Hi,

as mentioned in the „Port catheter“ thread, my doctors came up with another idea.

Could the immunoglobulin be given not info the veins, but subcutaneous? Does anyone has experience or an opinion to that?

The background of the question is, that I changed the institution and doctors that give me the monthly IVIG because I wanted to travel less. The new ones do not have any experience with SCLS, but they give immunoglobulin to other patients (mostly related with cancer). At least one patient of them does get it subcutaneous.

The doctor that basically treats the SCLS is still the same. I see him only once a year, so traveling to him is not such a problem . Of course also I asked him per email.

So far, I am against subcutaneous giving, unless there is experience with that and SCLS. 

If, from a medical perspective, the subcutaneous giving would be possible, the realization would also depend on the amount that has to be given and the health Insurance.

 

Thanks

 

Andreas

In principle it does not matter whether one receives the immunoglobulins one needs to prevent episodes of SCLS intravenously (IVIG) or subcutaneously (SCIG).  The practical issue is that SCIG is capable of delivering a much smaller amount of IG than IVIG can deliver.  There is only so much SCIG that a patient's skin and muscles can absorb at each spot without causing unbearable pain, and only so many times per week that patients are willing to shoot themselves with needles in order to receive the dose of SCIG they require -- especially when the body can absorb virtually unlimited amounts of IG when delivered intravenously.  This is why SCIG is usually only given to, and tolerated by, children with SCLS -- especially those for which lower doses have the desired effect.

For example, if a 10-year old child weighs a typical 30 kilos and needs 2 gr/kg/month, or a total of 60 grams, that is an amount that can reasonably be delivered either via IVIG (over two days) or SCIG (over many days).  Even better, of course, if the 30-kilo child only needs 1 gr/kg/month, in which case only 30 grams need to be delivered via IVIG (over two days) or SCIG (over many days).  That is usually tolerable and achievable either way.

However, if an adult weighs a typical 60-100 kilos and needs 2 gr/kg/month, or a total of 120-200 grams, that is an amount that usually cannot reasonably be delivered, absorbed, and thus tolerated via SCIG even when spread out over most days. 

Of course, you should not rely on what I just wrote, and you should discuss this practical aspect with your physician and infusion nurse -- especially now that you went through the trouble and risk of having a port, as per your other thread. 

If I were you, I would first make absolutely sure that I could not tolerate receiving my IVIG in two days rather than three, which is the normal, thereby cutting out one trip per month to your current infusion center.  And second, I would make sure that I could not receive my IVIG from an infusion center located closer to my home.  These centers typically cater to cancer patients -- and unfortunately there are a lot of cancer patients everywhere.

Arturo,

 

thanks for your posting. You mention basically the same  issues that the doctor that knows me since 2016 and who knows more than others here in Germany about SCLS also told me yesterday. Until two months ago I got my IVIG as an inpatient in the  hospital in which he works, about 3 hrs away from where I live. I had to stay at hospital for two nights.

 

Since July I get the Ivig in such a infusion center (for usually cancer patients), 40 minutes (public transportation) away from home. It takes three days, but I can go home at night. It is much more comfortable compared to how it used to be. So far, it is ok for me. 

 

I did not intend to switch to SCIG. But my new doctors asked if this could be a option, and I wanted to discuss the matter on a somehow rational basis.

Andreas