First Cidofovir Infusion Done!

[Tristen]

Hey Hip, I had severe OI, with NMH and POTS for 5 years before the Tx. I was unable to stay in an upright position for more than a few minutes at a time without severe worsening of those symptoms. There is no doubt that it was the Cidofavir Tx. that eliminated the OI. I'm not sure why that particular symptom had resolved, but it seems to me that we had hit a CNS infection that was causing much of my symptoms.

I have no idea if that particular symptom was resolved for others on that Tx. I didn't inquire on those particulars with others, or with the doc. I only know that many got better. I think the most common response are those like myself....partial responders.

 

[Hip]

@Hip, the antivirals definitely influenced my OI as well. I was on Florinef when I started cidofovir and I was able to successfully wean that med without a return of my OI until my crash in August. At that point, the OI was back again until I started Valcyte and then it went away again for the most part.

Hey Hip, I had severe OI, with NMH and POTS for 5 years before the Tx. I was unable to stay in an upright position for more than a few minutes at a time without severe worsening of those symptoms. There is no doubt that it was the Cidofavir Tx. that eliminated the OI. I'm not sure why that particular symptom had resolved, but it seems to me that we had hit a CNS infection that was causing much of my symptoms..

@Tristen, did cidofovir actually cure your OI permanently? That seems quite amazing. By the way, I take it you mean to say Rx (= a medical prescription), rather than Tx.

This is all very interesting. I wonder how many other patients have seen improvements or cures in their OI with antivirals?

If you look at some of the standard recommended medications for say POTS, none of these includes antivirals, yet from your experiences, these antivirals work well. And the antivirals probably treat the root of the OI disease, rather than just treat the symptoms.

 

[apogan]

Ema. So sorry to hear about your overall results. You did NOT fail. You took on a challenge head on and saw it through. You have been failed by the lack of research on our disease. Not by Dr. Lerner, at least he is trying things. Give yourself a HUGE pat on the back. I admire your strength Ema. Thank you for sharing your journey and providing valuable insight.

 

[Ema]

Ema. So sorry to hear about your overall results. You did NOT fail. You took on a challenge head on and saw it through. You have been failed by the lack of research on our disease. Not by Dr. Lerner, at least he is trying things. Give yourself a HUGE pat on the back. I admire your strength Ema. Thank you for sharing your journey and providing valuable insight.

I looked in on you on Monday...but you had your eyes closed and I didn't want to wake you...I hope it went smoothly?

 

[apogan]

@Ema
So sorry I missed you, I definitely slept a lot that day. I tried to peep in a few rooms around me but did not see you. I went solo and everything went fine, but was wiped out the next day, and had to drive home. Won't do that again. I am going to leave you some contact info on your profile page so we can keep in touch.

 

[Tristen]

@Tristen, did cidofovir actually cure your OI permanently? That seems quite amazing. By the way, I take it you mean to say Rx (= a medical prescription), rather than Tx.

This is all very interesting. I wonder how many other patients have seen improvements or cures in their OI with antivirals?

If you look at some of the standard recommended medications for say POTS, none of these includes antivirals, yet from your experiences, these antivirals work well. And the antivirals probably treat the root of the OI disease, rather than just treat the symptoms.

Can't say permanently, but I'm 4 years post Tx now, and have not relapsed.....still no OI.

Yes Rx = Meds, and Tx = Treatment.

Right, the Cidofavir must have hit the root cause of my OI, rather than just Tx symptoms. I've done all those other treatments for OI, POTS, and they just didn't work for me.

 

[Ema]

So my treatment with Dr L is on "pause" indefinitely.

Too much time and expense to travel for oral AVs which my LLMD has kindly agreed to continue for me.

Hope this is the right decision but I don't see people trying many other options in that office that make the trip seem worthwhile.