posted
I'm too sick to get a PICC line put in, so my doc is starting me on IM Rocephin shots.
Can anyone share experiences/instructions/etc. on the shots, especially if you have done shots and also IVs at a different time.
Would also like to know what dose people were using, and what other meds you were on?
Thank you!!
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Have you considered getting IV Rocephin via a peripheral line, or heplock? That is how I get it, and I just have to go to the hospital and get the line changed once a week. It is in my hand or arm, and the tiny plastic piece only goes about one inch into the vein.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
The problem is that I can't go to the hospital due to how ill I am and severe MCS. My LLMD tried to get a home infusion company to do it via a peripheral line but they won't do that unless it is started in a hospital.
It's good to know some people are doing peripheral lines though. Can you just go week to week indefinitely like that?
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Yes you can....I'm only doing it because I got a PICC and within 24 hours developed a blood clot. So I'm working with a hematologist to work up my clotting issues, and then figure out if I can get a more permanent line.
But for now, this works fine. It's hard for me too, I'm pretty much bedridden, but can manage to get out once a week for the heplock change. I find as hard as it is, it does me good to get the fresh air!!!
I've needed so many tests I've had to go anyway, ultrasounds, CT scans, stress tests.....no choice but to go out for those, so I try and scheduled them on the same day.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
What IS a peripheral line? Does this mean you're only getting the Rocephin once a week, or just that the tubing, etc., gets changed once a week?
What makes it different than a PICC? Could a visiting nurse change a peripheral line, or does it have to be done a hospital?
Like the poster (who's a friend -- we've been discussing this because we're in similar boats), I have severe MCS.
I can risk going to the hospital once to get it put in -- it will make me sicker for a few months, but I'm hoping will be worth it long term -- but going out anywhere once a week would do me in.
There have to be other solutions, yes?
-Sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
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posted
Sharon, An infusion company can come and change the peripheral line at your house once a week. That's what I was doing with saline IVs.
The infusion company requires that you start the line in a hospital or medical facility, but after that they can come to your house to change the peripheral line.
I was going to go that route but can't get to a medical facility to start the line at all, so that's why I went with the injections for now.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
LymeCFID- I did the shots for about 4 months. I kept developing hard, painful lumps at the injection site. They became so painful that I had to stop because there was no place to give myself a shot that wasn't terribly painful. I didn't know shots could hurt that bad.
I did have a good response to the shots other than the local reaction.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Never even knew about a short [periphrial] line like that. Do you know the approximate cost, off hand? (Unlees your insurance covered it)
I now have 100% coverage at the local hospital, for the next 6 mo.s, thanx to a "P100" approval.
With unmixed, generic Rocephin & that, I just might be able to swing a month's worth (or 2, or...) Will talk w/ my LLND. Thnx!
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
What's the dosage of Rocephin for IM shots? Is it less?
How effective is it--- is it just as effective as IV, or less?
My LLMD told me that if i had to do IV, it would have to be a peripheral line changed every week, because of the same blood clotting problems as Tracy9.
I'd really like to know; this could be coming up next for me.
Thanks.
Posts: 1226 | From USA | Registered: May 2007
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posted
I honestly don't know about efficacy vs. IVs. I'm assuming the shots are slightly less potent since they're not going directly into a vein but into a muscle, but that they're more potent than oral antibiotics.
I don't really know cost either since my insurance is covering it. I can definitely confirm that the shots hurt though!! I don't know how long I will last.
I think the dosage is the same. The shots I'm doing can also be reconstituted into IVs so it's just another method of delivery. I think standard dosing is 1-2 grams 2 x daily.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
I've been doing IM shots of Claforan (cefotaxime) since October 08 and IM shots of methylcobalamin since Dec 07. Plus I do sub-Q shots of HGH and Forteo (osteoporosis). I did heparin for 10.5 months too. At times, it's hard not to feel like one big giant pincushion.
To get how to info -- I would recommend using Google University as there are many excellent websites showing what sites to use, how to rotate places and how to do an IM shot in general. There are also some Youtube videos on giving yourself shots too.
It was nerve wracking at first but now it's no big deal. I mainly use my thighs (lower for B12 and upper for Abx) and if they get too sore then my DH does them in the tush for me. It's too hard to twist around to do it myself.
My doc has me mix the Claforan powder with 3 ml of 2% Lidocaine. After it's all mixed, I load it into a 5 ml syringe. Without the anesthetic, it would be too painful because it's a HUGE amount to inject especially 2X a day. I understand that IV Claforan is 3X compared to IM.
I'd also be sure to take lots of probiotics, Diflucan and Nystatin to prevent yeast problems. Those were not so bad for me with orals but I could tell the yeast came back quickly when I changed from oral to shots. It sounds crazy but I could smell it.
It would be too hard for me to keep a PICC line dry. I do pool aerobics and have a hot tub. Plus the idea of plastic tubing creeps me out.
One of my biggest concerns about a PICC line was how I'd cope with the smell of plastic tubing. Generally, I can't stand plastic oxygen tubing during the times I've had surgery. The first thing I do is yank it out of my nose because I detest the smell.
I used to have terrible MCS but have been nebulzing glutathione for over 2 years. The MCS is now 100% GONE!!! This is wonderful after having to deal with it since 1981.
I'm also on 2 kinds of thyroid meds, hydrocortisone, growth hormone, DHEA, and progesterone. I can't say if it's all entirely due to glutathione but I'd done hormonal support of the adrenals before and still had MCS issues. This is the first time ALL of my hormones are in the upper part of normal range so maybe that's made a difference.
Look into info by Dr Grace Zeim especially the glutathione protocol. Weekly, I started out with 100 mg/ml of glut from a compounding pharmacy. I used 3 mls 1X. Then 4 mls 1X. Then 5 mls 1X. Then 5 ml + 3 mls 4 days later. Then 5 mls + 4 ml 4 days later. Then 5 ml + 5ml every 4 days.
Now my dose is 250 mg/ml 3X per week. When I was doing the lower dose my MCS would come back 2 days before I was to nebulize. Now I don't have any MCS issues at all. I sleep like a rock on the days I nebulize too.
My LLMD thinks the efficacy of IM vs IV is about 2% less. To me, it's not worth the hassle of having a port or a PICC line.
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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