PMR and Anemia

[Amkoffee]

My rheumatologist just told me that I am anemic. And that the reason I'm anemic is because my inflammation is high. I had to stop taking prednisone about a year ago because I developed severe osteoporosis from taking prednisone. I ended up breaking a total of 10 bones in about 12 months. My pain is unbearable but this is just a kick in the face.

[SnazzyD]

My heart goes out to you. I gather that you didn’t take Humera because your insurance didn’t cover it which is tragic. To think in the UK so many people are tacitly watching their NHS being dismantled bit by bit and handed to the private sector. Anyway, anaemia hopefully should be treated easily and cheaply. Do they think you need just iron/folic acid or B12 injections as well? Would they consider trying some sort of DMARD (Eg Methotrexate) or a biologic (Actemra), insurance permitting?

[PMRpro Ambassador in reply to SnazzyD]

Mmmm - but the anaemia of chronic illness/inflammation doesn't always mean body stores of iron are low.

[SnazzyD in reply to PMRpro]

True

[Amkoffee in reply to PMRpro]

Does that mean that taking iron will not do the trick? What are the implications of chronic anemia? I know you're not a doctor but these are the questions that are going on in my mind.

[PMRpro Ambassador in reply to Amkoffee]

What is your haemoglobin level? And the ferritin? It all depends on the levels.

If the haemoglobin is low and the ferritin high that probably means your body iron stores are fine and more as supplements may make you unwell. If the haemoglobin is low and the ferritin low then you are probably short of iron and taking a supplement may help.

irondisorders.org/iron-defi....

Whether you have problems if you are anaemic depends on the degree. A woman's normal haemoglobin is 12 - 15.5 mg/dl, a man's a bit higher. If it gets too low then you may be tired and short of breath on exertion but it can be a bit low and not cause you any symptoms at all but a doctor might still say you are anaemic.

mayoclinic.org/tests-proced...

And there are various sorts of anaemia - due too little iron, too few red blood cells, bleeding. He can't say it is just due to inflammation being high - my ferritin is high but I have never been anaemic. If he is basing it on a high ferritin level - then you shouldn't take supplements. He doesn't sound very empathetic - or am I misjudging him?

[Amkoffee in reply to SnazzyD]

I have tried both Humira and Enbrel but neither one did anything for my pain. And at this point I can't afford it. When I did try both of them my income was lower and I was getting it for free from the company. Unfortunately my husband's income increased a tad too much to qualify.

[SnazzyD in reply to Amkoffee]

Sorry, I was having a brain blank, by Humira I was thinking IV bone treatment. It isn’t, so what we’re you offered for the osteoporosis directly? Now, I see that’s been answered already 🙄

[PMRpro Ambassador]

Sorry - can't remember, were you never offered bone-building medication? They can't have it all ways - and even if pred is the culprit there are other ways of approaching dealing with that.

You really have had a horrible journey.

[Amkoffee in reply to PMRpro]

I was taking calcium the entire time I was taking prednisone. And then when my osteoporosis reared its ugly head I was treated first with reclast and then Prolia. I had a horrible reaction to the Reclast so I just recently used Prolia.

[yogabonnie]

I am so sorry. Just read your other posts.. I was wondering if you know your DEXA scan numbers? and it is terrible you cannot get your meds. I am in the US too. hoping things will changed prescription wise!!! and we will be able to get them. I am doing a big anti inflammatory diet which I try NOT to insist the world go on...haha ... but you might look in to it at this point. It is all GREENS. smoothies and salads. you can you tube Dr. Brook Goldner if you are interested. Not an easy diet. but lots of happy people . also on Facebook .. smoothie shred. AND you dont have to pay anything. many free videos. ... I am very interested in the Dexa scan numbers as I have osteoporosis (before prednisone and now have been on pred 3 years. ( best of luck to you.!!

[Amkoffee in reply to yogabonnie]

I had a dexa scan in April 2018 and the results were that I only had osteopenia. Then in July of 2018 I broke four bones in my back simply by bending over. I would say the dexa scan was wrong. My recent dexa scan showed that I had worsening conditions in my hips despite my use of reclast and Prolia.

[HeronNS]

I am so sorry to hear of this. Was your ferritin level checked? With the "anaemia of chronic illness" sometimes haemoglobin is low but actual body stores are sufficient, in which case iron supplements are contraindicated.

I may have asked you this question before, but when your osteoporosis developed were you properly tested for all possible secondary causes of osteoporosis?

And I quite agree, you seem to have been left hanging with no proper treatment at all. I don't know how your system works but it seems to me you need to be under the care of a specialist who actually cares about the wellbeing of their patients. 🤗🍀

[Amkoffee in reply to HeronNS]

I will definitely have to ask to have my ferritin levels checked because it was just my hemoglobin that was checked. I do seem to be having a problem finding any kind of a doctor that gives it s***.