8 month update, and a long rant.. enjoy....

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

8 month update, and a long rant.. enjoy....

Postby sugarmomma » Fri Nov 21, 2008 8:16 am

Well it has been 8 months since my first campath infusion.

I actually have been feeling pretty good lately. I can't say it's a miracle drug or that it has repaired any damage so far. Although, some days my eyesight seems a bit better.

My general energy level is really pretty good and I seem to be able to manage my symptoms better. I think part of that is that I have just learned to realize my limitations more.

Although I generally feel better, some of my symptoms seem to have gotten a little worse. I have daily numbness now, where as it used to be only weekly. Also my bladder seems weaker.

I also think the results of the study are over exaggerated. I am pretty sure I have had a least one flare up since the study started, but my doctors refuse to call things flare ups now. If I report one, they have a really old doctor come in and retest me. At the time I was having what I thought as a flare up, I definitely was walking worse. However, the doctor said my scores were higher, so they called it an "unconfirmed" flare up. I think the test are bogus and don't accurately provide information on my progress. My only hope is that they are being as strict on the rebif side, and being just as hesitant to call things flare ups.

This being said , I really believe that the Campath has increased my quality of life. I am glad that I made the decision to participate in the study, although it has been a hard road to travel at times.

I am worried about the next infusion in four months. I guess most people developed the graves disease after their second infusion. And although the memory of how awful it was is slowly fading, I still know it is going to suck. I am hoping that I will know what to expect more in the second infusion and that my body will handle it better.

I still have not been able to drop the 10lbs I gained 8 months ago as a result of the infusion. But maybe that is just because I am getting older. Also my hair never really recovered from the damage the Campath seemed to cause ( severe dryness and brittle).

However, the aforementioned seems like a small price to pay in regards to a having a better quality of life. The monthly blood draws are really annoying, as are the 3 month "in house" testing we have to do. I am tired of feeling like a lab rat, although everyone in the doctor's office does their best to make it an enjoyable experience.

I am frightened of how much hope people are putting into this drug. I think it is a good step in the right direction, but no miracle cure. Newly diagnosed people seem desperate to get on this drug and I think they expect too much.

I think there is a fine line you must walk when you have MS. On one hand you have to have hope, keep a good outlook, and always be pro-active about trying to find what works the best for you. However on the other hand, I think people need to accept their diagnosis and prepare to take the steps needed to accommodate their lifestyles as their disease progresses. I see too many people who are in denial about their disease , and refuse to make the changes needed in order to make their lives easier. I think that attitude in itself adds more stress to their lives, which only worsens the disease.

I am planning on making a documentary about my life since my diagnosis as well as the lives of the five people I know who also have MS.

I wish the general population was better educated about MS. I hate having to explain the disease every time i tell someone new about it. Even some of my general doctors don't know the specifics. I hate having to explain my heat sensitivity to people who think I am making it up and being a primadonna. I even have to bring books to educate my friends who think I have a bladder infection because I use the ladies room so often. It makes things very frustrating having to deal with my own symptoms while educating everyone around me constantly.

well that was more of a rant than an update.

I hope everyone is enjoying a relief from the heat , I know I am :)

Be well.
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Postby Lyon » Fri Nov 21, 2008 3:13 pm

.
Last edited by Lyon on Sun Nov 27, 2011 12:05 pm, edited 1 time in total.
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Postby patientx » Fri Nov 21, 2008 8:01 pm

I second that. Thanks for the honest assessment. Please keep us updated.

You mentioned that your quality of life is better since the Campath treatment, despite the complications. Could you elaborate on that a little? Is it just a matter of not having to take the Rebif?

Take care.

Mike
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Thanks for your comments

Postby sugarmomma » Mon Nov 24, 2008 8:40 am

I am actually pretty happy with decision to try the Campath infusion already. However , with any treatment there are pro and cons.

My quality if life has improved in the following ways. I don't feel like I have the flu all the time, like I did with the interferons ( constant headaches, body aches, and nausea). My energy level is way higher, since recovering from the initial side effects of the Campath. I love not having to worry about weekly shots or traveling with my medication. My general cognition seems better ( memory, speech, comprehension). My eye sight feels less degenerative and I have less leg cramps.

However, my balance problems have not gotten any better, in fact at times it feels worse. And my numbness feels worse, as do my bladder problems. Also, there are days where I feel that I am walking funny, which I never noticed before the Campath.

Again , I think Campath is an excellent step up from the nasty interferons, which have been our only option so far; and I am ecstatic that people will have another option for slowing the progression, especially one that doesn't involve shooting up daily or weekly. However, I don't feel cured and doubt that I ever will. About a month ago CNN did a study that essentially called Campath the new miracle drug. I got emails from everyone I know referencing the email and suggesting I try and get on the medication. I had to write back to them and explain that I am on the Campath and while my good days out number my bad days, I still have bad days and I still live with the symptoms of MS.

I also got emails from people on this site who were newly diagnosed, and desperate to get this medicine, acting as though Campath would save them from MS.

Even though Campath has had great results for MS patients , it is still a serious treatment. It falls into the chemotherapy family and there are lots of risks and complications which can arise from the infusion. My heart rate dropped so low during the infusion , they were checking to see if I had a heart attack and it took months to recover from the infusion's side effects. I felt as if I had been poisoned for months. Now, I am extra sensitive and have bad reactions too all the therapies I have tried. Some people report only minor side effects from the Campath, so it all depends on your chemical make up.

