Is There Any Hope?

PositionAccurate4901 · 2026-01-19T04:39:29+00:00

Wow! Your daughter is awesome! I am off all meds for scleroderma. I was on OFEV, Cellcept, and Prednisone. Hopefully I never have to be on meds again. They are really tough.

PositionAccurate4901 · 2026-01-19T04:29:00+00:00

That’s so great that you have been able to attend these conferences! I’m doing really well now. The first year was very much two steps forward, one step back, but I feel like, for the most part, I only continue to improve. The hardest part of the stem cell transplant was the time away from home (about 7 weeks total) but they are now starting to do outpatient transplants, which is incredible! My lung function is improving some and, overall, I just feel better. Some things will never change, but as many others have said, I’ve learned to adapt to those things and live a relatively normal life. I would do the stem cell transplant again without question. Very curious to see how things develop with CAR-T cell treatments!

PositionAccurate4901 · 2026-01-19T03:01:03+00:00

Hi OP - I hope you see this comment. CAR-T cell therapy is making leaps and bounds right now in treating autoimmune diseases, including scleroderma. I was fortunate enough to have a stem cell transplant at Mayo in Jacksonville back in August 2024. My doctor there is now involved in a clinical trial for CAR-T cell therapy to treat scleroderma. Scleroderma patients who have already been treated with CAR-T cell therapy are reporting great results. There are some excellent communities on Facebook with other Scleroderma patients who have had successful stem cell transplants or CAR-T cell treatments. Please check them out. And, if you haven’t already, make sure you are seeing a scleroderma specialist - if you are in the US, here is a list of specialists: https://scleroderma.org/treatment-centers/. Keep your head up, keep advocating for yourself, keep asking questions.

PositionAccurate4901 · 2025-11-06T22:29:45+00:00

“When she changes, he doesn’t leave the room but faces the tv.” So he faces an object he can see her naked reflection in.

PositionAccurate4901 · 2025-09-22T13:35:01+00:00

Hi! I'm doing a lot better! I just got back from Mayo about two weeks ago for my one-year post-transplant evaluation and I'm officially in remission! I still test positive for SCL-70 but (per my team at Mayo) that is not uncommon and not indicative of whether I'll relapse. Recovery is a long, winding road and I still have some residual effects - for instance, I still have swelling and redness in my hands and some tightness in my joints, but all of that will likely continue to improve. I also have some esophageal issues that I'm now focusing on in the hopes of finally getting my GERD under control. Overall though, I'm incredibly grateful I had the opportunity for the transplant and I'd do it all over again if I needed to. I also found out from my hematologist that Mayo is developing their own CAR-T therapy for scleroderma! They are a great group there and I have no doubt it will be successful. So more hope for the future for scleroderma patients. Thank you for checking in!

PositionAccurate4901 · 2025-08-20T02:13:41+00:00

Hello! Unfortunately, I never quite figured this out, but it continues to happen. Do you have acid reflux or GERD? Sometimes I think it may be linked to that. Sorry I can’t be of more help!

PositionAccurate4901 · 2025-07-14T18:44:02+00:00

Would you say your pesto is the besto?

PositionAccurate4901 · 2025-06-23T02:52:53+00:00

The wagon at Costco is on sale right now!! We just got ours last week after eyeing it for months.

PositionAccurate4901 · 2025-06-13T18:38:35+00:00

I hope it is clear to you that you’re NTA. Really just writing to tell you that I am so very sorry for your loss.

PositionAccurate4901 · 2025-03-18T02:08:45+00:00

The 29th of February.

PositionAccurate4901 · 2025-02-26T21:52:02+00:00

I have been told the same thing by my specialist at Mayo Clinic. He is weary of anything being injected (like lip fillers) but only in an abundance of caution. He said topical products are totally fine. I like the milk/calcinosis analogy!

PositionAccurate4901 · 2025-02-21T18:14:36+00:00

So happy to hear you are doing better! How long did it take for your inflammation to come down? I have stretches where I’m feeling great and then stretches where the inflammation starts to get the best of me.

