Nemaline Myopathy Support Group

Resources

Drugs, supplements, vitamins and additives

Should you be taking them?

Disclaimer!.
The following details are for reference only. You MUST seek professional advice from your doctor before taking ANY drugs or supplements.
Drugs and supplements can have side effects or react against any drugs you are already taking. You may do more harm than good by trying out a drug "recommended" by a friend or a website. This warning also applies to non-prescribed vitamin/enhancements drinks and tablets which are available. Sometimes these don't have scientific evidence to back-up claims or have not been approved by government departments. Always research products fully, and discuss them with your doctor, before parting with your money. And if you find any interesting websites about similar products(good and bad), then please give me the links to post here. I accept no responsibility for any damage caused by using this information.

Statins warning
I have been on blood pressure pills for about 6 years now and so far no side affects.
Be VERY wary of taking any STATINS for high cholesterol though (Lipitor, Crestor etc) as they adversely affect people with NM by permanently damaging the muscles causing muscle weakness. Very devastating and it happens really really fast once you start taking it. You don't get back to where you were before taking the statin drug either so you end up really damaged.

Antibiotics used by the NM egroup members

Pulmozyme

  • Taken for : pneumonia and chest infections

Clarithromycin

  • Taken for : chest infection
    I find this much faster acting than penicillin based antibiotics.
    David McDougall

Zithromax

  • Taken for : pneumonia and chest infections

Synergis

  • Taken for : RSV




Drugs used for various NM related issues

Reflux

  • Country : UK
  • Drug : domperidon or ranitadine

Secretions

  • Country : USA
  • Drug : glycopyrrolate
  • Rating : good
  • Note : My son Eli takes this. It's function is to diminish the volume of gastric secretions and controls excessive pharyngeal, tracheal, and bronchial secretions. We noticed a big difference in the amount of his secretions when he started taking this. We get it made in compound liquid form so we can put it right into his g-tube without having to go through the hassle of crushing a pill. Michelle, mom to Eli




Vitamins and supplements

These are my unofficial statistics of supplements used by some of the members of the NM chatgroup.

Carnitine

Download PDF file

  • Possible benefits : More energy
  • Age group concerned : 0-10
  • Benefit : Small=1
  • Comments : My daughter uses carnitine and has been for about 6 years now. She gets 5ml 3 times a day. I definitely see an improvement in her energy levels when on it. Looser bowels is only side effect. (Age group 0-10)
  • Possible benefits : More energy
  • Age group concerned : 0-10 and 20+
  • Benefit : Small=1 and Non=1
  • Comments : At one point we used creatine, but with no effects other than it kicked in premature puberty. This ended when we ended the creatine. (Age group 0-10)

L-tyrosine

Download PDF file

  • Possible benefits : More energy, reduce secretions
  • Age group concerned : 0-10 and 11-20 and 20+
  • Benefit : Small=2 and Small=1 and Small=1
  • Comments : Test liver and kidneys regularly. Our daughter uses an Australian brand (Musashi) which is 100% pure. Available on prescription.
    Three days after my son started taking it we noticed a tightening of his facial muscles. He also started moving his neck where there was virtually no movement before. His antigravity limb movement improved also. It made a small difference to his secretions at first but nothing dramatic. (Age group 0-10)

    Slightly less secretions at night and a bit easier to cough up mucus plugs during the day. (Age group 20+)

Coenzyme Q10

Download PDF file

  • Possible benefits : -
  • Age group concerned : 20+
  • Benefit : Small=1
  • Comments : Taking more than suggested brought on slight depression. (Age group 20+)

Creatine

Warning about Creatine
An item on the BBC News program today (19.8.99) warned of the possible damage to the liver caused by taking more than the recommended dosage of creatine. Body builders are particularly at risk as they want quick results. Some people with NM have tried taking creatine. Few have noticed any effect.

Useful links

Carnitine or (L-carnitine)

L-carnitine is created in the body from the amino acids lysine and methionine. It is found naturally in many foods, but can also be taken as a supplement. Some foods contain higher amounts of carnitine than others. See this Wikipedia page for a list.

This is a quote from a parent whose child has NM.
" This past summer, we tried her on Carnitine and saw a surge of energy for a couple of weeks. She started throwing up because of it and there really was no significant benefit that I could see, not to mention the potential for aspiration so we have since stopped it. She's better without it actually, but it was worth a shot to see what would happen."

I have an email from an adult who uses L-carnitine. Please email me(david@nemaline.org) if you would like a copy forwarded.

Useful links

Coenzyme Q10

I have an email from an adult who uses CoQ10. Please email me(david@nemaline.org) if you would like a copy forwarded.

Tyrosine

A few parents have tried giving tyrosine to their NM child. Most report little or no change. A study for NM treatment is running in Australia. Results will take some time. Any news I receive will be posted on Dr. North’s page.

We use the NOW brand of pharmaceutical grade l-Tyrosine - Sharon Smith, USA


We use Tyson Nutraceuticals. They provide supplements to doctors and hospitals. There are no fillers at all in the L-Tyrosine. We've tried several supplement brands and had problems dissolving them fully in water so they didn't clog Liv's tube. - Sharon Fiedler, USA

Tyrosine is naturally occurring in the body and there are many supplements that contain it as it helps overall brain function among other things. So many people take it as a supplement for day to day use even without NM. My girls take 1000mg a day in 2 x 500mg doses. The brand we get is Musashi.....which I believe is available in health food stores and comes as a powder. I think they also sell online. There are several places in the US where it can also be bought as a powder. It should be a fine white powder and not Crystalline. That dose has been consistent since they were around 2 yo and I don't think it will increase any more. 1/4 tsp is about 250mg. Eliza has been taking it now since 6months and she is nearly 10 with no adverse side effects, but with significant benefits especially when she was very small. - Darren, Australia

L-tyrosine study
A doctor in Australia has started (2014) a study of the effects of tyrosine in patients with congenital muscular disorders. Several people with nemaline myopathy have taken part. Contact davidmcd_@hotmail.com for details if you would like to join. Closes April 15th 2014. Results are expected later in the year.

Useful links

Miscellaneous

  • Oxandrin
  • Actenol is a drug that is taken once a week and is supposed to sort of "reverse" bone loss.
    I've been taking it for 2 years and the last scan I had showed slight improvement.
    Kathleen
  • Taurine is found naturally in food, particularly seafood and meat. It is also used in many energy drinks. Taurine is essential for cardiovascular function, and development and function of skeletal muscle, the retina and the central nervous system. See this Wikipedia page for more details.

Plant a tree for NMSG

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Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
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