I have been on IV claforan now for a week...was on rocephin for 3 months and lost gall bladder so switched to claforan.
First two days were great...then hell broke loose..major nerve pain in groin, pelvis, jaw, head neck and brain fog...
Of course it sounds like a herx but my pain level is up around a 7-8 and I cry before sleep.
Anyone have exp with claforan? should I wait it out or ask to stop?
thanks Kim
Posted by pq (Member # 6886) on :
haven't done this, but claforan was often discussed in past years. best bet is to search archives of this and other sites,starting from mid to late 1990s.
Posted by lyme4 (Member # 10723) on :
Hi,
My daughter, 14, undiagosed for 11 years with lyme,was on rocephin for 3 months just like you and now is on the same as you too.
She had to go off Rocephin until her liver numbers came down and she passed her gallstones that she developed from the Rocephin.
So being off the iv for 5 days, then starting Clarofin, she also did not feel good. She had pain too and was extremely mooding. She did not like being off the medicine for 5 days so we think she was herzing on the new medicine. It took about 3 weeks to get better with the pain but she is so sensitive and moody and cries alot, more than she did before. Her whole body became itchy for a week when she started the clarifin. There was no rashes, just itched. Maybe it was killing the lyme.
Maybe this new medicine is working better?
We shall see. She will be on this for 3 months.
Lyme4
Posted by lou (Member # 81) on :
Did either of you who reported gallbladder/liver troubles with rocephin have actigall being taken with it? This is supposed to prevent gallbladder trouble; so does it, or did this happen in spite of the actigall?
BTW, a lot of people have had trouble with claforan and had to quit. Seems it provokes something like serum sickness in the third week. Will be hard to tell this from a herx, maybe. Just keep an eye out for something that doesn't seem herx-like, while being a severe reaction.
Yes, try the search function for previous posts in the archives.
Posted by lesley1954 (Member # 7626) on :
That's interesting, Lou. During my then 14-year-old daughter's third week on Claforan, she complained of chest pain, difficulty breathing, and sneezing within seconds of starting her infusion.
Each time the complaints came quicker and seemed more severe. We, of course, thought it was an allergic reaction and stopped the infusion. By the third time, her local LLMD switched her to IV Zith. She later saw Dr. J (CT), who sent her for allergy testing for Claforan, which proved to be negative.
It would have been very difficult to keep going with the Claforan given her reaction, but it was confusing when we learned it was not an allergic reaction.
Posted by lyme4 (Member # 10723) on :
Thanks, Lou for the info. My daughter did not go on actigal until she developed gallstones. I wish I would have known to go on it with rocephin.
Her dr switched to clarafin but it just isn't the same. She always has something not right and I wonder if she is herxing or what.
I don't know what you meant by serum but will try to find out. We are seeing her dr in 3 weeks so I will tell him everything about this medicine and maybe ask about iv zithro.
How is the iv zithro going for your 14 year old daughter? Is it better than rocephin?
Thanks, Lyme4
Posted by humanbeing (Member # 8572) on :
My doc wouldn't give me actigall...said the risk of liver probs with it outweight the benefit.
Oh well.
Now off the claforan for two days and I feel really weird. Pain and burning is lessened but still steady. I had to cancel a trip to my grandmother's 90th birthday...so sad.
Made an appointment w/ob/gyn due to severe pelvic pain...don't know why claforan exacerbated these new pains
Now nervous doc will pull the line since he doesn't do any other IV's for lyme except rocefin and claforan...UGGGG
I'm tempted to just push through and go back on claforan...
Thanks for all replies! Kim
Posted by lesley1954 (Member # 7626) on :
Hi Lyme4, You asked how my daughter is doing and the answer is pretty well, I think. It has been almost a year since she went off IV-abx. She was on IV (Rocephin, Claforan and Zithromax) for a total of 14 weeks until she developed an infection in her PICC line.
We were disappointed she had to go off IV because she clearly had a long way to go. But she did well on orals. About a month ago, her doctor stopped Babesia treatment and tried to switch her to minocycline. After two weeks of horrible headaches, her doctor said to stop it because of concern about Pseudotumor cerebri.
So, for first time since August 2005, she has been off all abx and is doing pretty well. It's hard not to interpret every ache and pain as a possible relapse. We see her LLMD next week. My gut is she should probably be on Tindamax and another abx for a week or two each month. We'll see...