Has anyone else developed severe anaemia from RA?

[Dogrose]

My iron has been dropping all year, I don't eat much but I do take supplements with iron but it is still dropping. I had a special blood test yesterday after my Infliximab infusion (which has left me with a massive pool of blood under my skin so gory I can't look at it). The nurses called the rheumy on duty to come and talk to me and she said I might need mega doses of iron but they seemed worried about all my current symptoms so now I'm worried, they kept asking me all sorts of odd health questions XX

[Beaches2]

Hi

I have developed severe anaemia too, a little better now after 3 months of high strength iron from docs and increasing both meat and non meat sources in my diet.

Also check on iron absorption issues, I have discovered that we need vit c to absorb iron and that tannin ( as in tea) prevents absorption on non meat iron, so avoid tea with and at least an hour after meals.I now choose fortified breakfast cereal ( bran flakes) and eat a little more meat.( I ate very little before)

Rheumy said that if hb levels continue to fall then a blood transfusion would be needed .......yuk, then investigation to see if there was some bleeding in the bowels.....yuk again!

I don't know if they think something else may be going on for you but at least you know they are on to it and you will get the necessary help.....

Good luck and hope it's something straight forward xx

[Dogrose in reply to Beaches2]

Thanks for the reply, I know it sounds bad but I'm glad other people have the same issue with iron, it makes me feel less like I have something weird and serious! I actually don't eat meat, I'm 49 and have never eaten it which probably doesn't help, plus my lack of appetite this year, I'm steadily losing weight. They did ask about bowel/stomach bleeding but that isn't an issue. Hopefully some big doses of iron will sort it out! XXX

[Beaches2 in reply to Dogrose]

It's fine, I know just what you mean,it's a relief to find you're not alone. As Christine says below, my low levels correspond mostly to when I have most inflammation, after steroid jab has reduced infl so my levels go up ( a bit) My hb levels have been below normal for months now and it's just a horrible feeling. I hardly ate meat before this, I don't even like it very much,but in my desperation I have forced myself! .....can't face liver though! That's a bridge too far

Try and stay positive x

[skinnycappuccino]

Hello there I'm sorry about your bruise from the infusion!! I hope it'll go down soon.

I developed anaemia as well because of RA. My rheumy had me do an iron infusion and it was sorted then, my blood count is normal now. I think as long as your RA is not under control, the inflammation will keep 'eating' the iron (very scientific, I know). How is your RA? Is the Infliximab working?

I think an iron infusion might be a good idea, they might give you lower doses at intervals instead of one massive mega dose?

Christine x

[Dogrose in reply to skinnycappuccino]

Thanks for the reply, my RA isn't under control, it has never been really and seems to have getting steadily worse since I was diagnosed three and a half years ago despite trying lots of different treatments, the Infliximab barely works now and it is probably time to call it a day and try something new. Hopefully I can get away with iron pills, I've had my fill of infusions for one lifetime! XXX

[skinnycappuccino in reply to Dogrose]

Hello dogrose I sympathize that you don't want even more infusions!! I really dislike them too. When I had my iron infusion I got so upset my rheumy had to come and sit there for the entire time, bless him Very sorry to hear they're still trying to sort out your RA Is infliximab the first biologic you're trying? xx

[Dogrose in reply to skinnycappuccino]

No, I tried Humira but that was a disaster. Not sure what will be next on the list! xx

[earthwitch]

Well, at least they seem to be onto it and concerned enough that hopefully they will quickly discover what is going on, and how to deal with it. Try not to worry too much about it. it could be something really simple to fix.

[Footdoc]

Hi there

Yes I had the same problem when having infliximab, with other issues I was switched to Etanercept for the last two years. Everything improved until April this year and hey presto I'm anaemic again. Supplements have been a tremendous help. However, having review with Consultant on Monday. Anaemia being one of the reasons for appt.

[Dogrose in reply to Footdoc]

Thanks, the rheumy who saw me seemed fixed on it being caused by stomach ulcers, pretty sure I don't have them! I guess it is something I will need to keep my eye on from now on. xx

[Hidden]

Hi, i used to suffer severe anaemia. I was given iron/vitamin infusions every three months for a year. My levels gradually came up and now four yrs later I am just about in the normal range. However, my rheumy put me on vit D! capsules six months ago because I was very low in this and weirdly this has seemd to help me in the iron department!! My levels are keeping up better now. Like you it was thought I might have gastro problem causing my anaemia. I underwent endoscopy and colonoscopy and a pancreatic cyst was discovered. I had surgery for this but the surgeon said that my anaemia was caused by RA and not pancreas. Hope this helps, lynda x

[Dogrose in reply to Hidden]

Thank you it does xx

[gracie47]

Hi I have had anaemia on and off for years.I don't eat much meat but take iron tablets. I was told just because the RA is so active makes the fatigue worse though. I have wondered if there is a link to low vitamin D as a few people on here have mentioned this. Hope the tablets are enough for you they usually are for me I didn't fancy an infusion eitherx

[Hidden in reply to gracie47]

Hi Gracie, yes, I have felt better all round since vit D capsules, just one per day. My gastro enterologist referred me to Haematologist initially, after the surgery on my pancreas(which by the way made me type 1 diabetic, on insulin more or less overnight!). This Haematologist is amazing, he did the most sophisticated blood tests and I called him Merlin because he had magic answers to everything. He could locate from the bloods just what and was not working within my body. He established that I had a problem absorbing some iron because of pancreatic problems, but that the main culprit was my RA, he said that even if I ate a huge steak every day I still wld not absorb the iron properly. So that's why I got the infusions. It took about six weeks after the first one before I felt any better, and then I gradually built up to where I am now, which is just about borderline. I am seeing him again soon, so maybe he will arrange a further infusion. I still get very tired but not so bad as I used to be. I have been told that this fatigue gos hand in hand with RA, another ghastly feature of this ghastly disease. I suppose I was lucky in that I was referred to Haematologist because of my pancreas, and I actually think most RA patients would benefit from maybe a yearly appointment to get their blood totally assessed. Hope you feel better soon, Lynda x

[wiseEagle]

Do any of you with low iron have feelings of fatigue and lethargy?

