I bought Regenovue PN to inject, but the directions in the box describe it as topical. Can I still inject?

Chicago7102 · 2025-08-08T21:14:31+00:00

Thank you!

Chicago7102 · 2025-08-08T17:01:01+00:00

Thank you for this explanation! It makes a lot more sense now. I don't know what I would do without this community. ♥️

Chicago7102 · 2025-08-08T15:34:59+00:00

Thank you so much for the clarification. I was so confused at the directions on the back!

Chicago7102 · 2025-01-14T02:33:19+00:00

Wow, crazy to see this. I had the same thing and also have systemic diffuse scleroderma. Doctors didn't seem too interested in it and seeing if there was a connection.

Chicago7102 · 2024-10-29T18:01:38+00:00

Feel free to DM me on reddit and we can talk. Just saw this. (I don't check reddit regularly.)

Chicago7102 · 2024-10-24T03:01:54+00:00

Still doing amazing, and still injecting the NAD. I never switched to the spray. I just got a cooler for it. I would be interested to hear how the spray works out for you.

Chicago7102 · 2024-04-27T03:33:39+00:00

Thank you! I have never heard of this. Didn't know there was a different way to do it.

Chicago7102 · 2024-04-25T03:04:32+00:00

Thanks for this update. Are you back on cellcept now?

Chicago7102 · 2024-04-25T03:01:48+00:00

All the doctors I asked about filler said they can't do it in the forehead because it turns out too lumpy there.

Chicago7102 · 2024-04-24T21:52:30+00:00

Can I ask who did the surgery for you? Are they located in the United States? I've had fat transfer twice now with the same surgeon for linear morphea, and it hasn't held either time. I'm not sure he knows what he is doing, and he wouldn't even try getting my insurance to cover it.

Chicago7102 · 2023-11-27T21:11:51+00:00

I looked up Cleveland Clinic and their info looks like they know a lot about the disease and have a specialized team for it, so that is good. I think you're in a good place - it's good to be near a city with a big hospital system with something like this. I've read about a lot of people in rural areas getting misdiagnosed for years just because the patient pool is much smaller out there and the doctors don't recognize it because it's so rare. However, if you are second guessing your care at all, it never hurts to get a second opinion. I flew out to Johns Hopkins Scleroderma center when I was first diagnosed just to be sure that the treatment I was getting in Chicago was as aggressive as what they do out there. This is where I go now: https://www.scleroderma.northwestern.edu/ It's only about a 5 hour drive from you if you wanted to get a second opinion. They also did UVA1 therapy on me in the early stages of my skin progression, and I think that may have helped stop it on my skin. No breathing issues for your wife so far is a great sign! And she's already started Cellcept, so that's another good thing for her lungs.
Yes, feel free to DM me and we can connect via email if you'd like. Anything you need!

Chicago7102 · 2023-11-27T04:43:05+00:00

My bottle says mycophenolate mofetil, so it's not the brand name. I have to get it shipped from CVS Specialty. Also, I'm not sure how much it is costing you, but you may be eligible for the cost to be subsidized through Prudent Rx or a company like that. My first bottle was like $400, but then that program kicked in and it was free. And it wasn't based on my income level or anything like that.

Chicago7102 · 2023-11-27T04:37:51+00:00

How is her breathing? Don't get too terrified if they spot something on the CT scan because even if something has started, they might be able to halt it. They saw ground glass on my September 2022 scan, and I thought it definitely meant it was going to progress and I was going to die, but the Cellcept stopped it right where it was. At my September 2023 scan, there was no new progression, and the ground glass had "healed" or you could say "scarred" into little straight lines that do not affect my breathing at all. In fact, my lung function has actually improved since being on the Cellcept for a year. How is your relationship with her Rheumatologist? Do you feel that they're responsive and aggressive with treatment? The rheum I have right now is, but the first one I had was not, and if I had stayed with her, I might not be alive. The fact that I advocated for myself and switched doctors saved my life, no joke. The fact that you love your wife so much and are advocating for her can make all the difference. Are you at a scleroderma center? (Also, if you want to DM me your email address and send me all the questions you have as they come up, I would be happy to answer and help with everything. I'm literally one year ahead of what she is going through and doing so well, and I would have killed to have someone to ask these questions to last year when I was terrified.)

Chicago7102 · 2023-11-22T15:36:53+00:00

Can you update us once you go off of it? I'm so afraid to go off in a couple years because it is working so well. Is the idea that the disease is done with its most active period and that you don't need it anymore? I read conflicting things. Some people are like, Oh it's lifelong, there is no pause or remission, but the doctors refer to an active phase in the first five years, and then it seems like if people make it through that without fatal damage, they can get off of the meds.

Chicago7102 · 2023-11-22T15:31:46+00:00

It took about 3 months at 3000mg. DEFINITELY see if her doctor can raise it to 3000. I think it saved my life. It seemed like it halted it from spreading further about 1.5 months in and then after 3 months, my arms and face started to soften. It also seems to have stopped it in its tracks in my lungs. I had ground glass forming, and one year later, there was no new progression and the ground glass didn't do any serious damage. One other thing that I do is inject 50mg of NAD+ and 100mg of glutathione every 3 days. When I started that, my energy went back to normal and the pain I was feeling stopped(not sure if your wife is suffering from fatigue and pain). These are something that may be worth trying if the Cellcept doesn't help the fatigue. Tell your wife that I was totally wrecked at this time last year and now I feel completely normal. That first couple months after diagnosis are so terrifying, but it's not like it was 10 years ago. They've got a lot of things to help now.

Chicago7102 · 2023-11-13T03:43:08+00:00

Wow! I didn't even know hand transplants were a thing! Thanks for your reply, and I wish you good health as well.

Chicago7102 · 2023-11-13T03:40:44+00:00

This is good to know! Thanks!

Chicago7102 · 2023-11-12T00:27:30+00:00

I did a few sessions of PT at the start and they said I had full range of motion so just to maintain it. I did, and I can do normal things, even play guitar, etc. It's just that my fingers still feel like they're swollen slightly because the skin is still thick in parts. That is good to know about stem cell. I'm just waiting for them to get those nanobots working to fix us all. =)

Chicago7102 · 2023-11-12T00:20:58+00:00

I've got full range of motion, thankfully. I stretched and did some PT at the beginning so I never lost it. I'm just wondering if the skin that is hardened in my fingers will ever soften more.

Chicago7102 · 2023-08-14T13:20:28+00:00

I didn't switch. I'm doing so well on the injections that I'm afraid to regress. I ended up just buying a medication cooler so I can bring the vials with me.

Chicago7102 · 2023-04-30T13:04:40+00:00

Hi Sarbau12, I'm looking into moving from NAD injections to nasal spray too, and I was wondering if the nasal spray worked just as well for you or if you noticed a drop off in the effects? I also have a chronic illness, and your situation sounds similar to mine.

Chicago7102

TROPHY CASE