almost a week after the last Campath infusion

sugarmomma · Post by **sugarmomma** » Thu Mar 27, 2008 5:27 am

well, I am not going to lie. The whole Campath experience was worse than I expected. By the fifth day, Kristin and I were just over the whole experience. In fact we were so done, that our nurse asked if we were mad at her. I eventually got the same rash as Kristin. Not as bad though. My major thing was my body was just unhappy. Bloated, poisoned, achy, rashy and mad. After we got out last infusion, we felt relieved but also afraid. Now we had to face the aftermath.

On my way home from the infusion center, I felt pretty good. I was starving and craving red meat. Normally I don't eat meat, only seafood, however I made an exception and got a well done ( yucky I like rare) hamburger. It felt good to eat, I also got a script filled for some vicodin. I was over trying to do this with no painkillers.

When I got home I felt social , so a girlfriend came over to keep me company, but only after a few minutes of her being here, I got tired. I napped for a while and woke up shortly before my boyfriend got home. I felt horrible. Every single muscle in my body hurt bad, my vision had turned to a complete blur, I felt some numbness, I was exhausted, my stomach hurt, I had the worst headache of my life, and I was still rashy.

I popped a pain pill and waited for relief. Which came about an hour later.
For the rest of the night I was okay. I went to sleep early and slept pretty much the whole night.

The next morning I felt okay and I took my dog to the vet. However by the time I got home, I was WIPED out and instantly fell asleep. When I woke up it was a repeat of the day before. All the same pain , except this time I was REALLY nauseous and shaky. I was also starving. I tried to eat but i kept throwing up. I finally managed to get some food down and take more pain pills. my body was so sore, that my boyfriend could not even rub my back. For the rest of the night, I kept my self on pain pills. It was the only thing that made it bearable.

Everytime the Vicodin started to wear off , the POUNDING headache came back. I had no energy at all, I sort of limped around the house. I cried a lot. The whole experience was emotional. I felt sick, isolated, unattractive, bored, scared and just plain miserable. I couldn't hold conversation and I could barely see, my eyesight had gotten so bad. That all I was starving all the time. I could not eat enough.

By Sunday I slowly started to feel better. I had more energy and felt semi-alive again. My rash had turned into painful, puss filled pimples all over my body. I could hold conversations and I switched to Tylenol for the headaches and the body aches. I felt like the worse was behind me.

Kirstin meanwhile had been dealing with her wicked rash. Her rash blew up all weekend. She had to be on constant benedryl. She was miserable too. She will have to update this with her exact symptoms because we didn't keep in contact all that much.

By Monday, most of my physical symptoms were subsiding. But the emotional ones were rearing their ugly head. I think I had serious roid rage mingled with depression and hopelessness. Everything annoyed me. I felt useless, angry, unmotivated, and confused. I accomplished a lot that day. I think I pushed myself too hard because I was feeling better. I did a lot of chores. But emotionally I was spent. I argued with my boyfriend for no reason. I cried and lashed out at people. It was not pretty.

Tuesday was basically a repeat of Monday, except I forced myself to take it slower. My physical symptoms were pretty much gone except for the never ending headache, blurry vision, and some leg cramping.

Wednesday was a much better day. I felt almost back to normal. My mood swings were getting better and I was able to feel hope about the future and some happiness. I finally felt the freedom from my shots, not only did I not have to shoot up, I didn't have to feel guilty about not shooting up. I started to feel more freedom in general. I am always living in fear of losing my health insurance because how would I pay for my meds? I don't have to worry about that now. I mean I want to keep minimal insurance so that i don't get a pre-existing clause.. but I don't need to worry that it has a good pharmacy program. I am covered.

My face is starting to clear up, I am starting to lose the steroid weight and focus back on healthy eating and light exercise. i am starting to feel like the experience is behind me and that I can start to live again and build a new future. I feel like hopefully I made the right decision and that the worse is over.

It's a tough decision to make, and the whole thing was not fun. It was harder and scarier than I imagined. However I knew I was not going to consistently stay on my interferons. They took away from my quality of life. Even if I did stay on them, they only have a small percentage of stopping my progression. The numbers that Campath presented me were overwhelming. It could go very wrong.. I could still have a major flare up, get graves disease, get ITP or have a major infection. I have to be seriously careful in every daily decision I make. But I either was going to give up and be a victim to my disease or I was going down fighting. I have always been a fighter. It's the flip of a coin. It could go either way, but a least it offered me a chance. A chance at a semi normal life for a longer period of time.

I hope people find this useful. We didn't get as much as a response as we hoped for, but maybe as the study expands, this will help people know what to face and make some decisions.

Thanks for reading.

