Hello, I was diagnosed 5 years ago after a major crisis event. I had an knowledgeable kidney doctor who knew right away what I had. I went to Mayo Clinic for 2nd opinion and it was confirmed. I started IVIG January this year it has made a world of difference. I was having continuous crisis events. The IVIG has slowed the events down considerably until recently. When I had to ubruptly stop the treatments. My husband pasted away 4 months ago and I am the mother of two young children so they became my priority plus we moved. That's my story my question is. ... has anyone found a diet out there that helps keep crisis at bay? As diet I don't mean weight loss I mean diet as in lifestyle. Does the paleo, ketosis diets change anything? What about gluten free? Also having read that there is talk that scientists feel this disease is possibly a late in life gene mutation. Is it in any way hereditary that anyone knows of? Thanks for taking the time to read my post. Shannon

Shannon, I am very sorry for your loss. Now that you are a single parent, perhaps it is time for you to find a good hematologist in your new community to help you with IVIG. Your health is doubly important to your precious little ones. As for diet, I avoid carbs as they exacerbate swelling. Take care, Susan

Hello Shannon, As mentioned on other posts, stress seems to aggravate the condition, and you have had your share, and then some. We are with you in this. The problem of stopping IVIG is that everything else is so much less effective, if at all. But having said that, when I was first diagnosed, before I was able to obtain IVIG, I was started on T+T. It took a while to realise that the theophylline was reacting badly with MSG. So, if you are on T+T, try to be REALLY strict with MSG. This made a world of difference at the time, however IVIG is so important that if she were human I would consider marriage! ... just kidding! John

Shannon, I am terribly sorry to hear about the loss of your husband! You are welcome to write to Dr. Druey at NIH and ask him your question, but as far as I know, IVIG is definitely the most successful treatment for SCLS. Your children need you alive. Therefore, please resume your IVIG treatments ASAP. Do not play Russian Roulette!

Thank you for the response. I have no plans to stop the IVIG. Goodness no!!! It is my wonder drug. Prior to starting on it in January I could not drive, cook, do my own adl's. I had greatly lost all quality of life. I am finally getting back some sort of normalcy. I have a appointment with my new oncologist and kidney Dr this month. I just had a new mediport put in. The internal stitches on my old one just popped off on one side 2 weeks ago 66n as well. However these side effects are nothing compared to SCLS. I was only asking about diets for a additional treatment with the IVIG not to use in place of. Again thank you for your responses Shannon

Thank you for the response. I have no plans to stop the IVIG. Goodness no!!! It is my wonder drug. Prior to starting on it in January I could not drive, cook, do my own adl's. I had greatly lost all quality of life. I am finally getting back some sort of normalcy. I have a appointment with my new oncologist and kidney Dr this month. I just had a new mediport put in. The internal stitches on my old one just popped off on one side 2 weeks ago 66n as well. However these side effects are nothing compared to SCLS. I was only asking about diets for a additional treatment with the IVIG not to use in place of. Again thank you for your responses Shannon

Hi Shannon, What do you see the Kidney Dr for? It has been recommended that I see one.

Ritz I see a kidney primarily for my SCLS as it almost always effects my kidneys when I am in crisis. When I was first diagnosed my creatine was extremely high, I was in acute kidney failure. I just stayed with a kidney doctor since I seem to have kidney involvement for the most part. I haven't had any luck having a internal medicine doctor really know how to or want to handle my case. Good luck Shannon

Hi Shannon, I have a hematologist managing my care.

Hi Shannon, It is good to hear that u will continue the ivig and please go ahead and get back on it asap while you investigate other things although in my opinion the ivig is the only option. My brother is Guy Allen Overland( there is a thread from approximately 2/2015 if u look under his name in the discussion forum)who took the theophylline and tried to manage his scls thru that and exercise and diet. Unfortunately these things were not working and he had plans to switch to ivig. Within in 2 weeks of getting that started he had a severe episode and passed away and this breaks my heart every day. As arturo said this is russion roulette- he saw in person what happened to my brother and it was not something you would ever want your children or loved ones to go thru. The theophylline was the only treatment before they knew about ivig and looking back on my brothers experience it should not be considered a treatment of choice and if the ivig works then I wouldn't even consider changing. It is like going back to the dark ages- my brother was diagnosed 11 years ago and at that time that was all they had. The survival rate was extremely poor at that time with most not making it to 5 years so that tells you how effective it was. Theophylline has some serious side effects as well.Also I did ask Dr. Greipp and Dr. Druey about scls being inherited and at that time there was no evidence to correlate this and I am not sure if they really know. There don't seem to be families with this so it is doubtful. I am so sorry u r going thru this but please take care of u. Your children need u. For those of is who remember life before ivig it is truly a gift from God! Take care and be well! Linda

I have talked with a naturopathic doctor about diet and SCLS, and her recommendation was to eat as though I were diabetic - very low sugar, grain, carbohydrate consumption. In the holistic health community there is a growing perspective that auto-immune issues are fundamentally about inflammation, and that the Paleo diet approach is key to getting that under control. IViG works really well for me, so I can't say whether or not diet makes a difference, but I do know people for whom this diet makes a huge difference in chronic pain and in recovering from Lyme, which seems to mimic an auto-immune condition and responds to being treated as such (again, from the holistic perspective). If I ever lose insurance and have to go off IViG, I will rely on diet, homeopathic remedies, herbs, and nutrition. What we put in our bodies makes a tremendous difference - we ARE what we eat, so it only makes sense to eat whole, natural foods. Best of luck to you :)

Hi I recently tried a low carb diet and ironically I got better. I was very cautious about even mentioning this, because I do not wish to give false hope or put out any unorthodox unproven information that could be misleading. As long as I stick to the healthy protein, low carb veggies and avoid processed foods and junk food, I get better. I did share this information with my Dr. and he seemed pleased that I was feeling better and even referred to me as "sassy"! Hahaha I am usually confined to bed, but while I stuck to that way of eating, I was able to get up and around more often. The only problem is that it requires a lot of effort to continue to eat that way, so lately I haven't been as diligent. Still no junk but more carbs than recommended. I have to be careful with soy because of my thyroid or the eating plan would be much more simple to follow. I was just curious to know if anyone else has tried something similar with positive results?