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Old 04-09-2013, 09:13 AM   #1
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Low IgG... recurrent infections... joint pain

My IgG 4 in particular is low which wouldn't be a big deal (from what I have read) except I had pneumonia a year ago and have had 4 near pneumonias since (4 courses of antibiotics & sick days to recover). This prompted my doc to test my Ig levels...and all other levels are normal.

For 2 1/2 years I have been trying to determine why I have a lot of joint pain and fatigue.

I am negative for RA, have seen two rheumatologists & they say I do not have arthritis (bloodwork supports this). I had an MRI for MS and the neuro feels I do not have it but I am having a follow up MRI Friday for comparison.

My GP has focused on the IgG levels and I am seeing a haematologist in August. However, I am unable to find any relationship between IgG4 levels and joint pain, specifically elbows/wrists/hands and knees/ankles/feet.

I am off work this week for another infection, another round of antibiotics...bronchial inflammation. Joint pain has been brutal the last few weeks but more low grade right now. It is affected by weather & elevation changes (we just travelled by car through 2 mountain passes a couple of weeks ago - ouch !).

Any input is GREATLY appreciated !

 
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Old 04-18-2013, 12:28 AM   #2
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Thumbs up Re: Low IgG...recurrent infections...joint pain

I think you need to tell your doctors to take a closer look at the staph infection in your spine. The Pneumonia you got numerous times probably was reocurring from staff infections, since they were treating it with antibiotics for walking pneumonia. so some of the staph infection stayed in your lung each time. During all of this it hitched a ride down the blood stream to your spine where it entered the lumbar area. That is where your pain is coming from.Now in your spine you have a staph infection pressing against your spinal cord depending on where it is determines the type pain.Tell your doc you want a spinal tap or a MRI or your entire spine and tell him you believe you have osteomyelitis. A little lite should go off in his head and he will start you on the proper antibiotics. All pain will go away as infection dies. Send me a email after You find out I am right. LLL14@aol.com

Last edited by Sharkie1; 04-18-2013 at 12:41 AM. Reason: Hit wrong button

 
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Old 10-05-2013, 04:09 PM   #3
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Re: Low IgG...recurrent infections...joint pain

How are you, have you found out anymore info? I also have low Igg and igg3 and going in for my IVIG fusion soon. Between that and many other health problems it's caused havic with my whole body and I too ended up with a staph infection and sepsis. I almost didnt make it, I coded and was critical in the ICU, all of my blood levels where off and had 3 other infections at the same time. They took out my gallbladder and then found I have a very rare infection, not many cases of it have been reported. This was in July and I'm still dealing with gi problems and recovering from it all which my body may never do. It doesnt have what it needs to heal or fight the infections, once off the antibiotics some come right back.

Have you ever had your cortisol levels checked?

It would be interesting to hear how your doing. I'm new here and trying to post when my body allows.

 
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Old 10-05-2013, 07:44 PM   #4
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Re: Low IgG...recurrent infections...joint pain

Hey there....
Well, I'm still plugging along. I have been doing SubQ Hizentra 5x a week since August 8. I wish I could say it has made a world of difference....but not yet. A week after I started I got pneumonia again. It's sorta been a struggle since then. In Canada they tend to go the SubQ "push" route it seems - I do 10 cc each time (2g)and I guess the idea is to keep the levels even (versus doing it once a week). They didn't do an IVIG first to give me a kickstart...I wish they had.

I am a mom in a family of 5....3 kids...who are all just over colds that were brought on by the start of school. I really don't seem to be able to get ahead. My chest is always raw, I'm always coughing stuff up & I just got over a few days of nausea & bloating...probably a gastro virus. This really sucks...and it all started with joint pain and now that fall has arrived, that is flaring up as well.

I have heard it can take up to 6 months for plasma to really help....and that it is not a magic bullet for everyone, sometimes just a bandaid. When your immune system is screwed up, and you replace your IgG...well, that's just one component of the complex immune system. Argh.