[wiseEagle]

Do you have low energy, lethargy and apathy? I do and cannot figure out why. It stayed and stayed after my back surgery. I had 4 sets of screws and 2 rods and 3 cages put in my low back. When I got home from re rehab facility the lethargy hit. I decided to take less of the opiate pain meds...that did not change it. I moved my bed out of the living room to force myself to sit up and be more active, that didn't help, I asked my doc for an antidepressant, that didn't, help. I remembered the other day that the rehab doc said something about getting a blood test for anemia...so I just had that done. I will have the results Monday. I saw too, on this site that drinking tea reduces absorption of iron...well I drink a lot of iced tea..I'm trying not to drink diet pop. So is there something else with caffeine that is cold that I can switch to? Sigh. If it isn't one thing going it is another. And how about this...what kind of support group should I find? I have no energy, I'm in constant pain that prevents me from doing things, I am isolated and lonley, I can't remember tings, I have fibro, depression, pain, no friends any more, feel like a terrible mother because I can't do what other moms do...like clean and cook and take my daughter to the mall. I can't walk at a normal pace or very far. The kids have to do all the work around the house...ages 10 and 12. Dishes, vacuuming, laundry, making their meals. I cook rarely. Partly because they won't eat anything real yet...lol. but I know that isn't good for me...I need to make real meals for myself but it feels so lonely to cook all that just for me. I've lost my connections due to being ill. I rarely talk to anyone. My alcoholic boyfriend got told to quit drinking or he would lose his job...so he did...but now that he is sober he can't talk to me. I'm a trigger. So I lost my only support system I had. I am afraid to go to a fibro support group because the town I live in is filled with uneducated, unmotivated people. I need a support group that will build me up. I've tried the group that supports families of alcoholics but they are all uptight control freaks...and don't let you get close. I have nobody. I know I need to reach out...but where? I am going back to work this September. I have to get my head together quickly. I keep praying for an anurism, a heart attack, or a deadly car crash...no others involved of course. I used to think of suicide but my therapist told me that kids never get over a parent killing themself. Too many questions left unanswered...and they'd feel like I did the love them enough to stay. Well they are the only reason I stay. But when I think of how their life COULD be living with their Dad and his new wife ( who has a lot of energy like I used to) they could be so much better off. I really didn't think I actually had fibro...but when it came back and STAYED..I mean PARKED ITSELF I side my joints and mind (fibro fog)...I realized that this is what I have to look u forward to for the rest of my life. This and the back pain...I'm on month 3 and it is no better than before surgery. I also have a right leg that is growing smaller than my left..it is weak. And my left foot which had reconstructive surgery last year is now giving me problems again. So I limp. I'm gain get weight too. I'm alone, fat and a cripple now. That's how I define myslef. Im angry and depressed. Is this a stage of grief? Am I grieving who I used to be? I used to call myself "military mommy" I had those kids in line. I remembered stuff. I didn't rely on them for everything. I used to have a boyfriend a day we used to ha e things to talk about. I don't have anything to talk about anymore. I can't listen to music...it either makes me sad or angry. I don't watch TV for a variety of reasons. I don't read anymore bc I cannot remember the plot/names of characters and places. I just sit. And think. By the end of the day I'm ready to turn off my brain and I do...I have been using alternative medicine just so I won't feel so much pain both inside and out...it works. Sometimes I actually feel like cooking aftward..because of the munchies. But I worry about the long term affects of that. I drove quite a distance in the past 4 days...20 hours...got lost 4 times at the cost of about 6 hours total. I never would have gotten lost 2 years ago. My life....no...I don't have a life...my existence is so different that my life was 2 years ago.

[Beaches2]

Hi wise eagle

I feel so sad reading your story and how bad you feel about yourself just now. You have been through so much and it sometimes just doesn't seem fair does it? Have you had access to counselling.? Or perhaps referral to a pain clinic which I believe helps a lot of people.

I am not best qualified to help with your issues but what I do know is that children love their mums unconditionally, just as we love them. You have your children to talk with, play with.......perhaps some family board games,cards etc.......have some fun with them.....a pizza and card night etc.

Regarding iron and anaemia,yes symptoms are incredible tiredness and lethargy. It's the tannin in tea that prevents iron absorption in non meat iron, doesn't appear to matter with iron from meat. I think tannin is not caffeine but would have to check that!

If you want to lower caffeine intake then decaf tea bags are pretty good these days.

Best wishes and I hope you manage to find the help and support you need, always someone on here to chat to if you need x

[Fighting4me_17]

Wise eagle I am so sad reading how you feel but this may be the best thing you have done as this group is very supportive. I like you drink tea lots so need to try decaffeinated teabags🙁

Will you doctors not signpost you to support groups that you might be able to go to and make friends in similar circumstances to you. Even if it is outta your local area... I did this two year ago and came so far for myself!!! But then unfortunately circumstances as a family forced us to have to move away so I am now looking to find groups I could possible attend here to get me back to 2016 feeling again 🙄 sending healing healthy hugs to you 💕💕💕