Food and drink
Q: Chewing. I recently started having difficulty in chewing my food. Even eating something that is not that tough results in my jaw feeling tired. Could that be a symptom of SS?
A: Yes, if the siderosis involves the lower brainstem, that could impact the muscles of the face and jaw leading to weakness and fatigue of these muscles.
Q: Appetite. I am losing appetite and losing interest in food and I don’t understand why. Could it be related to superficial siderosis? To note, I am not on Ferriprox anymore due to my episodes of sepsis in the past.
A: Appetite is a complicated sensation that is not usually due to superficial siderosis. Some medications can suppress appetite. Commonly, depression changes appetite and leads to weight loss.
Q: I try to eat a healthy diet but I worry that I'm eating too much iron. My ferritin is 10 and iron is 17, could the Ferriprox be just working on the iron in my blood and not getting to the iron in my brain?
A: The Ferriprox is certainly chelating iron in your entire body, including freshly ingested iron, as well as iron in your brain and other organs. There is no way to target to Ferriprox to any particular iron store – it gets everywhere. The only thing to avoid in this context are iron pills which will bind the Ferriprox in the gut and you will excrete both pills.
Q: Food restrictions with Ferriprox are: No zinc No iron No vitamin C Am I right in thinking these restrictions are only 2 hours before or after taking Ferriprox?
A: The issue regarding times of the day to take Ferriprox is based on absorption. Ferriprox binds to iron, vitamin C and zinc. If you consume any of those with your Ferriprox, they will bind together in the gut and the drug will not be absorbed into the body. The manufacturer recommends waiting 2 hours before and after Ferriprox before consuming anything that contains Vitamin C, zinc or iron. If you want to know if the Ferriprox is being absorbed, you can check blood levels of ferritin which should decline slowly over the course of the year.
Q: Is red meat best to be avoided or are we ok if we eat it two hours before or after taking Ferriprox?
A: Red meat contains a lot of iron and it can take anywhere from 1 to 3 days for your body to fully digest meat. I generally recommend against eating red meat on a weekday you’re taking Ferriprox; I suggest saving it for the weekend. I don’t have data to support my recommendation and everyone digests meat at a different rate anyway. If you want to know if the Ferriprox is being absorbed, you can check blood levels of ferritin which should decline slowly over the course of the year.
Q: Is it Zinc, Iron and Vitamin C alone we should avoid in the two hours before or after taking Ferriprox?
A: Yes. Those are the three things that can bind to Ferriprox.
Q 96: My son, who is on Ferriprox, takes the following supplements for his retinitis pigmentosa: cod liver oil (with vitamins A and D), lutein, Tudca (tauroursodeoxycholic acid) and astaxanthin. Are these all ok to use with Ferriprox?
A: I think so, yes. The only things I know of that you can’t take with Ferriprox are vitamin C, zinc and iron.
Q: I have been taking supplements in a smoothie with non-heme iron 4 hours before Ferriprox to be sure that they do not coincide and have much more energy, is it ok to continue like this?
A: 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.
Q: 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?
A: 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 so the drug can be absorbed, and then take the weekends off the medication to replenish the week’s iron stores with a hamburger or spinach.
Q: Am I right in thinking that Iron from the ground passes through the body (i.e.. vegetation) whereas that above the ground (ie beef) is more lightly to cause those with SS problems?
Answer: Sort of. Iron in plants is oxidized and harder to absorb. Iron in meat is reduced and easier to absorb. But the problem in superficial siderosis is not too much iron absorption – it’s an iron distribution problem. The iron in your body is being distributed to the nervous system where it shouldn’t be.
Q: Are there any supplements I should or should not be taking? Right now I take vitamin D, Omega 3 fish oil and magnesium.
A: Those supplements are fine. The only supplements you want to avoid are vitamin D, iron and zinc. In pill form, they remain in the gut for days before completely absorbed. The problem is, if they come into contact with Ferriprox, the will bind each other in the gut and will be unable to absorb either.
Q: Is it wise and affective to avoid vitamin C in foods at least 2 hours before and after taking Ferriprox (and maybe others to avoid as well?)
