[Kay]

IVIG infusions for low immunoglobulins: only option?

by Kay on Fri Nov 16, 2012 4:12 pm

Dr. Libby recently stated:

It is quite common for myeloma patients to have reduced serum immunoglobulins. In general there are no consequences but there can be. This is termed "immuno­paresis". Patients with low serum immunoglobulins are at increased risk for infec­tions (pneumonia etc). Usually we do not treat the low immunoglobulin level (with monthly infusions of immunoglobulins) unless a patient has repeated bacterial infections like pneumonia, sinusitis or bronchitis."

My IgG and IgA are below normal at 472 mg/dL and 77 mg/dL respectively. And for the last three years, I have had a sinus/bronchitis episode that has required at least one treatment with antibiotics. I have just started antibiotics again for an infection that originally started in July.

I have MGUS IgG lambda with a skewed k/L ratio, 8-10% plasma cells (94% abnormal) and moderate renal disease. My last bone marrow biopsy was in 2011 and maybe it's time to do another one to check for progression plus I don't have any cytogenic or FISH test results.

Are infusions of immunoglobulins the only treatment for low immunoglobulins?

Thanks, Kay

[Dr. Edward Libby]

Re: IVIG infusions for low immunoglobulins: only option?

by Dr. Edward Libby on Sat Nov 17, 2012 2:40 pm

Hi Kay,

Short answer: yes.

[Ron Harvot]

Re: IVIG infusions for low immunoglobulins: only option?

by Ron Harvot on Mon Nov 19, 2012 1:05 am

I am getting the infusions IVIG. The are very expensive and for me will be indefinite and potentially a permenant feature of my on going treatments. Thank God my insurance covers these treatments. Does anyone else receive these and if you are on Medicare how are they handled?

[lys2012]

Re: IVIG infusions for low immunoglobulins: only option?

by lys2012 on Mon Nov 19, 2012 3:09 pm

I have dealt with infections since my transplant. I did achieve a CR and have remained there. I tend to have a slightly low white count. When I get stressed, my counts drop a bit. My IgG is normal as far as I know, but that is the type of multiple myeloma I have and my M-spike usually says trace proteins. Long term, I try and stay healthy, washing hands, getting the flu shot, pneumonia vaccine etc.

I learned to live with the more frequent infections, and my body can get over them, but sometimes it takes longer then most (i.e., flu bug going around the office will lead to me off work for longer then most). I have been on antibiotics two or three times this year for ear infections and one bacterial stomach bug. I've had food poisoning at least 2 or 3 times (or a stomach flu).

I think it just goes with the territory. A few nights I've woken up with night sweats / fever and then felt sick the next day, so I take it as a sign my body needs rest and I do feel better after a day or two off work. My doctor has never mentioned IVIG treatment for this. I get blood work every two or three months to monitor my counts / m-spike.

[Kevin J]

Re: IVIG infusions for low immunoglobulins: only option?

by Kevin J on Thu Nov 22, 2012 11:48 am

I have been on the carfilzomib (Kyprolis), Revlimid, dex (CRD) trial for 21 cycles now. My red cells have hovered just below the normal range and my white cells have bounced either side of the lower normal range throughout treatment. I have IgA multiple myeloma, and their count is just above the lower normal range (I'm currently in sCR), while IgG and IgM are both below the normal range. Also, neutrophil counts are normal, but my lymphocyte levels have been low throughout treatment.

During this time I have had several colds, three of which have turned into sinus infections that required me to go on antibiotics. Obviously, the combinations of low counts all make me more susceptible, and less able to fight back. I think my biggest issue though is that I do not take enough preventive action. I find myself for the most part feeling well, and overlook that I am battling cancer and have a compromised immune system. Consequently I'm not as careful as I should be in areas where I'm prone to pick up bugs. I think if I were more careful I'd have far fewer illnesses.

Another item that came up with my doctor is that many of the treatments for multiple myeloma can evidently cause growths in the sinuses – I have not looked into this further yet, but will in the near future. I have had sinus issues most of my life, and my doctor has recommended I consult an ENT specialist when I finish the CRD trial to see if there is a chronic issue that should be addressed before I have to go on any other treatments.

[Kay]

Re: IVIG infusions for low immunoglobulins: only option?

by Kay on Fri Nov 23, 2012 11:58 pm

I had x-rays done on my sinuses and will find out the results on my F/U appointment. I did have a polyp removed from one sinus about 20 years ago and this is the side that the ENT said looked blocked.

The other complicating thing for me with the compromised immune system because of low immuno­globulins is that I also have multiple sclerosis. So I have overactive T cells (I believe that is correct) from the multiple sclerosis and underactive immunoglobulins due to the MGUS? The IVIG treatment would boost the immune system, but I have always understood that I should not do anything to boost my immune system because of the MS.

I think I need to get into the ENT sooner than I have been going.

Kay

[MarthaWunsch]

Re: IVIG infusions for low immunoglobulins: only option?

by MarthaWunsch on Mon Dec 03, 2012 8:42 pm

My myeloma specialist prescribes acyclovir, an anti-viral, for all his patients to keep viruses away. Daily 400 mg in a.m. and 400 mg in p.m.

Martha