Sorry, I would love to say I am back to normal but I am still trying to find out what my new normal is. By the end of the day (or before) I am done....fatigue sucks. On the bright side I am learning to relax and accept I can't do it all. Still sucks though ! ;-)

WOW ! After your scare I am glad you are getting IVIG...I hope it agrees with you and buoys you up. What a situation hey ? This stuff is weird...never knew it existed....carry on ! Wishing you the best !

 
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Old 10-06-2013, 04:19 PM   #5
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Re: Low IgG... recurrent infections... joint pain

Hi,

I did the sub-q first and got every side affect possible, I was in agony for days and took 3 weeks for the side affects to completely go away. I'm scared to do the IVIG even though my doctor is doing a very low dose and making sure I get fluids, pain meds and headache prevention during. The sucky part is that most of the side affects didnt hit me until hours after the fusion. This time if it happens again she's going to admit me to the hospital since the body isnt strong enough to handle that kind of ordeal again.

I'll give it this one more try, if it goes badly then it's not worth it and will have to live with the cards I've been dealt with. I'm at peace with death but dont want to be in pain.

My body reacts to anything little thing, tests even an IV line is hard for the nurses to get a good vien for. They were all great 3 years ago then bang, they started to collaspe. Now they are very fragile so they pop easy which makes treatments very difficult. Most likley they will have to put in a pic-line.

I asked about the cortisol levels cause mine are very low and just wondering how many people who have low IGG also have low cortisol. My levels during the day are 1.5 then at night jump up to 140, so both can be fatal and acourse I have a reaction to the replacement medication. Cortisol is something else our bodies need to fight off infections and keep the body running.

I dont see how you do it with your kids, that must be so hard. Just taking care of my dog (my baby girl is hard. There are times I'm so ill that my folks have to take her for awhile. Thats good you have learned how to relax, it took me awhile to learn that one but once I did it helped a lot. When I came to peace with my situation it made my life much more serene. Going through a-fib and being coded at the hospital not beng able to breath...being at that place/thin line between life and death is really what helped. Since I have a DNR signed I wouldnt allow paddles to be used but did agree to the injection to get the heart going right again. Ever since like I mentioned I'm at peace with which ever way my health turns to. The fatigue is awful like you said...if the doctors could get that and my pain to a more comfortable level that would be great.

Do you get any side affects from your sub-q? How many hours is each infusion?

 
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Old 10-06-2013, 06:32 PM   #6
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Re: Low IgG... recurrent infections... joint pain

Hi North Elf,

I have hypogammaglobulinemia along with multiple autoimmune issues/blood disorders. When I get any type of infection it triggers my blood disorder. I also have bone marrow damage with a low white count so I get infections very easily.

I have been getting IVIG for about 2-3 years. I began with sub-q injections but I just couldn't get my Ig levels up high enough and I began to get abdominal abscesses at the injection sites. I then began getting high doses of IVIG for 2 days once a month and it really helped.

I went from being hospitalized 5 times a year with infection/sepsis to 1-2 times a year!

This past year I began getting the infusions 2 days every 3 weeks because I was getting sick before the 4th week period every month.

I still get infections alot, but I am able to get them under control with oral antibiotics easier while getting the IVIG infusions.

I do get reactions from the infusions-I get really bad chills/rigors and they have to give me dimeral shots to stop them and I get a migraine later in the day, after I am home on the days of my infusions. I do think that the IVIG is worth it though! It beats being in the hospital all the time!!

Could you ask your doctor about getting a higher dose IVIG? As far as joint pain, whenever I have an infection I get joint pain and I also get costrochondritis-inflammation of the sternum-it is very painful. I wonder if your joint pain might be related to your infections?

I hope you get some answers. Good luck!

SK

 
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Old 10-07-2013, 12:33 PM   #7
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Re: Low IgG... recurrent infections... joint pain

Hi SK59,

when I had my sub-q the fluid stayed in the stomach/soft tissue at the needle sites.

I too have the chills (and sweats) awful, I didnt know until I came here how many people got these side affects, I thought it was just my crazy body. I get almost to the point of being coma like state but lightly awake in awful pain.