I have a support group which consists of five woman my age, all in different stages of the disease. For the ones with more progressed MS, Campath is not an option. However we all feel excited about stem cell research.

I don't want it to come off as I am not grateful for Campath or that I am not promoting it. I feel blessed that I have had the opportunity to take advantage of this study and for me , it was 100% the right decision.

But again, I want to be realistic about my experiences and my opinion of the drug itself.

Thanks again for your comments and feedback!
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Postby bromley » Mon Nov 24, 2008 9:18 am

Sugar,

Sorry your experience with the Campath infusion was so bad - I was lucky in that I had no reaction at all.

The key thing is to remain patient. The main point of the drug is to stop the inflammation / relapses. No one said it was a cure - any repair is an added bonus.

I think you need to give it 18 months from your first infusion and then look back. I'm now two years' out from my first infusion and am thrilled with the results so far.

Here is a story about one of the recipients which featured in a UK newspaper. I can't say how typical it is, but it chimes with my own experience and others I have spoken to. The guy still has some MS issues which may never go away, but I'm guessing he's pleased with the results he has seen.

<shortened url>

All the best

Ian
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8 months post campath

Postby k6ristin » Mon Nov 24, 2008 9:59 am

As you may know, I received Campath alongside Sugarmomma in March. We have a good support group of 5 women w/ MS that I feel deserves special research of its own, like is there something in the water here in Tampa...but I digress.

The heading I almost posted on my own, before I saw sugarmomma's update, is similiar to another ms-er post "I Can Run!"

I still can't run, but this weekend my husband and I drove to the French Quarter and I was able to walk the entire length, from Canal street down to the flea market, and still enjoy shopping! It was a one way trip...Thank God for the streetcar.

2 weeks ago I was nervous on a trip to Miami, so nervous about walking that we brought a wheelchair. My pride wouldn't allow me to sit in the wheelchair so I hobbled around; it was hard.

So my point is there are good days and bad days.
I understand some people with MS reach a point where they are physically unable to walk at all, or at least a distance of 500 feet max.

I technically can walk unlimited, but after a certain amount of time it becomes extremely difficult and terribly funny looking, and actually dangerous as my foot stops cooperating altogether and I might fall at any time. but my neuro doesnt count this, she says as long as i can walk, it doesnt matter how ugly it is!

I felt like before campath I was nearing the point where soon I would be unable to walk period. But I think Campath has stopped that deterioration and as I learn my limitations, I can continue to be mobile.

I have a slew of other MS symptoms of course, but my focus and purpose to take the poisonous campath is to maintain my ability to walk! So, I'm not better but I'm not worse, and that's saying alot for a chronic debilitating nasty condition that is Multiple Sclerosis.

18 months is a long time to wait for the full effect, with the on going side effects of the poison, the ms symptoms that don't go away, the constant worry of any new symptom, if its temporary or new or the start of something terrible...and the constant doctors visits because its research, way too many blood draws and not enough MRI's...to see what's really happening in my brain. and no MRI of the spine, which is disappointing as I'm quite sure there's still activity there.
Sugarmomma has a point, there has been events where I know in the past I would have received steroids and labeled what I was feeling as a flare-up. But they are hesitant to call it that, I guess as to help the campath statistics.
But really, we know steroids don't really do much and can cause alot of damage.

I am worried about the upcoming infusion, the rashes, the onslaught of respiratory illness and generally feeling like crap.

To Bromley and the others who tried campath years ago: do you continue to receive campath annually, do you take CRAB drugs now, or no drugs? did your lymphocytes grow back?
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Postby raven » Sat Nov 29, 2008 12:04 pm

Hi Kristin

To answer your question I still take Gabapentin because it helps with the neuropathic pain that I still have. I stopped taking Rebif way before Campath (It had no beneficial effects for me) I doubt that anyone on the trials would still be taking any of the crabs it would skew the results.

Your lymphocyte count should return to near normal within about 6 months of treatment. AFIK my lymphocyte count is normal.

As you say there are good days and bad days. I found that with time the bad days became fewer and less severe. It used to be that if I had a bad nights sleep then the next day was hell. These days it doesn't matter and I can't really remember the last bad day.

Lets hope the same happens for you.

Regards

Robin
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Postby queenie » Sat Jul 04, 2009 11:02 pm

Thanks, everyone for all your honest input.
I had my first infusions the last week of April. I didn't have any side effects, except the rash, which wasn't bothersome, and went away pretty quickly.
I hope it is doing me some good...I do seem to have a little less fatigue - haven't nodded off at the wheel recently (oh, goody!).
I was on copaxone for 4 years, so didn't have the flu-like symptoms os an interferon, but I sure don't miss the nightly shooting up!
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Postby LR1234 » Tue Sep 22, 2009 11:02 am

HI Suga et al,
Just wondering how you are all doing now?

L
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Postby queenie » Mon Oct 05, 2009 8:16 pm

At almost 6 months, I am doing very well.
I no longer have the wierd neuropathic pain in my groin, but still take the cymbalta. I DID cut back from 80 mg to 60.
Yesterday I developed bad eye pain. I thought I scratched my cornea, but now I am wondering if I have optic neuritis?
Anyway, other than that, I think I am going terrific.
I don't miss my nightly copaxone shots, and feel like I am doing great.
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