What is the next course of treatment if NONE of the R... - NRAS

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What is the next course of treatment if NONE of the RA medications work?

Troygirl
Troygirl
25 Replies

Anyone know what happens if after many many attempts of different RA medications such as Methotrexate, Humira, Enbrel, Xelzanze, infusions such as Acterma and Remicade do NOT work on me to combat endless inflammation & endless flares?

I cannot stay on high does of Prednisone forever. That crap is already doing way more harm than good being on it for so long!

What's next?

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Savannahseger

Hi there, I feel your pain as I am in the exact same situation and not feeling happy about being stuck on steroids either... Unfortunately I think it's just a case of staying positive and to keep trying what's being offered... I've got two new drugs to think about (one called a Jaks-Kinase inhibitor) and I don't think it's widely available for many... I'm not sure whether to get my hopes up for it, as I assume most treatments are going to fail me anyway.

I know how rubbish it is :( I just keep thinking, eventually something's got to work, right? In the meantime I do all I can to try to look after myself, keep stress levels down when I can, eat well, etc.

Keep pushing your doctor if you think you should try a new direction though, or if you think they aren't doing enough. I've got to the point now where if i ring in a flare, i'm seen either the same day or lastest a week later. I see it as my job to push and be assertive until i get what I need xx

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GonadnadBigstix

Hi, the only thing left to do, A saw and that’s better than the axe, although somewhat slower. Only joking lol.

And to be honest I don’t have a clue.

You’ll get your answers from one of the lovely people on here as you may know.

Hope the answers that you seek won’t to far away.

Philip x

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wishbone

I'm in a similar situation, except my meds problem is due to infections and not because they don't help my RA. I've recently had to come off baricitinib due to sinusitis. As far as I know baricitinib was my last hope. Even steroids are a no no. Can but hope the sinusitis goes then I might be able to go back on it, or maybe try another JAK Inhibitor.

Anyway, just been discussing this over the phone with the rheumy nurse. When I expressed my concern about the meds cupboard being bare if I can't go back on baricitinib, her answer was - try not to worry as new drugs are becoming available all the time. Call me a pessimist if you want, but that doesn't exactly fill me full of hope with my particular issues. If this sinusitis doesn't go then it could mean surviving on just strong pain killers and the odd anti-inflammatory, which I'm doing now. I also have problems with anti-inflamms as well...surprise surprise.

Apologies for the negative post, but just saying it as it is.

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BonnieT
BonnieT
in reply to wishbone

A friend who also has RA said her only hope was leflunomide (spelling?). It has worked for her. She said it was expensive and that all health plans don’t cover it.

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wishbone
wishbone
in reply to BonnieT

Afraid leflunomide's also a non starter as are all DMARDs. Reason being is they can cause problems with this stupid RA related lung condition I have...at least that's my understanding of it.

Thanks for trying. :-)

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helixhelix

That’s awful for you. All I can say is that new drugs are being developed all the time. In just the last 10 years we have had about 15 new ones at least. So maybe one coming along soon will be the right thing for you.

In the meantime a long talk with your consultant about trying some of the less commonly used drugs like mycophenalate or aziothioprine. Or some of the more alternative approaches such as low dose naltrexone, or the antibiotic minocycline. People have had success with these.

Good luck! Hope you find something soon.

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BonnieT

A friend with RA has told me she’s very happy with leflunomide. But it’s supposedly very expensive. I’ve just been taken off methotrexate and im afraid of the effects of prednisone as well. I’m going to ask my rheumy about leflunomide at my appointment next week. My spelling might be off on the med but it’s close.

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AgedCrone
AgedCrone
in reply to BonnieT

Leflunomide costs between £20/£25 per month.

I was prescribed it by a private rheumatologist and my GP refused to sign the Shared Care Agreement, so would not sign my prescriptions ...as far as I could make out he had no idea what it was and didn’t want the responsibility . I had to buy my own for a few months until my rheumatologist had a word with my GP .

That was about 5 years ago.... I shouldn’t imagine it has increased in price since then .

The expensive drugs are the Biologics....which follow Dmards if your rheumy can’t find a suitable cocktail of Dmards to control your symptoms.

