Allergies and Campath, update 6 months after Campath

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

Allergies and Campath, update 6 months after Campath

Postby Fighter » Thu Oct 23, 2008 11:33 am

Hello, I received Campath off lable in April of this year. It is very true that the reasurch trials have shown promising results for RRMS. Some studies have shown Campath to be 84% more effective than Rebif, but like any drug you need to seriously consider the drug in your perticular case carefuly and READ, READ, READ forums like these that have patients discribing their specific reactions.

Prior to Campath, I had tried Copaxone, Betaserone, IVIG, and Rebif. I had hives after being on copaxone for 1 1/2 years, migrain HA that lead me to ER with IVIG, depression with Betaserone and suicidal thought with Rebif, and my MS symptoms continue to progress with all of them. In Dec. 2007, my MRI showed that my brainstem was significantly involved. The brainstem controls all of the bodies functions. Therefore, my Doctor recommended that I begin Campath treatment. He was providing Campath off label. I did not qualify for the study because I had been having MS symptoms for 10 years. I was concern about this treatment because it was "chemo," but my doctor told me if I was a family member he would recommend Campath because it would give me the best chance to stabilize my MS.

I underwent my treatment in mid April, 2008. On day 3 of the treatment I came down with hives on my trunk which was to be expected during treatment, but also had an asthma attack which required oxygen. Because of this they spread my treatment over the full 5 days.

When I returned home, I continued to have hives which were miserable, but overall I was doing fairly good, just very tired. At 4 weeks after treatment I saw my Doctor for a follow up and they could not believe I still had hives which covered me like chicken pox. They said I was just taking longer to get over them.

The following week I had a severe MS relapse which left me a great deal weaker. I received 3 grams of IV solumedrol for my relapse which also releaved my hives, only to come back again the following week even worse. Too make a long story worse, I finally was seen by a dermatologist who did a biopsy on my hives. The biopsy showed that the hives where due to a medication reaction.

We began taking me off of one medication at a time which lead us to find out I had become allergic to both the anti viral and ant biotic which were part of the post treatment protocol. The hives went away for several weeks, but I caught several infections. We would try to treat the infections, then I would get hives again. After being off those two medications for a while I came down with hives once again, plus a severe athma attack. This time it was Lyrica, my Lyrica which I could not do without this drug for my neuralgia. Off of Lyrica my hives and athma improved, but I was left with severe pain. I was placed on Neurontin to control the pain, but my hives slowly increased again.

This time they placed me on two anthistimines and a medication for itching. It is now the end of October and I am still covered with hives from head to foot. my skin feels raw and I have bald spots in my head from scratching hives on my scalp. The chemo has made me allergic to multiple medications and my system is full of inflamation. I have decided myself that I am going to come off all of my medications, get the inflamation out of my system and add the medications slowly back one at a time.

Campath has made me highly allergic to multiple things and as a result haulted my ability to recover from the Campath treatment appropriately. I am 40 years old, single and more disabled now than I was prior to the Campath treatment.

Like I said before, Campath has shown to be very promising in RRMS. Some studies show a 75%-84% improvement from Rebif. That is great, and why I decided to do it. However, I read no information about the negative side effects that it could do to your immune system after treatment. I am sure that I am not the only person that this has happend too. The Nurse from my Dermatologist office saide her Mother had my same reaction following chemo for cancer.

Please, just read this and keep it in mind when trying to decide if Campath is right for you. I was only allergic to dust, dust mits and Copaxone prior to Campath. I will update you on my Allergy test results next month. They need me to get rid of my hives before having the test.

Please let me know if anyone has encountered similar results.

Thanks,
Itching in GA.
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campath & allergies

Postby k6ristin » Thu Oct 23, 2008 7:32 pm

Thanks for your post.
I asked my neuro for data on allergies-post-campath and she didn't know of any.
I, too, got a similiar itchy rash after receiving Campath. Mine lasted for about a month, plus another few weeks just red but not itchy. Prior to Campath, had no known allergies and I had recently had a completely negative IgG allergy test.

now it's 7months after campath I continue to have terrible cold type infections and often wondered if I had developed allergies. I took another IgG allergy test and it was still negative. I am considering doing a fancy allergy test from a company called alcat, where they check all the immune pathways (IgE, etc..) via leukocytes for common food plus chemicals, meds, molds, a long list. It costs anywhere from $300 to $1200, so I'm hesitant.

When I first was diagnosed, (2006) I saw a naturopath physician who did a strange allergy test called vole (or EVP something, my mind just went blank) where they put electric current through an accupunture point in the finger, &measure the response. It showed me allergic or sensitive to everything imaginable and then some. I tried to eliminate wheat and milk, but it was very very hard (these are common theory-allergy-causing MS foods, too) I'll admit I did feel alittle better over-all but it was nothing super noticable as far as MS, but maybe i didn't do it long enough.

Anyways, Thanks again for posting, It was hard to find first hand info when I was researching for myself; so now I've blogged my whole experience and so have you, so we're doing our part!!!
All the best!
I feel like fighting these constant infections have hindered my ability and desire to increase my activity; which I think is necessary to regain my deficits!!!

