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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WildCondor
Unregistered
posted
Was good for me Tracy, I did 4 months of it on a continuous infusion pump before switching to IV Zithromax and combining them both with other meds.
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Tracy9
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Good; is it always done that way, continuous? The LLD said to expect a big herx; did you have that?
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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Pinelady
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posted
I am glad you are trying this one. Let us know how it goes. It has worked for heart patients.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Haley
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Wildcondor,
What do you mean by continuous infusion pump? My doc has approved getting a port.
Posts: 2232 | From USA | Registered: Aug 2009
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WildCondor
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posted
It doesn't matter what kind of central line you have, the Claforan is usually given 24/7 via continuous infusion pump. It's a small medicine ball with a pump built in that attaches right to your IV line. You wear it in a little hip belt pack and change it when it runs out of medicine. It's much easier and less risky because you only have to touch your IV line once every 24 hours. You don't have to do the IV bags either, so you can sleep all day and do whatever while attached to the ball, just unhook it when you take a shower, it's easy, painless, and relaxing.
Some folks do 3 Claforan IV's a day, like 4 grams 3x per day, so 3 IV's one every 6 hours. Usually you start at 2 grams 3x per day, or 6 grams on continuous infusion, increasing to 12 grams in about 6 weeks. What you can do is ask your LLMD, and then the infusion company makes the medicine balls (about the size of a small tennis ball) and they deliver them weekly and you keep them in your fridge.
I didn't have a huge herx on Claforan, it was a mild one. My big herxing came with IV Zithromax and Flagyl plus Bicillin and Hyperbaric Oxygen at the same time.
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lymeladyinNY
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posted
Tracy, I had a bad time with IV claforan. Watch for neutropenic fever. I was extremely ill and thought I was herxing. Come to find out the claforan caused my white blood cell count to go down to critically low levels!
I was hospitalized in isolation for a week and was very, very sick. Basically, I had no immune system. For some people, this is a side effect of claforan. Just watch for a fever and feeling very flu-ish.
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
I was on Claforan for one month. I had to mix it myself (bag). It wasn't the ball kind like the IV Rocephin.
I spiked a high fever (herx) while on Claforan which caused my llmd to pull the picc line, in case it was infected.
It wasn't infected. It was indeed a herx.
I also broke out in EM rashes while on it. And I felt very flu like the whole time.
But I think it was worth feeling horrible. It was a powerful (effective) drug for me. It helped many symptoms (I took it after 2 months of Rocephin).
Good luck!
Posts: 366 | From MA | Registered: Apr 2006
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Tracy9
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Thank you for all your feedback. I did find out today (called the pharmacy) that I will be getting the balls, and do it twice a day. I have no idea the dosage.
I am getting the PICC tomorrow but am not going to start the medicine until Monday....going to visit a friend for the weekend and don't want to herx there!
I'm glad to hear some of you did NOT have a huge herx; the LLD said to expect one....hoping not!
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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Tracy9
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I started it today; I am on 3 grams twice a day. That does not sound like enough based on what you all are saying.
I am very nauseous and have a very bad headache a couple hours after my first infusion. I hope this passes.
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
You might want to a search of the archives on this drug as it has been discussed before. My experience was not good and what happened after three weeks was unlike any herx I ever had before. Major hives, collapsed in bed for two days. There is a term for this kind of drug reaction, which my brain cannot retrieve, but it is probably in my post in the archives on this drug.
So, some people do OK, but there have been substantial numbers who reacted badly. Whether the bad reaction was indeed a different kind of herx, I don't know, but personally did not feel it was safe for me to continue.
Hope you do well on it.
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Tracy9
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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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Tracy9
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I should add, I have taken two doses so far. About 1/2 hour after the dose is completed, I have had about 3 hours of moderate nausea, a moderate to severe headache, and body aches, which abate after about three hours.
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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Tracy9
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OK, so now the nausea seems to just diminish for a bit, and if I eat anything it comes right back. The headache has set in again too. It's almost time to do another infusion, oh joy. That means this is all about to just get worse again.
No wonder "weight loss" is one of the side effects....which I need, but this nausea I could do without!!!
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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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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Abxnomore
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posted
Lou is absolutely correct. One must be monitored closely on this med. It works well and most do well on it but it can be risky for some.
Keep an epi pen near by and if you feel any symptoms like an allergic reactions, shortness of breath, tightness in the chest, high fever, anything like anaphalatic shock......go to the ER ASAP.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Tracy9
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I'm kind of concerned about the neutropenic fever; today my temp is rising though still under 100; but I feel very fatigued and just overall very feverish.
Can anyone elaborate on just what those symptoms are? I'm having trouble finding much on google; it all relates to cancer patients. How high of a temp is considered dangerous?
Having just been in the ER a few days ago, I certainly don't want to consider going back over nothing. Just wondering what to do if my temp keeps rising.
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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quote:Originally posted by Tracy9: How high of a temp is considered dangerous?
Over 104 is emergency and 104 for several days is a cause for concern
Now temperature alone is not the only factor there are people who die of sepsis and their temp never goes over 99, and there are people who are fine after 102+ fevers for weeks. If you have PICC I would be concerned with possible infections
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