Anaemia and PMR/GCA

[springeramber]

I am new here and this has probably come up before but I am trying to find out if there is a connection between PMR/GCA (they are not sure which I have) and anaemia - my Hb was 70 - I was given 2 bags of blood back in March (at start of lockdown!!) and have been on 3x210g of ferrous fumarate a day since then and Hb is still below normal - endoscopy and colonscopy did not show up any bleeding. My rheumatologist says it is not their department and no one else is interested in finding out the cause.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome, sorry but am going to ask a few questions.

Why are they not sure?

What Symptoms do you have?

What dose are you on?

Quote from Harvard Medical school-

“Most PMR patients have anemia, which is usually mild to moderate. In addition to low red blood cell counts, these people have low blood iron levels — but since they also have normal or high levels of the blood protein ferritin, they are not actually iron deficient.”

[springeramber in reply to DorsetLady]

I started with headaches but they did not tick the boxes for GCA and I was transferred between neurology and rheumatology where I am now - headaches disappeared with the 40mg prednisolone and have not returned - now down to 9mg - did have a bit of jaw ache but that has improved - lower back/hip aches did not start until about 6 months after starting pred and I have definitely got wear and tear in that area - anaemia is going to be looked at again in a few months and they have look at the bit of colon that is missed in ths colonscopy

[piglette]

I keep being asked “did you know your anaemic” I say no and they then shrug and carry on with something else. Although I did have an op recently and they gave me a couple of pints of blood because of it. It took six hours to get it into me and they finished at 1am in the morning. I had to just sit there.

[springeramber in reply to piglette]

Thank you for replying - you can read my other replies

[PMRpro Ambassador]

Low grade anaemia is a common finding in autoimmune and other chronic illnesses. However - it is not necessarily an iron deficiency anaemia. Has your ferritin level been checked?

niddk.nih.gov/health-inform...

It may not be your rheumy's department - but they should know it is part of the illness. They have ruled out GI bleeding which is a very common cause of low Hb and other potential causes would have been identified by the general blood tests they do.

But I'm not entirely sure you should betaking iron supplements - which is why I asked about the ferritin level.

[springeramber in reply to PMRpro]

Thank you for replying - I actually got an appointment with the GP today!! She checked my back/ hips and reckons there is definitely wear and tear which makes me wonder if it the pain is connected with PMR. Ferritin level is low and I am definitely iron deficient. See reply to Dorset Lady

[Marijo1951]

I was definitely anaemic when I started with GCA and PMR. My clueless GP prescribed iron tablets, which my rheumatologist advised me to stop taking when I was finally diagnosed.

[powerwalk in reply to Marijo1951]

Mario , Why did they tell you to stop taking the iron tablets? Is it harmful?

[Marijo1951 in reply to powerwalk]

I think because as PMRpro says: 'Low grade anaemia is a common finding in autoimmune and other chronic illnesses. However - it is not necessarily an iron deficiency anaemia. ' So, maybe not harmful, but pointless especially as iron tablets can have unpleasant side effects, severe constipation being the best known.

[powerwalk in reply to Marijo1951]

Ah right. Thank you.

[PMRpro Ambassador in reply to powerwalk]

Because the body stores of iron in the tissues may be adequate and more iron as such is not needed. You can overdose on iron too.

And as Marijo says, the side effects of iron aren't nice - usually constipation but sometimes the opposite! When I was pregnant in the UK they insisted on supplements but I could not cope with the usual cheap NHS stuff - they were forced to give me the much more expensive version! In Germany they just monitored me - didn't use anything unless it was needed.

[powerwalk in reply to PMRpro]

Oh right. All so complex. Thank you.

[Marijo1951 in reply to PMRpro]

I had 3 children between 1970 and 1974 and during pregnancy we were almost force fed iron tablets. Maybe it was a hangover from the 1930s when some women were weakened and lacking in iron from poor diet and frequent pregnancies. I had my youngest daughter in 1986 and was never offered iron tablets. I asked the midwife about this and she said most people are well-fed enough to get enough iron from their diet and it wasn't good for pregnant women to be constipated, so the policy had changed. Nevertheless she did give me the old advice to eat liver once a week to keep my iron levels up. When my sister was pregnant with her son two years later, things had changed again. She was told not to eat liver because the high vitamin A levels could harm the baby. I believe that is still the NHS's advice.

