Scleroderma (Systemic Sclerosis): Anyone else?

I have chosen not to start Cellcept. I have been following an AIP diet for almost 3 months that is supposed to help with inflammation and gut repair. My hands are still quite swollen, but I definitely feel better. I suppose I am hesitant to be on any sort of medication. I tend to be one of the people who are highly affected by medications and end up with all of the bad side effects. I suppose if I am able to find a provider that knows what they are doing I should at least try it.
I appreciate you responding.

I have chosen not to start Cellcept. I have been following an AIP diet for almost 3 months that is supposed to help with inflammation and gut repair. My hands are still quite swollen, but I definitely feel better. I suppose I am hesitant to be on any sort of medication. I tend to be one of the people who are highly affected by medications and end up with all of the bad side effects. I suppose if I am able to find a provider that knows what they are doing I should at least try it.
I appreciate you responding.

I have been seeing a rheumatologist for 3 years now..(I live very rural and not many in this area)..the 1st time I saw him he was on a TV (he also works at a VA in NY..I live in OK). Prior to my visit he required 18 vials of blood for blood work.. I analyzed my results and found a SCL 70 1.0 Pos /Homogeneous titer.. I asked him alot of questions.. he asked me "why are you asking me questions my medical students should be asking? (Well because I didn't when my husband had cancer..and he died) so then he started to cry and proclaimed it a miracle and said I don't have it.. and we Praised the Lord! (And I threw out the hydroxychloroquine pills he had sent ..prior to my visit ..and after having my eyes cleared for the meds..and a $600 new pair of glasses). 2nd year same thing only SCL70 was now 3.0 pos.. this time I saw him in person.same thing.. "miracle you don't have it".. THIS year.. after so many horrible years of being so ill and developing pyloric stenosis..which he said "gastro" had to deal with. he had an assistant..who didn't order the usual 18 viles of blood work and I had to request the SCL70 .. which was now down to 2.0 pos.. this young man told me "we can't rule it out"..and since my significant other was with me.. (he lost his wife and a daughter..and he's had enough loss in his life..didn't want to frighten him) I replied.. "wouldn't I be losing weight? (I had been down to 98 and 104 for along time.. now up to 157 ..too fat!) and he said "not necessarily" ..so I said .. then I am going to expect either my kidneys or my heart will fail.." YES was his response.. and then the DR came in but he was preoccupied with getting at tribal contract he had a meeting with in 15 min..so he'd asked me for a scripture for him the last year and I had one and he just t was "Wow Holy Ghost.. and all of that.. so..I am a believer.. but where is MY MIRACLE??? He got the contract.. and now they tell me he's very busy and I can't see him until IDK when..and I am 71 and have spent the better part of 3 years in bed.. with a few good days.. so does anyone know if the hydrochloraquine pills will slow the progression of systemic scleroderma manifesting in the digestive system??? I am really quite frustrated at this point.. quality of life is about zero (please excuse the religious vernacular if it offends you..it is part of the story ) ..He's not going to cost me my faith in God .just sort of losing trust in him.. what does anyone thing about this?..I'm not sure what to do.. except try to get back in and see him.. and pray!! thank you all for reading this and this wonderful forum!!

I have followed the AIP diet since 2014 and it has been a life saver for me. I strongly encourage you to stick with it. Most people can't so hang in there. I am now able to maintain my inflammation levels CRP's 3-4 range) so that I have managed to not take inflammation controlling medications like Prednisone. Like you, I am very sensitive to drugs and hope to postpone taking them until it's absolutely necessary. I was misdiagnosed in 2011 with RA, drug Orencia can me breast cancer, 2013 correct diagnosis from Mayo MN of Primary Sjogrens with extra glandular manifestations (EGM), kidney disease 2018, open heart surgery 2023, age 73. I walk 5-miles a week and work in my garden and in 2020 adjusted the AIP diet to a vegetarian one to help control my kidney disease. Good luck to you and control your inflammation; that the key. Everyone makes their own health choices so stay strong and choose what works best for you.

@andielars25 You almost sound like you don’t trust your doctor. Have an honest talk with your doctor about your ‘fear’ of medicines. I’ve been on CellCept for about 5 years. I had 1 bad reaction, but it turned out not to be the CellCept at all! I’m also leary of drugs, but I wouldn’t be here today if it wasn’t for all these amazing drugs!
Do you think you could try and have a conversation with the doctor or maybe a pharmacist?

