Diffuse systemic scleroderma

After 6 months of tests I have this diagnoses. I will be 48 in May. I have 2 beautiful boys, ages 20 and 12. The most loving and supportive husband anyone can ever ask for. While my focus is still on my family, I am focused on stopping this disease from creating any further damage to my body.

I have hardening of trunk, chest, shoulders, hands and now small spots on face. No dis coloring only waxing. My hands are swollen with rehnads and some waxing of hand skin. Mild Scarring in lungs. Kidneys are good. Heart is good.

I would appreciate feedback from the great people on this platform about supplements you have tried.

I have read a ton of good info about the following supplements.

Turmeric
Flaxseed oil
Fish oil
Gotu kola

Thank you for your time!

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Barbara. I'm truly sorry to hear you share this awful disease with so many of us. I am still learning about supplements myself so cant offer much expertise in that area. But I encourage you to check out www.roadback.org and see if this approach makes sense to you. Many have experienced great success using this approach to stop SD. If it does, roadback can help you locate an AP doctor in your area. I wish you the very best in your research and pray God will show you what you should do! Sounds like you have a wonderful family!

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I can't help either but I am 46, recently diagnosed and in similar condition. Let me know if you find out anything. I also read tumeric might be good. Here is a recipe I found for tea.
TURMERIC TEA
Ingredients (all organic)
1 cup raw milk (goat’s or cow’s)
1/2 tsp turmeric
1 tsp cinnamon
1/4 tsp ginger
1 tsp raw honey or to taste

Heat the milk on the stovetop until hot, stir in the spices and drizzle the honey on top. Stir and enjoy!"

The author swears you need whole milk. I have no idea.

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Thank you both for your reply.
I will definately use your turmeric tea recipe.

I have recently made the following hot drink that has helped with inflammation.

1 cup hot water
Fresh ginger 2teaspoon
1 lemon squeezed into cup

So good...I recommend to all.

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I was recently diagnosed with scleroderma. My rheumatologist is trying to put me on every drug under the sun. I am currently taking prednisone as well as plaquenil. I am blowing up like a blimp and I cant say that I feel they are doing anything to make me feel better. My mom did some research and she also recommended that I take turmeric. I got some at the vitamin shop. I've only been on it a few days so I cant say whether it is helping or not, but I will definitely keep you posted.

Are any of you having problems with your bowels? I have had chronic diarrhea for years and I always dismissed it as IBS but I have read this can also be a cause from the scleroderma. Sometimes after I eat I look like I'm six month pregnant and I have diarrhea at least 3 to 8 times a day. I also take a probiotic and that does not seem to work. Any suggestions.

Thanks and God Bless!

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My first question is are you seeing a scleroderma specialist, as this is the most important thing you can do for yourself. I also have diffused and was progressing quickly and the specialist and the meds (I am on Cellcept, and low dose 5 mg prednisone) have helped slow down and reversed many of my symptoms. They did take a while to work. On the natural end of things I have modified my diet little or no gluten, sugar, milk, which has helped my stomach issues dramatically. Tried probiotics but they didn't seem to help and I have recently seen that you need to be carefully with them with suppressed immune systems. I also take D, B12, B 6 and Calcium. Have not tried turmeric for the pain, but hope it helps.

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Your best bet at this point (similar to where I was in 2008), is to see a scleroderma specialist (not just a rheumy who has some experience). There is a drug called Cellcept that is an immune suppressant that has shown a lot of promise especially for people with lung involvement. I have been on it off an on from 2009.

I also clean up my life a lot. Learned how to handle my life with relatively low stress because allowing myself to get stressed made all the symptoms worse. Removed as many chemicals from my diet as reasonable and drink filtered water. I try to follow an anti-inflammatory diet. Lost some weight. Make myself move for at least fifteen minutes a day but not super intense exercise (too much stress). I meditate, pray, take dead sea salt baths, try to do something for others, quit my high stress job and focused on being a grandma.

You are right to focus on stopping the progression, it is your best chance. I was a research engineer and came to the conclusion that immune suppressants was the way to go even though I rarely took any kind of pills before scleroderma reared its ugly head in my life. You will be bombarded with all kinds of options, none of which have been proven to work. You don't have time to try them all (many require you to wait for years to see results) because the disease will keep progressed while you are checking out your options.