You mentioned your hospital trips have gone down but have they helped your daily life? Is your pain/discomfort or any other illness's improved since you have been getting them? Isnt costrochondritis awful...I had it for years until I used TENS for treatment, have you tried that?.

Like you my blood levels are all off and live with multiple infections/virus's that are antibiotic resistant along with many endocrine, nerve & joint disorders and unreversable damage caused by them. If I knew the IVIG's were worth it, it would make it so much easier since this is my first IV fusion.

I dont mind my hospital visits but want my day to day life to improve, has the IVIG helped yours?

Thanks so much

 
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Old 10-07-2013, 06:55 PM   #8
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Re: Low IgG... recurrent infections... joint pain

Quote:
Originally Posted by Cher45 View Post
Hi SK59,

when I had my sub-q the fluid stayed in the stomach/soft tissue at the needle sites.

I too have the chills (and sweats) awful, I didnt know until I came here how many people got these side affects, I thought it was just my crazy body. I get almost to the point of being coma like state but lightly awake in awful pain.

You mentioned your hospital trips have gone down but have they helped your daily life? Is your pain/discomfort or any other illness's improved since you have been getting them? Isnt costrochondritis awful...I had it for years until I used TENS for treatment, have you tried that?.

Like you my blood levels are all off and live with multiple infections/virus's that are antibiotic resistant along with many endocrine, nerve & joint disorders and unreversable damage caused by them. If I knew the IVIG's were worth it, it would make it so much easier since this is my first IV fusion.

I dont mind my hospital visits but want my day to day life to improve, has the IVIG helped yours?

Thanks so much
It has helped my everyday life because when I am hospitalized I am extremely sick. I get septic each time from the infections which triggers a blood disorder that I have-so I would be septic and have a flare of my blood disorder which is extremely painful. I am in the hospital for 1-2 weeks and then it takes a week or 2 to recover. When you multiply that by 5 hospitalizations a year that is a lot of time-and that is just the infections that put me in the hospital.

Now since having the IVIG infusions my infections have been less severe and we have been able to control them mostly with oral antibiotics. I see my doctor weekly and if I get any signs of infection he is right on top of it. I also take daily doxycycline-have been doing that for about 2 years also.

As I said in an earlier post, I was getting the infusions every 4 weeks but they weren't quite lasting me long enough-I was getting infections that last week-so now I get them every 3 weeks and my infections have been better controlled.

I think all of my doctors agree that the IVIG has helped. It is kind of a pain greeting treatments so often-I also get plasmapheresis every 3 weeks-but I would rather do that and feel good than spend so much time in the hospital & feel lousy most of the time!

SK

 
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Old 10-23-2013, 01:38 PM   #9
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Re: Low IgG... recurrent infections... joint pain

Big hugs SK59,

I too get sepsis easily and have CVID/ hypogammaglobulinemia along with multiple autoimmune issues , when I read your reply it sounded like I was reading about myself. The bone and spine damage alone that this has caused in the last few years is out of this world. My back and neck went from being Ok to severe disc degeneration and a cyst surrounding the nerves coming out from the skull to the neck. Once I had that blind blood ptch for a CSF leak it went downhill. That doesnt count the EBV, MRSA and other virus's we/I have to live with and 10-15 other disorders.

I had my IVIg and slowing down the drip to 5 hours and lowering the dose really helped. I only got the awful headache this time that lasted 3-4 days but even that wasnt as bad as the 1st time.

My next fusion is on 11/5 and this time they are putting in a PICC line first due to my viens keep collasping or clogging up. The nurse had a heck of a time finding one last week and now it's gone.

My problem now is finding a good pain doctor in my area. I recently got a new one and she wont do what the hospital doctors and my in home health service wants. First she said she would but wanted me to try something else first which I did and it didnt work. Atleast I was willing to try it and compermised, now she wont hold up her end of the bargain. After the IVIG I really need the pain control more so then the other days of my life. I'm the kind of person that really advocates for myself but when it comes to this doctor it hasnt done any good. Where I live there isnt many chronic pain doctors so I'm stuck, any adivce would be great.

 
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