posted
My daughter has been on IV Claforan for about 4 weeks now. She was on IV Rocephin for 8 weeks prior to that. Last week the doctor called to say that her White Blood Cell count had dropped to .09 and she could not fight off infection. Her liver function was not doing well either. Have others had this happen and been able to go back on Claforan? The doc wanted one week off then try it again?
The last 3 days she infused, she also got severe arm pain in her left arm, starting in the back shoulder blade out to her bicep and down to her wrist. It was excruciating. The first 2 times it happened after the infusion but the last time it happened 10 min. in and we stopped it immediately. Our LLMD mentioned maybe doing an ultrasound of the arm? I am not sure what he is looking for. She also has some small bumps under that arm that our home nurse thought maybe were lymph nodes, but surprised that all of this is left sided. The other arm was very mildly affected, but the left was severe.
Has anyone else had these symptoms? Any reason what causes the arm issue? I know that 1% of Claforan patients can get the Low WBC but have not heard of the arm pain.
We see the LLMD on the 10th, but I want answers sooner, if anyone else has any ideas. Also am trying to get thoughts together for our appt.
Thanks,
Posts: 55 | From USA | Registered: Sep 2005
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posted
You didn't say -- is the PICC line in the left arm and that is the arm that was hurting during the infusions?
It seems to me I have read somewhere that Claforan is very caustic and requires a central line, but I could be wrong?
It is always possible to get an infection of the blood vessel the PICC line is in and that is probably the reason for an ultrasound.
That is an extremely low WBC and is not something to ignore. I would be very nervous about resuming antibiotics until the WBC returns to normal -- definitely would want to repeat bloodwork before continuing with antibiotics.
If you are not already doing so, suggest you request copies of all bloodwork and keep these in a file. The trend is very useful to see if this really is the result of the Claforan or if the WBC has been low but just not this low on other antibiotics.
You probably need to add in some immune modulators as well. Dr B on Long Island suggests Reishi mushroom which acts kind of like an adaptogen for the immune system -- it regulates the different components and is supposed to normalize the over or under active parts of the immune system -- most Lymies have underactive killer cells and overactive monocytes. Any of the mushroom products would probably help.
With such a low WBC an actual immune booster might also be a good idea -- echinacea or goldenseal or transfer factor are just a few choices. You could take one of these with the Reishi -- it would not be a problem to take more than one immune booster at the same time as long as you are doing routine bloodwork to monitor things.
None of this is medical advice, just suggestions based on personal experience with my hubby.
Which liver enzymes were elevated? And how elevated? -- this again is something that the trend could be relevant.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
My sister was on iv claforin and had low wbc count. I believe that like me she has babs (drs. won't believe as usual, or test) and the claforin is targeting the babs and effecting the red blood cells...Just my theory..
Posts: 740 | From BC Canada | Registered: Mar 2003
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi,
I developed arm pain in the picc line arm in my 4th week of Claforan.
Watch this pain, ok? I did go to the hospital as instructed by my home health care nurse, and I had them look at the picc line.
The picc line was in fact fine. They put a new one in the next day just in case.
But, for me anyway, that arm pain was just a precursor of what was to come. Within a few days I had become very, very sensitive to the Claforan, to the point at which infusing just a tiny fraction of the original dose caused a deep bone pain in my limbs.
What had started in my one arm had spread to my other limbs.
I have heard of another person to whom this happened. She is a doctor herself.
The pain upon infusing became so intolerable that my PCP, who was in the university infirmary with me when I infused and the pain started, made the executive decision to halt the Claforan for a while.
We are still not sure if it was a serum sickness type reaction or a very intense Herx. Either way, I could not have tolerated the pain.
It felt like my arms and legs were being constricted, like when they constrict your arm to take a blood test. Everything felt tight and constricted inside and I just felt this unbearable bone pain.
I don't mean to scare you. It could be totally harmless, and it could simply be something in the picc line that needs to be adjusted.
If you continue to infuse, be aware of that pain spreading to other parts of the body.
I tried to tough it out for a few more infusions, and then found even after I stopped infusing, the pain stayed with me a long time. That arm pain was the first sign that this was coming.
Please be in touch w. your Dr. I did not have the low WBC but my liver enzymes went way up - another reason my PCP just did not want me to keep on it.
I'm a small person and extremely sensitive to medications of all kinds, but, as I said, I do know of one other Lyme patient who experienced that all over deep pain.
