I will be scheduled to begin IVIG treatment very soon and was told that sometimes the treatments can also help alleviate some of the joint, muscle, and bone pain that patients can experience. But I'm wondering more broadly what I can expect, and whether there are any pitfalls I can avoid, or side effects I should expect.
Thank you.
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sgridley - Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS 2005, Smoldering 2018
- Age at diagnosis: 41
Re: IVIG for MGUS or smoldering multiple myeloma
Hi Sgridley,
I was receiving monthly IVIG from August 2015 to March 2016. Side effects for me consisted for the most part of headache and mild nausea, which was really not too bad and would resolve by the next day.
The only other downside for me was really just the length of the infusion. For me it was an all day affair, typically lasting about 7 hours. Infusion rates are very specific to each individual as well as the dose you are receiving. I was on what they call high dose therapy, but was being treated for an acquired neurological autoimmune disorder at the time, and not low immunoglobulin levels which I believe typically has a lower dosing.
I was originally ordered to receive my monthly does of 2 grams / kilogram given over a 5 day period, but was able to tolerate it in a one day session. Having said that, if we tried to speed up the infusion any quicker, the side effects were worse. My advice would be to start slowly and gradually increase as tolerated.
I would also be sure you are well hydrated going into the infusion. Seemed to help some with the side effects and helps to protect the kidneys as well.
Good luck with everything!
Hykergirl,
I was receiving monthly IVIG from August 2015 to March 2016. Side effects for me consisted for the most part of headache and mild nausea, which was really not too bad and would resolve by the next day.
The only other downside for me was really just the length of the infusion. For me it was an all day affair, typically lasting about 7 hours. Infusion rates are very specific to each individual as well as the dose you are receiving. I was on what they call high dose therapy, but was being treated for an acquired neurological autoimmune disorder at the time, and not low immunoglobulin levels which I believe typically has a lower dosing.
I was originally ordered to receive my monthly does of 2 grams / kilogram given over a 5 day period, but was able to tolerate it in a one day session. Having said that, if we tried to speed up the infusion any quicker, the side effects were worse. My advice would be to start slowly and gradually increase as tolerated.
I would also be sure you are well hydrated going into the infusion. Seemed to help some with the side effects and helps to protect the kidneys as well.
Good luck with everything!
Hykergirl,
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hykergirl - Name: Hykergirl
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2012
- Age at diagnosis: 45
Re: IVIG for MGUS or smoldering multiple myeloma
Thank you for sharing your experience with me! I am not sure yet what my dosage will be, but had read that the infusion rate is crucial for how well people tolerate the treatment. I was under the impression that once someone started treatments, they would last a lifetime. I am glad that you were able to stop them after several months. Best of luck on your journey!
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sgridley - Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS 2005, Smoldering 2018
- Age at diagnosis: 41
Re: IVIG for MGUS or smoldering multiple myeloma
I have been on IVIG for several years due to contracting severe infections (meningitis and C. diff). I can honestly say that I have not had any noticeable side effects. The infusion is long as it has to start out slow, then they gradually speed it up. Normally IVIG is not prescribed unless the immune system is or is likely to become compromised. In many instances patients may have developed neutropenia either from the multiple myeloma or the treatments, It appears unusual that someone who has MGUS and is not undergoing treatment would be on IVIG.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: IVIG for MGUS or smoldering multiple myeloma
Hi Ron.
Thank you for your reply.
I probably should have given more background as to why the IVIG has been suggested. An immunologist has been watching my pneumococcal serotypes for a while, and they are somewhat low and I am not well protected against the various strains. Even after receiving more than one Prevnar vaccination, the numbers did not rebound. My immunologist has also been watching my IgG subsets, which these were the last results:
IgG 1 185 mg/dL L 382-929
IgG 2 1432 mg/dL H 241-700
IgG 3 44 mg/dL 22-178
IgG 4 5.6 mg/dL 4.0-86.0
IgG,Serum 2030 mg/dL H 694-1618
MPA Serum IgG 2050 mg/dL 717-1411
MPA Serum IgA 47 mg/dL 78-391
MPA Serum IgM 33 mg/dl 53-334
My WBC and RBC have both slipped just below normal, so we are watching those. My eGFR was down to 55 a few weeks ago, and though my creatinine is creeping upward over the range, it is still acceptable. I have had recurrent sinus infections despite being on Bactrim (sulfamethoxazole & trimethoprim) prophylaxis since November, 2016.
My new myeloma specialist suspects there is some disease progression starting to show, but so far I have not been moved out of the MGUS family. The thought for IVIG is to try to prevent the risk of infections due to my compromised immune system.
I hope I am saying this correctly. I am still learning all of the "doctor speak" and big words! lol
Thank you for your reply.
I probably should have given more background as to why the IVIG has been suggested. An immunologist has been watching my pneumococcal serotypes for a while, and they are somewhat low and I am not well protected against the various strains. Even after receiving more than one Prevnar vaccination, the numbers did not rebound. My immunologist has also been watching my IgG subsets, which these were the last results:
IgG 1 185 mg/dL L 382-929
IgG 2 1432 mg/dL H 241-700
IgG 3 44 mg/dL 22-178
IgG 4 5.6 mg/dL 4.0-86.0
IgG,Serum 2030 mg/dL H 694-1618
MPA Serum IgG 2050 mg/dL 717-1411
MPA Serum IgA 47 mg/dL 78-391
MPA Serum IgM 33 mg/dl 53-334
My WBC and RBC have both slipped just below normal, so we are watching those. My eGFR was down to 55 a few weeks ago, and though my creatinine is creeping upward over the range, it is still acceptable. I have had recurrent sinus infections despite being on Bactrim (sulfamethoxazole & trimethoprim) prophylaxis since November, 2016.
My new myeloma specialist suspects there is some disease progression starting to show, but so far I have not been moved out of the MGUS family. The thought for IVIG is to try to prevent the risk of infections due to my compromised immune system.
I hope I am saying this correctly. I am still learning all of the "doctor speak" and big words! lol
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sgridley - Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS 2005, Smoldering 2018
- Age at diagnosis: 41
Re: IVIG for MGUS or smoldering multiple myeloma
I have been receiving 3 g of IVIG every 3 weeks for IgG MGUS with peripheral neuropathy. I also have rheumatoid arthritis and osteoarthritis. I have been receiving treatments for 6 years. I started with the subcutaneous treatments at home and was switched to the intravenous method about 3 years ago. As far as I know, that this will be lifelong.
The only side effect is that I get very drowsy for the first hour or so of the 3.5 to 4 hour infusion.
Since receiving treatments, my neuropathy pain has lessened and I have more energy. The only suggestion that I have is to ask for a port as soon as it appears you will be getting treatments for a long time. It makes the process sooo much easier.
Good luck!
Mary
The only side effect is that I get very drowsy for the first hour or so of the 3.5 to 4 hour infusion.
Since receiving treatments, my neuropathy pain has lessened and I have more energy. The only suggestion that I have is to ask for a port as soon as it appears you will be getting treatments for a long time. It makes the process sooo much easier.
Good luck!
Mary
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Mary H
6 posts
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