Lyon · Post by **Lyon** » Thu Mar 27, 2008 6:37 am

flipflopper · Post by **flipflopper** » Fri Mar 28, 2008 9:35 am

Thanks for posting about your experience with this drug. I hope you will have none of the bad things that can be associated with Campath (like you mentioned; ITP, graves disease, infections etc...) and that it will keep your ms under control for a very long time!

Jamie · Post by **Jamie** » Tue Apr 01, 2008 9:34 am

Thank you for this.

I guarantee that hundreds of people read this and didn't comment.

You taking the time to do this will have helped a number of people in small to large ways.

mrhodes40 · Post by **mrhodes40** » Sat May 24, 2008 11:42 am

Yes thank yo so much for writing your experience
marie

robbie · Post by **robbie** » Sat May 24, 2008 12:11 pm

victim to my disease

well put marie i am one

Grumpster · Post by **Grumpster** » Tue Dec 09, 2008 12:43 pm

Wow, that sounds terrible. I has somehow missed this post. I am due to start the phase III trial for Campath shortly. Now I am more scared than ever. - Fudge

Lyon · Post by **Lyon** » Tue Dec 09, 2008 3:38 pm

patientx · Post by **patientx** » Tue Dec 09, 2008 5:15 pm

Wow, that sounds terrible. I has somehow missed this post. I am due to start the phase III trial for Campath shortly. Now I am more scared than ever. - Fudge

Grumpster:

As Bob indicated, there are no guarantees with any of these new treatments. But their are no guarantees with this stupid disease either (though there are some likelihoods). Some have had some bad experiences with Campath. But others, like Bromley and Raven have seen very good results. I wouldn't presume to tell you to take the treatment or not; but if you're at the stage of considering it, you probably need something pretty strong to stop progression.

I guess I'm trying to give you something of a pep talk if you're doubting your decision. For what it's worth, I wanted to get in the Campath trial after being newly diagnosed this past August. I had done my research, and read about the possible negative outcomes. Unfortunately, the trial centers near me were not doing the treatment-naive version of the study - just for those that failed on one of the CRABs. I am currently taking one of the CRABs, but if it doesn't work I'm going to try for the Campath again.

sugarmomma · Post by **sugarmomma** » Tue Dec 09, 2008 6:52 pm

Dear Grump,
The actual campath infusion was not fun as you can tell by my post, and while my main goal of joining this forum was to give an honest account of the experience, you have to read all of the posts to get real perspective of experience as a whole. Some people had no issues what so ever with the infusion. Kristin and I were the first people in our clinic to get the infusion. Our doctors learned with us. We all went into the experience with no idea of what to expect. I think after us, the doctors figured out new ways to make the infusion run more smoothly. Either way , I am going to allow the second infusion in a few months. That must say something. Also, let me point out, that while the infusion sucked ( I am not looking forward to the second one at all) the whole process of getting diagnosed was a million times more horrible than a campath infusion. If you survived that, this will pale in comparison. The best way to handle it is to plan ahead and make yourself as comfortable as possible. Bring head phones, pillows, snacks, or whatever will help you ( shoot I brought in a lamp). Go in with the most positive attitude that you can muster and during any unpleasant parts, zone out to a happy place. I have faith you will be fine and probably extremely happy that you did it in the long run!

Good luck, and keep your chin up!

Grumpster · Post by **Grumpster** » Wed Dec 10, 2008 1:26 pm

As Bob said -In a lot of ways this is a "no guts no glory/no pain, no gain" decision. Is that where you're at mentally?

This is where I am mentally. I am going for it. Thanks to all those who post for the support. Hopefully I'll start SOON.

patientx · Post by **patientx** » Wed Dec 10, 2008 5:56 pm

Please let us know how it goes.

freiguy · Post by **freiguy** » Wed Dec 10, 2008 7:07 pm

Grumpster,
I know this is a huge decision for you. I have just hit five months since my first campath round. My blood work is almost back to normal levels and I am feeling really good. As I have told you before the first couple weeks weren't the best but I think the key is to make sure your affairs are in order so you can try to relax as much as possible and not have to deal with too much stress after the week of infusions. My doctor definitely has the campath infusions down to a science and this really helped everything go well for me.

Grumpster · Post by **Grumpster** » Sat Dec 20, 2008 4:28 pm

Thanks for the tip and the ray of hope. Best of luck to you and Merry Christmas!! I think my Campath journey will start within the next 60 days.

Grumpster · Post by **Grumpster** » Sat Dec 20, 2008 4:30 pm

Oh yes, Best of luck with round #2 sugarmomma. Thanks for the post! I am gaining back my optomism about the trial!!