Just curious to see if either of these have worked for anyone. This is my take on my SJS journey: It is an illness I will have to learn to live with and manage, as it isn’t going to go away. However, by the same token, it has been 4 years of drugs that don’t work for me, or I have reactions or side-effects from that I am not willing to “live with”. I have basically had a rhuemy tell me “you have to pick your poison”. Truthfully, reading the side effects from most of these meds and the fact that many of them are chemotherapy drugs, I have chosen not to “pick a poison” or use them, at least for now. Granted this is a personal choice, but it is the right one for me. I figure I have absolutely nothing to lose by trying an alternative treatment, since nothing else has worked. I will be no worse off if they don’t work than I am right now.
Currently, I am on a very low dose of prednisone, which is still not something I want to stay on very much longer, as it dose have issues of its own, but the side effects are not cancer! Someone with SJS’s already has an increased risk of developing lymphoma, and I already have a throat full of cysts (benign at this point), but because of this, I just can not bring myself to take drugs that increase this risk further, no matter how small that risk is.
I feel since this is a life time illness, I need to learn how to manage it without drugs that I feel are toxic, and at 52, I cannot even imagine taking any of these drugs for the next 30 or so years, should I live into my 80’s. So I want make changes in my lifestyle to learn to manage my symptoms rather than take toxic drugs for the rest of my life. It is kind of hard to put this all into words, so I hope I am making sense.
Again, this is a personal choice for me, and I am just curious to see if anyone else has tried or had success with these alternative treatments.
So to make a long story short, I am now trying to see if I have any success with essential oils and an anti-inflammatory diet. I will be starting with the dietician for the diet in a week or so, and have been using some oils for about 3 weeks now.
These are oils that are taken either by drops under the tongue or in a veggie based capsule. I feel it is as important to me to say that I found someone extremely knowledgeable about the oils, as I would never have done this blindly.
I will still see my rheumy too, and am curious to see if the oils help to bring down the inflammatory markers, as 4 years of medications have not even budged them. So far though, after years of painfully dry nasal passages due to inflammation from SJS’s, I definitely feel a difference now. So this makes me hopeful that it will help the inflammation over all.
As far as the diet, I feel I can change what I eat and be ok with that! I changed my dietary habits about 18 months ago to lose weight, and am successful in keeping it off, so changing it again, to help with inflammation seems like the next logical step.
I will definitely keep everyone posted if I find success with these methods and PLEASE, if anyone else had success with this please let me know!
Thanks
Cleaning up your diet is never a bad idea, and working with a nutritionist is a good plan. The essential oils. . . . Well, they aren’t supported by research, are they? This doesn’t mean that you shouldn’t try them, but I would encourage you to use caution.
I’m glad to hear that you’ll be continuing to see the rheumatologist. I would hate to think that you would completely turn away from that. There’s no reason not to use supportive strategies in addition to modern medicine. I’ll be interested to hear how things go for you.
Marylou, welcome here. We have a part of the community devoted to complementary therapies: have a look through that section to see if there’s anything that would be helpful to you. Meanwhile, because complementary therapies are your main interest, I’ll move this thread to that section of the board.
Best of luck to you!
Seenie
PS Posting on any existing thread should send a notification to the people who have already posted on that thread. This may generate some discussion for you.
We’ve had quite a few discussions about anti-inflammatory diets; the discussions are searchable by topic so if you have time you could have a look through to see how successful they have (or haven’t) been!
Good luck to you- I hope you see some positive changes to match your positive attitude!
Thanks for your comment. Like I said, I realize the use of EO’s is not for everyone. I am giving it a shot to see if it helps, if they don’t I will stop. As far as being supported by research, I believe there is research to support, but it isn’t mainstream so you have to look and it is important to find a support person who is very knowledgeable to help. I am very confident in the person who is helping/supporting me through this.
It is true that EO’s are not recognized by the FDA but neither are vitamins or supplements, yet vitamins/supplements are good and helpful for many people, me being one of them. Many people use EO’s in different ways, everything from using them as supplements,for enhancing flavor in cooking, to use in diffusers, to some that are great for cleaning with. I did not go into this blindly, I did as much research as I can and I continue to do it, because of the fact that they are not regulated, I want to make sure that what I am doing is safe. I will continue to see my rheumy and hope that if the EO’s work for me that he will continue to be supportive of me using alternative therapies, and like I said, for now and am doing both the oils and prednisone.
I have heard that anti-inflammatory diets work well also, so that is the next area I am going to explore.
I have kept a medical journal for myself ever since my SJS diagnosis, and that really helps me keep track of meds, side effects, daily progress or setbacks, etc.
My purpose for bringing up this topic is like I said earlier, just trying to see what has worked for other people in our situation.
Ok thanks, I am new to this forum stuff, so your help is appreciated.
It sounds like you’re going about this in an informed way. That’s really good.
Hi, Believe me, this was not an easy decision for me. I was terrified to start taking the EO’s internally. I have no problem using them topically or in a difusser, but internally was an area I was very leary of. I still read some contradictory stuff about not using them internally, however most of those reports say not to use them internally unless you are taught how to do it safely by someone who has been properly trained. And truthfully, since I am new to it, I am keeping track daily of how I feel and I contact my support person if I am unsure about anything. I feel very lucky to have a support person who I feel truly wants to help me and not just recommend this stuff because she makes money. She is very knowledgeable, an a biologist by trade. About 2 years ago was the first time I was introduced to the EO’s, and let me tell you, the presenter really turned me off by the way she approached her entire presentation. She felt these oils were cure-alls, and was extremely pushy. She, I believe, only was interested in the money. So fast forward to the present. I went to a seminar for work, had no idea there was going to be someone there talking about oils. This lady was so down to earth and really knew her stuff, and wasn’t pushy, so listening to her was a much different experience. She was knowledgeable and took time to listen to me, and I felt we had a connection. Realistically, I am not trying to cure myself, because I don’t think that is possible, but if I can feel better and if blood work shows a difference in my anti-inflammatory marker, then this is all worth it.
Anyway, I would always advocate for learning as much about it as you can and only doing what you are comfortable with and finding someone who is genuine in their knowledge.
I also found out tonight that the FDA does have a list of EO’s that it recognizes as “safe”. It is called the FDA GRAS (generally recognized as safe) list. This is a list they feel are safe oils to consume and has documentation to support it. So knowing this does make me feel better about using them internally. Also, most companies that sell these oils will tell you which ones are safe to consume internally, which ones need to be diluted first before using topically or ingested and which ones can never be ingested.
Hiya Marylou I use lots of oils for everything external, internal and for my environment…it helps so much and I’v not even ventured into aromatherapy know how yet. I found certain foods/herbs/spices enhance certain effects of oils. Certain oils I hear when used on feet will help too. Which oil is your best to consume?
Hello. Im kinda a newbie at this. While ive had symptoms for years I was just diagnosed 7 weeks ago. I was put on hydroxichlor and told it would take 4 months before it would help my pain. The rheum also suggested a paleo diet. Basic and boring but in less then a month my pain is now gone and has stayed gone so far. I believe the paleo diet had something to do with it. The paleo basically deletes carbs from your diet. Meals without potatoes , rice , etc etc are very boring.