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msmale

Iron Infusions

12 posts in this topic

Hi Everyone

 

I hope you are all keeping well in this disgustingly cold weather!!!

 

Does anyone have GAVE and had to have iron infusions? If so how low did your iron, haemoglobin and ferritin get before they did the infusion?

 

I am so exhausted and really feel that besides the usual aches and pains, that if I was able to have the infusion now I would be so well. The mycophenolate has finally kicked in and my skin is softening so besides this easily remedied issue life is pretty good. I know the doctors would have a good reason for not doing it but I never really get given a reason. Surely if you are symtomatic and it is affecting your life it's reason enough?

 

My iron is 4, my haemoglobin is 92 and my ferritin is 27 (this is 2 week old blood tests and I am sure they are probably less than this now as it is getting worse and I have dropped every blood test for the last 3).

 

Thanks in advance and lots of healing thoughts your way.

 

Cheers Michelle

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Hi Michelle,

 

You are certainly right about the freezing weather. Yesterday morning was the most frost I have seen for many years.

 

Welcome to this forum. I know that very soon you will get some feedback from our friends who have GAVE and will have some good advice and personal stories for you.

 

As I do not have scleroderma myself it is difficult for me to relate to your symptoms, but living with a person with scleroderma I do empathise with the fatigue you are experiencing.

My daughter has had several iron infusions, but not due to GAVE. Sometimes her iron is extremely low and no amount of tablets and foods brings it up.

 

Good to hear that the mycophenolate seems to be kicking in.

 

I am assuming that you are attending a doctor who is very familiar with scleroderma.

 

Let's see what our friends have to say and will keep posted to hear their advice.

 

:emoticons-group-hug:

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Hello Michelle

 

Cold weather? Yep got that here too!

 

Have a read of our GAVE resources including some treatments.

 

There are others on the forums with GAVE and hopefully they will soon chime in.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Michelle,

 

Sorry to hear that you've been feeling so exhausted. Unfortunately Fatigue is a very real problem with Scleroderma and I know many of us suffer badly with it. I've never had iron infusions so can't advise you from my own experience. I'm very pleased to hear that the Mycophenolate has been helping you.

 

We're also having cold weather in the UK; the only problem is that this is supposed to be our summer!! :emoticon-dont-know: :(


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Michelle. I'm posting from the U.S., so please excuse my American spelling.

 

It was actually GAVE that led to my SSc diagnosis. To treat the GAVE, I've had argon laser ablations, the first of which was preceded by a whole blood infusion. I've never had an iron infusion. The GAVE was discovered when a routine annual exam revealed that I was severely anemic: iron was 12 based on a reference range of 30-160 ug/dL; ferritin was < 3 based on a reference range of 15-150 ng/ML; hemoglobin was 6.7 based on a reference range of 12-16 g/dL. Since that initial episode, I've not had readings quite so low.

 

Judith

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Hi Michelle,

 

I have GAVE, and have had Iron Transfusions over a 12 month period, my ferritin levels were between 9-163, my Iron levels were between 1-10, my haemoglobin levels were between 52-96. This all happened between 2009/10. I have since had Argon Laser treatment which has been very successful.

 

Yoorah. Like you I was very tired and lethargic. I have also been suffering from anemia for many years prior to this, so I think that had an influence in my doctors decision to give me Iron transfusions. I was told that you can develop an alergic reaction to Iron (as with other medications) and they have to monitor you closely while you are being infused.

 

I went through a bowel endoscopy, a capsule endoscopy, and then another stomach endoscopy before they diagnosed GAVE. By then I had had several blood transfusions.

 

I was diagnosed with Systemic Sclerosis in 2008. My skin is still hard even though I have been on 2000mg of Mycophenolate a day. I have some lung involvement and gastrointestinal problems. They are also keeping a close eye on my kidney function as well as I have a history of kidney disease.

 

It has been a frustrating road, but I have learnt to be patient with the doctors as I came to realise that there is no quick fix to this disease and that what may be good for one patient is not necessarily right for another. I know of other scleroderma patients who are on completely different medications and treatments to me. Lucky for me I have a specialist in this field who is my doctor and helping me managing this.

 

Hope this has helped you in some way.

Best wishes,:emoticons-group-hug:

 

Deb

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Hi Deb,

 

Welcome to these friendly and informative forums!

 

It's great that you've found us, but I'm sorry that it's because you have Scleroderma and so many unpleasant symptoms. It sounds though as if you have a good specialist doctor which is so important in the treatment of this complex disease and it must be a relief to know that your kidney function is being regularly monitored. Many of our other members have, like you, faced a lot of frustration with Scleroderma but certainly your positive attitude really helps with the ups and downs of it.

 

Do please keep posting and let us know how you're faring. :emoticons-group-hug:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Deb, welcome from me too! It's good to hear another Australian voice.

 

I haven't much to add, except to mention an old friend of mine who developed a problem with iron after having been treated for anemia. She became really quite ill, with jaundiced looking skin and widespread blistering that would break and weep. As tired and horrible as you feel now, Michelle, I think I'd have to trust my doctors to know when the time for an infusion was right.

 

In addition to the link Jo gave you, I'd to point you at this guide from the Cleveland Clinic. It was written primarily for cancer patients but don't let that put you off. There are many good tips in it that apply to profound fatigue due to any cause. If you scroll down to the section titled 'Energy Conservation During Cancer Fatigue' and read from there, you'll be amazed at how many things there are to consider and try.

 

Best wishes and I'm shooing some of our very hot weather your way!


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Deb

 

Welcome to the forums! I have just restarted mycophenolate myself! I was on it for 10 months in 2007/2008 and had to stop it due to what I can only describe as crushing type headaches that did not respond to pain medication. Having been on methotrexate the rest of the time I have just given that the boot due to 24 hour nausea even after a reduced dose in favour of mycophenolate at half the 2007/2008 dose. I am hoping for good things from it for me and for you.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thank you all for your lovely warm welcome. It is nice to hear other voices out there. The support and information is really helpful.

 

Kind Regards,

 

Deb

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Hi Deb,

 

Welcome to the forum, as already mentioned by others around the globe.

 

Yes, it is a wonderful place to get some good sound advice and feel that others care, and they do!

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Hi Deb,

 

Welcome to Sclero Forums! You certainly have a lot of experience with the disease, and a great attitude to bolster you through it, too.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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