Can you live without serious medicine? How long could you manage without medicine?

84 Answers

general.fernandes
Answered 6 months ago    reply

I refuse to take any until after I have kids.


c.sanders
Answered 6 months ago    reply

The medicine I take is by choice anti-inflammatory and dry mouth medication


ballenger.93
Answered 6 months ago    reply

I don't take anything. The day I was diagnosed the doctor was going to put me on something I walked out and I haven't been back. I am not sure if it is the right thing to do or not. I kind of believe the meds makes it worse. Just my opinion. It is hard to know the right thing to do.

garnet_taboo
Answered 6 months ago    reply

Norene Newquist Doyle thank you even my brain and endocrine are suffering

ballenger.93
Answered 6 months ago    reply

Norene Newquist Doyle that is awesome! I do believe that too! I am finally finally on day four without Diet Coke. Sugar is hard to let go. But I know when I do I feel better. I know that is the only way for me really. Thank you!

ballenger.93
Answered 6 months ago    reply

Norene Newquist Doyle doctors crack me up when you help yourself without them! I got rid of my gallstones and the doctors didn't like that one bit! Some doctor!!

Demetria.D
Answered 6 months ago    reply

Norene what bollocks this is! It is unethical of you to claim that diets can cure autoimmune diseases and that drugs are not the answer! If I didn’t take blood thinning injections every day for my antiphospholipid syndrome I’d be dead several times over. Also I have ulcerative colitis (have had almost 50 surgeries) and I can tell you right now that this is one of the most annoying things we get told (diet will improve your condition). I’m pretty sure it’s against guidelines what you’ve written above!

ballenger.93
Answered 6 months ago    reply

Demetria it is all in what (you) believe in

bensonmerissa83
Answered 6 months ago    reply

Demetria I agree with both, all with caution. I have vasculitis and have to take meds, necessary evil I guess

Demetria.D
Answered 6 months ago

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ballenger.93
Answered 6 months ago

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garnet_taboo
Answered 6 months ago    reply

I support healing in anyh way I can they say remission is rare. it doesn’t seem it from a lot of you here

farr
Answered 6 months ago    reply

I am frustrated by the medical profession. I took Plaquenil got eye damage. I didnt go to a rheumy for 4 years until I got scleritis and had to. Did a run on steroids and was suppose to start Methotrexate. I have not been well emough in almost 6 months to start. I work around sick drug addicts and keep a cold or stomach bug etc.. I was,assured if I didnt start it Id get scleritis again and .aybe lose my sight. Its been 10 months and no meds so far so good. I had am ER nurse tell me that Methotrexate could be deadly if I got staph from one of our patients. There u go.....I have decided Im not gonna do anything unless another issue pops up. People have a right to decide whats right for them. Meds arent a cure all for a lot of people. I have a friend w RA. Methotrexate gave her lung nodules, one of the biologics caused her severe liver involvement. She has had severe shingles due to compromised immune system. Taking meds or not is a highly personal decision. I dont think its right for people to be completely anti medd but its not right either to insist meds are the only answer. I have vaginal dysplasia and HPV. I basically have had to decide risk my sight or get cancer. I am choosing not to do anything

werth_raelene
Answered 6 months ago

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ballenger.93
Answered 6 months ago    reply

raelene look back at what I said.

werth_raelene
Answered 6 months ago    reply

Kali I’m so sorry you are right it wasn’t you who was advocating that drugs are bad and all autoimmune diseases can be cured through diet - it was Norene Newquist Doyle.

My apologies.

ybarra
Answered 6 months ago    reply

Norene Newquist Doyle I left my first Rheumatologist because he was rude when my husband asked if diet can help with Sjögren’s or RA. Doctor thinks it’s silly. He was not accepting any other form except meds. Very arrogant. I’m now seeing a better Rheumatologist, still traditional but never judgmental on the dietary changes I made (gluten/dairy/soy free and low sugar). I’m still working on the sugar-free for now and my Rheumatologist laughs and admits it’s the hardest to do.