[PMRpro Ambassador in reply to Marijo1951]

Was just thinking that - I could have liver or tablets with No 1, 1980. Only 3 years later in Germany totally different, And now it is DON'T eat liver isn't it! At one appointment the doctor said it might be iron next time but I changed my occasional wine to red - it went back up.And now - you are told you are damaging yhour baby with a glass of wine. Mind you - no idea how anyone has a healthy baby here if that is true!

[Marijo1951 in reply to PMRpro]

Not only wine, but caffeine. I found out a few years ago, when a coffee-addicted work colleague refused a cup. I asked why and she said 'Well, because I'm expecting of course...' She probably didn't realise how new this particular piece of advice was. The subject of caffeine never came up when I was pregnant.

[PMRpro Ambassador in reply to Marijo1951]

I did get the "no you can't have a cup of black tea" in Germany on day 3 post c-section. Apparently it would make me sick. How do the British survive?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

We were in Germany when I was expecting my daughter - back in the dark ages. Well late 60s actually.

We frequented local bars as we were living in a private hiring not Married Quarters at the time, and I was always being told by the locals to drink the dark German beer )almost like stout or Guinness) as it was called “mothers milk” and good for pregnant ladies!

Believe it is still brewed as a craft beer.

[PMRpro Ambassador in reply to DorsetLady]

They'd have you believe all beer in Germany is craft beer In Bavaria it is wasn't even subject to alcohol tax - it counts as food! Might have changed but I doubt it.

[Rugger]

My haemoglobin has been up and down over the (almost) 5 years of PMR and GCA-LVV. When I have had active inflammation it has gone down and when things are under control with enough medication, it goes up again!I asked my GP about it some while ago and he said it is the "anaemia of inflammation".

I hope you get some help soon.

[Karenjaninaz]

When I was first diagnosed with PMR I was anemic. I had a full check up to exclude GI bleeding. My gastro said that anemia is from PMR and pred will set it right and indeed that was true. It was NOT iron deficiency.

[springeramber in reply to Karenjaninaz]

Thank you for replying. My ferritin is low as well and the anaemia is definitely due to iron deficiency. I was only anaemic after 15 months of prednisolone? I have to stay on iron for a few more months and them they will think again. I have only been on Methotrexate for six weeks.

[phebamom]

Yes. It is called anemia of Chronic disease. Your cells have iron, but are unable to take it up because of the inflammation. I had iron infusions a couple of times. About a year ago I started a daily multi-vitamin with just 5mg of iron. My primary physician was thrilled when she learned I was doing that. I am still showing a very low grade anemia, but my energy level has greatly improved. The vitamin also has 1000mg of Vitamin D, so it is all good. Plus, it is chewable and easier for me to take. About 3 months after starting the chewable my energy level greatly improved. My primary told me it was smart to sloooowly build up iron levels. The vitamin I take is called Enhanced Energy Whole Food multivitamin by KAL, 60 chewable tablets., Mango Pineapple flavor. Does not taste too bad. Reminds me of the liquid vitamins I would take as a child. HOpe this helps.

[springeramber in reply to phebamom]

Thank you for your reply - I am taking vitamin D but will look the other info up - are you in USA?

[phebamom]

Yes, I am in the U.S. Nutville USA, where nobody wants to wear a face mask, and everybody owns a ton of guns .and are walking around very angry all of the time. jeesh! Anyway, I digress. I buy the chewable vitamins at my local health food store, but they are available on line. They are the only vitamin I am able to take.

[springeramber in reply to phebamom]

Thank you - primary physician was the clue to USA! I will look up the vitamins

[phebamom in reply to springeramber]

Yes, in Missouri. I am very fortunate I am able to see my Primary and my Rheumatologist. I also have an oncologist I see four times a year. All are available, average wait time a month or so. But in an emergency I can come in that day or the next day or so. Face masks, temperature checks, and hand sanitizer are required at the door. Any procedure requires a Covid test. I have been tested twice. It was fast, and easy. Results in two days. There are no longer any magazines in the waiting area, but other than that and the large shield windows at admit desks, nothing has changed. Everyone wears a mask in the building, but that is the new normal. We have two large cities near us. One has a mask mandate, the other does not.

Smaller towns, rural areas, mask wearing is hit or miss. Some people are just dead set against mask wearing. They walk around angry all of the time. Wal Mart asks all to wear a mask, and the ground outside of the store is usually littered with masks people throw on the ground once they leave the store. It is all so sad.