[SharonMV]

hello to all,

I haven't posted in a while - just been dealing with being sick. I'm still getting constant respiratoy & sinus infections (I have a primary immune deficiency, CVID). My doc has been increasing my IVIG dosage & I'm now at a level where I'm finally beginning to see some improvement. Still dealing with Lupus, seems like I'm always flaring but I haven't had a bad "super flare" in a few months and have been able to reduce my prednisone. And of course fibro is always present.

My latest blood tests revealed that my iron levels are low & I'm somewhat anemic. Also my thyroid level (have Grave's disease) is low again despite the massive dose of synthroid I take. But this is not all bad, as it explains why my fatigue has been soo bad (ie worse than my usual fatigue from Lupus, fibro, CVID, constant acute infections & several sleep disorders). Treatment for the low thyroid & iron deficiency should give me more energy.
Maybe I'll even be able to get out of the house!

Best Wishes to all of you,

Sharon

 

[Maia]

I'm pleased there is some improvement in some areas at least and hope for future improvement with some simple treatment options.

So they have no idea why the thryoid level is low? I wonder if absorption is being competed with by any of your other medications - is this even a possibility?

Oh well, good luck with getting that fatigue under better control. It was good to hear from you again. Take care! (I'm battling another sinus infection myself at the moment too - ugh!)

 

[raggedyann1]

Sharon,

You have quite a lot to deal with. I know what you mean about getting out of the house. When we went on a trip last summer it was the first time in almost a year that I felt better on a consistent basis. Since then I have had a few ups and downs but mostly up and better than I have been in a long long time.

I don't remember if you have children at home or not. I get obsessive about cleaning knobs and handles in our home when someone is sick. I usually don't sleep with my husband when he is sick or even thinks he is getting sick. I couldn't the first night this last time and so got the flu bug. Just a thought for you with your Immune Deficiency and all.

I would add about competing medications and ask are you taking it at the right time of day? I know my husband has to take his thyroid med either an hour before breakfast or 2 hours after breakfast. I think when food is present it doesn't absorb completely into the blood stream.

Take care,
Karen

 

[SharonMV]

Thank you Maia & Karen,

I was'nt taking the synthroid at the right time. But my doc did mention that the other day, so now I've corrected that problem. Don't think it's any of my meds. It could be malabsortion due to my immune deficiency. We'll check it again in a few weeks.

Karen - I'm in Southern CA too.

Sharon

 

[cmfinnis]

Hi Sharon,

I have an immunodeficiency as well and go to Kings. I have a low IgG, A and M. They think I might have CVID as well and have had a lot of ivig. however last summer I had a serious reaction and so I have refused anymore, til Christmas when it became an emergency and I had to have some (long story!)

I also have sle, hughes syndrome, pernicious anaemia (which is low vitamin B12 and means I need injections every 3 months), and immunodeficiency.

I do hope you continue to get increasing relief.

so lovely to meet someone else with similar issues, tho' wish we didn't have them!

Take care, love cathy x

 

[SharonMV]

Hi Cathy! It's nice to "meet" you. I don't think there are very many who have both a primary immune deficiency. I'm sorry that you had a bad reaction to your IVIG. I was diagnosed with Lupus in Feb 2006, CVID in June 2006. But I had been ill for many years before getting the correct diagnosis. I also have fibromyalgia, asthma, Grave's disease, sjorgrens and a few other things. Hope we get a chance to talk again.

Sharon

 

[Sage Hen]

Hi Sharon,

I remember you. I am glad to hear from you again. I hope that you begin to feel better with your new treatment. Take Care and Best wishes.

Love,
Sandy