A: yes, it's wise to stay from foods rich in vitamin C, iron and zinc for 2 hours before and after to avoid Ferriprox binding to them and they prevent Ferriprox from being absorbed.
Q: What should my iron levels be and how much iron can we consume per day?
A: Patients with superficial siderosis do not have an iron overload condition or iron deficiency. They have an iron distribution problem – the iron is depositing in the brain where it should not be. Total body iron stores are normal and iron levels in your blood should therefore be normal. If you are iron deficient, it is not because of the superficial siderosis. But if you are deficient, it will make it harder to tolerate Ferriprox which chelates iron from all over the body, not just the brain. Iron consumption in the form of iron pills is a bad idea with Ferriprox. Iron pills hang around the gut for a long time and take a long time to digest. It’s very likely that if you take an iron pill, the Ferriprox will bind to it in the gut and you will not absorb the Ferriprox (or the iron). Other forms of iron consumption are OK – spinach, chicken, artichoke, etc. However, since you’re taking Ferriprox, which is a very effective iron chelator, I expect you will lose more iron daily than you take in. Over several years of taking Ferriprox therefore, you might eventually become iron deficient. At that time, I recommend stopping the Ferriprox, reloading iron stores with lots of delicious hamburgers and then restarting Ferriprox.
Q: Is there anything SS patients should avoid? Any activities that should be avoided? Any foods/medications that should be avoided?
A: Activities to avoid: anything that re-tears the lining around your spinal cord (for most, that is the source of bleeding).
Foods to avoid: anything that will stick to the Ferriprox in your gut: foods that contain high vitamin C, iron or zinc content 2 hours before or after taking the medicine. No pills containing iron, zinc or vitamin C at all.
Q: As well as Superficial Siderosis my son also has retinitis pigmentosa. With the advice of a nutritionist we are looking at his diet. A number of the things she is recommending have a significant iron content, eg blue/green algae/spirulina/dark greens etc. Provided my son follows your advice about avoiding iron/zinc/vit c rich foods 2 hours before and after taking the Ferriprox is it ok for him to eat these? The nutritionist said that these were ok for haemochromatosis. Thank you.
A: The only concern with a high iron diet is that iron the gut can bind Ferriprox in the gut. The complex of the two is not absorbed so you will lose both. SS is not an iron overload disease as the total body iron is normal. It’s an iron distribution disease: the iron is distributed in the brain where it's not supposed to be.
Q: I've been taking Ferriprox for 2 years now, and my iron levels on the brain have almost been depleted. My symptoms are still uncomfortably strong, no hearing, some improvement in my balance, and very loud tinnitus. I've been taking OTC pill called Lipo-Flavonoid for about 5 months which is supposed to help with the tinnitus. It hasn't helped much with that but it has a lot of vitamin C. Should I give that up, as it is probably counteracting the Ferriprox. My next MRL should be in a couple of weeks, early June.
A: the only trouble with vitamin C is the same as iron (answer above). It binds Ferriprox in the gut and you’ll lose both. If your MRI is improving, hopefully the healing will begin and you will regain some neurological function.
Q: Is chocolate bad for people with nerve damage?
A: I hope not! That would be terrible.
Q: Is sugar making my neuropathy-worse?
Answer: maybe. If you are diabetic or borderline diabetic, sugar can cause neuropathy which will make your SS-neuropathy feel worse.
Q: I was told not to drink at all cause it increases iron absorption. Is this true or not?
A: I assume you mean drink alcoholic beverages. The answer is that it’s safe to drink but you should understand that alcohol toxicity targets the same part of the brain as siderosis, the cerebellum. You may notice that you can drink as much as you used to or that drinking makes your balance much worse. That’s not due to permanent damage though, which is why I say it’s safe to do. Just be careful not to drive or fall or harm yourself. By the way, you don’t have an iron overload problem so you don’t need to worry about increasing iron absorption. You have an iron distribution problem – the iron is distributed in the brain and spinal cord where it shouldn’t be. Bleeding into the spinal fluid is going to lead to a certain amount of iron deposits regardless of how much total iron you’re storing in the rest of your body. (This is true within a broad range of total iron body levels.)