Campath worked great for me for 6 months, then RELAPSE CITY

A board to discuss the soon-to-be released drug Campath as a treatment for Multiple Sclerosis

Campath worked great for me for 6 months, then RELAPSE CITY

Postby LittleLisa » Sun Nov 15, 2009 3:12 pm

I was in the CAMMS323 trial and I received Campath (although I still do not know the dosage). I was only diagnosed with RRMS for one year and 2 months before going into the trial. I am currently at month 11, and will likely be pulled out of the study.

I tolerated the infusions very well, and even continued to improve for 6 months after the initial set of infusions, but right around the 6 month mark, I showed symptoms of a relapse and my EDSS score went from ~3-3.5 to a 5.5-6. I no longer was able to even do the timed walk without tripping, and or falling. I was given 5 days of Solu-Medrol and immediately felt better, but 3 weeks to a month later, I showed symptoms of a relapse again. I was given 5 more days of Solu-Medrol, and seemed to get better again. This time, I was sent for an MRI, which was 4 days after I stopped taking the steroid. There was an active lesion, so 5 more days of Solu-Medrol, in case I just needed more. I, of course, felt better, but three weeks later, another relapse. I was sent for another MRI. Surprise, surprise, the same lesion was not only still active, it was worse. Clearly, the Solu-Medrol was aiding with swelling, so I felt better for a short time, even though it had no effect on the underlying cause.

I have now had 5 days of Gamunex (IVIG) (eight days ago I finished the infusions) and have seemed to stabilized, even though I am not good, I am told that I should slowly start to improve over the next few weeks. Although I am rather scared.

I am the only patient that I am aware of that is like me, I was wondering if anyone else had any similar results, because there is only one other patient at the clinc, where I go, that has relapsed at all. She was given Solu-Medrol, and has continued to improve ever since.

I took Rebif for 1 year prior to going into the trial. I did not know until recently that Rebif can provide protection from a relapse for up to 6 months after you stop taking it. I don't know if, for me, the combination of the two drugs was what helped me initially, or what. Currently, my doctor is scratching her head, because I am not like other patients.

Is there anyone else out there that has taken Gamunex for a relapse. I don't know what to expect. I was hoping to hear about other people's experiences with IVIG.
Last edited by LittleLisa on Thu Nov 19, 2009 12:53 pm, edited 1 time in total.
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Postby patientx » Sun Nov 15, 2009 6:33 pm

Hi Lisa,

Sorry for what you are going through, but your post was very intesresting. I'm afraid I can't be of much help, since I haven't received Campath nor any of the other infusions you mentioned.

If you don't mind answering a few questions, so were you essentially relapse-free during the year you were on Rebif? Why are they considering pulling you from the study? And what exactly is Gamunex? I can't say I have ever heard of this drug.

As far as the 6-month time period, I think this is the generally accepted waiting period to see if one of the CRABs will have an effect. It might also be the wash-out period to completely remove the drug from your system. But, in any event, Rebif was only shown to reduce relapse rates by a 1/3, so I think it's tough to say what the combination fo it with Campath might do.
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Postby LittleLisa » Sun Nov 15, 2009 7:02 pm

Gamunex is a brand of Immunoglobulin G ( a chemical that is natuarally present in your immune system). Gamunex is also called IVIG, as it is given by IV over several days. The drug is made by purifying it from human plasma. It is believed that the overabundance of this chemical in an MS patient "reboots" the patient's immune system, to stop the attack and repair the damage, although the mechanism is not well understood.

My first attack went on for several months before I was given Solu-Medrol (1000 mg of Methyl-prednisone) to supress my immune system. (I had a doctor that was not terribly attentive. I have since moved to a different state and have an excellent doctor now.) I was given Rebif shortly after being diagnosed, but was not given any drugs to "contain" the attack on my brain and spinal cord. Once I was given Solu-Medrol that first time (in 2007) I immediately got better, and yes the Rebif kept me stabilized and relapse-free until I changed to Campath. I was motivated to get into the clinical trial because I know other patients in the trial that got better. As we all know, there are not any FDA approved treatments for MS that make the pateints better, they just keep you from getting worse.

They are considering pulling me from the study because Campath is a Leukemia drug (chemotherapy and not good for you, especially when you don't see the benefits that make the risks worth while), and it significantly limits the other drugs that they can give you for a relapse. Solu-Medrol is an approved treatment, and effective for most patients, I have grown immune to the steroid, though. You have to detox from Campath for one year before you can take a different disease modifying drug like a Rebif, Copaxone, or Tysabri, or there becomes a fairly high risk for beveloping Lymphoma from the presence of too many immunosuppresive drugs.

You are correct, Rebif has only been shown to reduce relapse rates by 33%, and Campath by 75%, but this has not been my experience. For the first 6 months, I improved far more than I ever did on just Rebif, but I have not remained stabilized. I think that those first 6 months the Rebif and Campath were both aiding me. I was infused with Campath in December 2008 and began having problems in June of 2009. I have an extremely good doctor, and she is keeping close tabs on me, but right now, I feel BAD. My legs work as poorly as they did when I went for 8 months without any effective treatment. I am concerned about the outcome, and I have only been diagnosed for a little over 2 years.
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Postby CureOrBust » Sun Nov 15, 2009 10:42 pm

LittleLisa wrote:I was infused with Campath in December 2008 and began having problems in June of 2009.
Was there no placebo arm in this trial?
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Postby LittleLisa » Mon Nov 16, 2009 9:09 am

No placebo arm of this trial. Patients either got Rebif or Campath. That is why I signed up. I was already on Rebif, and I thought that it would be nice to have the drug company pay for it, and MRI's once per year, if I was not given Campath. I lucked out (or at least I thought I did) and was assigned Campath.

