Has anyone stopped all RA meds due to awful side effects?

[Hisue]

Wondering if stop RA meds what will happen?

[AgedCrone]

Not a good idea Hisue.

If you are struggling ....ask your rheumy nurse about either discontinuing one drug at a time to see if that helps.....or if a complete change of drugs would help?

But just to stop everything without medical advice is probably not wise.

I honestly think there will be a drug for you...I took years before I could say “At last something that works”

So talk to your medics.

[Hisue in reply to AgedCrone]

TY. Makes good sense.

[wishbone]

Yes, on two occasions. The first was a few years ago when I decided to abstain from meds following a serious infection, without informing rheumy I may add. It was several weeks before my RA kicked off, and when it really got hold I experienced a prolonged debilitating flare from hell that not only seriously immobilised me but almost certainly caused irreversible lung damage.

More recently I've been off meds for the last 8 or more weeks due to a sinus infection and leg ulcers. This time under rheumies supervision!...once bitten!...or is it mauled!! My RA has got worse but is mercifully nowhere near as bad as that first time.

We are all different, and I have other health conditions which cause my problems rather than actual side effects from the meds. If you feel you would like to try dropping your meds then just be sure to talk with your rheumy first like AgedCrone advises.

[Hisue in reply to wishbone]

TY, Good advice.

[Mmrr]

If the side effects are intolerable you as others have said contact your rheumatology department for advice. Don't suffer in silence.

[Hisue in reply to Mmrr]

TY. They don’t seem to care about side effects- just shrug & say: here is a pain killer or anti-depressant or such to cover it up. I don’t get it.

[dembonesDAMNBONES in reply to Hisue]

Big Pharma and MD business deals.

Pills to counteract pills to counteract.....

That's how they roll, sometimes.

A well patient is a lost customer.

[oldtimer]

Now-a-days there are so many different treatments that it is worth carrying on searching for something that will help. Have a look at the treatments pages on the NRAS site and go through how many you have tried so far, and what is left.

You should not have to suffer unacceptable side effects from medication.

[Hisue in reply to oldtimer]

TY. Website was very informative.

[Grayling]

Don't just stop mate without medical advice. Due to chest infections I had to stop taking my meds for four months, the idea was to clear my system, all hell broke loose my RA returned with an vengeance, I was crippled up and in a mess, and this was with control from the hospital, I got straight after some months. Please don't just stop, get advice and help from your rheumy nurse, I hope this helps, good luck to you mate. I know it's hard work but chin up.

[Hisue in reply to Grayling]

TY. Good advice.

[rosie1928]

Yes. I had a major accident last year and to enable the wound to heal I have to go off methotrexate. After a year the RA came back with a vengeance!

It's not been easy going back on it ...I got nausea and felt sick. My rheumatologist has changed it to half the dose twice a week .

I'm really persevering with the methotrexate as to me it is a wonder drug.

Only been a few weeks and last night my knee locked up.,,had me groaning in panic. I can't sleep with the general pain, it seems to be in my muscles as well.

I did consider taking the drugs at all but I thought about the secondary conditions RA can bring and that is heart and lung problems.

[KittyJ]

No I haven’t. I wouldn’t risk going back to the state I was in before meds.

I hope you’re not thinking of just stopping meds without your rheumy knowing? What are you on and what side effects are you having ? Have you told your rheumy about it as they may be able to suggest something to help?

[Artroc56]

I just kept moving on until we hit on the drug that did work with tolerable side effects.

[dembonesDAMNBONES in reply to Artroc56]

And THAT, for many, is a constant and price that has to be paid...the tolerable side effects!!!

Good point Artroc!

[cathie]

I was taken off all my meds a few years ago, it was catastrophic. I changed consultants am stable now, but it took a few years to get back. I’ll never have those years again

[Troygirl]

I WANT TOO.

They are not even working. Tried so many and worse off now with all the nasty side effects than when I was first diagnosed.

Why keep putting this very bad poison in my body day after day, month after month, year after year when they do nothing! Still need 15mg prednisone everyday and have been taking that much every day since dec 2018.

Most recent poison is 4 months of IV infusion Actemra which is doing nothing but making me sicker.

[marvalusxoxo]

Well..I am presently not taking any. As a nurse myself I know how devastating to the body meds can be but I also know that there's is a time when they are inevitable..for instance, prednisone for my sjogrens syndrome. I also do a great deal of reading about my condition and how I can best live with it. Eating healthy and appropriate exercise are very important as well. Keeping inflamation at bay is crucial in RA due to the fact that it is inflamation that causes the damage to tissues and bones and joints and organs...but all the meds are also very damaging to certain organs as well like the kidneys for example.

[dembonesDAMNBONES in reply to marvalusxoxo]

Liver, kidneys, stomach, eyes...the list goes on.

[Hisue]

Wow, no one ever explained to me that reducing inflammation is the target of RA treatment. It is wrong for drs to just push patients thru w/out explanation. Patients will be more compliant & less fearful if things are explained. I do try to read up. TY for the good advice.

[marvalusxoxo in reply to Hisue]

You are very welcome☺🌸

[marvalusxoxo in reply to Hisue]

This is a very debilitating desease so I personally chose to know as much as I can about it and then along with my drs. make the best clinical decisions for my health.

