The Superficial Siderosis charity

Feriprox and food

 

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As a rule, basicly …...                                                  

 

Only a fool breaks the 2 hour rule.

 

I will explain my findings however if you want the bear basics, do not eat foods with Iron, Zinc or vitamin C three hours prior or after taking Feriprox, and if you cant be fussed with the intricacies, just don’t eat during these times. 

 

I eat a nutrition shake at 7 (finished at most by 8), I have a Nutrition bar between 8 – 12, at 12 I take one Feriprox (as well as a few other drugs), between 12 – 4 I have another Nutrition bar then a healthy meal at 5 then a nutrition shake at 7 (finished eating at most by 8) then at 12am I take another three Feriprox. As you may of worked out, the time gaps for me are 4 hours, his works fine for my lifestyle, yours may be different however above all don’t break the 2 hour rule unless you have scrutinised what you are ingesting.

 

I asked Dr Levy 'According to the Food and Nutrition Information Center of the USDA, the Recommended Dietary Allowance (RDA) for iron is 8 mg per day for males ages 19 and older, 18 mg per day for women between the ages of 19 to 50, and 8 mg per day for women ages 51 and older (http://www.sharecare.com/health/minerals-nutrition-diet/recommended-dietary-allowance-iron-diet 18/07/15), as suferers of SS, can you tell me what is our RDA?' His answer was 'Ideally, you should get the same amount of iron as everyone else. Reducing your total iron intake is not going to re-distribute the iron from your nervous system back to your circulation. It’s just going to make you iron deficient. With Ferriprox, I encourage my patients to take the drug during the week with reduced iron intake.' Dr Levy has also mentioned 'You should avoid tablets containing vitamin C, iron and zinc. And you should avoid these supplements in any form (liquid or food) 2 hours before and after taking Ferriprox.'

 

I have been taking the supplements in a smoothie with the Non-heme iron 2 hours before Feriprox to be sure that they do not coincide, with the Drs advice this seems to be ok however to be sure I checked this with him. I asked 'I have been taking supplements in a smoothie with Non-heme iron 2 hours before Feriprox to be sure that they do not coincide and have much more energy, is it ok to continue like this? Dr Levy replied 'The best way to know is to check monthly ferritin levels. If the Ferriprox is chelating your total body iron, ferritin levels will decline over time.' I have chosen to be the Guinni pig in this ferritin level test. 

 

On a personal note, I have been taking supplements for almost a month with physical results that are great. I had a weigh in on a Lean Protein Estimator (that estimates body composition) for the third time over three weeks and have lost 3% in body fat, a lb in visceral fat, gained 4 lb in muscle mass, my hydration has gone up 1% and my BMR has shot up (I have much more energy), due to the SS I have regularly had an upset stomach however this has cleared up with my programme above. Since day 1 of this experiment my body wants to GO at 6 – 7 am every day, my restrictions are my health though, with Superficial siderosis (http://www.thesilentbleed.co.uk) and post shoulder operation rehabilitation, I am restricted in what I can do and the pain drains me fast. As soon as this shoulder is healed, I will be in training and with good nutrition in me I shall attain my fitness goals.

 

So there is the my diet to date. I will monitor my ferritin levels and keep you informed.

JR June 2015

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On the 17th June 2016 I had an MRI and on the 20th June a lumber punchure, I await results.

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