It's very interesting to me that this is happening in the 4th week. That is when the arm pain started with me.
Also, how much Claforan are you infusing? I did 2 grams 2 times a day. (Total of 4 grams). Since that experience, I have stayed with oral abx and they are indeed helping me. Whatever it was, I was just too petite or sensitive to the IVs to stay on them.
If you have any doubts, I would definitely start a break from the abx. But do check with your doctor.
Warm good wishes and hoping things turn in a positive direction for you very soon. Good thoughts coming your way.
Posts: 1067 | From East Coast | Registered: Dec 2000
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posted
I am sorry that I didn't mention that my daughter has a port in her chest, so the pain is not related in any way to the PICC line. But this last reply sounds exactly like what happened to her! My gut, and hers, says to not restart the Claforan. The first day it was pain in one arm, then it went to her other arm and her legs, but most severe in the left one. It is still there to a much milder degree a week after stopping the Claforan! And there are these grape sizes lumps under in her armpit on the left side too. Our local doc is gone until Monday and we see Dr. J in CT on Thurs. the 10th. I really wish I could figure out what was happening so I could talk to him about it. It did not sound like something he has seen much.
The WBC rose slowly and was up to 9.2 yesterday which is higher than it has been in a long time, but normal. The RBC was a tad on the low side, but ok. The Liver Functions had been AST 131, now down to 36, (just a tad high still) and teh ALT was 93 is down to 73 (normal high 40). I am not sure what these two liver funtions mean. The Globulin and Protime were off but at the same rate they always are.
I hate these odd things going on. My daughter is 15, been ill for over 10 years, and is still very sick. It is hard to watch her struggle so much, and I so want to help her get well, but worry about what the treatment may do to her Thanks to you all!!
Posts: 55 | From USA | Registered: Sep 2005
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi,
I just replied to your private message. I can't find your email address, though, so I could not send you a copy of another email someone sent to me that was helpful.
That email included info that Claforan and Rocephin come with warnings about this kind of pain, and should be discontinued if it happens.
I looked in all my old kept emails to see if I had kept it.
I have to run now... but please follow your intuition.
I have been down this road, and am thinking of you.
Posts: 1067 | From East Coast | Registered: Dec 2000
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posted
Thanks for the info. Without this group I would know of no one with this problem and it sounds identical yours and my daughters!! I phoned the makers of Claforan and they have never heard of the arm pain such as my daughters. She does not use a PICC so that is not it, but uses a chest port. The guy was stumped, but nice and took a report on it.
If anyone else sees this and has the deep pain with infusions I would love to hear it.
Thanks,
Posts: 55 | From USA | Registered: Sep 2005
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posted
We saw Dr. J in Ct on Thurs. and he has seen something like this one time, and the girl was allergic to the Claforan. He wants our daughter to have IgE antibody testing done. It can tell if one is allergic to Rocephin, Claforan, or Ceftin. He said it will help him to see if she is truly allergic to these meds or if it was a wicked herx. It will help him in the future as far as treatment options he has.
Posts: 55 | From USA | Registered: Sep 2005
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posted
I just wanted to update anyone who has had this problem with Claforan. Much to the allergy doctor's surprise, my daughter IS allergic to Claforan. All other IV meds tested ok of the 6 they can test for. But the last test showed a reaction to Claforan. He was surprised as he said her symptoms were not at all typical for an allergic reaction.
We are glad to have this information because the alternative was that it was a herx and staying on it or trying it again, may be helpful. Now we know this would not be the way to go...
There is only one doctor in the country who tests for the IV drugs and he is in Westchester county NY, 30 minutes outside of NYC.
Posts: 55 | From USA | Registered: Sep 2005
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I had the exact same reaction as Henson2 described. It was at the 4 week period and it was an ischemic type pain in the arms and legs. It is interesting that your doc says its an allergy. Guess I will have to be careful in the future. Although I did go on to use an oral Cephalosporin, Vantin, without an problem.
Karen
Posts: 1851 | From Maine | Registered: Jun 2004
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
While on Claf, my WBC got so low that I became Neutropenic and LLMD and infusion company had me stop. Liver funct was elevated as well. Labs 2x per week was essential. Luckily, they returned to normal in a few days off all meds.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
hope-
I am really glad that you got an answer as to what was going on with your daughter and where the pain was coming from.
I can't imagine what it must be like for your daughter. I hope that she gets some improvement soon.
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