It is also very very important to control the Raynauds because it could be further damaging your internal organs in addition to your hands and feet.

I took all the drugs my doctor recommended and then worked on managing the symptoms physically. By keeping my core body very warm and stress levels low, I know longer have to take any medication for Raynauds even in the winter. I have not had an attack in over a year even in Minnesota. My hands and skin look almost the way they used to. I have just a few red spots.

I am down to a very low dose of prednisone (2.5 mg daily or every other day) and the only other med I take regularly is the immune suppressant. I get all of the necessary testing done.

I hope you find the right path for you. Build yourself a team of trusted medical people and people who support you emotionally. Enjoy your life each day. I found that having this disease and all the uncertainty has made me really appreciate what I have today.

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Barbara - good luck to you on your journey. The first step toward better days is getting a diagnosis, so although this may sound rather absurd - Congratulations! I have mixed connective tissue disease with markers and features of scleroderma (systemic), lupus, dermatomyositis, and sjogrens and was diagnosed 7 years ago at 44. My first 4 years were sheer hell with many hospitalizations, surgeries, ICU stays, you name it. I have since reigned things in a bit, thanks to Rituximab. Unfortunately, my last dose did nothing for me and the past few months have been miserable. I decided to give diet and nutrition a try again. I had tried some recommendations a few years ago but was not successful in maintaining the plan. I think I was too sick to deal with it. Sad but true. For some years now, I have been following a few of the recommendations from Joel Fuhrman, MD. He is board certified in family medicine and is very successful at using nutrition to reverse disease. I did a phone consultation with him back when I was really sick. I tried following his recommended plan, but as I said, didn't maintain it. After my rituximab failure this past time, I decided to give it another go. My other options were Cytoxan and Imuran. I didn't want to go down that road. Many of my complications have been medicine related, and in one case, it nearly killed me. So about a month ago, I got back to my veggies and phytonutrients, omega-3s, no sugar, etc. I'm finding it easier this time; i learned a few things the first time around. I am also using some nutritional supplements from a company called Advocare. I researched supplements and liked what I found about the stuff from this company (with respect to purity and getting what they say you're getting). They market a ton of products, but I have only purchased and used the supplements. About a week ago, I started to notice a significant difference. For one thing, I am able to get out of bed every day. Not only that, but I have enough energy to make it through my day. I have noticed a big difference in the amount of joint pain that I have as well, and my GI symptoms are moderately improved. There are some things, though, that have not really seemed to improve. There's been no noticeable improvement (yet, I hope!) in my muscle weakness or lung function - or at least my perception of my lung function. One of the most wonderful things has been that the foggy, muddled, blunted cognitive function that I've experienced since getting this nasty disease has improved significantly. I can hardly believe it and can only pray that it is real and not a mere coincidence or passing fluke. Joel Fuhrman has a web site; if you google his name, you'll find it. I have read 2 of his books (Eat to Live, can't remember title of other but it dealt more specifically with active disease, including auto-immune). I get lots of recipes from his web site. He also sells nutritional supplements. I get my fish oil from his web site. Hope these suggestions help. Getting a handle on this disease really is a trial and error experience. Good luck on your path to healthy living.

