RA Anemia advice sought

[Hessie5]

Hi all,

Hope everyone is well as can be.

I was told last week by my Rheumy I have Anemia - as usual no importance placed on it or suggested remedy. I thought okay no big deal and foolishly didn’t think more of this.

Without seeming paranoid I just read an article stating Anemia is caused by RA and it must be dealt with as it is pretty dire. It should be checked out.

Just wondered if anyone else has been diagnosed with this and what did you do and what was your outcome?

I plan on calling him tomorrow. Appreciate any feedback.

Thanks,

Hessie 😌

[AgedCrone]

Speak to your haematologist...he’s the one to sort your blood .....you said your white cell count is low....so he would prescribe if necessary...you may just need to up iron rich food in your diet!

[Hessie5 in reply to AgedCrone]

Thanks for the response.

I saw a private haematologist some 3 weeks ago all seemed good! Now I am on this new biologic it must be that, as I have contracted Eczema and back to a cold sore in my nose.. Just wretched.

You have just reminded me I have an NHS haematologist appt which I was going to cancel, so shall follow up then.

Just upped my garlic too 😁

Thanks again appreciate your feedback.

[Gigi71 in reply to Hessie5]

My blood tests since Christmas have been very erratic, recently my Gp ordered further testing of ferritin, b12, folic acid. My ferritin levels were low, I have iron deficient anaemia, and put on the dreaded ferrous sulphate, unfortunately the other two tests were spoiled by the lab. I have B12 injections every 3 months and am on folic acid, have been on them before being changed to mtx. I have had this many times in the 34 years I’ve had RD. When I went on b12 it seemed to help, my GP has agreed I can have the injections every 2 months. My red blood cells are low and can cause many problems. I had a bowel cancer test and was negative. My rheumy ordered a US of my liver. I do have simple cysts on it, but don’t have the results of this latest scan. I was due to see the rheumy on the 5th Sept, my appointment has been cancelled as she is not available. Definitely follow this up. Most rhuemy’s are so busy, so hopefully your haematologist will sort this out for you. Good luck x

[Hessie5 in reply to Gigi71]

Thank you Gigi71 - hopefully the haematologist can assist. All the best to you. x

[Mmrr]

I was very mildly anaemic, my GP and rheumatologist didn't seem too bothered, but I really did not want something else to bother about, had it continued or worsened. I started taking floradix which has helped greatly, it's gentle on the stomach and I'm not anaemic anymore.

[Hessie5 in reply to Mmrr]

Agreed - we have enough to contend with !Thank you - shall research. All the best to you. x

[JFlay in reply to Mmrr]

I have been anaemic in the past and I noticed with my last blood results that my MCHC result was low, but the comment says 'abnormal - no action' so it must just be a bit low. Now I'm on HCQ I won't need regular blood tests so Floradix sounds like it could be a good idea 👍

[Tile in reply to JFlay]

Remember low MCHC means low hemoglobin in your RBC. Hemoglobin carries oxygen to your cells. Which if low can mean low levels of oxygen getting into your brain. Have them do a pulse ox simple test where a clip is placed on your finger and blood oxygen level is shown. Maybe you had this done already.

[JFlay in reply to Tile]

Hi, Tile thanks for your reply. No, I haven't done that. From what I've read it means the red cells are smaller. Blood test was done after MTX was stopped, not on it now. I think I'll need a blood test before next rheum app so will see if it's changed 🙄

[Hessie5 in reply to JFlay]

Hi JFlay. Thanks for your feedback. I bought a bottle of the Floradix (it was good to see they did a gluten-free one).

The haematologist recommended I take it following on from blood results. All the best. 😌

[Tile in reply to Mmrr]

Floradix works but in the USA it comes with cyanob12 and folic acid not folinic acid or methyfolate or a good B12 without cyanide to be broken down. These are 2 iffy cheap versions of these B vitamins. The folic acid can build up and decrease Natural Killer Cells and the cyanoB12 has cyanide that has to be broken down.

[Mmrr in reply to Tile]

Oh dear. I'm glad I get the UK version !

[Hessie5 in reply to Tile]

Oh my! That's not smart. Glad the one here is a good one.

[Dspooky01]

Hi Hessie,

I was anaemic after I started MTX, my Rheumy upped my folic acid from once a week to every day except MTX day and that seems to have done the trick. It wasn’t a big problem.

[Hessie5 in reply to Dspooky01]

Thank you - very helpful - I shall certainly follow up. Take care. x

[sylvi]

I now use Spatone I get from the chemist it is a liquid and I take a sachet every morning in juice when I take my drugs and I believe it is helping me keep my blood levels up. How do I know you ask, well be prepared for this, I look at my motions and if it is dark that means my bloods are ok. xxx

[janmary in reply to sylvi]

Hope you’re feeling better Sylvi.

