New Diagnosis and recommendation for life time therapy!

[Carolina]

Wow, curiouser and curiouser, as Alice said, in wonderland.

So maybe it isn't a drug, it's a medical treatment?  Well it isn't a drug, of course, it's actually putting other people's immune factors into your own blood.  It takes 1000 blood donations to make one dose of the immune factors, which is why it is so expensive.

And I'm looking the SCIV, or subq, which is self administration, weekly, at home, rather than monthly in an infusion center.

I am just going to take this one step at a time, for sure.

The nice thing is that the horrid upper and lower respiratory infection which has made me so miserable since March 10, is finally clearing up and I feel half way human.   My ears are blocked, so I'm deafer than usual, but that's bearable.

I feel like I've had a crash course in a new condition!

This is for those of you who have experience with this.

The factors I haven't given values for are in the normal range.


G   328  (range  588-1573)   

M  21     (range 57-237)     

G Subclass total  402  (range  767-1590)

G Subclass 1  198  (range 341-894)

Subclass 2  124  (range 171-632)

Subclass 3  18.1  (range 18.4-106)

The SAGA continues.  But it's nice to have some relief from feeling so bad.

Hugs

Elaine
 

[irish]

Caroline, Now you know why you have been sick so much. These immune system things can be so low and we can have just sort of run of the mill infections---or so the doctors think. We don't realize what is wrong because we get sick slowly much of the time and just get used to having so many URI' s.

You are right to just hang in there and take one step at a time. With me I was put on the IVIG for my myasthenia gravis instead of the usual Imuran because I had such low t-cells. I could not take the Imuran at that time because they knew I would be  having really bad infections from the immune suppressant. We just never know what is going to hit us, do we. Can't get too overwrought because we can't change it and also, things just do turn out one way or another. Good luck, girl. IRish

[warmwaters]

I went down the rabbit hole of figuring out how to do IVIG treatments. Talk with your doctors office about the medical codes they are going to use.... If you can get this covered as a medical treatment, then under Medicare, you don't end up paying very much. I think out of pocket was somewhere in the range of $300 for three days of infusions. 

An unfortunate thing is that Medicare has no "pre-approval" process, so you can't be sure of exactly how everything will work in terms of costs.

For some IVIG can be almost a miracle. Search for IVIG here, I got some great advice about the process when I asked about it last year.

I had one round of infusions, but had a reaction, and it won't work for me.

[Carolina]

Thanks warmwaters!

I will be seeing the Immunologist who specializes in the condition which has IVIG treatments as the only treatment.

One thing I do know:  I have two autoimmune conditions, SICCA (which is Sjogren's without the blood work factors) and Interstitial Cystitis.

IVIG doesn't address the symptoms of either autoimmune conditions.

So even if I do take IVIG, and it does 'work for me', I will still have the fatigue and pain of the conditions that aren't addressed with IVIG.

That is one reason I've waited so long to 'get on board' with this diagnosis (CVID)  and treatment (IVIG).

I'm hoping to have the home infusions, which are self administered weekly.

I'm just taking this all one day at a time!

Hugs

Elaine

[quietdynamics]

Wow, curiouser and curiouser, as Alice said, in wonderland.

... It takes 1000 blood donations to make one dose of the immune factors, which is why it is so expensive.

And I'm looking the SCIV, or subq, which is self administration, weekly, at home, rather than monthly in an infusion center.

I am just going to take this one step at a time, for sure.

The nice thing is that the horrid upper and lower respiratory infection which has made me so miserable since March 10, is finally clearing up and I feel half way human.   My ears are blocked, so I'm deafer than usual, but that's bearable.

I feel like I've had a crash course in a new condition!

"I feel like I've had a crash course in a new condition!"  Yes, I feel that I am frequently 'testing' my ability on the learning curve and picking the brain of DH and the two Drs. I trust. Who I also give information too.
Wrap my brain somewhat around one aspect ...and another one pops up.

I suspected you would opt for the treatment at home.

So happy to hear that you are feeling better, that you are feeling some relief....and I am hoping to hear more good news.

(At some point in the treatment do people undergoing this treatment become candidates to donate?...just curious)