So yesterday - Monday 29th - 11 days after my first chemo B + R - I had an infusion of IVIG to help my deficient immune system. I did not appear to suffer any side effects - besides generally these are stated as being "mild, transient & self-limiting."
For those who are interested in facts, the Hospital based their calculation on 0.4g/kg of body weight (74kg) - meaning 30g over a four hour period. (The trade name on the bottles was Vigam.)
{Don't mistype this drug trade name with an extra "r" - because you will find a tablet that does completely different things to your blood system (VigRam).}
Treatment is given every 3–4 weeks.
I have seen higher dose rates quoted on the interweb, like in the case of patients with autoimmune disease, IVIG is administered at 1-2 grams IVIG per kg body weight.
Has anyone else experience of IVIG in relation to CLL?
Regards,
Marty.
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MartyR
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I understand IVIG is a relatively common protocol used to boost a lowered immune system and hence CLL patients that have low IgG levels and frequent frequent infections may be offered this treatment. The triggering IgG level varies by country. I just qualify for it here (and thankfully haven't needed it yet) but wouldn't qualify in the UK.
It is expensive to collect, as one transfusion requires blood from several thousand blood donors, plus there is also the (very small) risk of contracting an illness from one of the donors. Also, once your immune levels fall to the stage when you need it, (unless it is due to treatment such as in your case), you tend to need it regularly, perhaps every couple of weeks to months.
Those that depend on it certainly report a difference in how they feel before and after. I'm glad you didn't have any side effects. From what I've read, these are more likely to be from the associated pre-meds rather than the transfusion.
As to why IVIG is needed, the normal progression of B-lymphocytes is from the un-mutated to mutated form (i.e. keyed to particular antibodies), then maturation into plasma cells. Plasma cells generate most of our immunoglobulins/antibodies. Since our clonal/cancerous B-lymphocytes don't develop into plasma cells, we see falling immunoglobulin levels as our CLL progresses. There are other immunoglobulins (A and M), but these can't be boosted by transfusions and seem to be less critical than the G immunoglobulin.
I hope your immune levels soon bounce back so you don't need transfusions, but meanwhile, say a silent thanks to all the donors that are helping keep you healthy and encourage your non blood donating friends to consider becoming donors.
I too would be very interested to hear of others' experiences with IVIG, but I suspect these are more likely to come from members based outside of the UK.
Prof Terry Hamblin quoted one estimated annual cost of IVIG treatment at $6million:
Marty - When I was first diagnosed, 10 years ago, my IgG as around 250 and I had lived with constant sinus infections and UTIs for several years, plus a round of pneumonia and a hospital stay due to a kidney infection that resulted in sepsis. I have been getting it ever since, initially every month, and now every two months. I have no reaction and don't feel any different before or after, but it has completely changed my life for the better as I am not dealing with all of the infections and resulting antibiotics, which often did no good. I might get an occasional allergy related sinus infection and once in a while a UTI, but not more than one a year, and I haven't had the flu since I started this (knock wood). The brand I now get is Privigen, though I have gotten several others over the years. The one thing I learned along the way is that if you react to one brand, just changing brands can solve the problem. In all of that time I have only had two very minor reactions which the nurses jumped on right away, preventing anything more uncomfortable (I just had very minor chills and flushing). Both times it was the same brand, so that one was eliminated for me.
For the record I am in California.
Neil, was Terry Hamblin's figure for a year or a lifetime? I would guess that it would be more like $100,000 per year charged to insurance here, but that is a little game. Things are overcharged, but the various facilities have contracts with Medicare and insurance companies regarding the top limits for various medications and treatments, so what is actually paid is considerably less. For my last infusion the total claim was $6649.80 - $6022.80 for the IVIG, $464 for IV Therapy, $ 4.00 for one each Tylenol and Benedryl (ridiculous!) and $169.00 for the treatment room. Medicare paid $1658.51, Blue Cross, my secondary, paid $423.10, and I paid nothing. I worry about people without insurance, as they get hit with the charged price, which is totally unfair, though some facilities work with the pricing for them.
Marty, If you have any questions feel free to ask here or in a PM.
Note that this study was from 1991! The high cost is because they worked out that a patient on transfusions every 3 weeks gained an extra 0.8 good day per year - and that's only if the inconvenience of treatment is not considered. I'd hate to think what the cost would work out at today, based on this methodology!