Just to clear a point - Dark stools can mean you’re taking iron supplements or you’re eating an iron rich diet ( lots of spinach) , but CAN be an indication of bleeding in the bowel . Won’t tell you what your blood profile is.

[dembonesDAMNBONES in reply to janmary]

Any dark green leafy veg, beans, lentils, cashews, whole grains, baked spuds, dark chocolate

Gave up my carnivore lifestyle long ago and looked for alternatives with high iron content.

For those happy with meat and fish I'd suggest organs, liver topping the list and, surprisingly, cooked oysters.

[sylvi in reply to janmary]

I do eat a well balanced diet.xxxx

[Hessie5 in reply to sylvi]

Thank you Sylvi - going to chemist today. Interesting fact re motion too 😁. Stay well x

[dembonesDAMNBONES in reply to sylvi]

So, dark results provide a secondary relief?

Sorry.

"TAXI!"

[Mumcon]

Hi I frequently got told that I had Anemia but they never did anything about it until the end of December when I felt really exhausted and had no energy My GP picked up on this and put me on a 3 month course of iron and after a couple of weeks I started to feel better I just wonder if it will all start again after a few months of no Iron I suppose time will tell

[Hessie5 in reply to Mumcon]

Thank you 😌 - I haven't been feeling too exhausted but may catch up with me. All the best.

[Mumcon in reply to Hessie5]

Take care xx

[Midwife1986]

I had it as well and after having blood tests,endoscopy and colonoscopy to rule out intestinal problems it was put down to RA . Didn’t have any treatment as that wouldn’t have helped as it was disease related. Once I started to respond to treatment it returned to normal. Hope this helps.

[Hessie5 in reply to Midwife1986]

Interesting very helpful, thanks. I shall mention to the haematologist. Take care.

[crashdoll]

Are you on anti inflammatory medication? This of often associated with gut problems and you can have minor bleeds. I have some bleeding in my small intestine from naxproen but they did an endoscopy to check no major bleeds first. I had an iron infusion that was helpful as oral iron can be tough on the gut and iron tablets weren’t bringing up my levels quickly enough.

[Hessie5 in reply to crashdoll]

Hi Crashdoll - I take the odd paracetamol nothing major. I tend to put up with the pain unless too unbearable - I am going to monitor and plan on buying that iron liquid some people mentioned to get going. Thanks for your advice. All the best. 😌

[Elmo333]

I’ve been anaemia for about a year. It is not severe and remains stable. It is said to be part of the RA. Be careful about taken iron supplements because I’ve been told that it can be the body protecting itself when you have a chronic disease ie. nasty cells (including some cancers) need iron to multiply so the body limits the amount it absorbs. Anaemia of chronic disease is not always iron deficiency anaemia. The aim is to control the disease, not put lots of iron in your body.

[Hessie5 in reply to Elmo333]

Well I never! Thank you for that piece of advice - trying to balance these things is a chore. I shall certainly mention this to the haematologist tomorrow. All the best to you.

[dembonesDAMNBONES in reply to Elmo333]

Now that is very interesting.

Do you have any links?

Not to worry, if not.

I wonder if thats another method of transportation used by cancer, via blood?

I must look into that.

Thanks!

[Sarah_89]

Hi Hessie,

Similar to other comments, I developed anaemia after being on various DMARDS which was picked up by my rheumatologist. In my case, he told me to see my usual GP about sorting and monitoring this in the long run. I was prescribed high dose iron tablets to start, followed by a low continuing dose in order to keep the anaemia in check.

Maybe it would be a good idea to mention this to your GP?

All the best

[Hessie5 in reply to Sarah_89]

Hi Sarah - it appears it is common after reviewing replies. RA is just more than one imagines. You think you fix one thing and then something else crops up.... Ho hum. Not stressing, shall address with a haematologist tomorrow as well as GP.

Thanks and take care 😌

[Tile]

Keep in mind that anemia means less oxygen getting into your brain. Have your doctor do a pulse ox to check your blood oxygen level. Quick test just a clip on your finger.

[Hessie5 in reply to Tile]

Thanks Tile. Had this done a couple of days ago - she said oxygen in my blood was 100%. Need to do research as to what that all means 😁. All the best.

[dembonesDAMNBONES]

Never had anemia myself, Hessie, so your post has proved interesting and I've learnt a lot.

The cancer angle particularly.

My mother had severe RA for many years, but was only diagnosed four years before she died.

She was fairly anemic and was constantly on iron tablets.

She died of cancer of the brain, jaw and spine...three different places and it was never figured out where it started or how it travelled.

Elmo333's comment got me to thinking.

I've got emphysema, diagnosed sixteen or so years back, so have a constant lower oxygen level.

If the RA lowers it further, as I've now learnt is a possibility, I'd best get my thinking cap on and figure a way around the problem, rather than be found wanting at a later date.

Obliged to you!