Diagnosed

[Marieb425]

Hi Jam, I’m sorry to hear of this news. When we were doing a 2nd opinion we encountered a Dr. who was similar to the one you saw (very direct, not very empathetic, etc) and so we decided to go with the other Dr. who we found was kind.

My husband was diagnosed at age 40 and just turned 42. I think he’s fast progressing, but he was on all 3 R’s and we haven’t experienced any slowdown. He was on Relyvrio from the time it was approved until the news came out about the failed study and we stopped it. We just stopped Radicava ORS as I gently told him that it might be time to stop it. Perhaps it does help some people though so I feel like it’s worth trying anything .

We tried it all and I guess this is just what it was for us, but all we can do is keep on going and I’m thankful for every day/week/month we all have together.

Best,

Marie

 

[JAM]

Currently we are still wading through the shock. I believe we will be willing to try anything and travel and stay wherever if necessary. I have to write all these down to discuss with the Dr. Our next visit is 10/16 to meet with everyone on the clinic team I guess. It’s all new to us and so much of what he was telling us was lost bc we could not even focus at the time. I do appreciate your patience and help.

 

[Marieb425]

Jam, I understand. It took me awhile to move through the stages of understanding it, past denial (wondering if it could be something else), through anticipatory grief, etc. Be kind to yourself. We have two little kids so we didn’t consider traveling to other clinics, but if you are able to do that I would definitely keep that in mind. I will be thinking of you and your husband and hoping for slow progression.

 

[JAM]

Ahl, how did you decide ibudalist over mastnib ( I believe an earlier post you mentioned her dr thought mastnib was the more promising of the 2). Thanks again!

 

[Barbara Pratt]

Our diagnosis was also fairly heartless...We were told to "get your affairs in order." That was it...until we met the Nurse Practitioner at the next visit. She is wonderful.

 

[MarineGuy]

Is the Ibudilast drug helping at all, or is it still to early to tell?

___________
The current COMBAT-ALS trial for this drug have study dose of 100mg twice a day. 50mg in the morning and 50mg in the evening.

For what it's worth we got the drug and my mother is taking 60 mg, 30mg twice a day. The cost is 750 dollars for 2 months worth.

 

[ahl39]

Seems to work for my mother. Started in June. Only lost 1 ALSFSR score so far in 3 month. Whereas she lost 7 points between December and May. But n=1 and als normally plateau.

I do believe that it does work for at least some people. And when it work, it works very very well!

If you listen to the most recent presentation by Dr. Bedlack and Dr. Li on IAmALS, they presented one patient on the phase 3 COMBAT-ALS trial (that they suspect is on drug) who had normal decline prior to start of trial, had ZERO progression in the 18 month when he was on trial, but then immediately started declining again the month after the trial ends. I mean that is again a sample of 1 but just too much of a coincidence.

But for most people apparently it doesn't do anything.

In any case Medicinova will present some more data in late October. Probably just side effect stuff since they are still early in their phase 3.

 

[JAM]

Marine Guy,
Does it seem to be helping your mom? I am sorry you/her are going through this. I know for myself this forum is a lifeline I hope you find it helpful as well.

 

[santimo]

I'm sorry about the diagnosis, I had bad experiences with neurologists before final diagnosis, but ver good experiences with the ALS specialists That confirmed the final diagnosis and tested me. My current doctor is definitely on the hopeful side, sometimes I would like a more pragmatic approach, but Im still happy with him.

 

[Landis02]

I think the patient that Dr Bedlack is referring to is my PALS. He started Ibudilast several months after being diagnosed. At the beginning of the trial, we don’t know if he was on drug or placebo, but he did switch to the drug for the last 6 months of the trial. Within a month of ending the trial, he had rapid progression (developed pulmonary blood clots, weakness). He was able to get back on the drug a few months later and is still on it. It may have helped in his first 2 years, but not any longer. He had no side effects with it so it’s worth trying.

Lee

 

[JAM]

Lee,
Do they think if he had stayed on it consistently it may have had continued success? I hope he is staying strong- and you as well.

 

[Landis02]

Just no way of knowing. But probably so. I don’t think it’s working for him now but Dr Bedlack wants to keep him on it, just in case it’s helping. It surely isn’t hurting him, so why not.

 

[LauraAnd]

I’m in Combat trial through Mayo Clinic November will be a year at that point will get “real drug”. Not sure first year if you’re on placebo or not. My ALSFRS-R score dropped one point since beginning. My symptoms started lower limb right foot drop. Left leg has been affected a little too. Using cane and rollator. Will keep you all posted as trial progresses!

 

[JAM]

Thank you Laura, that is very much appreciated. Sending prayers and thoughts your way for positive outcome in November & going forward.

 

[Marieb425]

Laura - only dropping 1 point in a year sounds promising!