Anyone else have low blood iron (anemia) with PMR?

Freesia, I've just completed a short course of iron tabs as I was found to be anaemic just after Christmas. General take on it was that it was a combination of Pred and PMR/GCA and no one seemed particularly surprised about it.

Having bloods done on the 27th (two weeks after finishing the course) and hoping that it will now have righted itself.

Nefret/Catie

Hi Nefret,

Thanks for your input. I thought I was the only one with this problem.

Trouble is, I've been taking iron for at least 9 months now, and there hasn't been any appreciable increase in my hemoglobin. The "iron stores" or ferritin in my blood have increased a bit, but not the hemoglobin. So I am feeling kind of worried. I started with about 50 mg of "gentle iron" and increased it to 75, then later I added some 18 mg capsules --so I have been taking at least 93 mg per day for an estimated nine months. My primary care doctor told me that hemoglobin increases slowly, but I don't think it's supposed to be this slow.

I'll look forward to hearing the results of your blood test. I hope that the iron supplements work for you! Please keep us posted.

I'm getting nervous about the appointment with the hematologist, which is at 1 p.m. today.

Thanks again.

freesia

Hello Freesia

During my year of undiagnosed (and therefore untreated) PMR, I was diagnosed with low iron levels. It wasn't treated and spontaneously resolved. It didn't recur when on steroids so in my case it appeared to be a symptom of PMR. I do hope the haematology appointment goes well tomorrow.

MrsO(Shirley)

Hi Mrs O, and all,

Sorry to hear that you had anemia, too, MrsO, but lucky you that it resolved on it's own. That is great!

I was really happy with my hematology appointment (which was actually today! ). The doctor is really nice, and has a nice assistant, and the exam/interview was really thorough. She had me get more blood tests just to rule out Thalassemia and something else (something about red blood cells breaking apart?). Also, I now have to take 10 times the amount of iron I was taking! Can you believe this? Instead of 93 mg, I have to take 325 mg three times a day! I don't know if my stomach/esophagus etc will be able to tolerate this amount of iron. If it can't, I have to go for infusions. I have to take several different things to aid in uhhhh, preventing constipation (sorry). Hopefully this will all work.

At this level of supplements, she expects my hemoglobin to get back to normal in 3 months! Nefret I am curious as to how much iron your doctor has prescribed. Although maybe the amount is based on the degree of anemia (?).

I feel more positive than I have in a long time. Not knowing what was wrong was weighing heavy on my mind...even though the test results aren't back, of course, I still feel relieved and more positive than I have in a long time. I doubt I have Thalassemia because I believe this mainly occurs in Mediterranean people, and as far as I know, I don't have any Mediterranean blood in me.

Take care everyone,

freesia

Hi Freesia

I'm so glad your haematology appointment went well and hope that the extra iron will now solve the problem. I can understand your worries about the high dose leading to tummy problems but should they arise at least you know that iron injections are available as an alternative. I hope the other test results are negative. I'm afraid I don't know much about anaemia, apart from a friend's father who suffered from pernicious anaemia and had Vitamin B12 injections - Eileen will know heaps I'm sure.

hi anaemia is a common side affect of steroids which is one of the reasons why you should have full blood counts now and again ,it takes oral iron a long time to work because it is not easily absorbed good luck carol k

Hi MrsO and carolk,

I hope I'm not imagining things, but I feel some improvement overnight--and I didn't even take the full 975 mgs of iron yesterday! It was too late in the day by the time I got home from the doctor and the pharmacy, so I only took one 325 mg pill. I woke up during the night and had less of that "stiff and sore all over" feeling I've had lately. I was so excited when I woke up feeling better I wanted to get out of bed and dance! Not that I can dance that well yet, but I felt like celebrating! I know I shouldn't get too excited...it could all change, I guess.

Actually, the hematologist said that if my tummy can't tolerate the oral iron supplement, I will be able to get infusions, which I somehow picture as being like chemotherapy (?). In other words, having an IV drip and sitting awhile while the solution drips into a vein. I guess they don't give injections anymore.

