After months of feeling like hell on toast and getting nowhere with GP, the rheumy has come to the rescue and is prescribing some iron infusions as I've been on tablets for 2 1/2 years with little change. I'm always anaemic. He said it's a start, but it sounds like he's got some other thoughts as well so we'll see.
I've also managed to get scheduled to see rheumy at a clinic he holds in the nearby area, saving me having to drive over an hour and a half. IF that doesn't work, phonecalls have been agreed for really crap days, and he will run through symptoms and adjust prescriptions or prescribe new stuff as needed.
So semi-yay, but I've never had infusions before. How long are they, and how long before results? Are they usually a one-off, or is it something I may have to keep doing (seriously, I'm constantly anaemic, tablets just don't work it seems).?
Cheers in advance.
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Silvergilt
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Have they not investigated the cause of your anemia? Ive suffered for years taking iron tablets and finally they found blood in my bowel .. they dont know where its coming from but am waiting to see the Gastro ... Iron infusion doesnt take long and you will get check ups to see if your anemia is level ... But then their level rates for being Anemic is wrong as even if you're in the lower rate they will say your iron levels are fine .. -x-
Hi Ellie26, I can empathise with your anaemia as I'm going thru same thing. I've just had an Endoscopy & Colonoscopy (camera down throat & bum). I only had gas & air. The areas were numbed so I didn't feel much but my colonoscopy felt like bad period pains. I had no one to stay with for 24 hrs so couldn't anaesthetic due to H&S. No obvious bleeding found. Still waiting for biopsy results. Med pros seem to be running out of ideas. I've been anaemic for 7mths now & have iron in my diet & meds. Let's pray that they found issues soon so we can get on with our lives! Pls keep me updated. I'll do same & add you to following list. GP & Rheumy advised that I'm still anaemic due to abnormal bleeding/organ leakage but don't know where it's coming from.
I hope they find something as it took a while for them to actually take me seriously .. I saw another gp and she referred me (one of the older gps) So now its a waiting game .. x
No investigations. I get the usual 'because woman' or 'because fat' conclusions, so it's just treating symptoms and has been for a while now. I've been off and on tablets for years, but the rheumy is going to start with infusions and if that doesn't work, I think he will refer me on. We will see, I'm just done being so tired.
Hi, 2 1/2 yrs being anaemic just seems too long to not be treated with infusions.im glad you're being offered it now. I've been anaemic for 7mths & when I suggested infusions, GP told me that my haemoglobin levels are not low enough & the infusion might push my levels too high causing another health condition. Sadly I can't advise you about iron infusions as not had it..yet. My body isn't digesting iron & my levels are actually going down. GP advised this is due to abnormal bleeding/organ leakage. They started an investigation but it's a slow process. Recently I had an Endoscopy & Colonscopy (camera up my bum & down my throat) but there was no obvious bleeding. I'm waiting for the biopsy results then med pros will decide nxt move. I pray the infusions work for you. Pls keep me updated. I need to know the cause of mine & can't commit to work or plans until this anaemia sorted out cos it's affecting my energy levels & it may develop into a flair if not sorted. Good luck with it Silvergilt!
Yeah I've had this for a while, mostly dismissed as just 'one of those things'. It took my rheumy getting concerned and offering infusions as my GP certainly wasn't going to! So I guess that is the first step, we will get the bloods done and will see how I feel, if it still isn't working well, then may need more investigating.
My GP won't offer me iron infusions. They're telling me their the secondary health providers so it's my Rheumys responsibility. We're just waiting for waiting for my biopsy results. My iron levels are still going down even though I have iron in my diet & ferrous fumarate tabs. Hope they find the cause of it for both of us. I finding it frustrating but know I need to be patient & assertive to get this investigated. I want to know why my body isn't absorbing the iron. Hope you find out as well.
Hi reading threw your post,like ask have you been given a mri or cat scan on organs surely best way identity cause of bleed . rheumatologist did for me mine is fibroids only cause anemia. Hope you find answer soon.
No, none of those. This may be why he is doing the infusions first, see if it's just due to really heavy bleeds due to perimenopause. If it still continues, then perhaps more investigation will happen. I'm deficient in just about everything tbh - Vit D was low as well so I was taking tablets for that for a while, then there was concern about my B12. Essentially, I was malnourished (I just don't look as if that could possibly be an issue), so I'm working on that. I think there's been some talk between rheumy and GP as I've just received a letter for an app't for some investigation of kidneys and so on, so we'll see on that score too.
I've had anaemia for a few years now & docs put me on & off iron supplements.However,recently a dermatologist asked if I'd ever been tested for coeliacs disease - that would cause low iron absorbtion.It might be worth other folks investigating this too.
Hi silvergilt. I've now had two iron infusions - I steadily became anemic due to ridiculously heavy periods (I'm on warfarin; also have Hughes Syndrome). They (the iron!) have been fantastic. Done at the haematology unit of the local hospital for me, they take around 30 - 45 minutes. It is then another couple of weeks before their effect is really noticeable - and then, bingo! If you get sent to the haematologist, then they should hopefully do full investigations as to the cause as well as treat you. Best wishes.
I recently had my first iron infusion and it went well. I feel a lot better for it - my HB and ferritin levels were always low - I suffered from anaemia for years and years. I now can walk to the top of the stairs without having to take a breath and seeing stars! Good luck - you'll feel better!
I've never had an iron infusion but when I was first officially diagnosed with Scleroderma/Lupus, they discovered my iron was in my boots as well. My haemoglobin was hanging in there, just about, but I still felt wretched. I was tested for coeliacs and had cameras up, down and whatever other way you could think. Unpleasant but no cause could be found. Fortunately a course of iron tablets sorted me out but iron infusions are good if you cannot not absorb iron normally.
I hope you get on well with your infusions and you start to notice an improvement. Good luck.
Ok,all best in further tests infusion.good pointers above re coliaec discease.
I'm low calcium vitamin d on treatment have eat extra lactose free cheese milk can not take dairy.b12 is ok in me.on iron I'm ok off it weal legs dizziness low hb.
A quick update on this as I just got the forms and paperwork in, I was cc-ed into the letter sent to my GP for iron infusions. It seems the recommendation is for a coeliac screen, a more thorough thyroid test, and a GI check and something to screen for colitis (will google, I've no idea what that is!) but it's going to be done after the infusion. So that's all well and good - puts the whole 'just lose weight' thing to rest at least for a little while as investigations look as if they will be done, so I've got to schedule for bloods and then get some other things done in the future. We'll see what I can manage, but most of all I am SOOOO grateful my meetings, clinics, and infusions will be more local. Driving so far was really doing me in.
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Tests, test and more bloody tests!
Has anyone written to their GP to ask to be referred to a different Rheumy?
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