Demetria.D
Answered 6 months ago    reply

Kali no absolutely not. I think it’s great to consider diet and other therapy as long as whatever you’re doing doesn’t interfere with someone’s ordinary treatment. Many people with an autoimmune disease unfortunately end up having many autoimmune diseases....some not life threatening and some life threatening. I think it’s dangerous to tell someone who’s history you know nothing about to choose changing diet over drugs. I understand from what I’ve read that those with sjogren's syndrome mostly take things to assist the symptoms (correct me if wrong) but many with sjogren's syndrome have Lupus and APS. APS is extremely dangerous as is Lupus. There are different variations of course but if you don’t know a persons history then implying that diet alone will heal them is wrong.

Demetria.D
Answered 6 months ago

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werth_raelene
Answered 6 months ago

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Demetria.D
Answered 6 months ago    reply

raelene well I guess everyone gets the gist of what we are all saying. I wish I didn’t have so many health problems and didn’t need to take any drugs but I hope to live as long as possible.

werth_raelene
Answered 6 months ago    reply

Demetria just to add here that Sjögren’s can also affect the kidneys, liver, lungs and autonomic and central nervous systems and put sufferers at a greater risk of cancer - all of which put it in the same risk category as Lupus.

You can have it mildly or severely same as Lupus and all the others. The difference is that the other connective tissue diseases do all have targeted treatments. Whereas, so far, Sjögren’s does not.

Sjögren’s is intrinsically connected to autonomic dysfunction/ ganglionopathy for example and there are no treatments for a dysfunctional autonomic nervous system.

This is why so many turn to alternatives - not because it’s potentially less serious. Which isn’t to say we wouldn’t benefit enormously from a targeted treatment if one existed.
https://www.healthline.com/health/autonomic-dysfunction

garnet_taboo
Answered 6 months ago    reply

raelene I’ve heard a dr nemcheck helps autonomic dysfunction in u l i n is one thing they use are u sure there is no help for us affected autonomically?

werth_raelene
Answered 6 months ago    reply

I live in Scotland so no use to me Garnet. I’m sure there are no treatments - although I guess treating the underlying condition is the main thing that might slow it down. Hence I’m on max dose of immunesuppressant, Cellcept. But you have to think that advanced Parkinson’s and Diabetes and MS are relatively untreatable too and these all most commonly associated with dysautonomia

Demetria.D
Answered 6 months ago    reply

raelene thank you very much for clarifying. I’m obviously a newby to sjogren's syndrome but an oldie to these autoimmune diseases. Given what you’ve said this reiterates exactly what I said in my original reply.

werth_raelene
Answered 6 months ago    reply

It does indeed!

perturbed_knopp
Answered 6 months ago    reply

raelene Actually there are treatments that show to be effective for those with AAG, Autoimmune autonomic ganglionopathy (AAG), which by the way is rare. Autonomic dysfunction is not the same as AAG. AAG is many times treated with IVIG therapy. Dr. Vernino at UT Southwestern has done extensive studies on AAG. I have an autonomic dysfunction and suffer from hyperPOTS. Much of the treatment is symptom management like anything else when it comes to medicine as there are no cures at this time.

werth_raelene
Answered 6 months ago    reply

Mine is presumed to be sensory ganglionopathy of Sjögren’s: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4902517/

The problem I have is that all my diagnosis’s are presumed rather than properly investigated - and confirmed - apart from Hypothyroid and Sjögren’s that is.

For example I have hypertension that is assumed by Doctors to be essential - but I think that it is most probably part of my autoimmune related autonomic dysfunction. I don’t have PoTS but my BP swings all over the place, throughout the day so I often feel dizzy or even faint.

I have chronic constipation that is at last being investigated with a barium enema to see whether it is neuropathy related ie dysmotility rather than IBS-c.

