I should have posted here, since it's a new and interesting subject. Read thread "Has anyone heard re B Rich". Anemia from inflamation is a new subject on the forum. I wonder how many others are anemic from PMR.
My husband just got back from Mayo clinic. He was very anemic and his hemoglobin was down to 8.9. They said he had lost about 5 pts. of blood. What they found was a bleeding stomach ulcer caused by the use of prednisone. He had lost about half of his normal blood supply. I almost lost him. He is being weaned off the prednisone at this time.
Cap
Oh my gosh! that's terrible. They did the whole stomach and colon thing on me about 4 months ago, and I'm not loosing blood anywhere. Somehow, and I don't understand how, the inflamation is causing the blood lose. My count was at 7 something, then they got it to 9.2 and it just keeps dropping down from there. I was taking iron, but it finally became normal. He said something about my body can't use what iron I have, whatever that means. He just said there was no more he could do and released me. It is a scary thing and it makes you feel so bad. I sure hope your husband does ok and starts to feel much better. Thanks for the post, Cap, and your concern. LoveI don't have the diagnosis of PR, but I was shocked when I was dxed a year ago with "inflammation anemia", which after I researched is a real disease. I thought anemia was "iron-poor blood". Took a year of MTX and now Plaquenil, and my newest blood work just has brought my anemia factors right up to the lowest number possible in the normal range. And I am not dragging myself around like a dead weight. Amazing, never even had heard of it before. Hmmm, I was anaemic for the first time in my life late last year. We all assumed it was due to a couple of very long and heavy periods (blamed on hormonal/age things, I was 51). Could be, but then again, even if the anaemia was directly related to the bleeding, not pmr, pmr could have caused the problem bleeding to start with. A couple of months on iron brought levels back to normal, but now I'm told I shouldn't take iron anymore, as iron turns stools black(ish) and that could disguise prednisone-related blood in the stool, which we are apparently supposed to look out for while on pred!?Hi Cathy, Thanks so much. I didn't think anyone but me ever heard of inflammation from anemia. What are MTX and Plaquenil and what do they do? Is one of them an injection? I will research it, but give me a sneak preveiw. I'm going to keep nagging the hematologist, but I need some info. I'm trying to figure out if one of these is the injection medicare won't pay for that costs 0 a week. Anything at all that you can tell me would make me very happy, and I'm so glad you're feeling better. Love
Chico, I also had the very low iron, but took prescription iron for about 5 months, and it finally came up to normal. He said something about I now have the iron reserve, but my body can't use it. I don't feel any stronger now though, because my blood is so low. Anyhow, he said stop taking the iron released me. I'm not giving up yet. I'm going to educate myself a little. There has to be a way to get the "paperwork" right so I can be treated. New Zealand, how interesting! I love talking to people from all over the world. Love
Britch - I mostly post over in RA where the crowds are, and MTX (methotrexate) and Plaquenil are two treatments for RA and lupus, which get alot of play over in that section. I take MTX (which is chemotherapy) once a week as its been proven to slow down the erosion of the bones from RA. Plaquenil helps with inflammation, as does MTX. I was put on MTX a year ago, and my anemia numbers didn't budge. I was put on Plaquenil three months ago and they finally moved up to the very very lowest numbers for normal.
When the doctor told me inflammation anemia, I started taking straight ferrous sulphate (iron), thinking it would help. Then I had my primary test me for the typical anemias - they were all normal, but my B12 was very HIGH, which is very unusual, and of course, no one will address that little anomaly.
I would definitely talk to your doctors about "inflammation anemia", its a real medical condition and from my experience, can be helped with drugs. The huge fatigues I was experiencing are lifting also, but I also researched and found out that our diseases "jerk" us out of deep REM sleep, even if we think we had a good night's sleep. I finally asked for pain medication and muscle relaxants, which I only take at night (I was prescribed 6x that amount per day LOL), and I know that has also helped my fatigue and weakness. Good luck. Cathy
this is all very interesting to me as i have allways found the fatigue to be the biggest problem, and common sense tells me that anemia will go along with fatigue, i can not wait to tell me dr. i want this to be investigated and have soom blood work done. i will call him first thing monday morningBetsy,
Read my post back in January, Ive had this anemia/inflamation problem since my PMR stared. Wonder if it,s PMR at all. Pred tood care of the pains but did nothing for the inflamation. I was having blood tests every month to monitor sed rate and every 3 months to monitor Red blood count and platelets, in fact got another appointment with hemo next week.
Dave
Thank you, Dave. I'll look it up. I've been anemic since last Nov, but just now got a diagnosis. First they thought leukemia, then it was al about low iron, then all of a sudden it's anemia from inflammation and they have nothing to give me that medicare will pay for. Thanks, I'm going to the archives and find your posts.
Betsy,
I have the same problem, I have Tricare Insurance, but the hemo wont give anything. I asked about Procrit as its supposed to build red blood cells, but he said I didnt need that, so I have been anemic for over three years. I asked the hemo if the blood would build back and he said probably not. sounds like we have the same problem.
Dave
My hematologist said the cost is 0 a week. Sounds like 0 per injection. That's outrageous. Don't you feel bad all the time? Some days I feel a little better, but most days I just want to go to sleep if I get still. What are they doing for you, just prednisone? Does it mean we'll never get over PMR because we don't have enough blood to fight it, and that the anemia will never go away because of the PMR inflammatiion. That's the way it sounds to me. This is really depressing.
I know I'm asking too many questions, but a few more please. At what prednisone dosage are you now? Do you take anything else for the inflammation? Did the hematologist just release you too?
Thanks, I am going to research procrit.
Betsy,
There was a point before I was put on the prednisone that all I wanted to do was sleep. My GP said I had post traumatic stress syndrome and put me on antidepressants that ended up putting me in the hospital, then I seen a psychiatrist who said I wasn’t depressed and recommended I see a Rheumatologist because he thought I may have Fibromyalgia. Anyway the Rheumatologist did the normal checks and said I had PMR and put me on pred, which I was on for two years, but the highest dose I was on was 15 mg, Now I am off that, relapsed 3 times on the way down, now only take Ibuprofen 800 mg as needed for the pains. A lot of the fatigue has gone away but no where near normal. The sed rate remains at around 44 which indicates inflammation and my red blood count remains low around 3.2 which would explain some of the fatigue and platelets arround 90K the hemo continues to take my co pays and blood and I get nothing in return other than the same answer you do. The Rheumatologist released me because I weaned myself off the prednisone and refused to take Methotrexate. I wonder how many more have this same problem with the anemia and don’t know it?
Dave
Dave, I'm amazed at the response over the anemia thing from so many people. Thanks for taking time to give me all that information. It really does help me understand. My platelet count was 687 last test. Supposed to be 140 to 400. white count 15.5, hemoglobin 9.2. Everything is so abnormal.
I know I get depressed just from feeling so bad, but I usually manage to find a little thread of hope to hang on to. I surely don't want any anti depression meds on top of everything else. Thanks again, Dave. I appreciate it.
Have a good day everyone.
My husband had severe anemia and iron was of no use. Finally , the cause was determined after his colon ruptured and he developed peritonitis. It seems that his anemia was being caused by an infection in his colon. The hematologist stated that his anemia had been caused by chronic infection. Only when it became acute, did he realize what had been going on.Melania, I can't believe how many people have been anemic for so many different reasons. It's terrible to be so tired all the time.