Natural approach or drugs?

[Chrisb]

Hi All

First off thank you for being so supportive during most difficult and lonely thing I've ever experienced.

So I was reading through old posts and noticed that some chose natural approaches versus plaquenil etc. I was wondering if plaquenil is given to slow down the progression of this disease, do natural approaches diet etc work just as well?

I've taken plaquenil 3 days so far. My mouth taste like metal. I just feel weird taking it. Is it worth it?
Rhuemy says treat the core with plaquenil not just the symptoms. Do you agree?

Christian:)

[Reanne]

Yes, I agree.  I have done well on Plaquenil for several years.  I've had some issues now that maybe medication toxicity.  I have quit taking it daily.  I can tell a difference in pain/fatigue levels.  What do you do? darned if you/darned if you don't....

[Sleepy In Seattle]

I am sure you will get a lot of replies on this one. 

Personally, I think there's no one-answer-fits-all solution. You just have to try stuff and judge what works for you.
There are people on this forum who are in the hospital or dead, who would probably tell you to use every nuclear option available form the very beginning, because they waited too long (or weren't properly diagnosed until too late).

There are others who have had HORRIBLE experiences with even the MILDEST drugs and would advise you to run like heck from anything made by a pharmaceutical company. Some have had WONDERFUL success with various "natural" (i.e., non-pharmaceutical) modalities in treating this disease.

Personally, I am on the fence, where I will probably remain for the rest of my life, LOL....

I have Lupus and Sjogren's, as well as APS and Raynaud's (and who knows WHAT else...). I was lucky enough to be diagnosed pretty early - within about 3-4 years from the inset of symptoms (yes, that's early  )

I am lucky enough to have a great Rheumy, and still be relatively good health now that I am getting treatment. In my experience, a balance of "natural" treatments and drugs is what keeps me that way. I have had relatively few side-effects from the drugs, not too much trouble with the diet, and a big improvement of my quality-of-life compared to where I was 5 years ago. Two years ago, I was pretty dang sick - running at maybe 20% of normal. Today, I live at what I'd say is about 85-90% of normal. Not too shabby. I don't know how long that will last, but I can't argue with the improvement!!!!! 

For what they're worth, here are my regrets and insecurities (in case they help you to avoid the same!):
I WISH I had tried a gluten-soy-and-dairy-free diet sooner.
I WISH I had not been so afraid, and had gone on Methotrexate sooner (it works WONDERS for me!!!!). I might still have my hearing in my right ear if I had (I lost it to Lupus(?) in April of last year).
I WISH I knew for sure if it was the Lupus or the Plaquenil that caused that hearing loss. The doc says it's the Lupus, but honestly I think it's a crapshoot.....

DO be aware that DESPITE what 1,000 websites claim, there is NO RELIABLE CURE FOR THIS DISEASE - no supplement, no diet, no treatment that cures it. And it IS a serious disease - there can be damage going on in your organs that you are not aware of until it's too late, so it's REALLY IMPORTANT that you have an honest, open working relationship with your Rheumy, and that you get monitored regularly (blood work, etc). If you want to try some diet or supplement THAT IS YOUR RIGHT....but please at least let your Rheumy know you're doing it. S/he may scoff at you, but it's YOUR CHOICE. It's also your RHEUMY's responsibility to track any changes, so don't make his/her job harder by being secretive about it.

That's my two cents....I hope it helps.

Oh, BE PATIENT and always be open to changes - things change. A treatment regime that works for you now may not work in 6 months or a year - or it may take that long (or longer) to find what works for you. It's one of the most aggravating things about these diseases - you get a diagnosis and it really doesn't DO much, because every individual responds differently to treatment.

LISTEN you your Rheumy - and most of all, LISTEN to your BODY!!!

Best of luck....

[Cindy]

I would say both.

Im on plaquenil, evoxac, restasis and many supplements. As long as the combination keeps working Im happy. I think it was diagnosed early too.  My only real symptom
was episodes of joint pain, it was this year when I felt all the weird changes and starting looking for answers. I was the one pushing for an answer and to get tretment as soon as possible. The only advice from the rheumy that I dont follow is plaquenil 300 per day. Im taking 200 and Im scared of eye toxity because my weight is berely 115 on good months I can weight 119 but stress makes me lose weight fast. Everybody can tell when Im stress because I loose weight in days and my face is the first one to change. Im trying to gain maybe 5 pounds and Ill consider adding 100 more of plaquenil.  Im contantly looking for natural ways to help my sjogrens but sadly theres not many.  Im open to anything that helps my body

[4Kids]

I say both as well.

I had a trial off Plaquenil. I had only been on it for a year or just over. Anyway it was like someone was dropping a lead blanket on me day by day. My joints and back started popping and cracking every time I moved, I was stiff, my feet hurt and I got needle pains in hands and feet again.  My mouth and eyes were drier. I am one of the lucky who, for right now anyway, Plaquenil just makes life worth living. I have no side effects--I mow our like 5 hundred acres in the SK sun with no ill effects. Three weeks back and I am finally able to move around and want to do things which before were just no doable because I was too weighed down.

