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RA & Anemia

karilynn85 profile image
16 Replies

Hi all - hope you are doing well. I come here today with a question about iron deficiency anemia and rheumatoid arthritis. I have been anemic my whole life - I had PICA as a kid where I ate sand and crayons and other weird stuff because I had such a severe mineral deficiency and this wasn't detected until I was in my teenage years. I was able to correct the deficiency with iron transfusions and supplementation and I went through my twenties without an issue. I am 31 now and have had RA since I was 27 (that's a rough estimate because I wasn't diagnosed until July of this year). My iron was OK up until earlier this year when my RA became horrendous and I was finally diagnosed. So, the connection lies there.

As far as my RA goes, it's much better. I'm a paleo diet and things have really turned around, normal inflammation markers, RF went down, anti-CCP went down, but the iron is still an issue. I will attach a picture of what is happening. My doctors just tell me to keep supplementing it, but it's taking forever to go back up, even using liquid iron supplementation 4 times a day as directed by my rheumy. She doesn't show much of a concern and now I'm noticing that my binding capacity and transferrin are actually decreasing, while the iron and iron saturation increase. I will admit I really don't know what all of this means and I am hoping for the following by writing this post:

1. Does anybody else have an iron deficiency anemia with their RA?

2. If so, how did you improve your levels and what are they at now?

3. Can somebody please interpret my results for me who has better knowledge on the subject?

Thank you!

-Karilynn

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16 Replies

Hi Karilynn (love the unusual spelling of your name by the way :) )

I'm afraid I cannot interpret your results but I think it would be worth pushing your rheum to explain to you in more detail.

I'm prone to iron deficiency anaemia. I was able to increase my levels with the liquid, the tablets did nothing for me. When I asked why I have issues with low haemoglobin, they said it's anaemia of chronic disease. I think chronic and uncontrolled inflammation can cause a depletion of various vitamins and minerals. I certainly saw an improvement in my vitamin D, vitamin B12 and iron once my RA was better. I don't think it was a coincidence either. That said, have they looked at other causes? They queried a bleeding stomach ulcer with me and also, asked about my periods. I'm not sure if either of those are issues for you or if they've been discussed.

I have lots of empathy though. I felt really, really rubbish when my iron was very low. I couldn't even shower without getting breathless. I felt like I was wading through treacle and I slept all the time. It's surprisingly debilitating.

Take care.

Nitrobunny profile image
Nitrobunny

Hi! I have anemia as well and my rheumatologist attributes it to chronic inflammation and autoimmune disease. I have several autoimmune disorders including RA and have for more than a decade but it wasn't until the RA showed up and started flaring badly, that my CBC tests went out of whack. My hemoglobin and lymphocytes are low as well. MCV and RDW are high along with my white cell counts. My doctor isn't terribly concerned at this point and does lab work every four weeks when I have my infusion. I also bruise easily but I believe that's a side effect of the prednisone that I'm trying to wean off of as the Actemra takes hold.

I wish I knew what I could do to improve my anemia but iron supplements won't do it according to my rheumatologist.

Best of luck~

xxx

mary4444 profile image
mary4444 in reply toNitrobunny

hi going back around 7yrs i was given a iron infusion it was really great felt good but havent been offered one since i think they are expensive thats why no more they did put me on a course of iron tabs but they made me nauseated u could ask its worth a try wish u luck xx

Nickijk73 profile image
Nickijk73

Morning - it turns out I have perinocious anaemia,which I didn't realise what or how bad it was until they started doing regular tests in the way to diagnosing my condition(PSA). The only way I can get this under control is by having B12 injections every 3 months(3 in a week to start with though,to kick start your levels) and fingers crossed,no ones mentioned it in my bloods ever since,other than it seems to be doing the trick. I did initially ask about supplements I could take,as I'd been taking luquid iron (on and off through laziness) on the back of an acupuncturist advice for a couple of years,but was told the levels were so low that my body would never absorb the amount of iron I'd needed that way. If I were you,I'd chase your GP or rheumy up,and get them to go through all of the relevant options again,and if they refuse,get a second opinion(it's the only way I was diagnosed as needing to see a rheumatologist at my surgery!)

Good luck,and I hope you get the answers and help you need

Nicki x

Gigi71 profile image
Gigi71

Hi Karilnn. Have you had you B12, Vit D and folate levels tested. I had suffered many years with anaemia and low ferritin, when I was put on B12 it has made such a difference, also I am on a low carb high protein diet, lots of veg, gluten free, low sugar. Good luck x

karilynn85 profile image
karilynn85 in reply toGigi71

Yes, I had low B12, very low vit D, and my folate was OK but I had been supplementing it for months when it was finally checked. So, who knows. Most everything has improved now with supplementation.