Please note, that I am not trying to dissuade the approval of Campath as an MS treatment, and I am not trying to suggent that anyone that wants this drug should not take it. I simply want it to be known that this drug is not the magic cure, and not all patients respond to all drugs the same way. The last six months have been a disheartening disaster for me. Now, I am once again playing the wait and see game. That scares the heck out of me. :cry:
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Postby Lyon » Mon Nov 16, 2009 3:45 pm

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Postby LittleLisa » Mon Nov 16, 2009 6:00 pm

In this trial, it is okay for the patient to know what drug that they are on, just not the dosing. The doctor that administers the EDSS testing is not allowed to know.

You are correct, the Campath is given as a several hour infusion for 5 days the first year, and 3 days the second year, where as Rebif is administered by the patient, in injection form 3 times per week. Simply because the medicine is given differently, I could have easily determined if I received Campath or Rebif, even if my doctor had not told me.
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IGG, and worse after campath?

Postby k6ristin » Mon Nov 16, 2009 6:43 pm

Hi Lisa,

I tried IGg once, @ 3-4 months before I got into the campath study and was infused. it didnt help me but has helped others.

to those in the post that have questions: we know we got rebif or campath, but in my version on cARE MS, you don't know what dose of Campath being infused. Now, the study changed & is only the low dose. no, dont know when that changed.

Back to Lisa's concerns: I got worse and better, have received steroids twice (I think) please read all my posts for play by play, but the short version is like i said, good & bad, but overall, so far, 20 months in and two infusions, i dont consider myself over all worse-off.
(lots of treatments have "herxing" where you get much much worse before getting better)
My history: had MS less than 2 years, did poorly on avonex & copaxone and while still called RRms, seemed to be declining.

Different things come and go, but i did not ever get an MRI in response to an episode/event/feeling (or lack thereof) at some point i think i've been told that MRI's dont necessarily correlate..its hard to get a straight clear answer with anything in MS. the study calls for an MRI at the end of the first year, and it was ok, nothing new and slight shrinkage of a spot or two.

When I had my first (new) symptom of L'hermitte sign, i was told "we dont have to treat sensorial deficits" but i could get steroids if i wanted to. i declined. (this was early after first infusion)
when my left leg started buckling repeatedly and uncontrollably (right before the second infusion) it was declared an official flare-up and i got steroids. felt better but it didnt stop what i came to know as wicked spasticity. a new symptom for me. ( so far, 2 new symptoms status post campath)

recently i think the leg buckling/spasticy got better. its been 10 months or so now? i see this as good, as my original MS symptoms continue, the most annoying being difficulty walking, and inability to walk when fatigued.

feel free to PM/email me...i didnt know that there was a campath wash out period before getting another drug. my doctor is telling me the treatment could someday be used w/ a CRAB....some people need campath sooner than a year and others maybe only every couple years.

so always check if your doctor is telling you their opinion or the study rules. often they're different and ultimately its up to your healthcare provider to treat you according to your individual needs.

all the best,

kristin
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Postby LittleLisa » Mon Nov 16, 2009 7:03 pm

Thank you, Kristin. I am really glad to hear from someone that has been in a similar situation. My problems are also mainly related to walking, leg coordination, severe stiffness and spasticity of my legs, and balance problems.

I will definitely speak with my doctor about the use of Campath sooner than a year.

I was told that they only give low dose of the Campath now, because the high dose greatly increases the risk of developing ITP or thyroid disease , while the rewards remain only about the same as the low dose.
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Postby Lyon » Mon Nov 16, 2009 7:21 pm

.
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Postby patientx » Tue Nov 17, 2009 7:47 am

i didnt know that there was a campath wash out period before getting another drug.


I would definitely question the doctor about this. Patients now getting Revimmune, which similar to Campath severely depletes the immune system, are given Copaxone for a year immediately following treatment. So, it would seem receiving Campath wouldn't preclude you from taking Copaxone right away. I don't know if that also applies for the interferons, but I can't see a reason for it.

Now in the case of Tysabri - I can see why you wouldn't want to take that after having your immune system depleted.
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Postby Loobie » Tue Nov 17, 2009 1:45 pm

patientx wrote:
Now in the case of Tysabri - I can see why you wouldn't want to take that after having your immune system depleted.


Amen to that statement. Lisa. I'm sorry to hear you are having a hard time on the Campath. That has to be a letdown.
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Postby LittleLisa » Tue Nov 17, 2009 4:34 pm

Thank you all for your thoughts and kind wishes. I will get through this, I am just a little frustrated right now. You all have made me feel better. I just have to remember "this, too, will pass", "this, too, will pass", and eventually I will be relatively okay again.

Thanks to everyone for the support!

Lisa :)
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Postby Grumpster » Thu Nov 19, 2009 4:36 pm

Hello Lisa, another Campath lab rat here. I had similar issues as you but different. It seems that for six months or maybe seven I did really well, much better than I did on Rebif. Then I started having worsening symptoms and potentially a relapse. Oh yes and a wicked case of ITP. See my post...

My neuro said that I can go on Copaxone, since I likely can not take any more Campath (I believe it is a combination of battery acid, goat urine and hampster blood anyway 8O ) I think that it would not be until I am due for the next round of Campath though. I would hesitate to start another drug, especially Tysabri while having Campath in the system. The one year thing is proly true.


All I can say is I am wishing you the best, god bless and try to stay strong. Grumpy
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Postby LittleLisa » Thu Nov 19, 2009 7:48 pm

I am sorry for your troubles, too, Grumpster.

Were you on Rebif right before Campath (not including the 1 month or so detox period)? If so, I wonder if it was the combination of Rebif and Campath that made us both improve for a short time? Interesting concept.

I hope you get through the ITP safely.

Good luck and best wishes,

Lisa
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