The only way I’d qualify for IViG here in UK is if my nerve conduction studies showed clearly that my CNS was involved or if the white matter progressed - in which case I’d probably be offered Rituximab rather than IViG.


hamrickscared
Answered 6 months ago    reply

My immunologist always tell me to take Delagil but I told her it will be better later. Now I am on AIP diet since 21 of December. I hope the best from it!!


feller.bart
Answered 6 months ago

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ybarra
Answered 6 months ago

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feller.bart
Answered 6 months ago    reply

Ybarra some things are harder than others to go give up, we all have things that are much harder than others. Keep going until you find a replacement that works for you-you’ll get there:-)
Have you tried cauliflower rice? I like it sautéed with onions, garlic, ginger and turmeric-tastes so much better than just cauliflower rice on its own and personally I think better than normal rice


h_ricki
Answered 6 months ago    reply

I didn’t take meds for the 1st 10 yrs after diagnosed. I went on Imuran and now I am on nothing and I am doing just fine.

hamrickscared
Answered 6 months ago    reply

Great!! You made me quiet!!

ybarra
Answered 6 months ago    reply

One wow! I hope someday I can be like you. No meds and just doing fine. I was on imuran and that didn’t work, now on cellcept but I have to stop for 10 days, as I’m currently sick and on antibiotics.


dame_jenna91
Answered 6 months ago    reply

I could not function without Cevimeline. Before taking it I couldn't swallow or speak properly and my mouth was a painful burning mess of sores.

hamrickscared
Answered 6 months ago    reply

How long time do u have sjogren's syndrome?

dame_jenna91
Answered 6 months ago    reply

I was diagnosed with sjogren's syndrome a couple months ago. I have had a mixed connective tissue diagnosis for approximately 5 years.


b.68
Answered 6 months ago    reply

I don’t take any meds while asymptomatic, not even plaqueniL. Until I start feeling “sick” I will refuse.


dame_jenna91
Answered 6 months ago    reply

I do believe that the need for medication varies with severity of disease. If your body is actively attacking and damaging your glands or organs, I personally think medicine may be needed to prevent permanent damage. Once you are out of the danger zone, a more natural approach may be fine.

hamrickscared
Answered 6 months ago    reply

I think if kidney is in danger medication is neccessary.

werth_raelene
Answered 6 months ago    reply

Also the brain and nervous system and lungs


crummy.harlot94
Answered 6 months ago    reply

Depends for me I feel if I would have started Plaquinil sooner I wouldn’t have permanent nerve damage and so many neurological symptoms I struggle everyday to just survive. Just my thoughts!


werth_raelene
Answered 6 months ago    reply

It depends how severe your Sjögren’s is


haughton_lashawnda77
Answered 6 months ago    reply

Its been years for me. Ive tried differant meds but side effects were worse.
I get prednisone runs now and then. I take too much ibuprofen but it helps. Valuim for menieres. PRN flexeril for bad leg cramps.


musty
Answered 6 months ago    reply

Humira improves my energy levels. Pain medication and muscle relaxers help with the pain and tension that result from the Sjogren's musculoskeletal pain, arthritis, and Ehlers Danlos chronic pain manifestations. Nexium for the GERD. Advil for the acute presentations of arthritis. Cymbalta for chronic pain and mental health issues that result from living with multiple chronic systemic conditions. Zofran and Phenergan from the nausea that results from all the above. Topical compounded pain cream. I also use essential oils topically, take supplements, use probiotics and digestive enzymes. I unfortunately have not been able to pinpoint any causal relationship btwn diet and my symptoms, but many patients can.


s_nichelle
Answered 6 months ago    reply

I tried to hold out as long as I could with no meds. My symptoms were not debilitating when I went on plaquenil and evoxac. The reason I gave in was because my teeth were suffering (lost two in the last year), i developed exercise induced asthma, and my bloodwork was not improving. So I decided before I get anymore internal damage i better do something. Sometimes we don’t have bad symptoms but the disease is still doing a lot of damage internally.

