Rising ferritin level
September 26, 2019 at 1:17 am #49088Amy ClarkParticipant
Sorry for the delay in responding. I did not see this post for a while and then was waiting for the Sept. 18th lab report with a ferritin level in it. To answer your questions..
1. He was taking Cucumin Turmeric capsules sold by a local doctor, Dr. Hotze, or the Now brand Turmeric Bromelain capsules from CVS/Amazon/etc.
2. He was and still takes 2 g (2000mg) a day, split into two 1 g (1000mg) doses. The Now brand comes in 600mg, so he would take 3 total. The dosage wasn’t always exact. He took turmeric almost every day.
3. He ferritin was highest in mid-April at 2321. He had one more transfusion after that on April 23rd. He has not had any transfusions since then. (PTL!) He started the turmeric right around this time, as the Jadenu had to be stopped due to high ALT levels.
4. After the June ferritin of 1200, they did not measure his ferritin until this month, Sept. His ferritin level last week was 1120.
Considering the turmeric lowered his levels by half in a couple of months, he would do it again, but we are obviously a bit surprised it hasn’t continued going down since June. He will keep taking the turmeric though, b/c it also helps with general inflammation and he notices a difference in his bone pain if he doesn’t take it.
As I am writing this I am wondering if the article I mentioned above has any more info about dosages of turmeric. Maybe a higher dose is needed to remove more? Maybe a lower dose over a longer period?
I hope this info helps someone. God bless you all.
PS When we receive his latest bone marrow biopsy results, I will post an update about his overall journey up to this point. We see the doctor next Wed.September 27, 2019 at 1:21 pm #49093
Thank you Amy for your response. I will reply / ask question as follows:
1. Now brand was recommended by Hotze or did you recommend another brand? What I noticed with Now is there is NO Piperine/Biopene (black pepper) or BCM-95 included which increase bioavailability for absorption since Tumeric w/o id poorly absorbed. Also NOW is not 95% standardized curcuminoids which is you want the highest amount in Tumeric. You cannot determine how much is in the NOW product. Look at these 2 sites for information:
My brother is taking Terry Naturally Curamed BCM-95 for now see how it does.
2. I would want to know how much of the 2g he takes/day is curcuminoid? (see 1 above)
3. Since he has not had a transfusion I gather his Hemoglobin has been 8+? How have you been able to keep it up so not to have to get transfusions?
4. Did you take any other supplements to block iron absorption from food as there are some. Transfusion by far provides the most iron. Could you check that article is see if dosages were mentioned as that’s what I cannot find information on right dosage amount that will effective remove iron stores in tissues. That would help. Did you Dr. say how much Tumeric can be taken that is safe, I think its up to 8 grams.
Look forward to hearing back.September 27, 2019 at 1:58 pm #49094
Kathy you may want to read my reply to Amy on tumeric and products.September 27, 2019 at 2:30 pm #49095
Amy other supps …. https://hemochromatosishelp.com/hemochromatosis-supplements/. Also Quercetin will pull iron from tissues.October 7, 2019 at 6:10 am #49139Ian PalangioParticipant
Hi I’ve had about 85 units of packed red blood cells transfused over the past 2 years. When my Ferritin got to 1000 they tried me on Exjade – which I had a severe reaction to causing rash, swelling and fever. Months later we tried a Jadenu tablet and I had the same reaction (though not amass severe). The active drug in exjade and Jadenu are the same – deferasirox. My Ferritin was at 2200 when I was put on a program of starting with a miniscule dose and gradually increased it over a month or so to get to a single 360mg dose of Jadenu. There has been swelling and pain of my wrists and hands, and what feels like arthritis. But I’m keeping on the Jadenu and am now 6 weeks in on the full dose – so I don’t expect much change yet from my last tested level of 2200.October 7, 2019 at 1:08 pm #49143Kathy StermerParticipant
I am actually taking the generic of exjade and it’s just awful stuff! Just completing first week and am going to keep an eye on response and negotiate w doc from what you say about effectiveness of one vs the other. Am also using a tumeric cream but had no luck after 2 months but am gonna keep using it. Have also started papaya leaf extract (capsules) and this is one of the first times I’ve gone 2 weeks NOT needing blood. Currently off any treatment as I’ve failed 2 now, Revlimid and Vidaza. Biopsy in 2 weeks to see where to go from here. So far tolerating the exjade but will never be able to enjoy pineapple juice again (my mixer). Like drinking a glass of chalk! Is Jandenu about the same?October 7, 2019 at 1:53 pm #49144
Kathy that is very good news that papaya leaf extract and not needing blood. How much did your hemoglobin increase? How did you hear of PLE? What dosage & frequency are you taking it. Have you considered taking Tumeric vs the creme form. I posted earlier some info on Tumeric with couple links. Hope it will help you.October 8, 2019 at 1:44 am #49146Margaret Bederaux-CayneParticipant
Kathy, Where would you get Papaya Leaf Extract. or Papaya Leaf Tea????October 8, 2019 at 7:06 am #49152Kathy StermerParticipant
The papaya extract was purchased on Amazon and am taking the recommended 600mg twice daily. It’s only been a few weeks and hgb has not risen greatly but as I was dropping half to one gram a week, this week stayed above 7 so didn’t need blood. A first in quite awhile. Am sticking with the tumeric cream for now as also just starting generic of exjade and don’t want to introduce too many new things at once plus concerned there may be iron in oral form which I already have too much currently. As I’m not on any treatment presently, will await bone marrow biopsy results in a few weeks and see where disease is at. Good luck to all trying to tweak an acceptable course in this unpredictable disease.October 18, 2019 at 4:48 am #49190Amy ClarkParticipant
The computer just erased the hour-long research paper I was writing on here to answer the first question you had about the links. I want to give it due credit, but will need to come back another day to write the full “paper.” You are putting me to work with your detailed questions out of concern for your brother. That is nice. I will do my best.
