Awaiting an Iron Infusion

[Misty2552017]

Hi all!

I have been diagnosed with Systemic Scleroderma and Raynaud's three months ago and am very anaemic. I have just received a letter from my consultant saying that my haemoglobin has dropped again as has my Ferritin level referred me for an iron infusion and a repeat endoscopy ( I have G.A.V.E.?(watermelon stomach?)

Can anyone tell me what does the infusion involve and if I'll get any improvement to my condition?

PS I'm attending the West Suffolk Hospital

[LucyJean]

Hi there, usually you are just given a liquid iron solution via a cannula in your hand/arm and you will be seated in a comfy chair, while the nurses monitor you for the duration of the infusion. Shouldn't be any real side effects and hopefully it will make you feel MUCH better! It won't improve the Scleroderma, it is just to stop the anaemia and make your blood more efficient at carrying oxygen around your body.

All my best

Lucy x

[Misty2552017 in reply to LucyJean]

Thanks! That's very reassuring. I'm looking forward to having more energy!

[naila_007 in reply to Misty2552017]

Hi Misty2552017,

How did the infusion go. I think i am also going to be diagnosed with GAVE just waiting for confirmation - am taking Ferrous sulphate only at the moment.

Naila

[Misty2552017 in reply to naila_007]

I’m having the first of two infusions tomorrow so I’ll let you know...still awaiting appointment for a repeat endoscopy re GAVE...

[GillSuffolk]

Hello Misty, I noticed that you are having treatment at WSH. I to have been going through very similar issues as you. I attend WSH also just finished having chemo at Addenbrookes, I have "watermelon" stomach, next week I am going to have endoscopy via the "capsule" method, have you heard about it ? please message me, perhaps we could get together & share our experiences....

Regards Gill X

[Misty2552017]

Hello GillSuffolk, I, too am having an endoscopy re my watermelon stomach on 21st November.I had a letter from the chap who is doing it to say that they will probably laser some prominent blood vessels, is that the ‘capsule “ method?

I had two iron infusions last month and I can’t say that I’ve noticed any dramatic improvement.My blood tests show a slight improvement except to the haemoglobin which continues to drop.

My GP told me last week that if it drops to 80 or below I will need a blood transfusion...next b/t is on Monday!

My worst problem is the Raynaud’s. My hands are constantly cold and white. Also lightheadedness and lack of energy. Do you have similar symptoms?

Regards Viv