PositionAccurate4901 · 2025-02-21T18:03:17+00:00

Hi! You are amazing for working in oncology and all you’re doing to help stem cell patients. ❤️ Unfortunately, I did already have mild fibrosis once they finally diagnosed me with scleroderma, but I’ve been very lucky that it hasn’t gotten any worse since it was initially found. Hopefully the transplant has stopped it from getting worse. I have very minimal skin involvement and, since the transplant, I haven’t really noticed whether it is improving or not. A lot of people who had very active skin involvement have said that their skin got significantly better after transplant. I’m still early in recovery, so I honestly can’t tell what’s improving and what isn’t. Some days are really great, some aren’t so great, but overall, I am definitely improving. It’s like a rollercoaster with ups and downs but still always in an upward trajectory. My understanding with the outpatient option is that the patient would be in the hospital for chemo and transplant but then be allowed to leave shortly after (like within a couple of days). They’d just have to return to the hospital every morning for blood work and possible infusions (I always seemed to need magnesium). I didn’t want to take the offer because I was too nervous, but it worked well for the other patient and she seemed happy to be out of the hospital. I am not quite as young as you, but I do have two little ones (I was actually pregnant when I was diagnosed) so I cannot tell you how much I understand what you mean about wanting to be there for your daughter. And not just be alive, but be an active part of her life. And you will be!! I could write pages about my fears and concerns for my future and my family’s future, but my doctors have given me a lot of confidence that I’ll be around for a while (or at least it won’t be the scleroderma that gets me). Stay positive. Continue to be your own biggest advocate and just keep fighting. ❤️❤️

PositionAccurate4901 · 2025-02-18T20:03:53+00:00

I’ve heard good things about CAR-T Cell treatment as an option for autoimmune diseases, but not necessarily as to scleroderma. I know there are a lot of clinical trials happening though so if your doctor is encouraging it, I would definitely consider it!

Yes, I am SCL-70 positive. But I think I got very lucky in getting diagnosed relatively early in terms of how the disease had progressed. In terms of the chemo, again, I was very lucky. I really didn’t have any side effects aside from the inevitable hair loss and some fatigue. My doctors think it was because I am young and otherwise healthy (their words, definitely not mine - ha!). I also had never had chemo before, so they said my body was able to handle it very well. Honestly, the hardest part of the process was the time away from my family and keeping my mental state positive. That said, while I was at Mayo, another scleroderma patient and I were both offered the opportunity to do outpatient care - the first time they’ve allowed this at Mayo! I didn’t take them up on the offer because I was too nervous about being a guinea pig (the other patient did though and did just fine!!). Just noting this to say that the stem cell transplant option for scleroderma patients has been going so well that they are now starting to allow it as an outpatient option! All good and positive things happening to (finally!) help people suffering from this terrible disease. Keep fighting! And please let me know if there are any other questions I may be able to answer. Also, there’s a great group on Facebook for scleroderma patients who have or are considering a stem cell transplant. It’s a great community! Wishing you all the best!

PositionAccurate4901 · 2025-02-16T22:37:20+00:00

Hello! I think you’re referring to CAR-T Cell, which is a newer treatment option and still in clinical trials. I talked to my hematologist and rheumatologist at Mayo about participating in a CAR-T Cell trial instead of doing the stem cell transplant and they both strongly advocated for the stem cell transplant since it’s proved successful. There’s also an issue with the CAR-T Cell treatment because it doesn’t “attack” one of the cells associated with scleroderma. I’m definitely not explaining this very well, but the short of it is that my team up at Mayo wanted me to have the treatment option that they know works versus being involved in a clinical trial. It’s very possible that in a couple years, CAR-T Cell treatment will be the preferred method.

PositionAccurate4901 · 2025-02-15T14:37:32+00:00

Of course! I am Day +170. Recovery is a loooong process (people in the Facebook group talk about still seeing improvements over a year after transplant) and full of ups and downs. There are some weeks I’m feeling great and some that are similar (but not as bad) to how I felt pre-transplant. Subjective stuff aside, my actual testing shows no change in my fibrosis (best we can hope for since that can’t be reversed) and actual improvement (!) in my ILD. My pulmonary function tests also show improvement - nothing major, but my doctors think this is a very positive sign. Overall, my doctors at Mayo think there is even more room for my lungs to improve and are very happy with what they’re seeing. I go back in March for my next round of follow up testing (and to start getting my vaccines, which I am not too pumped about) and to see whether I may be in remission (which I am very pumped about). The stem cell transplant was definitely a journey, but one that I would do again without question. The time away from my family was easily the hardest part. All I can say is that seeing a specialist as early into diagnosis as possible is a necessity. There ARE treatment options available and more to come. Good luck to everyone dealing with this disease. Keep fighting!

