Monday, January 23, 2012

Sjoggies Helping Sjoggies

I recently received this letter. I respond to all letters that are sent my way, but I thought this sjoggie could benefit from others' perspectives, not just mine. Her story is similar to most of ours in some respects, but different in others in that she is not able to tolerate the side effects of drugs commonly used to treat Sjogren's syndrome and is looking for other modalities to ease her symptoms:

Hi, I got your email from your blog.
Thanks for having it out there, as I have been reading, and reading.. and reading some more about nutrition and supplements for Sjogren's syndrome. 
I have known I had this for almost 20 years now, and suspect when looking back I had it also affecting me even years prior to that.
I am a mother of 5 grown children, and at present in a flair so far lasting 5 months, which is not uncommon for me, 6 months to a year, then all of a sudden for no aparent reason I have a good few months or a year at best...
I am not sure yet of all my triggers but am very interested in  doing what I need to do for "this ol' body of mine".
I need wisdom, and agree with you we are not all made alike, and our symptoms are very individualized.
I seem to think I need to elimiate gluten, and soy, and  have dairy in moderation. So far  it seems  like  this is very true for me. I take vitamin D  frequently, and I should be taking C but ususally forget to add it to my water  (it's in poweder form recomended by my naturopath). I'm thinking I need the Omega fish oil... but want to find small caps, as large ones swallowing is an issue. And I have the liquid but yuk!  So there it sits in the fridge.
Can you share any links, or advice,... if you have also done some reading & study in all this......and my own doctors don't say or do much because any meds we have tried just have horrible unbelievable / not tolerated side effects, so I can't take plaquinil  or chloroquine.
Anyway any thoughts you may have greatly appreciated.

I had to think about M.A.'s dilemma for a bit.  In order to answer her questions, however, I'm wondering what exactly her symptoms are, since we all know that the range of effects from Sjs is wide. I'm concerned that her symptoms that she considers a flare are serious for very very long periods of time. Is this a flare? Or is her disease seeing as it is basically untreated, simply progressing to a more severe disease state?

My first thought was that M.A. would need to re-discuss her concerns with her doctor, and if she was not getting answers or a new plan of action, to consider getting another doctor. Not all physicians are comfortable or competent in treating autoimmune diseases. 

Even though plaquenil and other anti-malaria drugs are considered first line medications in the treatment of Sjs and other autoimmune diseases, there are other medication options. I believe it would be a very good idea to discuss the possibility of other options with your doctor, or another physician that you trust. Don't give up completely on the use of some medications to dampen the autoimmune response in your body which is the crux of your problems. 

M.A.'s efforts to change her diet are definitely on track with other health professional's suggestions: to avoid gluten and limit dairy. The Sjogren's Syndrome Foundation labels a diet similar to this as being an anti-inflammatory diet, and you can read more about it here

With respect to taking supplements such as fish oil, again, this seems to be a good idea, as suggested by others. You can read a bit more about supplements here. The University of Maryland has an excellent site which discusses supplements' use, side effects, drug interactions, and warnings. Always, but always, discuss taking any vitamin, herb, or supplement with your doctor before using.

I know that several of Reasonably Well's readers are very knowledgeable about complimentary and alternative therapies in the treatment of autoimmune disease, and am asking for your suggestions and input. 

Comments? Suggestions? Links? 

Hang in there, M.A. We all know how hard this is, and we are all here for you! 


Unknown said...

M.A., I am so sorry that you have been feeling terrible and not receiving support from your doctors. Too many physicians believe that there are only a few options for Sjogren's when, in fact, there are many.

Can you share some more information about your symptoms? As Julia said, they are different for everyone.

Dr. Fox's patient guide is long, but he is one of the best out there, so you might find it worth a look:

cargillwitch said...

I am unable to use fish oils( allergy) and have found flax seed which also contains high amounts of omega 3's very helpful. I use a high quality organic liquid that you keep in the fridge. I use it on steamed veggies each day- very palatable!I also use pancreatic enzymes and digestive enzymes as my gastrointestinal system has been damaged causing malabsorption.I also am gluten and casein free, both of these proteins I am guessing leaked through my intestinal mucosa at some point and my body now deals with them as potential bacteria or viruses. Not pleasant.I use valerian ( which I grow and tincture myself) and magnesium for sleep issues and motherwort tincture for daytime calming. To this point I have opted not to take any allopathic medications . I don't do well with them either. Your naturopath should be a great help in assisting you to address specific symptoms and keep you as well as you can be .We are all such individual creatures! Best wishes of good health to you.

ShEiLa said...

I feel like I am riding in the same boat with M.A. I am on Plaquenil just like you. I also related to the trouble swallowing... pills especially large ones are giving me fits these days. I take Ibuprofen 800 at least two times a day sometimes three... and alternate Tylenol. I think many rheumatologists love Plaquenil just because of the low side effects... who knows about it's effectiveness.

I don't consider myself an authority at all... just learning how to cope like everyone else. I do believe that some of us are luckier than others in the physician department.

Hang in there!


ShEiLa said...

ps. I am curious to know what everyone else does to control their pain levels. If I let mine go too long... it's a nightmare.

annie said...

M.A.,you have already started on a good path by consulting with a naturopath. Medical doctors use scientific means in which to help us, but they do not look at the body as a whole; therefore, they only treat parts of it. As mentioned, although most of us have similar symptoms, we all experience individual problems and should have treatment geared to our own needs.

It is a known fact that we have sensitivities, whether to food, meds, etc. and a good rule of thumb is to eliminate or reduce whatever will cause us more inflammation. This usually means wheat, dairy, sometimes soy,nuts,reducing meat consumption and adding more fish, fruits and vegetables, and using alternate grains.I do well on a bland diet (no salt or condiments and using extra virgin olive oil in my cooking),and watching portion sizes to maybe snack more but have smaller meals so as to not overload the digestive system. I also do not eat processed foods and very minimal sugar. Sometimes, eliminating coffee is warranted and drinking herb teas or green tea helps. I do take a calcium supplement,a multivitamin and a vitamin E everyday. A naturopath really helps with a nutrition plan.

I also take plaquenil, but instead of 2 tablets, I take one as I had issues with the original dose. Again, sometimes it's not necessarily the meds, but the dose we have problems with. I am not big on pills, but I also do not want the disease to progress too fast, so going the medicinal route is sensible, provided tou can tolerate pills. Good luck with your health.

ncbaker said...

I have taken an alternative approach to treat symptoms and modulate immune response. My Integrated MD prescribes LDN or low dose naltrexone. I get it compounded and at 4mg it is a homeopathic level dose that has an immune modulating effect. It has no side effects. Most md's do not even know of this use for the drug which was originally developed for addicts at a dose of 50mg. I have never taken any of the standard meds and was lucky to have an MD who treats her own psoriatic arthritis with Ldn. I also take fish oil and flax, turmeric, ashwaganda which is also good for my hashimotos and vitamin d. I take magnesium before bed and it is helpful for sleep as is melatonin, but that makes me groggy in the am. Meditation is also part of my routine. And most importantly, think healthy thoughts. It's very easy to get caught up in the negativity but I find that makes me worse. There's always another way.