mcalpine_50
Answered 6 months ago    reply

how do you know you are getting internal damage? is that what the labs are for? so far I am declining plaquenil because what I am dealing with is manageable but I dont want to do myself harm in the long run being stubborn. I honestly just feel like a mom with two toddlers( I am a mom with two toddlers). my weirdest symptom is the fact that I can't have my arms above my head too long. finding something to wear is a task I despise, my closet is made for someone 6 feet tall. I sometimes get on a chair so my arms won't have yo go up as far.

s_nichelle
Answered 6 months ago    reply

I do monitor my lab results myself. I held out for two years before taking the meds. My lab results would increase or stay stagnant high. I just felt that all that inflammation can’t be good in the long run. When I was diagnosed with asthma my doctor and I decided the disease has started to effect my lungs so we figured it was time to try the meds. I have gone on the keto diet the last few months and that has also effected my numbers. They have drastically declined but personally I want to see how my diet effects my numbers long term before I ask to reduce and maybe even get me off the meds.

mcalpine_50
Answered 6 months ago    reply

okay so as long as my labs are good and or staying the same i am okay? I don't get the results at my new Dr. they used to be mailed to me. I probably have to go to some portal. I will ask at my next visit. he suggest I only come once a year since I say I feel fine and don't want to take meds. I think that's too much.time so I am doing 8 mths

hamrickscared
Answered 6 months ago    reply

McAlpine My dr wants to see me after one year.

mcalpine_50
Answered 6 months ago    reply

ok makes sense I was going every 6mths he told me that's really pointless that every year is fine

s_nichelle
Answered 6 months ago    reply

When I took no meds I was also on once a year visits. Now I am seeing my doc every 4 months. I feel sometimes it’s pointless but then again I rather catch something earlier than later. My primary once drew blood and my blood protein was slightly up and she shrugged it off because it was minuscule. But I knew when that number goes up in my body something is up. Sure enough a month later when I saw my rheumatologist finally the number was even higher and I was in the beginning of an outbreak. You will get to know your body and know what’s right

mcalpine_50
Answered 6 months ago    reply

I said I will start paying more attention. it's been 5 years. ...


hamrickscared
Answered 6 months ago    reply

I was asking it because I am afraid of side effects so much.


brash
Answered 6 months ago    reply

i don’t take anything or have in the past- but everyone is different and i am lucky so far where i can still avoid them -i was diagnosed with sjogren's syndrome in 2007 and
RA & hoshimotos in 1998- know i had sjogren's syndrome as long as RA, just never tested for it i think. i take OTC anti-inflammatories when i am having a flare and eye drops as needed but docs always prescribe all the meds, but benefits are still worse than the risks for me so far!! good luck!!


feller.bart
Answered 6 months ago    reply

Also just to note that my rheumy told me they don’t (or try not to) prescribe medication unless it’s gone to the organs-unfortunately mine has but I still am determined to go without for as long as I can.


ilana.s
Answered 6 months ago    reply

I don’t take any Sjogren’s meds. Diagnosed in 1983. If I have a bad flare up where my parotid glands swell too much, I go on a course of prednisone, but that happens very rarely. I do take Ultracet on a regular basis to help manage pain, but that is mainly caused by spinal issues and unrelated to my Sjogren’s.


jannette
Answered 6 months ago    reply

Ok seriously I could not live a day without eye drops!! I always laugh and say in a zombie apocalypse I’d be first because I’d have no eye drops so I’d rip my cornea and wouldn’t be able to see!! Out of everything I need those drops I could go without everything else if I had too.. http://s2.quickmeme.com/img/1e/1e81b7469948f0d7dfa7809b337cf841baeea7bad65337ac731034974eb3b6b7.jpg


r_carlos87
Answered 6 months ago    reply

All I know is that overall, I have worsened with meds.


