any one else have problems with anemia

[lmpieroni]

Hi i have raynauds scleroderma does any one else suffer from Anemia and low hemoglobin, i am having a terrible time at the moment and would be glad of any advice

[judyt]

I don't know about advice, I have Anaemia with Scleroderma, Sjogren's, PBC and Achalasia and I have no ideas!! I can't tolerate oral iron therapy because it just goes straight through me and makes me very sore at the other end. I have been bleeding internally from time to time and the other thing is that because of the Sclerosis in my intestines things like iron don't get absorbed. So far this year I have had 3 units of red cells transfused and 2 units of Ferritin infusions. Am to have an enteroscopy which looks into the small intestine soon and after that will just have to continue with the infusions and transfusions. Have blood tests every 2 weeks to keep track of what is happening.

[Kelfreem in reply to judyt]

Have you had your b 12 checked? It's not a blood test they routinely do so you may need to ask them to check it, I know I have a b 12 deficiency along with many other auto immune problems and raynauds. So just a thought as it could cause anemia, also if its not b12 have they tested or found out why you are anemic in the first place? Hope this helps xx

[lmpieroni in reply to Kelfreem]

HI Kelfreem, the doctor has check my B12 levels and he said that is fine, hopefully my appt at the hospital will sort things out, thanks so much for your reply it is very helpful. take care of yourself

[judyt in reply to Kelfreem]

My blood screening has ruled out B12 deficiency, that was done early on. Recently I asked a Doc. in the hospital about my B12, just to be sure, and she said that my profile ruled out B12 as a problem. Would be easier just to have an injection every now and then methinks!!

[lmpieroni in reply to judyt]

HI Judyt thanks so much for your reply, i have had the camera into my stomach and bowel and they have said there is some slight bleeding internally so maybe that is the problem, they have told me that i have to give the iron tablets a chance to take effect, but usually after the first week of going back on them i am ok, so i am finding it difficult , maybe i just have to be more patient. I am going back to the hospital soon so hopefully things will get sorted out. Hope you are well take care of your self

[cobr1]

Hi, I am new to here but have been diagnosed with Raynaud's for approx 4 years, my GP and rhumatologist prescribed Nifedrin (but I couldn't tolerate it) and painkillers my GP says there is nothing else she can prescribe and I can only be referred the consultant if she thinks things have deteriorated significantly, I have had problems with anaemia for approx six years and had a number of test but no reason can be found, I struggle taking iron tablets recently so she advises more iron rich diet and I need to have blood tests every 2 to 3 months to monitor things, it doesn't help you unfortunately -or me - but I hope something happens soon because it gets depressing.

[lmpieroni in reply to cobr1]

Hi Cobr1, thank you for your reply, my doctors don`t seem to know why my iron levels drop either and i agree it is depressing, so i try to stay positive i think you just have to take each day as it comes . take care xx

[Dawna]

Yes I have become iron deficient for many years but mine was due to a kidney transplant. Since that time I take a B12 shot once a month and about once a year have to have an IV drip to help with the iron deficiency. I have had to see a hematologist for this. I can always tell when its time, I start to crave ice and am overly tired and weak, and get short of breath. but the ice is the first clue. Has your doctor had you see a Hematologist? They are really the experts with this problem.

Since all this started I have developed Raynalds but the bp meds make me too weak to stand up so I can't take them. I also have a pace maker. I cannot get into see a Rematologist for at least a year! That's hard to believe.