Good Luck to you!
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Doctor who may prescribe Campath for early MS?

Postby Alli » Fri Oct 24, 2008 6:53 am

I was just diagnosed last month. I am desperate to find a neurologist who will prescribe Campath off-label as it seems to work best within the first 5 years of Diagnosis. I have 2 little girls and am fearful that by the time FDA approves Campath for MS, I will have missed the window. Would anyone, even by private message, be willing to give me the name of a doctor who may prescribe it off-label?
I'll fly anywhere, pay anything.
Thank you in advance for any help you may provide.
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Postby Grumpster » Fri Oct 24, 2008 3:40 pm

Fighter - thanks for the post. I am seriously considering Campath and I need to know all the possible side effects. I am sorry to hear you are not taking it well. I too have brain stem lesions and a specialist told me - you have to change course now before it is too late - ominous at best. Anyway I am going to discuss it with a neuro on Monday - Rituxan too. anythig at this point - Maybe a bee sting enema would do the trick - kidding

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Re: Allergies and Campath, update 6 months after Campath

Postby CureOrBust » Sat Oct 25, 2008 5:45 am

Fighter wrote:... but also had an asthma attack which required oxygen....

... I had become allergic to both the anti-viral and antibiotic which were part of the post treatment protocol...

...plus a severe asthma attack...

First of all, thank you for your story. It is very important that we hear a treatments failures as well as the successes, but I am sorry that it doesn't work for everyone, and that it didn't work for you in particular.

Did you have asthma before the Campath treatment?

Which ant-viral and antibiotics did you become allergic to? Have you had them before you had Campath?

Thanks again.
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Postby ursula » Sat Oct 25, 2008 7:09 am

Hi Alli,

I would be careful about taking Campath as first therapy (you probably won´t get it anyway..).
There are severe side effects!

In the trial were about 200 people getting Campath - e.g. 25 % got thyroid problems, 3 patients got severe bleeding disorders, 1 patient even died!
The trial had to be cancelled.
But most articles conceal the severe side effects.
The manufacturer "Bayer" even claims:
The side effects are controllable."
That´s just cynical in my eyes.

I would never take this stuff, only if I were in a really bad condition.
Last edited by ursula on Mon Oct 27, 2008 2:29 am, edited 1 time in total.
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Postby Grumpster » Sun Oct 26, 2008 12:19 pm

Good data Ursula, unfortunately some of us are in a really bad spot and will roll the dice....
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Postby ursula » Mon Oct 27, 2008 2:29 am

Hi Grumpster,

I wish you all the best!
If your MS ist quite active, Campath might be a good drug..!
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Postby bromley » Mon Oct 27, 2008 3:05 am

Ursual wrote

I would be careful about taking Campath as first therapy (you probably won´t get it anyway..).
There are severe side effects!

In the trial were about 200 people getting Campath - e.g. 25 % got thyroid problems, 3 patients got severe bleeding disorders, 1 patient even died!
The trial had to be cancelled.
But most articles conceal the severe side effects.
The manufacturer "Bayer" even claims:
The side effects are controllable."
That´s just cynical in my eyes.

I would never take this stuff, only if I were in a really bad condition.


When you sign the forms for this treatment they outline all the risks - these are all listed on the form which you sign and the doctors discuss them with you. The thyroid condition is treated with a pill a day (and the condition has often been found to be transitory). ITP can be monitored (through checking for any abnormal bruising and a monthly blood test) and treated (with steroids). The person who died didn't go to the doctors - so it is sad, as the death could have been prevented. The trial was not cancelled but stopped until the circumstances surrounding the death were investigated and new procedures put in place for monitoring.

The aim of this treatment is to try and shut the disease down in the early phase - before too much damage has been done. So this presents a dilemma in that you are treating fairly healthy, young people, with little disability with a powerful drug with some nasty side-effects. Unfortunately, by the time you get to a "really bad condition" this treatment will not be of benefit.

While these more powerful treatments do come with risks there are also severe risks with MS (a very long-list of severe side effects). It's all down to our personal views on what risks we are prepared to take etc.

I was very much in Grumpster's position and was prepared to roll the dice. Best of luck Grumpster - whatever you choose.

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Postby ursula » Mon Oct 27, 2008 3:43 am

I´m just wondering why ALL the media are full of the "news" (results have been available since 2006!)
Looks like a well planned huge campaign all over the world (good work, Bayer!!)
In my opinion they want especially the newly diagnosed people to worry if they might loose precious time..?!?
How do they know that only patients with fresh ms can benefit? (I think they took only patients without treatment in the past - sure they were afraid of unforeseeable interactions)
I agree, bromley, everybody has to weigh the risks.

I remain sceptical und prefer to wait for a couple of years.
Like most of the MS-patients, I´ve had very relapses in the beginning (only 1 1/2 so far).

Respect to all the people who take the risk to participate in the Campath study!
Last edited by ursula on Mon Oct 27, 2008 4:48 am, edited 2 times in total.
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Postby CureOrBust » Mon Oct 27, 2008 4:09 am

I am guessing about the current media deluge, was due to one reporter having a slow news day or friend who led them onto it, and then once one news source reported it, the others just followed not to be outdone. And so we have the snowstorm we are seeing now.

