Having a hard time

[SharonMV]

I have determined to post about this today. I've been living with this knowledge for several weeks, even told some of my family, but somehow it is harder to say it here. Maybe because you understand the mixed feelings that come with diagnoses after years of illness. My dx of Lupus was pretty much confimed at my first Rheumy appt. in April, but he wanted to do more tests. Then at my 2nd appt (May 25) , I found out not only do I have Lupus, but also a Primary Immune Deficiency(Hyppogammaglobulinemia or CVID) and that I need IV infusions of IG (immunoglobulins). Since I have suffered with constant severe respiratory infections for years, my first response was "when can I start the treatment?" Not so easy of course - first I have to see an Immunologist (appt is June 28th), then more tests, etc. So I don't know how long it will be till I can get the IVIG which will probably needed for the rest of my life. Meanwhile I've had two sinus infections this month, am on double strength antibiotics and now I've got another infection in the works (started having a bad fever yesterday). I know it seems strange to be both immune deficient and autoimmune, but apparently, people with CVID are more likely to develop autoimmune problems. And it is so frustrating to know there is help for me and not to be able to get it or know when I'll be able to. But at least my Lupus is being treated and now I have hope.
Thanks for listening,
Sharon

[crm1209]

Wow, I can understand why you WOULD be having a hard time -- what a double-whammy you've been given. I'm sure glad your rheumatologist followed up and found the CVID, and I'm relieved for you that you've got the appointments in place to begin the process of getting it treated, too. I'll certainly be keeping you in my thoughts and I hope to hear how you're doing.

Renee style_emoticons/<#EMO_DIR#>/foryou.gif

[Dar]

Sorry you're having such a rough time right now. I'm glad you found this place as iti is very suppotive and knowledgable bunch.

Good luck.

[Mariposa]

<span style="color:#CC66CC"> style_emoticons/<#EMO_DIR#>/hugbetter.gif (((((HUGS 4 U))))))) style_emoticons/<#EMO_DIR#>/hugbetter.gif </span>

[helloos]

Hi Sharon and nice to meet you.

I am sorry that you are not getting treatment fast enought but try to look at it this way, they are doing all the right testing for you and making sure what to do. It is very good that you are going to that doctor. You certaintly want everything to be looked at before the treatment starts. Just a little more time to go and you will start to feel better. Keep telling youreself that.

You are right, we do understand each others feelings so let it all out here and don't be afraid too.

Nice to meet you and hope that your testing and fast and your treatment can begin. http://i41.photobucket.com/albums/e278/Craftqueen/WelcometotheGroup.jpg

[SharonMV]

Thank you all for the hugs & encouragement. I see the Immunologist next Wed. - less than a week to wait now. Saw my primary Dr yesterday & got a Rocephin IM shot to help with my current respiratory infection. She's almost as anxious as I am to get me started on the IVIG treatment. Told me to have the immunologist call her & she'd fill him in on my long history of recurrant infections,multiple hospital stays, many courses of IV antibiotics etc. I'll let you know how it goes.

Sharon

[raggedyann1]

Sharon,

Did the rheumatologist start you on any medications for your lupus? I think he is a wise man to send you to an immunologist for treatment of your CVID. That shows he doesn't think he can do it all. I am sure the wait must be agonizing at this point since you know what will help the CVID. The IVIG will also help your lupus to some extent.

Let us know how your appointment goes.

Take care,
Karen