It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Immune Disorders Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 06-15-2013, 11:11 AM   #16
Newbie
(female)
 
Join Date: Jun 2013
Location: Chicago, IL
Posts: 5
lilly64 HB User
Re: Hypogammaglobulinemia

@ladybud: Who are you responding to? If you are responding to my post, I would like to reply. Let me know! Thanks!
L

 
Reply With Quote
Old 06-15-2013, 06:03 PM   #17
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 4,902
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: Hypogammaglobulinemia

I was responding to mws, the original person who started this thread. Some of the info may apply to others however.

 
Reply With Quote
Sponsors Lightbulb
   
Old 06-23-2013, 04:44 PM   #18
Newbie
(female)
 
Join Date: Sep 2012
Posts: 1
km66 HB User
Re: Hypogammaglobulinemia

Quote:
Originally Posted by lilly64 View Post
I am new to this thread and I hope that all who have posted here are able to clarify things for me. I have been undergoing tests for misc conditions, mainly MS, and my neurologist ordered the electrophoresis blood test that came back as having hypogammaglobulinemia. He then referred me to a hematologist. My other regular blood work (CBC) indicates that I also have macrocytosis (too few red blood cells but they are large), a low platelet count, low calcium (all I eat is dairy), and low folic acid. However, the low folic acid just occurred with the most recent blood work and was never a cause of the macrocytosis (this has been showing up for three years, with a steady increase). So I don't think that it is now at all the reason for the macro. However, the hematologist jumped on that bandwagon as the reason and didn't listen when I told him that just showed up. So of course he said that taking folic acid supplements would relieve my fatigue - fatigue I have had for a few years. And I mean like, dozing off at the wheel while driving fatigue! First it was a vitamin D deficiency (very low) that they blamed on the fatigue. However, that is back to normal with supplements. Now it is the folic acid they are blaming as fatigue - don't think so.... What is very frustrating is that the ENT says a low folic acid level would not make me tired, but the hematologist says it would.

Meanwhile, I find this swelling above my clavicle bone and went to my primary doc. He said my lymph nodes on the left side were enlarged and sent me for a CT, which showed a small enlargement on the right side. Neither the ENT nor the hematologist can feel enlargement. However, they both say that a needle biopsy would be a good idea; um, a biopsy on what?! There is nothing there to biopsy!

But I definitely have this Hypogammaglobulinemia as shown on the serum test; I never said that I have cancer!! The hematologist looks at me yesterday and tells me that he should "show me around to those that are in chemo - those that really have cancer." I have NO idea why he would say this. Aren't there other disorders of the blood besides cancer, such as the hypo? I felt like an idiot (or he made me feel like an idiot) for being there. I was merely following the referrals of my doctors. He did do the next step of blood work, with hesitation mind you, telling me that he better just follow the text book...

Any and all comments to this confusion would be greatly appreciated. Thank you....

 
Reply With Quote
Old 07-06-2013, 12:07 PM   #19
Newbie
(female)
 
Join Date: Jun 2013
Location: Chicago, IL
Posts: 5
lilly64 HB User
Re: Hypogammaglobulinemia

My update: I went to the hematologist for further blood workups (IgA, IgG, IgM levels). I have low levels of IgA and IgG, but the IgM was normal at 82. Light chains were also within normal ranges. On CBC, again my MCV is high, RBC's are low, RDW's are low, MCH is high, and MPV is low. WBC's are normal at 8.2, however, higher than in May when they were 6.6. My creatinine was also high. I am awaiting the results of the Bence Jones protein test.

So the hematologist again dismisses all of this, along with my symptoms of extreme fatigue, memory disturbances (esp. short term memory), extreme back pain that now goes up my back (pain doc has ordered xrays, etc. for the back and hip pain), extreme neck pain that now covers my should blades and in-between, and an all-out malaise. These symptoms have gotten worse over the past year or more as I have degenerative disc disease anyway. But the newer symptoms of the extremes as well as bone spurs, hand rash (comes and goes with bad itching welts), night sweats, extreme eye pain from optic neuritis, enlarged glands that come and go, "lipomas" on my rib, upper thigh, and scalp.

He tells me to just follow up periodically with my GP. However, do you all think that I should be seeing an immunologist? I mean really - does this hematologist expect me to just live with these problems as though they are unique and not related to one another? He is mainly a cancer doctor, I realize, so when there is no cancer, is it right for him to dismiss me without further referral? I do have hypogammaglobulinemia - as he stated on my discharge papers. Something I should or should not be worried about?