Personally, I think "don't look a gift horse in the mouth" with regard to MS media coverage. If it was Bayer, then they are are 2 years behind, considering the results were available in 2006; so, "bad work Bayer" :lol:
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Postby bromley » Mon Oct 27, 2008 4:51 am

I´m just wondering why ALL the media are full of the "news" (results have been available since 2006!)
Looks like a well planned huge campaign all over the world (good work, Bayer!!)


This is not correct. The 2 year results from the CAMMS 223 trial were reported in May 2007. This is the 3 year results from the CAMMS 223 trial which were published on 23 October 2008.

The paper can be purchased from the New England Journal of Medicine - I think it's $10. There are plenty of data in the article for those who are interested. There is a clear diagram showing what happened to the patients on the three different treatment arms of the trial.

The data of interest to me was as follows:


Relapse

Patients with no relapse at 36 months: Rebif - 51.6%; Campath - 80.2%

Change in EDSS from baseline

Scored improved or stayed the same at 36 months: Rebif - 58.7%; Campath - 79.5%

There is an editorial in the 23 October 2008 NEJM by Stephen Hauser about the Year 3 Campath Phase II trial results. This piece is also worth purchasing. Dr Hauser points to the increaed risks with a drug such as Campath (Alemtuzumab). His piece ends with the following:

What have we learned from the alemtuzumab experience? The data convincingly demonstrate that intensive immunosuppression can dramatically reduce the accumulation of new inflammatory lesions and focal scarring and the rate of clinical relapse in pateients with recent-onset multiple sclerosis. The current study by Coles et al., combined with earlier pioneering studies by Alastair Compston and his colleagues using the alemtuzumab paradigm, highlights the value of very aggressive therapy instituted at the beginning of the disease process, a time when the majority of inflammatory damage is subclinical and disability is absent or mild in most patients. The authors suggest the possibility that early treatment may protect against the development of neurologic disability many years or decades later. In a larger sense, these data point the way toward a rethinking of therapy for mulitple sclerosis, akin to standard models of cancer therapy, in which an intensive induction is followed by a less-intensive maintenance regimen. Although the place of alemtuzumab in the armamentatrium of therapies for multiple sclerosis will ultimately be determined by its efficacy and safety during longer periods of observation, these thoughtful clinical investigations have advanced the field substantially by helping adress the relationship between the inflammatory phase of the disease and the degenerative phase, as well as the potential value of early aggressive therapy.



I would imagine that his comments also apply to treatments such as HiCy.
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Postby ursula » Mon Oct 27, 2008 5:06 am

unfortunately, I only know an article in german..

I can only try to translate roughly (I´ll do my best)

Equity traders say an article in the "new england journal of medicine" was only launched to arouse again attention of the investors for Campath.
As expected the shares of Bayer are rising (one of the few ones at the moment!)
The article is only a summary of figures that have been known for over a year already
No news at all.

"Gegen 10.00 Uhr kletterten die Titel des Chemie- und Pharmakonzerns um 3,36 Prozent auf 43,12 Euro und damit an die Spitze im DAX . Der deutsche Leitindex verlor unterdessen 0,56 Prozent auf 4.545,30 Zähler.

Händlern zufolge sorgte ein Artikel des Journals über die positive Wirkung des Antikörpers Alemtuzumab, der bereits zur Behandlung von Leukämie zugelassen ist, gegen Multiple Sklerose (MS), für Unterstützung. Der Artikel fasst allerdings im Kern laut Bayer-Schering-Pharma nur bereits seit gut einem Jahr bekannte Erkenntnisse zusammen. Bereits vor etwa einem Jahr hat Bayer Schering Pharma den Start der Phase-III-Studie bekannt gegeben. In dem nun veröffentlichten Artikel werden Ergebnisse einer Phase-II-Studie besprochen. Der Artikel habe wohl nur noch einmal die Aufmerksamkeit der Anleger auf die Möglichkeiten des Antikörpers gelenkt, hieß es am Markt."

http://www.finanzen.net/nachricht/AKTIE ... ker_798124

good work, Bayer!
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Postby Waterbear » Mon Oct 27, 2008 6:08 am

ursula wrote:How do they know that only patients with fresh ms can benefit? (I think they took only patients without treatment in the past - sure they were afraid of unforeseeable interactions)


They know that because the drug has been tested with progressive types of MS in the past without success.

And Phase III trials are recruiting patients that have unsuccesfully been on intereferon.

ursula wrote:unfortunately, I only know an article in german..


Equity traders don't react to information already published.And i don't know if Bayer places its bets on easily convinced MSers,but by concluding 'good work Bayer' based on the single article you know you seem rather easily concinced.
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Postby ursula » Mon Oct 27, 2008 6:29 am

I think without marketing tricks like this the bayer shares would never have risen in the middle of the current world wide financial crisis.
Last edited by ursula on Mon Oct 27, 2008 9:33 am, edited 1 time in total.
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