade MB so that I can shadow the 'REMBER" trial. thanks

1 REPLY Updated in Urolene Blue

side effects of this drug and what is it used for ## Actimmune contains a bioengineered formation of interferon gamma. It's a protein that acts as a biological response modifier, it's used to stimulate your immune system. Side effects may include: headache, fever, diarrhea and vomiting. You can learn more about it here: Is there anything else I can help with? ## All of my joints ache and my back never stops hurting is this just part of the side effects or should i be concerned?

2 REPLIES Updated in Actimmune

Tab orfaden(Nitisinone)can be used for Alkeptonurea or Patient suffering ochronosis disease approved by FDA America.As per my idea INDIA has got no such drugs to treat this rare genetic disorder decease.May I ask your Medical team to advice me to treat my 48yr Brother Who is having this above disease, for the last 10yr.The said disease is diagnosed by Rheamotologist in INDIA. ## Please meet Dr . Amin .Sanjeev at mumbai

1 REPLY Updated in Nitisinone

My sister has parkinsons and quite a lot of movement. Has this drug been tried for parkinsons? ## Tetrabenazine is actually contraindicated for the treatment of Parkinson’s [1]. In other words, it might actually worsen the symptoms of Parkinson’s or parkinsonism. Do you have any more questions or information to add? Please post back if you do. References: [1]

1 REPLY Updated in Tetrabenazine

My 65 yr. old brother has Huntington's disease. Just learned that Tetrabenazine has been approved by the FDA this past year. Is anyone out there being treated with it, your results, price of it, and where can i Purchase it. Thanks... ## This past August, the brand Xenazine (Tetrabenazine) was approved by the FDA. Apparently the process for acquiring a prescription is more complicated than many other medications. You can view the support information for this drug at the manufacturer's web site (Ovation Pharmaceuticals): A quote from their page: "REACH is an integral part of the Ovation Pharmaceuticals commitment to ensuring that patients who can benefit from Xenazine therapy gain access to it as quickly as possible. REACH programs help eliminate administrative and financial b...

1 REPLY Updated in Tetrabenazine

Tetrabenazine is a new drug awaiting FDA approval for huntington disease that helps with spasms. What website can I visit for information concerning new medicines awaiting approval from the FDA? ## It says it is already available on a named patient basis, which means your doctor has to contact the company and request it just for you, as it is not yet available on the open market in pharmacies yet. They do have a page with instructions: Tetra Page Tetra Info This page has more info on its use.

1 REPLY Updated in Tetrabenazine