hamrickscared
Answered 6 months ago    reply

I use Optrex spray recently instead of Systane. For dry mouth I started to use Parodontax mouth wash. I have allergy for sweeteners in drops and gums.


emagan82
Answered 6 months ago    reply

I take medicine by choice had headaches so bad I wanted to shoot my head off not that I had wanted to end my life I wanted the pain to go away. I have been in remission over 16 years. I do not want to in a flare


mcallister_boastful
Answered 6 months ago    reply

They took me off Plaquenil for awhile and it was horrible. So much pain I couldn't stand it. Went back on and even though I'm not pain free it does help a lot. I used to also take Tramadol but they took me off that because it's now considered a narcotic and didn't want me on it.


roxane_70
Answered 6 months ago

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hamrickscared
Answered 6 months ago    reply

Dear Roxane, you are right and I wish the bests for both of us. I have lost much hair also and it dod not stop only slowed a little. I am going on aip diet amd I hope it will be better

roxane_70
Answered 6 months ago    reply

I've been on a diet that my Dr recommended because I lost a lot of hair recently. We thought it was from my tuberculosis no it's from low b12 levels. So I do weekly injections instead of one a month.

A.Kindra
Answered 6 months ago    reply

I have Long QT. My
Dr says if it’s not the genetic strand, it is the medicine induced kind. I now know that a bunch of the Meds I was on to treat symptoms for undiagnosed sjogren's syndrome, definitely can cause it.


mears
Answered 6 months ago    reply

I am on a lot of medications, I wish I wasn't. My thyroid, depression, blood pressure, etc.

I hate going to the pharmacy regularly.

demure.dawes
Answered 6 months ago    reply

Do you feel old from all the meds? I take so many that the pharmacy staff know me and the pharmacist and I are buddies now. (We both are public health geeks).

I feel old.

mears
Answered 6 months ago    reply

Sheilah, I have the exact same relationship with the pharmacists. It's a little embarrassing at times, it really is. And going to visit family, pulling out my separate medicine bag, I don't even want to know what they think of it all.

Yes, I feel well beyond my years.

demure.dawes
Answered 6 months ago    reply

mears — me, too. I have to travel with a collection of stuff for chronic migraine and the stuff keeping the possible sjogren's syndrome in check. I keep thinking that I should just get extra heating pads and such to put in my luggage.

I did buy a nifty pill organizer just for travel.

Hang in there.


merry
Answered 6 months ago    reply

I need no medication if I follow a low salicylate diet.


demure.dawes
Answered 6 months ago    reply

Oh heck. I’d last a day or two, tops. I use opioids because I can’t take NSAIDs, so stopping would suck immensely.


hamrickscared
Answered 6 months ago    reply

What is NSAID?

demure.dawes
Answered 6 months ago    reply

Non-steroidal anti-inflammatories. Like Aleve/naproxen sodium and Advil/ibuprofen.

hamrickscared
Answered 6 months ago    reply

Thank you!!


satisfied_package90
Answered 6 months ago    reply

I would not be around without mine. My stomach and esophagus have permanent damage and scar tissue now from bleeding ulcers multiple times. I could not eat without medication to keep the ulcers controlled.


specificbauble
Answered 6 months ago    reply

Can’t live without my thyroid meds more than a week tops, and asthma meds.


lam
Answered 6 months ago    reply

So far I'm allergic to all we have tried except muscle relaxers, pilocarpine, LDN and sleeping pill. I also take Imitrex for migraines.


roxane_70
Answered 6 months ago    reply

I couldn't survive sjrogrens has caused a heart condition and I take meds for that also.

hamrickscared
Answered 6 months ago    reply

What meds do you use?

roxane_70
Answered 6 months ago    reply

Letaris,revatio and fursemide not sure on last spelling. My heart condition is not curable, only treatable for me with meds.

hamrickscared
Answered 6 months ago    reply

sjogren's syndrome caused it?

roxane_70
Answered 6 months ago    reply

Yes


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