Iron supplementation and flares

[123MrsG]

Hello, I'm wondering if anyone has any experiences of adverse reactions to iron supplementation? I am not diagnosed with RA but have a MCTD which has features of RA, Lupus and Vasculitis. I have been on hydroxychloraquine for about 3 years which has helped a lot. One of the problems I have experienced over the last couple of years is anaemia. My Haemoglobin is at its lowest ever level at 91 and my ferritin is 10. I am starting to feel quite tired now and need to nap during the day sometimes. I haven't been able to successfully treat my anaemia as I seem to react in a weird way to iron supplements.

I wondered if any one else experiences something similar and if they found a way to treat the anaemia? Basically, when I take iron, I get very achy and experience joint pain, headaches and I sometime experience painful pleurisy pain and a low grade fever. It's as though my immune system is being activated and it's like coming down with flu when I have iron supplements. The higher the dose of the supplement, the worse the reaction.

I have got by, by having over the counter iron every now and again, but this is not going to bring my levels up. There has been a suggestion of having an iron infusion with some steroids, but we have decided against it for now. I'm currently trying ferrous sulphate again, at just one 200mg tablet once a day. I've been coping ok by taking pain relief at the same time, but with each does the pain is increasing. My Dr wants to refer me to a Haematologist next to see if this might shed some light on what is going on.

Anyone have any experience of this? From what I can gather my reaction seems very rare indeed.

[Hidden]

I’d get your bloods done and ask them to look at all your levels. B12/ foliates/ iron. Too much iron can be toxic, so your GP needs to investigate.

[Mmrr]

I've not had any of the experiences with iron supplements that you have had, but my gut doesn't like iron tablets (constipation/ heartburn and so on).

I use floradix liquid which is gentle on the stomach, it can be quite pricey, but often it is on offer in Boots...buy 2 get one free.

[Marionfromhappydays]

You've probably been told this before but eat alot of green leafy vegetables, red meat. The iron from red meat is absorbed the best.

Maybe make a smoothy or something so you don't have to chomp all that spinach?

Hope you get it sorted x

[medway-lady]

I don't know as I have B12 by injection and as far as I know its a different type of anaemia and have regular blood tests anyway. The only thing I can add is folic acid made me really ill when pregnant many years ago and was told no to it with the MTX which I used to take. I think its good your seeing a Haemo and best of luck. xx

[happytulip]

I would be careful about an iron infusion. I had a ferritin of 6 and an hb of 90 so had an iron infusion and on my gosh did it hurt! I've got lupus and RD and I experience chronic pain with it but the infusion took it to a while new level. It was unbelievable but I managed it with extra opioid analgesia and diazapam. I am now back on my regular meds.

The effects took about 3 weeks to pass and then I got the benefit which was some more energy. I too have tried iron fumerate, sulphate and gluconate but couldn't tolerate them. I tried many times so the infusion was the only way forward.

It's important to remember that iron won't just make you less tired, it will also help your immunity and help you fight infection.

You've got some good replies about what to eat but make sure anytime you eat any iron rich foods you have some vitamin C with your food either in the form of fruit of a tablet. It help the absorption of iron. People say "you are what you eat," not the case. It should be "you are what you absorb."

Just a thought but have they tested you for coeliacs?

[happytulip in reply to happytulip]

When I say be careful, what I should have said was weigh up all the facts and side effects etc. Brain isn't in gear today. Tomorrow isn't looking great either 😂

[123MrsG]

Thanks for replying - much appreciated. Happy Tulip - I'm sorry that you've been through so much pain with infusions. It does feel reassuring to know that someone else have experienced something similar though. This is absolutely why my Dr and I are cautious about infusions. Do you have any theory as to why you may have reacted this way to the infusion? I've read so many scientific papers around it but the evidence is not easy to interpret.

I am certainly eating as much steak as I can tolerate - I'm not a fan of beef and actually would prefer a veggie diet, but that's not possible at the moment. I'm also having orange juice with meals and supplements.

Mmrr I also have used floradix which I tolerate the best - I'm just not sure how much it will be able to increase my haemoglobin levels. If I could get away with it I'd much rather just have floradix than ferrous sulphate as it doesn't cause as much joint pain.

Thanks again all.

[happytulip]

healthunlocked.com/lupusuk/... here is the post I made on Lupus UK. Lots of helpful info for you. I find it helps to be on LUK and NRAS. A wealth of inflammation.

[happytulip]

I wish I had known about the antihistamine before I had the infusion. The doctors were fairly blasé about the infusion but my legs felt like lead after the infusion and I became a bit breathless. I had to get them to slow it down. Definitely prepare your body for an infusion if you have one and know that the side effects do pass.

Come back to me if I can help more.

It really does feel like the iron is being sucked into your bones x

[DRunnerchick]

I have dealt with anemia all my adult life and even had a 1000mg iron infusion. I have been anemic both before being diagnosed with autoimmune (due to being a long distance runner/extreme sports/low body fat/foot strike hemolytic anemia) and anemia of chronic disease. Most recent bout, this year, was never determined. In 2016, when my ferritin was 4, even after trying various forms of iron supplements, I was referred to the head of hematology at the University hospital and he is the one who decided to do the infusion.

His reasoning was that it had already been 5 months of supplements and the gauge had barely move on any of the pertinent blood tests. Because I have sensitivity to multiple drugs, I was given the allergy protocol per his orders. Premedicated with Benadryl, Tylenol and prednisone followed by a partial amount of the infusion then a 15 minute wait for reaction. I didn’t. So, it proceeded. The trick is to have them infuse at a slower rate so your body has a chance to adapt. I did get a bit achy and fatigued for a couple of days. I planned for it and was infused on a Friday so I had the weekend to recover. My hematologist prepared me and warned me appropriately.

Now, if you want to try to avoid all that, I will recommend the best product I have ever tried, never upset my stomach or GI tract and is about a third of the cost of Floradix. It’s called “Nature’s Plus Hema Plex Iron”. It comes in a yellow box of 30 (there are imitators that are much more expensive so don’t be fooled) for about $12-13 (that’s a month supply) and it has 85mg of elemental iron in it but it is chelated in a formula with amino acids, Bvits, and at her synergistic phytonutrients to aid absorption. It is gluten free. Can’t remember if it’s dairy free. My doctor recommended several supplements, knowing that my next stop would be an infusion again (insert eye roll 🙄 and whatever else) but this one was the only one that had the chelated formula (I did my grad level nutrition research on iron deficiency in endurance athletes 😂 maybe I should have done end. Athletes with rare neuro autoimmune dx🤔) Anyway, The Hema-Plex did boost my ferritin by 8 in the first month.

[Mermaid11]

I have had 2 iron infusions this year, as I've had reactions in the past to medications they started the infusion extra slow, I felt fine and they kept checking me evey 10 mins to see how I was feeling. I then had another 2 weeks after, I feel great now and that was back in April. Haematologist suggested if my levels get too low again then it's time for an infusion. I would discuss your concerns and see what they suggest, as it may work for you. I was feeling so exhausted and was sleeping most of the day before, now I'm not needing a nap and my joints have improved a little also with new RA medication, but since the iron infusions I feel generally much better in myself.

[Summerrain14]

I have both B12 deficiency and iron deficiency. I have injections for my B12 deficiency and have been on ferrous fumarate for over a year. I’ve no useful advice I’m afraid as I’ve been lucky not to have any bad reactions. Hoping that maybe a haematologist will be able to help. x

[123MrsG]

Thank you all again, this is the most reassured I’ve felt, so I’m glad I posted here. DRunnerchick, I will check out the iron supplement you mention. It sound like it is worth a try.