As you so rightly observed, pricing is a ?little? game, but this paper so reminds me of the phrase "Lies, damned lies and statistics"!
Given how long it now takes me to get over any infections, I know I'll be happy to start on IVIG when frequent infections become an issue for me!
Interesting. I can tell you that in my case I was dealing with infections of one form or another almost all day every day, which means that IVIG has given me about an extra 365 good days a year, including treatment days. I had forgotten what it was like to not spend my days and nights without the feeling of being constantly slammed in the face with a 2x4. And my infections didn't clear with antibiotics by the time I was diagnosed. Sinus surgery allowed things to drain somewhat, but the infection with resulting pain and general ill feeling was still there. Those people have too much time on their hands if they think they can compute the value of not having to deal with that using their calculations. Just my opinion.
IVIG in CLL is a very low dose in fact, compared with other indications...
Why would they spend that? According to recent paper...
'In many countries, an additional year lived is judged to be “worth” about $50-100,000 (6, 7). In England, the National Institute for Health and Clinical Excellence (NICE) values a year lived at about 30,000 British pounds, or about $50,000.'
Some bean counter has a finger on your treatment cost... rest assured...
Thank you - Neil & Pat for your thoughts and experiences with IVIG - the financial observations certainly make me grateful for the UK National Health Service!
Pat - it's also encouraging to hear that IVIG had such a BIG influence on your health and lifestyle. I will watch out for any change in the Product name that may cause adverse reactions.
At the moment - touch wood - my Chemo treatment B + R + GS 1101 or Placebo combined with the IVIG Infusion is going reasonably well - but I realise it is very early days - and I must keep vigilant against infections. So at this stage I will take a "rain check" on your offer to answer further question - but I am sure there will be more!
Finally, I would like to give thanks to the thousands of Blood Donors, like my late Mother, who give up their time and blood regularly to help CLLs and others - without their support treatments like IVIG would not be possible.
Yes and I agree with some people having too much time on their hands - there is an annual NHS report about the use of IVIG in the UK - last year 2.6 million grams were used - with about 10 % going to haematology patients! The report which is dozens of pages long and proberbly compiled by lots of committee members - comes to another "startling" conclusion - if there is shortage of Imported IVIG in UK - we may have to slightly reduce the dosage to all patients!
I hope your health & remissions continue to improve.
Interesting report Martyn. Perhaps a better conclusion would be to have the bean counters take some office time off to donate blood. Now that would do more to address the problem than reducing the dosage!
After posting my answer to Pat, I realised that the $6 million doesn't mean anything without some context, so Chris, thanks for supplying that.
I'm not sure how they measure such a subjective thing as days of improved quality of life either. I can certainly empathise with Pat on what it is like to be constantly battling infections and trying to get over them - it really does drain any pleasure out of life and makes it so much harder to get anything done...
I came up with the following scenario to put the $6 million quality adjusted life year into context. Say you loved sky diving. Here it costs about $400 for 10 minutes in the air, but of course you've got the cost plus the time getting to the airfield, taking off, gaining altitude and then getting picked up and taken back to the airfield and home. That works out at $21 million a quality adjusted skydiving life year if you disregard the associated inconvenience!
Neil, your theory and calculations for skydiving only goes to show that you need a large committee to work out a Quality of Life Figure for this activity.
In the Uk the Skydiving Association states:-
If you want the lowest possible risk but are prepared to accept an injury rate of up to 1 in 900 (male) or up to 1 in 700 (female), you are not very fit, you are not self confident, you want to avoid prolonged training, you just want the experience of a jump but do not yet wish to commit to regular skydiving.
---->>>>>> Tandem skydiving may be the best choice for you to consider.
However if you are fit and self-confident and are prepared to commit time to training. You would enjoy the challenge and thrill of a solo jump and the satisfaction of being responsible for yourself in the sky. You may wish to become a competent skydiver. You can accept an injury rate of up to 1 in 200 (male) or up to 1 in 100 (female).
----->>>>>> Static line may be the best choice for you to consider.
Therefore you will have to "factor in" to your figures which type of Skydiving method you choose and separate figures for gender - as well as attending A & E / Hospital Stays / how long plaster casts stay on / regaining your nerve, etc etc
Also there would be a whole sub-committee investigating why females are less injury prone.
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