After a major downslide after having made good progress with orals, my doc has recommended i.m. rocephin shots.
Can anyone describe their experience with this? Was it effective? I think my primary concern is of going through all this and have it not even do any good.
I understand that these are excruciatingly painful, and I will need to do them 3 times a week indefinately. I have a very high pain tolerance, fortunately. Do these injections cause any permanent lumps or hard spots that don't go away?
I am violently allergic to pennecillan so I cannot do these at home, I have to do it in the office because they are concerned about a potential reaction.
Posts: 8 | From Virginia | Registered: Jul 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Sarah,
Although I don't have any experience wtih rocephin, I give myself IM B-12 shots every other day.
At first, I found the injections were bruising me and leaving nasty lumps under the skin. Someone on this board suggested applying a firm pressure (with cotton) to the site after the injection.
For me, that extra step eliminated both the bruising and the bumps.
I hope this helps!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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liz28
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posted
Don't bother. You probably just weren't on the right orals combination.
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robi
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posted
I had an allergy test for rocephin once ........ wasn't allergic but holy cow did that hurt ..... and hey barely used any! Not sure if this is what the injections feel like or not.
I do b-12 injections also those are easy.
ANyone do rocephin shots that can share the experience? Rate it on the pain scale?
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
I did not have the IM Rocephin shots but the Bicillin LA, also three times a week. I did those for over six months. Most days the pain is not too bad, specially if administered by someone else. You should also be able to give yourself the shots. Definetely applying some pressure on the site helps but bumps eventually go away within a couple of days so just alternate the site of the shots.
Posts: 29 | From Maryland | Registered: Feb 2004
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posted
I, too, have no experience with rocephin, but have been doing the IM Bicillin shots for several months now.
At first, I barely felt them at all (I had an almost super-humanly high pain tolerance) -- but the last month or so, my pain tolerance has been going way down (I'm sure this is because I don't live in horrendous daily pain anymore!) and the shots have hurt me a bit -- still nothing to crow about, though -- nothing at all compared to my lyme pain and the pain from herxing!
I think the IM shots have helped me a great deal, and I like them better than orals because they are easier on my GI tract.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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David95928
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posted
I've used IM Rocephin and can say that mixed with water they are incredibly painful, and I'm the guy who snapped a bicep tendon and failed to notice for a year. However, mixed with Lidocaine instead of water they are not bad at all. Using Lidocaine also seems to pretty much eliminate lumps and swelling. Insist.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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I have been on many combos of orals, but it seems it's time for something more drastic.
I am supposed to be on i.v., there are coverage issues.
The i.m. is the "better than nothing" alternative.
I do B12 myself, but this is totally different. The rocephin shots, I am told, are not at all like a regular shot. The consistency is like vaseline and it takes a full 5 minutes (so I hear) to inject properly. As I said, I am told this is EXCRUCIATINGLY painful. My ex was a medic in the military, and he told me that they'd give this for gonnorhea, and he'd actually see soldiers scream and cry because of the pain of these shots, and that was only one shot, never mind several a week for months. I figure I can deal with it, just wondered though about permanent scarring.
What I am more concerned about however is whether or not they are going to be effective. Also I do have some concerns about allergic reactions.
Posts: 8 | From Virginia | Registered: Jul 2006
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Jill E.
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Member # 9121
posted
Hi,
I cannot comment on IM Rocephin because I haven't done it. I have been doing IM Bicillin for quite awhile. I have heard that IM Rocephin should be mixed with lidocaine as an earlier poster mentioned.
Is there some allergy testing they could do in advance of the Rocephin? I had to go through extensive penicillin allergy testing prior to being allowed to use IM Bicillin because of a possible childhood penicillin allergy. But the allergy testing came out fine and I've had no problem. But I don't know if there is a way to test Rocephin in advance (except energetic testing).
And you are right to be monitored in a doctor's office or medical clinic at least the first couple of times if there is a concern about allergy.
