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Hi to all, I'm postmenopausal, with RA. Since December, I have become anemic. I have low total iron and low iron binding. The dr. is recommending slo-fe which you get at the drug store. I searched this topic on the board and don't see any of you using it, in fact, that iron is a bad choice for autoimmunity people. Any ideas on what to do? Thanks!
I hope others reply to this because I'd sure love to know too. I'm always anemic and my doctor just keeps saying eat more meat, but I'm not a big meat eater.
kim
I hope so too, Kim. I just became anemic at my Dec. 08 blood draw, my stool was checked for blood in August, was clear, so I don't think there's a problem there. In my opinion, I've been in a flare since September and had massive, miserable herxing from the clindy IV's which I've finished. Finally, I'm starting to feel alittle better but I don't want to talk about it too much or I'll jinx it. From what I've read, iron is contraindicated if you have an autoimmune disease. And my mom, who didn't have any autoimmune disease was anemic as long as I can remember. (genetics?) So what to do? Kim, I admire so your perseverence on all levels with this disease, uncovering the critters on all levels. Maybe someone else here can help us.
[user=48]Lizz[/user] wrote:
I hope so too, Kim. I just became anemic at my Dec. 08 blood draw, my stool was checked for blood in August, was clear, so I don't think there's a problem there. In my opinion, I've been in a flare since September and had massive, miserable herxing from the clindy IV's which I've finished. Finally, I'm starting to feel alittle better but I don't want to talk about it too much or I'll jinx it. From what I've read, iron is contraindicated if you have an autoimmune disease. And my mom, who didn't have any autoimmune disease was anemic as long as I can remember. (genetics?) So what to do? Kim, I admire so your perseverence on all levels with this disease, uncovering the critters on all levels. Maybe someone else here can help us.
Well, clearly I'm not doing enough. All I do is take a multi with iron, but now I'm thinking that the parasites that I've been providing with free room and board have been stealing most of my nutrients. Very disturbing………ugh!!!:sick:
Hi Lizz and Kim,
I just found this website about anemia, which is very easy to understand and describes different types of anemia and their treatments. For instance, pernicious anemia, as Kim is describing, is a B12 deficiency and corrected with either B12 sublingual dots or periodic B12 shots for life.
http://www.ehealthmd.com/library/anemia/ANM_kinds.html
Course of treatment will depend on the cause of anemia. Low ferritin levels tend to be diagnostic for anemia in RA patients and supplementing with iron isn't though to help much. Sometimes anemia is caused by DMARDs (methotrexate, for instance), sometimes by stomach ulcers caused by pain meds, etc. RA patients with the coinfection of Lyme, called babesiosis, will often be anemic, too, because babesia is a red blood cell parasite. So, sometimes getting this infection controlled can bring bloods back to normal.
Th interesting thing is that Brown found that anemia in his rheumatic patients often rectified itself once they'd been on AP for a while and all blood counts began to normalize.
Lizz, did you have your B12 levels checked, at all? If low, this might provide a clue as to whether this is a pernicious form of anemia or not.
Peace, Maz
I've been anemic “forever” and it seems to get better when the RA is better and worse when the RA is worse. I suspect that it is somehow part of the disease process for many of us.
As for what to do about it…well…not sure either…
– – whaleharbor
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
[user=27]Maz[/user] wrote:
Hi Lizz and Kim,
I just found this website about anemia, which is very easy to understand and describes different types of anemia and their treatments. For instance, pernicious anemia, as Kim is describing, is a B12 deficiency and corrected with either B12 sublingual dots or periodic B12 shots for life.
This is interesting, thanks for the link, Maz. When I started Lyme tx about 9 months ago my Lyme doc tested me for all the B's and said we needed to supplement at home with B-12 shots. I've been doing the shots at home…..started out 2/wk, still tested low and had no energy, lately have been doing every other day, but he said I could do daily if I wished. Haven't done daily because I hate doing them and don't want to deal with it since I'm not getting much out of the shots. I think I have very well-nourished parasites. :angry:
Has anyone tried using blackstrap molasses to treat their anemia? I found this link that talks about anemia and different treatments.
http://www.umm.edu/altmed/articles/anemia-000009.htm
I have always been on the slightly anemic side, even before getting diagnosed. I have taken Slo-Fe daily for months when I was pregnant, and my numbers never got better.
Kim, I think too, that my myco-bugs are well-fed. I don't like to eat much red meat either. Guess I should add more beans and spinach to my diet. I've never cooked or eaten beet greens before. Are they tasty?
Lizz, if iron supplementing is contraindicated in autoimmune disorders, why do rheumatologists recommend taking iron supplements?
This link provides some useful info on iron absorption and deficiencies. Aside from the GI tract issues that Maz mentioned, it also says that celiac disease inhibits iron absorption. As so many of us seem to have gluten sensitivities and other GI issues, maybe that's one reason for anemia to be so common amongst all of us with a rheumatoid disease. http://library.med.utah.edu/WebPath/TUTORIAL/IRON/IRON.html
Incidentally, Dr Brown also mentioned – aside from the resolution of iron deficiency after treatment with antibiotics, that normal treatments tend not to work (pages 144 and 159 The New Arthritis Breakthrough). Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)from what i was told iron feeds the “bad” stuff and the anemia should resolve once you start to get better. unfortunently that wasnt an option for me bc i landed in the hospital with severe anemia in november and had to have iron given to me through iv and a blood transfusion. i now get proquip shots every few months to help and have been doing very well. i suggest getting routine blood work done so it doesn't get out of control. i wish i could offer more insight. 😕
Thanks to all for the replys. Maz, I haven't had my B-12 checked, I will look into it. Susan, I too thought iron 'feeds' the bad stuff, so I don't know what to think. Eggs, I'm so so sorry about the hospital stay and glad that you've stablized. I don't really seem to have any symptoms of anemia, it's so strange, I can go all day, never fatigued. I'll up my B-12 and try slo-fe more often. You guys are right, it would help to know what kind of anemia it is. And I don't think black strap molasses would hurt at all. I know I have leaky gut and have been working on it for two years, which is about as long as I've been on minocin. I agree with you Whaleharbor, when you're in a flare, everythings worse!
There's also anemia of chronic disease. Inflammation, from whatever the cause, suppresses production of red blood cell production in the bone marrow. However, if one is also low in iron, I'm not sure if this is truly a cause.
Way back in 2000I I was anemic and was diagnosed with Scleroderma by the Cleveland Clinic (when the Clinic was in Naples, Florida). They prescribed over-the-counter iron which was a problem to take for reasons those who take it understand. Every time I went there, the solution was more iron pills. Finally I was sent by my primary care doctor to the hospital for a blood transfusion, and for weekly infusions of iron at the local oncology place. This went on for months and months with no increase of iron storage or lessening of anemia.
I had another blood transfusion with more iron pills prescribed. Finally in 2003 my Gastro person identified the problem – ampul carcinoma (cancer of the small bowel).
After a Whipple Operation in 2004 in Tampa, FL, I was still taking those awful iron pills. I was on my way to another regime of weekly iron infusions when I heard my oncologist ask a patient how he was doing on such and such a pill for anemia. The patient said, “Great”! So I asked my oncologist, as we were walking down the hall, what is that medicine? He said, “Oh, do you want some?” I said I surely would if it helps rather than eat those awful iron pills and have to come for iron infusion, when no one could find my veins. So, he gave me the prescription for REocyte Plus (Iron-Vitamin-Mineral Complex Capsules), and I have not had a problem with anemia since. I wonder why no one suggested that before.
Nancy Blake, SD (CREST), Minocycline – 2 yrs., but not right now.
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