Ok. Starting over..
1. Remember The Hotze clinics did not give him this for high iron. They were seeing him before he had MDS and recommended curcumin for inflammation was having at the time. But to answer your question, they only recommended Hotze vitamins ($65 for 60 soft gels of Curcumin Ultimate- but cheaper than Jadenu if it works!) Anyone can order it.
The NOW turmeric/bromelain blend I had in the cabinet. My husband hardly ever took the NOW version. He liked the doctor-recommended one, not the wife/RN version. 🙂 However, on Amazon it says that each NOW capsule contains 300mg of 95% curcuminoids or 600mg per 2 capsules.
2. On the Hotze vitamin Curcumin Ultimate, 380 mg per 1 gm capsule is curcuminoids as mentioned above (also called 95%/BCM-95) So he took 760mg of that each day in his 2 gram total. Apparently, according to your links above, anything over 500 mg curcuminoids would be considered a high amount. But he never had any problem with the amount that we could tell. FYI -There is no pepper in it, just: A Curcumin proprietary blend that included curcuminoids, turmeric oil, sunflower lecithin and vitamin E.
3. He has not needed any blood since April 23. 2019. His hgb continued to rise at the end of each cycle. He is now in the normal range.
4. He does not do anything to limit iron absorption in his food. A bag of transfused RBCs has 200-250 mg iron. You mentioned that you knew it was the biggest contributor by far of iron and it is. His favorite 6 oz steak only has 5.4 mg. He was eating super clean and healthy, training for triathlons etc. when he developed MDS, so he is not real crazy about going back to a super strict diet – doesn’t see the point unless it is to help him feel better. There is too little iron in food to worry about. The exception is clams and shellfish. They have 25-30 mg per serving. He’d prefer the steak anyway! 🙂
I have some food for thought on the links you sent me to….
On the first page it mentioned that pepper (Bioperine) increased the bioavailability (absorption) of curcumin in one part, but in another part it said that there were other combos that did not have the pepper that had even greater bioavailability than with the pepper. The pages you linked me to gave several reasons why you might want to take the pepper as part of the curcuminoid combination, (relief from depression, various other reasons,) but it didn’t seem to be the most important thing for absorption in our case of iron overload. In short, the curcuminoids/95%/BCM-95% seem to be most important. That designation was even on the NOW brand I mention. I read the pages quickly and will reread them when I have more time to make sure I didn’t miss something crucial about the pepper, but after reading the links I think in our case the pepper is more “optional.”
It won’t let me copy and paste it here. If you are interested, go to the first link you mentioned above and scroll about halfway down to the first green box. Look at the two paragraphs right above that. It explains what I am trying to say, as I realize I am being about as clear as mud.
Tumeric in food wouldn’t have enough. The original link I sent on this thread mentions turmeric cream and said that some people have good results with that, but we have never tried it. We will have to see what happens to Kathy’s levels above.
If I were short on money and wanted to try something, I would try the NOW brand ($11) Tumeric/Bromelain for a few weeks and see what happened. If I had a little more money, I would try the Hotze one ($65) Curcumin Ultimate b/c my husband had ridiculous results with it – near 2400 down to near 1200 ferritin in 9 weeks or so. I wish someone would do a real study on it, but for the time being we will all just try to help each other out. By the way I have no affiliation with Hotze and my husband doesn’t even go there anymore. He just orders this one supplement. God bless you, AmyOctober 22, 2019 at 1:03 am #49212Schwartz SharonParticipant
Please consult a good health expert.
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