Needles

[s162216]

Nov 20, 2013 22:16:45 GMT perfectlypeg said:

Back in 1998 when I first started this whole fiasco... I was given IV infusions in a 23 hour hospital stay where there was this IV cocktail of gammaglobulin, summaglobulin, antibiotics, b12, folic acid, and some more things I don't recall. Then I was sent home with a prescription for injections of gammaglobulin that I could give myself on an as needed basis. This was done on a quarterly basis. I liked this protocol the best but the physician was like 90 years old and after three years he died. It took me four more years and several doctors performing the "lets see how low she can go" tests before finding the monthly protocols. I now hear that the injectable prescriptions are "outdated" although I would love to find a physician who would prescribe them. I never received any side effects from them which is unheard of from the subcultaneous scripts. I have read about the injectable serum in various research papers that I've come across. I remember that they were equally as thick as the sub-q ones. and they require a large needle. The site does become red and hot but it quickly returns to normal. I don't know why it doesn't get prescribed anymore. But probably like most things, it doesn't cost as much and doesn't bring in as much revenue for the pharmaceutical companies. When I changed from the IV to the sub-q I thought that it would be less expensive since it was administered by me at home. But it is more expensive. Go figure?
perfectlypeg

If I was getting all of that lot then I would be a bit concerned!

The stuff your referring to is still available (in the UK at least, not sure about the US), but generally intramuscular immunoglobulin was associated with massive reactions (some of the older patients in my infusion clinic used to have them years ago and said they were awful such as having huge agonising swellings appearing around the site as soon as the stuff was injected, and were very painful to have once a week), and the blood levels of immunoglobulin would fluctuate massively because of the unreliable/uneven abortion into the bloodstream from the muscle tissue which is why intravenous preparations took over almost immediately when they first became available about 25 years ago, and then subsequently SCIG also became available. You'll probably find that the cost is pretty comparable as all preparations have to go through the same similar extraction, purification, stabilising etc steps before it can be used which coupled with the fact that its from human plasma (a limited resource) pushes the cost up massively.

[john]

As someone who had intra-muscular Ig for two years let me tell you of my experience with it!
Once a month I had to have two huge syringe-fulls injected via great big needles, one into each buttock.
The pain of the injection was indescribable, and in the end I could hardly bring myself to go into the clinic for injection for fear of it!
Two tennis ball sized lumps would come up immediately which made sitting down impossible, and my after-injection routine was to get out of the clinic as quickly as I could and walk around town for three hours until I felt I could sit on the train home!
I was subsequently put on IVIg, which I had without any side effects for 20 years and am now doing sub-cut at home, again without side-effects save for four red bumps at the infusion sites.
Even if IMIg was given away free I would never go back to it!!!!

[elained]

I had two intramuscular injections when I was 22, I was newly pregnant, had not had German measles, and my students were breaking out in a rash right in front of me in every class.

It wasn't any fun. But it was just once, and I did not get German Measles! And turned out I had NOT had them later when tested, so the preventative measure was a good idea

We've also come a long was with the technology of needles themselves.

I used to have allergy shots, 6 a week, with reusable needles, glass syringes, and the needles were the diameter of soda straws!

Yep, we've come a long way.

Hugs, Elaine

[perfectlypeg]

Hi, thanks for the response. I was prescribed only 1ml and it was used only on a "as needed "basis" that was more supplemental to the IVIG. I didn't have any reactions to the shots, just goes to show how different we can be. I am now using the sub-q and it has made me so ill that I was unable to administer weekly and had to go to ten days just to have at least one day out of bed between treatments. I'd love to post more, but this diseases has me so isolated and couch-confined that a good day consist of being upright in my recliner. I hear Hizentra is offering a double dose protocol where you administer it every two weeks. Anyone trying this? I'm just wondering if 100ML can do more damage than the 5-ML now?
It looks to me like they are admitting the severe reactions to the medication and are offering something like what I've been doing and that is stretching out the actual treatment so a patient might be able to salvage a few extra days in between?
I've even been thinking about going back to the IVIG. I would be sick for a week afterwards but with the sub-q I am sick all the time. You might be wondering why I stayed on the sub-q these four years. It has been the only time I haven't been hospitalized and the only time my IgG tests came back above the limit of 700
But the past year I have tested out low in IgM and IgA now too. My last test result was Immunolgobulin G = 863 Immunolglobulin A=78 and my Immunoglobulin M =24
If only I knew what that meant. Rarely am I awake enough to research much anymore.
I guess I am just grasping at straws here.
thanks
PerfectlyPeg

[john]

Hi Peg,
I'm so sorry to hear that you're feeling so bad and that the sub-cut is not agreeing with you.
I have subcut each week and quite a big dose too, and touch wood I don't get any bad effects from it, but then I never did from 20 years of IVIg either.
My current product is Hizentra, and I haven't heard about the two-weekly regime, so next time I'm in clinic I will speak to my nurses about it, and also see if they have any suggestions to lessen your side-effects.
I hope you will soon feel better and will at least be able to enjoy the Christmas Holidays.

[barbfrombc]

I got a referral today to at least do the subcut training. I am in Canada where pretty much everyone it seems is on the push method now. I am presently getting 40 grams ivig every two weeks. I have no idea what that is going to mean in terms of sites or time. I am a little anxious about that but thought I might as well go to the training and see what is involved.

Barb

[john]

Hiya Barb and happy and healthy new year to you!
As 40 gm/ 2 weeks isn't far off my own 55 gm/ 3 weeks I guess you will be looking at the same subcut regime as me.
Mine takes 2 hours to infuse and half an hour to prepare each week, but there is no travelling time and I really appreciated the flexibility over the holidays!
Don't be scared of it, it honestly doesn't hurt to stick the four tiny needles in and you have to be really unlucky to get side effects, unless you count the temporary swellings as a bad side effect!
You are a very long standing PID Pal Barb, if there's anything, absolutely anything, you want to know or share, don't hesitate to ask!!!