Gigi71 profile image
Gigi71 in reply tokarilynn85

I went on my diet 3 years ago, going gluten free has definitely helped my Hashimotos and RA, disappointing results with my latest Dexa scan for my osteoporoses. Will be having a more in depth blood test and a review in January. Stay on track you are getting there.X

oldtimer profile image
oldtimer

Anaemia with chronic inflammatory diseases is common. It seems as if the body can't cope with making blood as well as fighting off the inflammation. But it is usually mild with normal iron stores.

Your results are set out rather differently from mine, but it looks as if your iron stores are slightly low still, but have been rising.

I presume you have been tested for gluten sensitivity as that can affect how well you absorb the iron and is often associated with anaemia. And yours seems to be very long standing.

If it were me I would be pushing the consultant for more precise answers and possibly some more investigations rather than just accepting the anaemia of chronic illness diagnosis.

But RD can affect the bone marrow as well - rare but it happened to me. But I became extremely anaemic until high dose steroids turned the bone marrow back on.

karilynn85 profile image
karilynn85 in reply tooldtimer

I do think you are right about the gluten sensitivity. I have neuropathy as well that has now been linked to gluten - a weak positive celiac blood test and antibodies test, but did not get scoped because I didn't want to keep eating gluten for 3 more months. (the time it takes to get in to see the gastro) - I'm assuming that I've had this issue with gluten for a long time. I've only recently given it up on this paleo diet I'm on but already many things have improved, including the neuropathy. The anaemia definitely came BEFORE the chronic disease, in my opinion, so I'm wondering if it went: food intolerance = anaemia = other systemic malfunction = autoimmune disease? I don't really know which came first anymore.

mary4444 profile image
mary4444

yes i have iron deficieny chronic anemia and ra about 7yrs ago i was given a iron infusion and felt great after havent been offered one since i cant tolerate iron pills they make me sick and dont bring the levels up also had iron injections they never worked if u get offered iron infusion go for it makes a big difference xxx

Pands profile image
Pands

I also have chronic iron deficiency anemia. Never had such a detailed breakdown of my iron- related bloods however so I don't really know what they all mean. I have been taking the massive iron tablets for the last 3 years and I am only just hovering into the bottom of my labs' range. My consultant says it is because of my RA, the GP says my RA is well managed so she thinks it must be down to my periods... I just take the tablets. I did once ask about my iron stores but my GP said the results would be unreliable because of my various medications.

To be fair, I do feel less shattered and have lost that wading-through-treacle feeling so I continue in the tablets indefinitely.

hawker955 profile image
hawker955

Anaemia is well-recognized in rheumatoid due to the widespread and chronic inflammation. I was severely anaemic but within weeks of starting my biological and the RA responding so well, my anaemia rapidly improved. Don't be too keen to take iron supplementbecause iron intake is linked to heart disease. This was first noticed in theUSA in the 1990s, and confirmed by Japanese research since. The evidence is there, so only takeiron if you are conclusively deficient. I was anaemic but not iron-deficient and not all anemias are due to a lack of iron. This is scientific research and if you need more info., let me know. If your medics argue, tell them they should look into the subject on PubMed, the largest research library in the world for all, reviewed-research papers published in the world; based in the USA.

karilynn85 profile image
karilynn85 in reply tohawker955

thank you! I will do some reading about this on pubmed.

hawker955 profile image
hawker955

Here is a link, hope it helps?

webmd.com/heart-disease/new...

Men who donateblood regularly have similar rate of heart attacks as young females, who menstruate, of course. Then the Masai tribesmen who live on milk and red meat but walk a lot of miles tending their nomadic cattle in Kenya rarely have heart attacks despite a humungous cholesterol intake, the exercise out-weighing their diet. Milk is low in iron by the way.

Jeanslmn profile image
Jeanslmn

I have anemia with my RA nothings being done about it yet because I stopped taking methotrexate after first dose in sept when a nurse rang me to ask how I got on with first dose I told her three weeks on I was still feeling ill after it I wasn't prepared to feel this ill on top of my RA symptons each week so she just said well you will not need this follow up appointment il cancel it I've heard no more since I do go for blood tests monthly have for last five years as I'm on sulfasalazine four 500 m tablets a day right now it's my hands swell and hurt still and permenant ache feeling in my right arm like I have no strength in it

mary4444 profile image
mary4444

hi karilynn just seen your post i have an iron deficiency anemia and ra years ago i had a iron infusion it was great but havent been offered one since very expensive at the moment i am getting b12 injections from my lovely doctor have had three so another three to go then one every few months if any improvement will write a post the tiredness is terrible i am no good on interpreting your results but i am sure someone on here will be able to help i wish u all the luck i see post was wrote a month ago so u may have something sorted by now i hope mary 4444 xx

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