I have been seeing a rheumatologist for 3 years now..(I live very rural and not many in this area)..the 1st time I saw him he was on a TV (he also works at a VA in NY..I live in OK). Prior to my visit he required 18 vials of blood for blood work.. I analyzed my results and found a SCL 70 1.0 Pos /Homogeneous titer.. I asked him alot of questions.. he asked me "why are you asking me questions my medical students should be asking? (Well because I didn't when my husband had cancer..and he died) so then he started to cry and proclaimed it a miracle and said I don't have it.. and we Praised the Lord! (And I threw out the hydroxychloroquine pills he had sent ..prior to my visit ..and after having my eyes cleared for the meds..and a $600 new pair of glasses). 2nd year same thing only SCL70 was now 3.0 pos.. this time I saw him in person.same thing.. "miracle you don't have it".. THIS year.. after so many horrible years of being so ill and developing pyloric stenosis..which he said "gastro" had to deal with. he had an assistant..who didn't order the usual 18 viles of blood work and I had to request the SCL70 .. which was now down to 2.0 pos.. this young man told me "we can't rule it out"..and since my significant other was with me.. (he lost his wife and a daughter..and he's had enough loss in his life..didn't want to frighten him) I replied.. "wouldn't I be losing weight? (I had been down to 98 and 104 for along time.. now up to 157 ..too fat!) and he said "not necessarily" ..so I said .. then I am going to expect either my kidneys or my heart will fail.." YES was his response.. and then the DR came in but he was preoccupied with getting at tribal contract he had a meeting with in 15 min..so he'd asked me for a scripture for him the last year and I had one and he just t was "Wow Holy Ghost.. and all of that.. so..I am a believer.. but where is MY MIRACLE??? He got the contract.. and now they tell me he's very busy and I can't see him until IDK when..and I am 71 and have spent the better part of 3 years in bed.. with a few good days.. so does anyone know if the hydrochloraquine pills will slow the progression of systemic scleroderma manifesting in the digestive system??? I am really quite frustrated at this point.. quality of life is about zero (please excuse the religious vernacular if it offends you..it is part of the story ) ..He's not going to cost me my faith in God .just sort of losing trust in him.. what does anyone thing about this?..I'm not sure what to do.. except try to get back in and see him.. and pray!! thank you all for reading this and this wonderful forum!!

I didn't quite follow exactly what you were saying, but it sounds like you need to find a different doctor. What I have learned recently is that inflammation is what seems to cause/contribute to a lot of health-related issues. I have no idea what sort of physical shape you are in, but I know that movement every day (stretching/walking/swimming) eating a healthy diet ( I am currently following an AIP diet) and drinking plenty of water has helped me feel better both mentally and physically. There has been more and more research showing how much our gut imbalances contribute to a variety of issues. I hope you are able to find your miracle. Good luck.

I have been seeing a rheumatologist for 3 years now..(I live very rural and not many in this area)..the 1st time I saw him he was on a TV (he also works at a VA in NY..I live in OK). Prior to my visit he required 18 vials of blood for blood work.. I analyzed my results and found a SCL 70 1.0 Pos /Homogeneous titer.. I asked him alot of questions.. he asked me "why are you asking me questions my medical students should be asking? (Well because I didn't when my husband had cancer..and he died) so then he started to cry and proclaimed it a miracle and said I don't have it.. and we Praised the Lord! (And I threw out the hydroxychloroquine pills he had sent ..prior to my visit ..and after having my eyes cleared for the meds..and a $600 new pair of glasses). 2nd year same thing only SCL70 was now 3.0 pos.. this time I saw him in person.same thing.. "miracle you don't have it".. THIS year.. after so many horrible years of being so ill and developing pyloric stenosis..which he said "gastro" had to deal with. he had an assistant..who didn't order the usual 18 viles of blood work and I had to request the SCL70 .. which was now down to 2.0 pos.. this young man told me "we can't rule it out"..and since my significant other was with me.. (he lost his wife and a daughter..and he's had enough loss in his life..didn't want to frighten him) I replied.. "wouldn't I be losing weight? (I had been down to 98 and 104 for along time.. now up to 157 ..too fat!) and he said "not necessarily" ..so I said .. then I am going to expect either my kidneys or my heart will fail.." YES was his response.. and then the DR came in but he was preoccupied with getting at tribal contract he had a meeting with in 15 min..so he'd asked me for a scripture for him the last year and I had one and he just t was "Wow Holy Ghost.. and all of that.. so..I am a believer.. but where is MY MIRACLE??? He got the contract.. and now they tell me he's very busy and I can't see him until IDK when..and I am 71 and have spent the better part of 3 years in bed.. with a few good days.. so does anyone know if the hydrochloraquine pills will slow the progression of systemic scleroderma manifesting in the digestive system??? I am really quite frustrated at this point.. quality of life is about zero (please excuse the religious vernacular if it offends you..it is part of the story ) ..He's not going to cost me my faith in God .just sort of losing trust in him.. what does anyone thing about this?..I'm not sure what to do.. except try to get back in and see him.. and pray!! thank you all for reading this and this wonderful forum!!