[Hisue in reply to marvalusxoxo]

Yes, I wish the diagnosing GP & rheum would have been straight with me about the seriousness of this disease. Being so sick& w/worst pain ever, limited my functioning & resourcefulness. No dr has discussed a treatment plan w/me, offered an office rheum nurse, or team approach. In and out. Also, biologics retail at about $10,000/mth here.

[marvalusxoxo in reply to Hisue]

I totally understand. I could not afford such an expense.

[Hisue in reply to marvalusxoxo]

I have RX insurance but it only pays 80 percent. I have since found out that a caring dr or Rn can get a patient into a clinical trial, patient assistance program, or free sampling if they need biologics.

[wishbone in reply to Hisue]

It was RA inflammation that damaged my lungs. There's no getting lung function back from this type of lung damage like you can with methotrexate as GranAmie did in her post below. In fact it often gets progressively worse....I live in hope! Speaking of which, I'm having my annual lung function test in a few hours time, so wish me luck!

[dembonesDAMNBONES in reply to Hisue]

This is achieved through suppression of your autoimmune system, because, basically, it's attacking you, the host, causing the inflammation of your joints.

The suppression, however leaves you susceptible to other conditions.

It's about striking a balance.

[GranAmie]

do a daily diary of all yr pains etc and talk to rheumy nurse ASAP; it may be that something u r on is not good 4u. sorry 4 s/hand... hands iffy 2day. After several MTX months a cough appeared... they did xrays, stopped it and back into w/chair for me [lung damage]. now on bio truxima since 2017 summer and sooo much better... so get them to check yr meds. walking now, swim, sing [both helped get back lung functions]. shout til they hear you. wishing you well x

[Hisue]

Good suggestions. TY. My US rheumy nurse is no help at all; need to change drs. I’m wishing I was in England. Evidently you don’t have to be a good dr or nurse here to make a lot of money & give poor care.

[marvalusxoxo in reply to Hisue]

You may be right yet no matter where we go we'll encounter those in a certain profession that may lack that compation and desire to truly serve or help others instead they may do it only for the money.

[Hisue in reply to marvalusxoxo]

You are right- I get it now, I was dumb enough to think dr cared; he cared about money, has 3 offices and no covering doctor. In the US, doctors can refuse your insurance or fire you for complaining. I have learned that if they are available right away for new patients without referral -they are usually bad!

[marvalusxoxo in reply to Hisue]

You are much right. That is why it is imperative that a patient be well informed not only of his or her condition but also health policies in their respective place of residence. Also, not all countries jabe the same health care system.

[12Chrissy34]

I came off my meds in early August and am waiting for the next (new) set to start. The RA just comes back. Strongly recommend that you speak with your medical team if you're having trouble with your side effects!

[dembonesDAMNBONES]

Stopped taking everything three weeks or so back.

A newly developed eye problem, a probable stomach ulcer (had ulcers before), constant nausea, tremors and jitters, inflammed and painful kidneys, ineffective painkillers, etc.

The side effects outweighed negligable benefits.

I phoned my rheumy two weeks ago to see if I could bring my appt for next month forward and I've been given a nurse appt for this afternoon (She's not long off the phone to me to verify I'll attend) and will see my rheumy as scheduled, next month.

Phoned my GP two weeks ago, also, who phoned my rheumy.

I like to get everyone on the same page.

Yes, I've been in constant agony, but know I'd have been in worse trouble, had I continued with my meds.

Wise counsel has advised you get in contact with those treating you first.

I followed that course myself, about five weeks ago, when my GP and I discussed my rising concerns and I'd said I didn't want to prevent the meds having a fair chance.

They had their chance.

They did me wrong! (Blues music howls mournfully in the background. Lol).

You and I might get lucky this time round.

If not it's back to the drawing board.

You will have this disease for the rest of your life, so it's worth your while to study it.

Keep asking questions and you'll keep getting answers.

One thing that stands out in your comments and replies on different posts is those employed in looking after you are somewhat wanting in explaining or compassion.

Prepare a list of questions for your next consultation and take notes of the answers.

If your specialist is unsympathetic, then change to someone else.

Me, personally, I have little time for such folk, so I'd ensure the person knew I'd brook no nonsense and they'd pay the consequence, if they tried, but I understand not everyone is as self assertive/bloodyminded/beligerent/determined/litigacious as me. Lol.

[MargaretStirling]

I saw my consultant 4 weeks ago and he told me there is nothing else he can do for me the Methotrexate injection had for 2 years they damaged my kidneys took it in tablet form they didn't make it any better it affected my blood I'm still on hydroxicloycine qui Sulvizaline I've been on for 12months he said everything he has prescript. Hasn't helped any given me more problems Steroid injection can only have 2-3 a year he told me to stop everything I already have osteoporosis and osteoathrities and RA I have lidocaine Patches you get them different strength they do help stronger. Strength does help I'll just have to find alternative medicine I have to do a little researching to find something other than tablets. something to kill pain but not harmful for my damaged kidneys stomach and lungs.

[Hisue]

Sorry you are going thru all that. This disease is so awful.