Although now that Bio similars are being introduced, even the original biologic drugs are coming down in price, because health authorities are switching to Bio similars and the original manufacturers are coming to agreements to drop their prices.

So all is not doom& gloom on the drug front.

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nomoreheels
nomoreheels
in reply to BonnieT

Leflunomide is £5.80 or £6.15 per packet of 30 here in the UK, depending on which drug company's generic is prescribed. The originator & first licensed was more expensive at around £50 but I wouldn't think that would be prescribed given CCG's are hot on GP Practice's prescribing budgets ensuring the cheapest is usually prescribed. I don't know how much it would be there I'm afraid but not much different I wouldn't think.

It wasn't for me unfortunately & I can't say it helped either but that's not to say it won't for you, hope so anyway.

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gtate1914

Have you considered CBD oil? Do your research. It is a proven fact it is an excellent anti inflammatory and helps with pain. And no side effects. Do your research and see what you think. Here's a good place to start.

projectcbd.org/cbd-for/infl...

It has helped me tremendously. Presently at 10.5 mg about to go to 10 mg after being stuck at high dosage for a long time.

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Troygirl
Troygirl
in reply to gtate1914

The real CBD oil is illegal in New York State.

To be able to get the "real deal" you have to find a doctor, they are far & few in my county and you have to enroll in the NY State medical marijuana program.

There are so many hoops to jump though to get this card and they make it very difficult to get! However I am working on it.

I tried the regular CBD oil that is legal and it does NOTHING for me!

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turtlemom2
turtlemom2
in reply to Troygirl

Yay! the CBD oil was signed into NON illegal status in GA. When will we be able to get it? that's another story..... no idea

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dzander5

Hello! I too was in same situation. I am now on actemra as my insurance wouldn't approve any other meds(not that there's any left) until I tried this one. I've been on for few months now and weekly not biweekly, it has helped some, but I still have pain in my hands and knees daily, just not as severe. My Dr really has run out of options for me.

I'm sorry to hear so many of us are in the same boat! I rely on my pain management Dr to help with my joint pain as well as other issues I have (back pain & neck). I've tried massage, cryotherapy, compression devices, tens unit........😔 I just try to stay positive everyday, because each day can be so very different from the next.

Hugs to all

Deb

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chalky1938

I do not have it anymore as it made me so bad

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Damaged

So sorry his is happening for you Troygirl. I also went through endless drugs for almost four years and yet I did find one that worked , for me.

Do not feel discouraged there are new treatments developed regularly.

I am not sure about UK and CBD oil but it was a great alternative for me. I am allergic to Naproxen so all anti inflammatories and do not respond well to steroids. I am not allergic but it makes me “Bat Shit Crazy 😜 “.

My daughter just graduated its biochemistry and molecular biology degree and is starting her Masters in the fall. I have been participating in endless research projects as well. Good things are coming so hang tuff !

It is so hard to stay positive but it is essential for your wellbeing. My mantra has become “this to shall pass”. I do not have a lot of choice about how this has impacted my life but I will never go down without a fight. So keep fighting for what you need and what you want.

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hannaha123

I know how you feel none of those medicines worked for me either I have tried all of the meds there is for arthritis. I am now on tocilizumab and occasionally use cbd oil when I’m really bad which isn’t very often I would recommend trying. Hopefully they will find you the right medicine it took me years to find one that works for me. I also found it good to read up on medication before my appointments and then suggested them to my doctor. I was about to give up when nothing else worked I heard about tocilizumab on an arthritis page and asked my doctor about the med and he put me straight on it.

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Troygirl
Troygirl
in reply to hannaha123

Tocilizumab Infusions (Acterma) is what we are trying for the latest go round. Latest blood work 3 weeks ago had SED at 63!

And I wonder why that yet again another morning with my wrists STILL in a terrible flare until I get my morning dose of 10Mg prednisone!

Plus, Have to wait a couple hours for it to kick in. Even tried to set alarm to take earlier. But then by late day the prednisone wears off again! If I split up the prednisone for am & pm then the the flare will NEVER cease at all, all day!

My main mission is to get OFF Prednisdone not have to take 1mg More!!