Any ideas would be greatly appreciated. Thanks much!

 
Reply With Quote
Old 07-06-2013, 12:17 PM   #20
Newbie
(female)
 
Join Date: Jun 2013
Location: Chicago, IL
Posts: 5
lilly64 HB User
Re: Hypogammaglobulinemia

Also, the hematologist says that the deficiencies should not cause any of the problems I am having, such as fatigue....

 
Reply With Quote
Old 07-06-2013, 12:34 PM   #21
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 4,902
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: Hypogammaglobulinemia

Lilly, I would emphasize again that many of your symptoms, including the hypogammaglobulinema, rashes, extreme fatigue, enlarged lymph nodes, pain, night sweats, memory loss, and even optic neuritis are common symptoms in lupus and similar autoimmune diseases. The enlarged red cells (high MCV) are consistent with Vit B12 and/or folate deficiency, which then causes anemia (low red cells) which makes the fatigue worse. Please see a rheumatologist to check for lupus and pernicious anemia (also autoimmune) which causes the high MCV from low B12 (it is not absorbed in GI tract). These problems should not be dismissed. It is obvious your hematologist doesn't know where to go from here and you need a fresh look by an appropriate specialist who can put all of this together and help you feel better.

Last edited by ladybud; 07-06-2013 at 12:36 PM. Reason: added

 
Reply With Quote
The Following User Says Thank You to ladybud For This Useful Post:
coping1 (07-13-2013)
Old 07-08-2013, 06:43 PM   #22
Junior Member
(male)
 
Join Date: Feb 2012
Location: chicago, il, usa
Posts: 24
mws952002 HB User
Re: Hypogammaglobulinemia

Agree hematologist doesn't seem to know where to go. Follow up as recommended by ladybud. Best wishes, keep us posted.

 
Reply With Quote
Old 07-13-2013, 07:10 PM   #23
Junior Member
(male)
 
Join Date: Feb 2012
Location: chicago, il, usa
Posts: 24
mws952002 HB User
Re: Hypogammaglobulinemia

Thought I would post an update I saw another doctor. I took my lab result history and chest CT scans. His Physician Assistant talked to me first, took history and all my documents/CD of scans. She found a rash on my leg I did not realize I had. Immune related? Have no idea. When the doctor came in, the first thing he said is that I need to be on IVIG or SCIG. He also confirmed I had CVID. He was concerned that my IGG had dropped 100 points in the past year and I am not holding pneumonia vax. One thing that surprised me, he said I was only 40% protected against the pneumonia virus. He confirmed other doc statement they like it to be 70%. (My other doc said it was border line at 69.5 %.) While my overall score is not that bad yet, because of the bronchiectasis and multiple lung scarring, I am at risk. We donít want infections to further deteriorate my lungs. If I understood him right, future infections were just a matter of time; when, not if. He said either IVIG or SCIG would be ok. I expressed an interest in SCIG because I heard it is easy to learn and I can do it myself at home. (I donít want it interfere with work.) That is his preference because, due to weekly infusions, the IGG is more constant. IVIG has peaks and valleys, and worse side effects.
So, I told him I would think about it. So now my dilemma is what do I do? My current doc has always said I may need to go on IVIG, but he was trying the antibiotic and see how it goes. This dr wants to get my immuglobin levels up now and can probably stop the antibiotic. Further complicating this, my current dr was a real *** last visit. And he was wrong about the % of pneumonia immunity. (I reviewed results and calculated myself. It was just under 40%. ) Finally, I do not feel sick enough to be on this.
Now I have to decide what is best for me.

 
Reply With Quote
Old 07-13-2013, 08:13 PM   #24
Senior Member
(female)
 