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@drpunky I love Dr Joel Fuhrman he has taught me so much about nutrition. what did he tell you to do when you had your phone consultation with him? I also plan on a phone consultation with him in the near future I just want to get all the testing out of the way first. Jan 21st of 2012 I started his eat to live lifestyle and in about 4 months I lost 62 pounds had no more headaches, my body felt great, but then in June I faultered. I went back to my old way of eating and put back on 46 pounds, the same week I decided to go back on his eating plan ( Nov 20th 2012)My knees started aching my right upper arm was in pain I started having more Raynauds attacks, I noticed my hands were shiny, now I knew I already had Morphea but I didn't realize I had systemic sclero, I started looking all this up on th net and was so so scared crying everyday, not wanting to go to doctor, finally I did March 1st she took blood tests for Sjogrens, Thyroid, sclero, and sed rate. the results came back negative. I am having breathing problems now, so on friday I am going for lung function testing. people pleae pray for me, I do have asthma so I am hoping it has to do with that. Getting back to Dr Fuhrman, what he says about food and diease make so much sense. He has helped so many people. It has not been easy for me to stick with his program but I am trying since Nov I have lost about 40 pounds. I know a lot of you don't need to lose weight but you do need great nutrition, buy his books Eat to Live or Super Immunity you will learn a lot. he was on Dr OZ today.go to Dr Oz web site tomorrow so you can watch the show, they don't have it on there yet. I think if I can stick with his plan I can reverse this diease or at least keep it from progressing but it will take following his plan 100 percent of the time. I don't want you to think it is a hard plan to follow because it's not and after a few weeks you won't miss any of th sugary foods your use to, I have ate terrible all my life and have been way overweight for 30 years, I feel this is to blame for the most part on my heath going down hill. I will be 54 in May. his plan consists of Greens, Beans, Berries, seeds, nuts, and fruits lets not forget the mushrooms although I would like to

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Does anyone know anything about stem cell transplant? I read about Dr. Burt at Northwestern University yesterday.

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Maggie1963 --- this facebook page is your best starting point to learn about Dr. Burt's stem cell procedure as experienced by his patients -- http://www.facebook.com/#!/groups/StemCellPioneers/

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Can anyone suggest a ssSSc specialist anywhere close to Memphis? I will travel whatever distance I need to to find an expert. I only have rheumys with some limited experience, who don't want to order anything for me whatsoever. I have systemic diffuse sclera sine.

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This site might help you

http://www.scleroderma.org/site/PageServer?pagename=patient_centers_list#te nnessee

It is from scleroderma.org Hope it helps.

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Hi Barbara,

I'm terribly sorry to hear of your recent diagnosis. This is an excellent website to get information on supplements with studies that indicate why you may or may not want to take certain ones. There's extensive information on the internet and a lot of it is conflicting. Hopefully this will give you a good starting point.

http://www.sclero.org/medical/treatments/alternative/supplements/a-to-z.htm l#herbal

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Hi MAC 34176

I also have scleroderma and had years of problems with diarrhea. I would eat and 20 minutes later I would be in the bathroom. I was checked out by the G.I. Dr.s and they found nothing wrong. I had an alternative Dr. put me on digestive enzymes and what a difference. You take them with each meal---helps you digest your food and no diarrhea. The first time I took them, they were by prescription, but now I buy them at a health food store. They really help. Talk to your regular Dr. about them. Hope this helps.

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Gulfstream - Thank you so much for that information. I have an appointment with my family doctor next week and I will definitely mention that. I too can eat very little and within 20 minutes or so I'm in the bathroom. I'm sure this plays a part in my extreme fatigue. I drink a ton of water during the day, but I'm sure I'm still dehydrated! Thanks Again. Good luck with everything.

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Be prepared if the Dr. does not agree. Malabsorption can be helped with the enzymes also. Good luck.

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Hi, I was diagnosed about 3 1/2 years ago and was put on 3000 daily of cellcept. The disease spread through my arms, legs, torso, face and shoulders. I had horrible raynaulds and esophagus issues. I take 5000 vit d a day- probably one of of the most important- I started out with 10k a day for about 2 years. I take probiotics, coq10, curcumin, grape seed extract, niacin, vit b12,,,, I would say vit d and probiotics are most important. Also the disease can wreck hormone levels- I am also on testosterone. Get on cellcept if you aren't already- I got on in 6 months after disease really hit and my hands and face are not too bad as far as deformity. All the best,,,Jody

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Hi,,,,cellcept is what you should be on- it seems to be the best chance to slow down and return some of the damage the the disease inflicts,,,,all the best,,,,Jody

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Hi Maggie,,,all you say is basically what I have done. I own my own business but work a very easy schedule that doesn't stress or tire me out - I have a great staff and I let them handle most - just found out recently its now in both my lungs and just had my left knee replaced- stayed on cellcept right through whole ordeal,,,,,stay well,,,,,

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What is cellcept for? I know someone who just had a lung transplant - she's had this for 15-20 years and I think it was pretty severe. Ugh! How are you doing?

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