First Visit at ALS Clinic Tomorrow

[ChesterB]

I will be traveling to the ALS Clinic at Wake Forest Baptist Medical Center tomorrow. I have appointments with a physical therapist, occupational therapist, and my doctor. I am considering whether or not to begin Radicava therapy. I'm very concerned about the out-of-pocket cost (I'm on Medicare & have Part D coverage). Does anyone have any advice?

 

[Nikki J]

Radicava cost? It will be part B not D. Do you have a decent supplement?

for clinic have a read here Resource - Second opinions and first clinic visits

generally take someone to take notes. Make a list tonight of what you want to ask. Collect contact info for everyone and find out who to contact for what and how. My first contact is almost always my nurse by email but that is my clinic. Start a folder

take a sweater it might be drafty. Fluids and snacks. Apparently some clinics provide them but others don’t. Mine doesn’t. Better take them in case

good luck

 

[ChesterB]

See, I have so much too learn!!! My first impression was that the cost was split between Part B and D. I do have decent coverage for both.

 

[Kristina1]

Nikki's advice is spot on.

As to Radicava, my personal opinion is it's worth a try if your insurance covers it and you can manage the treatment burden. But I don't think it's worth breaking the bank for, or enduring a really high treatment burden (for example, if you had to travel to an infusion center). I did 6 cycles of Radicava and then quit.

 

[Elizabethcgrey]

Nikki's advice is spot on.

As to Radicava, my personal opinion is it's worth a try if your insurance covers it and you can manage the treatment burden. But I don't think it's worth breaking the bank for, or enduring a really high treatment burden (for example, if you had to travel to an infusion center). I did 6 cycles of Radicava and then quit.

Hi why did you quit taking Radicava? Was it because it’s a pain to get there , I am newly diagnosed and they want me to go on it thank you

 

[Kristina1]

Hi Elizabeth! I have heard some people say they felt Radicava was really helping them and others say they felt it wasn't helping. The research seems to show that it helps a subset of patients but not all patients. I started Radicava because my insurance fully covered it at no cost to me, and because I was approved for home infusion so it would be in the comfort of my own home. However while I was on it I had bad migraines (a known side effect in some patients) and my progression actually sped up, whether by coincidence or related to the radicava I don't know. Between it all, after 6 cycles I gave up and quit. I felt better all around after quitting. But again, this is just my experience. Someone else will have had a positive experience. Everyone's different.

 

[Nanders]

I just started Riluzole and am going to be starting Radacava next month on home infusion. I had mixed feelings about taking both of these meds as well..(just diagnosed a week ago) My dr encouraged me to try them as everyone has different results & side affects are generally minimal. So I thought why not? It’s all a lot to take in, so much info, decisions and changes ( I have a fairly rapid progression) happening at once. I’m so grateful for all of my new online family/friends & support as well as my home support.
Totally agree on the note taker... my best friend has gone to my dr/clinic visits and written everything down.
Its one day at a time for sure!
We’re here for you.. let us know how the visit goes!

 

[Clearwater AL]

ChesterB, I go to the Wake Forest ALS Clinic.

Be sure and tell us how it went and what you think. Hope they are still serving a lunch. .

These days my favorite saying is.... "Nothing stays the same". Hope it went well.

(They may also do Pulmonary (breathing) too. )

 

[Clearwater AL]

ChesterB, I see earlier you were on the site but you didn't comment to your Thread.
I saw at the bottom of your avatar the little symbol showed you were on
.
I hope all went well at Wake Forest. When you do get a chance.... let us know.

 

[ChesterB]

ChesterB, I see earlier you were on the site but you didn't comment to your Thread.
I saw at the bottom of your avatar the little symbol showed you were on
.
I hope all went well at Wake Forest. When you do get a chance.... let us know.

I had a great visit there and met the staff who are all so friendly and helpful. They served a catered Thanksgiving meal this time, and it was very good. I am a candidate for the clinical trial of the oral version of Radicava, but some contractual problems are holding things up. Also, my part D insurance provider is refusing to cover the IV Radicava. The hospital and doctor are working on that as well.

 

[Nikki J]

Happy to hear clinic went well!

i didn’t know the oral edaravone trial was coming to the US. if it becomes an option it will be a lot easier for people.
i gather you are trying for home infusion if part d is being discussed for radicava? Infusion center isn’t an option?

 

[Nikki J]

I looked at part d plans for my zip code. I couldn’t even input radicava or edaravone nor were those names listed in the browse lists. Did they say they had people getting radicava through part d there? I really thought it was only part B

 

[KarenNWendyn]

Also, my part D insurance provider is refusing to cover the IV Radicava

IV Radicava would be through Part B because it is infusion therapy.
Oral Radicava (when available) would be through Part D.

 

[lgelb]

There is a center locator here [as Nikki points out below, not complete; also Google infusion centers, check your plan's network list]. Centers can tell you what plans they are in-network with and how authorization works.

 

[Nikki J]

That doesn’t work properly for me Laurie. I put in my zip and although the home care looked correct the infusion centers are not. There are 3 I know of that do neurologic infusions ( they are not just oncology) in under 5 miles from me yet they gave me as closest one 17 miles away. They did not even show MGH. It may work better in some areas but I would not look at it and give up on finding something closer than shown