Join Date: Sep 2009
Posts: 133
coping1 HB User
Re: Hypogammaglobulinemia

Quote:
Originally Posted by mws952002 View Post
Thought I would post an update I saw another doctor. I took my lab result history and chest CT scans. His Physician Assistant talked to me first, took history and all my documents/CD of scans. She found a rash on my leg I did not realize I had. Immune related? Have no idea. When the doctor came in, the first thing he said is that I need to be on IVIG or SCIG. He also confirmed I had CVID. He was concerned that my IGG had dropped 100 points in the past year and I am not holding pneumonia vax. One thing that surprised me, he said I was only 40% protected against the pneumonia virus. He confirmed other doc statement they like it to be 70%. (My other doc said it was border line at 69.5 %.) While my overall score is not that bad yet, because of the bronchiectasis and multiple lung scarring, I am at risk. We don’t want infections to further deteriorate my lungs. If I understood him right, future infections were just a matter of time; when, not if. He said either IVIG or SCIG would be ok. I expressed an interest in SCIG because I heard it is easy to learn and I can do it myself at home. (I don’t want it interfere with work.) That is his preference because, due to weekly infusions, the IGG is more constant. IVIG has peaks and valleys, and worse side effects.
So, I told him I would think about it. So now my dilemma is what do I do? My current doc has always said I may need to go on IVIG, but he was trying the antibiotic and see how it goes. This dr wants to get my immuglobin levels up now and can probably stop the antibiotic. Further complicating this, my current dr was a real *** last visit. And he was wrong about the % of pneumonia immunity. (I reviewed results and calculated myself. It was just under 40%. ) Finally, I do not feel sick enough to be on this.
Now I have to decide what is best for me.

I tried SCIG and, although it was easy because I could do it at home, it did not keep my levels up high enough. I also tend to get abdominal abscesses so my hematologists decided that I had to go back to the IVIG.
I get it every 3 weeks, 40 grams 2 days in a row. It's hard because I have to do it at the hospital and I get severe chills/rigors which require injections of 50 m.g. of Demerol-2 each treatment. However, the treatments have been keeping me out of the hospital, so I think it's worth it!!

Last edited by coping1; 07-13-2013 at 08:16 PM.

 
Reply With Quote
Old 07-13-2013, 08:29 PM   #25
Junior Member
(male)
 
Join Date: Feb 2012
Location: chicago, il, usa
Posts: 24
mws952002 HB User
Re: Hypogammaglobulinemia

Thanks. Good to know. How long did it take for them to determine it was not high enough?

 
Reply With Quote
Old 07-13-2013, 08:38 PM   #26
Senior Member
(female)
 
Join Date: Sep 2009
Posts: 133
coping1 HB User
Re: Hypogammaglobulinemia

Quote:
Originally Posted by mws952002 View Post
Thanks. Good to know. How long did it take for them to determine it was not high enough?
I think I tried I for about 6-9 months but was hospitalized numerous times for infections during that time. With the IVIG the frequency of infection has definitely decreased. I have a blood disorder that is triggered by even the slightest infection, so it is extremely important that my IG levels are kept at an optimal level.

Good luck!

~Coping

 
Reply With Quote
The Following User Says Thank You to coping1 For This Useful Post:
mws952002 (07-14-2013)
Old 07-15-2013, 06:02 AM   #27
Member
(female)
 
cvidmama's Avatar
 
Join Date: Nov 2011
Location: Bakersfield, CA
Posts: 54
cvidmama HB Usercvidmama HB Usercvidmama HB Usercvidmama HB Usercvidmama HB Usercvidmama HB User
Re: Hypogammaglobulinemia

Hi there,

Typically, people are started on IVIG which provides a large "loading dose" of IGG. It's also usually in the manufacturers dosing recommendations (all of which you can read online). Normally one would go on IVIG first for a few months then transition to subq. Now that being said, many people are started on subq FIRST. I find this is for a couple of reasons, seeing a doc who doesn't treat a large population of PIDD patients OR the IGG levels are not all that low to begin with. So, for me, IVIG took me from like 300 to 500 in one month, then to 700. Thats what I mean by loading dose because you get it all at once. Subq is much smaller doses more frequently so it can take longer to raise your levels. I've done both and would say there are pro's and con's to both. My other suggestion is if your doctor seems to be making mistakes, what about finding one that treats a lot of us? I would give you resources (support groups online, organizations to get in touch with etc) but that is not allowed on this site

 
Reply With Quote
Reply Reply

Tags
immune system, neurological



Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



cvidmama (12), kelli1b (4), markincleveland (3), ladybud (3), ltmccarty (2), SK59 (2), AngelicBrat (2), luca689 (2), sugzey$ (1), nannoo (1)

Site Wide Totals

teteri66 (1180), MSJayhawk (1004), Apollo123 (904), Titchou (847), janewhite1 (823), Gabriel (759), ladybud (754), sammy64 (668), midwest1 (668), BlueSkies14 (610)



All times are GMT -7. The time now is 07:05 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!