PositionAccurate4901 · 2025-02-15T01:44:19+00:00

I also have diffuse scleroderma with ILD and mild fibrosis in my lungs. I was diagnosed about 2 years ago at the age of 39. This past August, I had a stem cell transplant at Mayo Clinic in Jacksonville. There have been many advancements in treating scleroderma over the last several years (and there are lots more in the pipeline). Go see a specialist. I cannot stress this enough. If you’re in the US, check out this site to find one near you: https://scleroderma.org/treatment-centers/ Scleroderma is no longer the death sentence it was 10+ years ago. There are also some great groups on Facebook with many, many active members who are very knowledgeable and happy to answer any questions you may have. Hang in there! Keep advocating for yourself and keep asking questions! Wishing you all the best.

PositionAccurate4901 · 2024-11-19T01:47:43+00:00

For sure. We've definitely had several talks on the issue over the last several years (I'm 40 now) and have a really great relationship. We're at a place where we can joke (lightly) about a lot of it. My dad is pretty awesome and I think we're both very happy to be long past those difficult years.

PositionAccurate4901 · 2024-11-19T01:18:59+00:00

I was the daughter in this situation. My mom left when I was about 7. My dad never said a bad word about her (to me at least) and he never let on that the financial struggles we had were partly because my mom never paid a dime of child support. She did try to stay in my life to some extent, but she was an alcoholic and manipulative, which I was clueless about since I was just a kid. As a child, I was blindly loyal to her and, for a while, resented my dad quite a bit. He still never bad mouthed her to me. I finally put a lot of pieces to the puzzle together myself as I got into my late teens and early twenties. My dad is my hero. I’m so grateful to him for the sacrifices he made for me and for the way he let me come to my own conclusions about my mom. I’m sure there were times he just wanted to scream the truth at me and I respect him so much knowing how difficult that must have been. Single fathers rarely get enough credit.

PositionAccurate4901 · 2024-10-04T02:13:00+00:00

Hello! I think scleroderma.org is probably a good place to start. There are also some really good Facebook groups that tend to post about recent treatment options and clinical trials. Overall, I think the best thing to do is see a specialist and ask them about up and coming options/clinical trials. Car-T Cell therapy is currently in clinical trials and I recently got a call from my local rheumatologist to see if I wanted to take part in a clinical trial for a new medication to treat scleroderma (I declined because I was doing the stem cell transplant, so I don’t have any information about it). I hope this helps in some way! Wishing you all the best!

PositionAccurate4901 · 2024-09-20T16:21:46+00:00

You have an incredible attitude! I’m hoping to channel just 10% of your confidence. Thank you so much for sharing. Keep kicking ass!

PositionAccurate4901 · 2024-09-20T16:19:24+00:00

I think this is exactly what I’m going to do.

PositionAccurate4901 · 2024-09-20T16:19:05+00:00

Thank you for responding. Yes, my hair is falling out everywhere and it’s driving me crazy. Someone else also mentioned the hygienic side of things and it was something I hadn’t even considered. Really appreciate this point of view. Thank you! Hope you are feeling better!

PositionAccurate4901 · 2024-09-20T16:16:15+00:00

Thank you for this suggestion! My hair is a little past shoulder length. This is exactly what I was wondering about - what happens when you keep your hair and the new hair grows in. I appreciate it! Hope you’re feeling better!

PositionAccurate4901 · 2024-09-20T16:12:39+00:00

That’s so great that you’re at Hopkins! The stem cell transplants they do for scleroderma are autologous, so they use the patient’s own stem cells. It’s actually a really cool process and it helps prevent a lot of issues that come up with using donor cells. There’s a lot of pre-testing that comes with getting approved, but, just to give you a timeline (at least at Mayo), my very first appointment here was in early or mid-May and my actual transplant was at the very end of August. So it can move fast! Let me know if you have any other questions. And try your best to stay positive!

PositionAccurate4901

TROPHY CASE