For what it's worth, I worried horribly about IM Bicillin because everyone I know who had them said they were painful, got lumps and bumps, etc. So I surveyed everyone I could think of from patients to nurses to Lyme doctors and came up with a list of tips to minimize the pain. Search the archives for a post titled Minimizing Bicillin Discomfort.
My worry about the Bicillin was far worse than the actual injections which have been pretty painless with no bumps or lumps. So all I can say in terms of IM Rocephin is that perhaps the talk about the pain is worse than the actual discomfort.
I have one Lyme pal who did not do better on several of the oral antibiotics, but IM Rocephin was the one thing that helped her a huge amount.
Just know, as I'm sure you do, that with the injectables, there may come a time when the build-up of scar tissue will prevent you doing any more injections. Some people can go for many months of doing injections, others can't.
Best of luck, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
"Just know, as I'm sure you do, that with the injectables, there may come a time when the build-up of scar tissue will prevent you doing any more injections."
Probably isn't true inless you are doing something wrong. Some people have been doing them for years. I'm just about at 3 months, and there is no scar tissue. The muscle may get a little tougher after a while from all the sticks, but that doesn't mean that you can't still inject there.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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David95928
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posted
I can't comment on how another person experiences pain but I definitely an say that the consistency of Rocephin mixed with either water or Lidocaine is like water. It fully dissolves into a solution (unlike Bicillin which is a suspension) and will easily go through a 21 or 22 gauge needle. I've NEVER had it clog. I had some lumps when it was given with water but none when mixed with Lidocaine. My phramcist said that the lumps were due to an inflamatory response to the unbuffered Rocephin and that the Lidocaine would take care of that. It did. What can cause some people lumps is if they clench the gluteal muscle during the injection. The solution is simple; don't clench. I can see how, minus lidociane, that it would need to be given slowly. With Lidociane, I just pushed it in, in 30 seconds at most, with little discomfort during or after.
I think you have been getting some exagerrated stories.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Thank you for the very practical information. I had wondered about whether some of what I heard had been exaggerated. It sounds like it probably was. With virtually everyone I'd spoken to here at home telling me that it was a truly horrific, agonizing experience, it was getting difficult to separate fact from fiction.
If I decide to go this route I will certainly insist that the Rocephin be mixed with Lidocaine. That makes perfect sense, what the pharmacist told you about the inflamatory response causing the lumps.
Incidently, did the lumps you experienced when it was mixed with water go away eventually, or were they permanent?
Posts: 8 | From Virginia | Registered: Jul 2006
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David95928
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posted
They went away over several days. haveyou considered Bicillin LA? It has a pretty good track record here. Do a search.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi again,
Just to clarify about what I had posted that injectables may build up scar tissue at some point and you may need to discontinue.
I agree with the poster who said that the scar tissue is probably due to something being done wrong.
I've had no lumps and bumps with Bicillin, no scar tissue, no problems. I have the nurse inject very slowly.
When the injection is done too fast, it can cause trauma that can contribute to scar tissue.
The Lyme friends of mine that have had lumps or scar tissue from IM Rocephin or Bicillin usually injected quickly. Bicillin is the consistency of glue, so slower is better.
Again, from all of our experiences, it is clear there are no absolutes.
But I wholeheartedly agree that the worry from the so-called horror stories is so much worse than the reality.
In fact, a Lyme pal and I were talking last night about how both of us worried about the Bicillin injections well in advance, and it has turned out to be so much easier than we had imagined - all that worry was needless.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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I'm a bit confused about the mixing. What form does Rocephin come in, is it a powder that must be mixed with water or Lidocaine? If you are doing it at home, do you have to purchase Lidocaine seperately? How exactly do you mix it and maintain sterility? Is Lidocaine something they have on hand in a doctor's office?
Posts: 8 | From Virginia | Registered: Jul 2006
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David95928
Frequent Contributor (1K+ posts)
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Rocephin CAN come in a package that contains a vial of powder and a vial of Lidocaine. More often it is sold without. Lidocaine is a prescription drug and widely available. I've seen it in 5ml vials and 30ml multi-dose vials. sterility is maintained through being careful when drawing the Lidocaine and injecting it into the vial of Rocephin. There's not much to it.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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