My Rituximab experience with RA and ME

[optimist]

@deleder2k Ok, so in my case where I am able to go out and see friends, and take a walk once in a while, it could perhaps be enough with one infusion then?

 

[Nielk]

Nielk

Have you ever had your human growth hormone level checked?

Low levels can make your bones, muscles,ligaments and joints deteriorate prematurely...

I never had my hgh tested. I would assume though that it is pretty low due to my poor sleep?

 

[Hanna]

@deleder2k Thanks for the answer! Do you, or anyone else, know if it is possible to get infusions in Norway if you pay for it yourself?

@optimist, there are still some hospitals in France, where internal medecine departments will agree to do infusions -after several days of examinations- when they see that off-label use of Ritux may present some interest for a patient.
I was nearly scheduled for that two years ago.

 

[Tired of being sick]

I never had my hgh tested. I would assume though that it is pretty low due to my poor sleep?

Pretty much

Slow wave sleep is essential for release of growth hormone through pituitary gland..

If you wake up everyday feeling worse than before you went to sleep the night before,i would make an appointment with a endocrinologist ASAP...

 

[ukxmrv]

How about any country in Europe?

This is not a recommendation as I have no experience but you could try contact@bgli.nl as they may have the contact details for a German doctor who was going to offer Rituximab and other treatments,

 

[deleder2k]

@deleder2k Ok, so in my case where I am able to go out and see friends, and take a walk once in a while, it could perhaps be enough with one infusion then?

No, I was referring to whether or not you'd have to live in the States to receive Rituximab treatment.

 

[Blue]

I am afraid you won't find a doctor in Germany anymore doing off label infusions with Rituximab. There has been media coverage about one patient getting worse after off label RTX and since then I haven't heard of anybody being able to get it here.

 

[alex3619]

It depends on your health situation, but you don't necessarily have to move there. If you receive 1 infusion the 1st day, then the 14th, and then after 3, 6, 9 months. It will cost a lot though. The patent is expired in Europe, so can just pray that the the competitors are ready to launch their version of Rituximab soon.

The problem is that Rituximab is a biological pharmaceutical. Its not a drug. Its an antibody product. Competitors can sell something similar, but it wont be the same. This may cause issues at all levels, including coverage by insurance companies.

 

[Nielk]

It is one week since my first infusion. I have been regressing with my RA symptoms and I think I understand why. In preparation of starting Rituxan, I had to discontinue Humira (RA med) two weeks prior. Even though I was not feeling better on the Humira, my rheumatologist felt that it was helping in stopping the progression of the disease. Now, I think she has been proven right. The Rituximab and the Methotrexate which I started on a week ago have not kicked in yet, which explains my worsening of symptoms.

The pain in my hands and especially my feet have progressed. When I try to walk, my right foot becomes pretty painful. I really hope that this is just temporary. In either case, this is not part of my ME. so it should not affect ME patients.

I am not feeling any progress from any of my symptoms whether RA or ME and it is not expected yet at this point.

 

[Kati]

Fingers crossed for you @Nielk

 

[Snow Leopard]

I wish you the best of luck Neilk.

 

[deleder2k]

The problem is that Rituximab is a biological pharmaceutical. Its not a drug. Its an antibody product. Competitors can sell something similar, but it wont be the same. This may cause issues at all levels, including coverage by insurance companies.

Hm... It is called a bio similar, but I guess that means they are not exact the same thing. But if it is a anti CD20-depleter it should work in the same way? Or almost the same way...? Anyway, with competitors on the market, the price of Rituximab will eventually fall.

 

[alex3619]

I think it would work the same, but it might not be approved the same by authorities, insurance etc.

 

[deleder2k]

If the price falls by 50-70%, and we know for sure that it works on 70% I think many would pay out of their own pocket.

 

[Tristen]

It is one week since my first infusion. I have been regressing with my RA symptoms and I think I understand why. In preparation of starting Rituxan, I had to discontinue Humira (RA med) two weeks prior. Even though I was not feeling better on the Humira, my rheumatologist felt that it was helping in stopping the progression of the disease. Now, I think she has been proven right. The Rituximab and the Methotrexate which I started on a week ago have not kicked in yet, which explains my worsening of symptoms.

The pain in my hands and especially my feet have progressed. When I try to walk, my right foot becomes pretty painful. I really hope that this is just temporary. In either case, this is not part of my ME. so it should not affect ME patients.

I am not feeling any progress from any of my symptoms whether RA or ME and it is not expected yet at this point.

I think your right on there.....MTX takes several weeks to reach maximal effect. I would anticipate relief in that respect. Glad your tolerating the drugs well enough to continue...... Hoping to witness you making huge strides getting better. I feel you have a good shot at it.

 

[Nielk]

Thank you. I really appreciate everyone's support here.

 

[Nielk]

I am writing this while rituximab is running through my veins. So far, everything is going well. I have no allergic reactions this time.

Interestingly, I am feeling much better today, as opposed to yesterday. Yesterday I had one of my famous unbearable headaches. I couldn't get out of bed. I was pleasantly surprised this morning that the headache has eased off.

As the IV started running, they gave me the pre-med of medrol. I'm not sure if it's because of that or just the saline solution which they run for a half hour before the Rituximab but I'm felling better than usual.

 

[NK17]

Fingers double crossed for you Nielk .

 

[Nielk]

I spoke too soon. (Of course )

As I was finishing up, I started coughing again. I guess the Benadryl was wearing off.

They told me to take more Benadryl when I get home and watch it carefully.

I'm in my bed ) thank God!).

I'm sure I'll be fine. I do t think they would have allowed me to leave if they were worried.

 

[NK17]

I spoke too soon. (Of course )

As I was finishing up, I started coughing again. I guess the Benadryl was wearing off.

They told me to take more Benadryl when I get home and watch it carefully.

I'm in my bed ) thank God!).

I'm sure I'll be fine. I do t think they would have allowed me to leave if they were worried.

I hope you have someone to assist you at home and plenty of Benadryl Nielk!

I also wish you a smooth post 2nd infusion ride.

Next time the nurse should not 'skimp' on the antihistaminic , although it might not have been the case this time.

You're strong and brave and deserve the best of the best out of this mAb treatment!