I couldn't live without Salagen and Restasis is one of those meds which I think adds to quality of life. The dr had me go off that for a trial too, because my eyes had recovered from that terrible flare to the point they were almost NORMAL. So I went off  and guess what... the slow descent into drier, gummy and burning eyes started. I am back on it    I say if you absorb steroids through your eyes to help you why can't Restasis do the same if it is an immuno modulator or regulator or whatever. Who knows but I feel so much better on it.  Salagen...  well I have a mouth which is iffy. Let's just say I keep a stash in every room, my purse, my van, my suitcase and although I need less than I did in June of 2011, I feel very very anxious without it. I wouldn't even try a trial off of it. Even if it is just twice a day, I take it.

I also carry a prescription of prednisone in case I ever get a severe flare ever again. It seems to happen when I travel and other ERs/Urgent Care Centers do not necessarily believe you have a autoimmune something or recognize it and often do not want to treat. Had I got some treatment I might have a bit more mouth function. (I went almost saliva free for about 6 weeks before starting salagen, it just turned off and there wasn't enough saliva to chew gum or anything.  All the ERs I went to went, ah, it's a virus. You won't die.) That will NEVER happen again, as God is my witness.

The rest I am exercising, low intensity but powerful and very often, and I am hoping that helps. I take supplements.  I try to avoid carbs (although I don't do gluten free, that starch is all just sugar which is no better imo) but most of the time I don't and I eat what I want.

I am almost back to being 85-90% of what I could be. And I will take that and appreciate it for every little single moment I have in case it isn't always like this.

K I lied. I am a the take the drugs approach kinda girl.

[Sooki]

I was able to eliminate my symptoms for probably 5 years by diet alone (gluten, dairy, soy). I even reversed some symptoms (bony knuckle bumps).  But gradually, the symptoms crept back in, especially in times of stress. 

So I went to a great rheumy who prescribed plaquenil, which took away all my symptoms for awhile, with no side effects. Eye doc prescribed Restasis.  The next year, I developed sun sensitivity and was diagnosed with Lupus.  I added Cellcept which has now controlled my symptoms for several years, also with no side effects.

Fatigue and brain fog were the only ones still bothering me.  I address those with OTC supplements (I guess I'd call that natural) and further refinements in diet (no grains, sugar, veg. oils) and am doing well.  I'm probably 85-90% back to where I was.

Since I've had a good experience with drugs, I will take them when I need them.  Sjs isn't something that will just go away by itself.  I also know there are things I can do myself to feel much much better (diet, exercise, etc.) and I'm proactive about finding them and sticking with them.  I can bring back my symptoms by eating poorly, so I know that's an important part of my feeling well.

I hope you find a good combination of treatments to feel good again.  Don't forget to do what you can in terms of lifestyle to help slow the disease.  It's empowering to be able to have some impact.  My rheumy also thinks that slowing the progression of the disease will slow deterioration and future complications.   

[quietdynamics]

Hi All

First off thank you for being so supportive during most difficult and lonely thing I've ever experienced.



Christian...  A word on medications, disease AND posts. Both meds and disease can have unique effects on individuals.  They are not "one size fits all"
Posts, as you probably, hopefully know and practice do no assume theses effects from meds are ones you will experience or that symptoms and in some cases progression, remission (state of lack of symptoms) will necessarily be your experience.

Plaquinel is the first course for slowing progression and is a fairly mild drug.  I had a metallic taste as well, and it eventually went away. Some people experience different relief from symptoms as well. I believe the degree of relief is dependent on the degree of the symptom and duration of taking the Plaquinel, +/- 3 month for full effect.

There is no Cure, no one med, so as mentioned changing lifestyle to accommodate, and stave off  an inflammatory state is always to your benefit. Thus if natural = healthy, anti-inflammatory; you have a win-win situation.

Keeping a diary to self-reflect, monitor and learn your triggers, how to pace yourself, eat, cook (fried foods are a no-no), sleep schedule, social/emotional triggers ,etc. will help you learn and grow. This can be a valuable tool for you and your Dr.

[Violet4]

I tried Plaquenil back in Nov I think it was.  I endured 14 hours of digestive heck.  And that was only 1 pill!  The rheum told me that it is usually well tolerated, ha ha ha.  I know I am sensitive to meds and side effects but every now and then I get desperate.  My body does not like the traditional medical approach and I just need to be reminded every now and then.  So I'm going with supplements and diet changes because that is working out WAY better than anything else has so far.  I have been on a gluten free diet for a month now and I actually have spit and snot again, YAY!  The eyes still aren't great, but I have hope.  I don't have pain, my joints and muscles are just fine.  I feel motivated, I have energy, I can get out of bed and function all day, every day.  I might even quit the Restasis because I doubt it's helping much anyway and I still have to use drops so why spend even more $ for the med.  I can tell when I get exposed to gluten because lots of symptoms come back.  But the GI says I don't have celiac and the rheum says that a dietician would not be helpful for me.  So whatever, I'll keep plugging along and see what happens.  Good luck with figuring out what works for you!