I'm just wondering now --why did my primary care doctor wait so long to send me to a hematologist, and why on earth didn't my rheumatologist read the CBC blood test reports that were forwarded to her (that showed I was anemic) and do something about it? My primary care doctor said that iron deficiency can cause muscle stiffness, etc--so surely the rheumy also knows this? I'm trying not to be angry, but honestly, it seems so obvious! Someone should have gotten a clue way before now! Shouldn't they?

Thanks for your responses. I hope my experience can help someone else.

freesia

Freesia, I can't tell you how much iron the doc gave me, for the simple reason that I can't remember! It might come back to me, or I will ask next time I see her. I don't think it was a particularly remarkable dose.

I'm pretty sure that if I were on that high a dose I would have some 'drainage' problems too particularly as I am taking co-codamol at times. I have got prescription stuff for it, but I usually rely on senna - it can be taken in so many different ways.

Nefret/Catie

Hi catie,

Don't worry about forgetting what the dosage was--I'm sure I would have, too! : ) It's hard to remember such things. I was just curious.

So far the tummy and drainage LOL are doing okay, but of course I haven't experienced the full dosage of iron yet. I'm glad to hear your good report on the senna. I've never used it before but did take one tablet last night.

It seems like there is also some kind of problem taking prednisone and iron together--you need to wait four hours before taking iron? I don't know where I read this. I may call the doctor's office back and possibly talk to a nutritionist if the doc's assistant doesn't know the answer.

Thanks for your concern! Take care and hope you are feeling well.

freesia

hi you are right about the infusions they are likely to be drips the advantage over injections is the results can last several months where as iron injections are a course usually daily with the added disadvantage of tenderness and bruising according often to the skill of the nurse but also a problem re steroids . oral iron is difficult to absorb and many of the drugs given to protect stomachs when taking steroids block absorbtion .re constipation it sometimes helps to take a softener ie lactulose and only use aperients if needed this can avoid the gripey pain that can occur with aperients because they work by putting the bowel into spasm to push the stool down .i am sure you know all this , hope all goes well carolk i mean in life not your bowels !!!!!!1

Hi carolk,

Thanks for all the good information! As far as iron injections, there was a former nurse on the forums, Nanatjjj, and she described the shots. She said they could be dangerous if not administered correctly...they could cause tissue "sloughing" or something like that. Sounds frightening!

I've never heard the word "aperients" so I will look it up! I am a little concerned about using Colace and Senna for too long, although I used to drink Citrucel and Metamucil every day for years, and my gut was fine. I read the printout that the pharmacy gives you with every prescription and it says that using Colace for too long can cause loss of normal bowel function. I wonder if that can happen with conservative use? Sometimes I think the manufacturers are just covering their behinds (no pun intended) in case someone decides to sue for damages.

Did you say that you had low blood iron, too?

I'm laughing at myself for thinking that the extra iron caused an improvement overnight...I tend to get enthusiastic! I really did feel less stiff and sore, but I also was just happy that finally something is being done about this anemia, and that made me feel better, too! I know that the iron is absorbed slowly, so it probably did not make me feel better. (?)

Thanks again and have a great day.

freesia

carolk,

I also meant to say that absorption is no doubt a problem since I have to take either Zantac or Nexium to protect my stomach, and I also have to take calcium to try to prevent osteoporosis....I'm wondering just how many nutrients really are being absorbed!

cheers,

freesia

Constipation = Prunes in syrup or Syrup of figs.

Thank you, mrs k! I do include prunes in my diet : ) I think this experience is going to make me eat more vegetables and things with a lot of bulk in them, such as prunes!

freesia

hi aperients are things like senna any med that stimulates the bowel by spasm ,sorry our medication names do not always cross over to other countries ,you are right about your stomach protectors slowing absorption and iron is a problem taken orally . i did have anemia but not with pmr but its symptoms are often muscle fatigue etc plus low mood so it cant be helping the situation ,good luck with the prunes cant stand them myself !!!! carolk