Over the many months, I reduced from 25mg to the 10mg and the flares are still happening (going on 7 long months) and just have it to a level to just take the edge off the pain! But I refuse to take any more because prednisone is doing some serious things to my body for being on it so long!

My long thick hair has become thin & actually many sections have broken off in half, have Cushing Goid now (2 round fat pads sticking out on both sides of my neck, fluid retention, (now have to take Lasix), gained 20lbs (I am a very petite person so 20lb is major), shortness of breath (from all the fluid buildup) & the dreaded moon face, pretty much every single bad side effect from Prednisone...I have!

That's why I need to find a RA treatment that actually works! I want OFF prednisone!

I AM AT MY WITS END!

I am beginning to wonder if I even have RA because none of the RA medications work on me!!

Could it be something else?

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Tgdn

hi so sorry to hear about your situation.,i've only tried Humira for ankolysing spondylitis,with very bad reaction so had to stop it.,after i've stoped using Humira i've had an onset of very bad case of pppsoriasis,fist time in my life.,tried steroids oral prednisone and all topical for psoriasis,very bad reaction .,in the end stoped all of it accept naproxen,use supplements hemp seed oil capsules,turmeric,fish oil and vitamin d,and exercising,.avene akerat 10 for my feet.,so for now ankolysing is ok under control (wet and cold weather not so great but manageable).,and no psoriasis whatsoever for 2 and a half yrs (touch wood).,i really hope you find soon what works for you,as i did.,so sorry i couldn't help.,

best wishes

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Paisley58

Was in the same shit-uation as you for a very long time, however, I have found the combination of Leflunomide and Ritixumab infusion useful. Just keep talking to your team and working on getting them to understand what your needs are; I pray they find a combination that works well for you, don't give up hope something will work.

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Condessa2001

I was exactly the same with Humira. I had a series of bad reactions which required hospital admittance. I also had never had psoriasis in my life until those injections. I was switched to Enbrel which really got things under control but had to switch when the NHS switched to Benepali. I told my rheumatologist that Benepali isn't as effective as Enbrel as my joints are inflamed and painful, only to be told that I must be the only person on this planet to think that. I know that I'm not but because my blood tests are ok I have no chance of being switched back. After the Humira I noticed that the letters to my GP changed from RA to Psoriatic Arthritis. It isn't and as I said, I never had psoriasis until I started the Humira. Psoriasis has virtually cleared which the rheumatologist says is because of the Benepali. I'm so angry.

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Hezekiah

Even if you are the only person on the planet, your consultant should still allow you to switch back to Enbrel because it works for you.

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Hezekiah

Hi Condessa2001, I was reading on through subsequent posts, and came across one from Mmrr in this thread. Worth a read as it might help you to manage your consultant in a way that is more satisfactory for you healthunlocked.com/nras/pos...

Best wishes to you

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Paisley58

How awful and how bloody rude. You are not the only person on the planet, I hate when doctors think one size fits all. I have been through the lot and I to had all kinds of allergies, skin conditions and as soon as I was taken off, I was better. Enbrel was the best and worked for 6years and then it stopped working which my Rheumy told me can happen. I spent another 4 years on various other treatments until they found one that worked. Don't let them silence you, you keep speaking up, change your Rheumy if possible but don't be bullied into taking something that doesn't work for you. I really hate the thought of anyone suffering needlessly because a doctor is to lazy to really listen to his patient.

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Mmrr

I don't believe I am as far down the road as you, but I have 4 failed DMARDs and now most probably a biologic behind me. I'm in almost a constant flare with brain fog and fatigue whilst taking prednisolone every day. I've been on prednisolone for 16 months without a brak now.

I cope mainly well, but do have times when I think will this ever be brought under control? All we can do is keep plodding on and hopefully one day something will work.

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Paisley58

I really hope they find something soon. I was on Prednisolone from 2002 until 2004, the highest was 180mg. My GP was alarmed by this, I was in a real state, he wrote to two other hospitals and that's how I got the Rheumatology team I have now, who very quickly weaned me off the Prednisolone. Compared to then I am in a much better place now, I hope and pray this will end for you soon and they will find something that works. Until then keep hope alive and I will will praying it all comes right in the end.

Have a good evening!

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