NRAS
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Your experience with RA treatments

This isn't really a question but rather a call for help. I've been on MTX Injections for the past 7 months and I'm not happy with the results of the treatment at the moment. I know it takes some time to take effect but the side effects and the impact it has had on my mental health combined with the pain are too much to take and I'm sure that there are better options for me. I've been doing some research on every other type of drug or natural remedy and I would really like to know what your experience with different drugs has been like! I'm seeing my rheumy in a month and by then I want to have all the information I need to make a change with him :)

Thanks to everyone in advance :D

Isa

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There isn't an easy answer to that question. What works brilliantly for one person will be rubbish for you and vice-versa. And that goes equally for conventional and alternative treatments. Unfortunately until better ways are developed to work out what suits each individual the only approach is trial and error and the experience of your rheumatologist.

There are standard pathways developed by NICE based on collective experience, but again that might not work for you. Personally I feel that it's worth doing as much as you can to keep your body healthy (destress, maintain good body weight, sleep, eat, exercise and don't smoke) and then listen to what your rheumy suggests.

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You're absolutely right & thank you, I'm giving my best to do so.

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I just started Prednisone 5mg and Xeljanz ER two-three weeks ago. My rheumy's said Xeljanz can show quick improvement in 2-4 weeks. I think it is starting to to help, but I will have to stop taking it prior to my upcoming surgery (not sure exactly when I stop taking it.). Are you in the UK? Do they have Xeljanz ER there? I know the Xeljanz company offers assistance if your insurance doesn't cover it. I have (thankfully) avoided bring prescribed MTX. But, I also am new to my diagnosis. I was diagnosed in March. I do take Sulphasalazine 500 mg 2x a day also. Good luck to you. Blessings and hugs!

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Thanks for sharing that, I'm in Switzerland, not the Uk. I'm not sure if we have Xeljanz ER here but I will check with my rheumy :)

Take care!

Isa

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Hi, I'm just starting my 3rd treatment. I was diagnosed 3 yrs ago first put on methotrexate but I couldn't take the side effects and felt constantly nauseous and unwell, was then put on sulfasalazine 2000 mg daily it had some side effects but they weren't too bad so I stuck with it until, after around 18 months when it's beneficial effects stoped working, so it was then increased to 3000 mg a day unfortunately the side effects which were livable but anonying became worse i.e stomach pain, tinnitus, headache, blurred vision 😖 So I was promptly taken off sulfasalazine and also off from work for the last 4 weeks. During this drug free time , although I'm taking naproxen or codine for pain, I've felt much better, I've slept really well and felt like myself again. Unfortunately now I'm just starting on leflunomide it's just the second day so I'm really hoping this is the one to help me . I've cut down on sugar, I'm trying to eat anti inflammatory foods and have started having a turmeric latte in the morning but it's a constant battle one day your up and the next your down.

Hope you find the right combination of medication to help you.

I've found myself that everyone I've spoken to has very different experiences with this disease which makes you feel very alone.

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Hi, thanks for sharing your experience. I'm in the same situation with MTX right now, which is why I really need a change. I've made some changes in my diet aswell, adding anti inflammatory food and spices and removing meat.

Good luck with Leflunomide, I hope it works out for you!

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I stopped the triple therapy drugs 6 weeks ago. The depression and blurred vision have gone, the bright red knuckles have faded and inflammation is barely noticeable. I have more energy and want to get out of my chair to do jobbies. I feel happier than I have since this time last year. My long term swollen arm is getting thinner, I'm wearing boots that I haven't been able to get on for over a year. I've got a box of paracetamol and a bottle of cbd oil, plus my exercises and the dog. I'm looking after myself for a while.

I've never been one for the quacks, I feel they are biased in some ways. I can work out any exercises I need for myself, I'm not keen on physiotherapists either. I can bind my own thumbs with tape or elastic when they are bad. I don't totally avoid pain as it often goes off when I'm working. I never carry on with a job if I feel that nasty grating and crunching sound in a joint. Out with the tape or a tight glove and off I go again.

Build up your confidence, do research, believe in yourself. Your body, your mind, your choices.

Yes, of course I will be back at the GP's if things go pear shaped, but I don't need to just now. Every day that I'm not taking Methotrexate, Sulfasalazine ,Hydroxychloroquine, Naproxen and Omeprazole is a blissful day.

By the way, I was frightened of stopping the Omeprazole. I'd been taking it for over 8 years. Lo and behold! my stomach has been perfectly well behaved. You never know until you try!

Susie

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Thank you so much for this great reply! I'm looking forward to making more changes in my life aswell in addition to dogwalking and swimming which I do a few times a week. I hope one day I'll be able to go drug free too, right now I don't think that's right for me becasue I'm young (18) and feeling all my joints slowly falling apart is terrifing and I feel like I still need drugs to keep that under control.

But your reply really makes me believe in a bright future, so thanks again and take care :)

Isa

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I must say Susie I do like your attitude, I was very tempted to go drug free after coming off methotrexate then sulfasalazine I've just had 2 weeks where I've actually not felt this well since diagnosis. My thoughts are that if I'm not happy on the leflunomide then I'm stopping drugs altogether, well for a while at least. Could you tell me what cbt oil is?

Sue

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CBD is a cannabis extract that is legal in the UK. It does not contain the hallucinogenic compounds that pot is known for.

The human body contains a system called Endocannabinoid System (ECS). ECS is made up of receptors found in the brain, skin,all the internal organs, nervous system, immune system, etc. The body makes compounds that fit into the receptors of ECS and CBD oil contains similar compounds. When the receptors are empty many functions that happen in our body can be out of balance, ( this is a very sketchy and basic description ), for example mood, stress, sleep, immune system......Sometimes our body doesn't make enough so CBD oil may help to top it up. There's lots of information available, it's probably best to read up on it yourself as we all read things a little differently. I bought a 10 ml bottle of the weakest oil to try it out and realised within 3 days that I was taking less paracetamol. As I hadn't changed anything else I believe that it is working for me. I haven't needed the Paracetamol for a week now, that's the longest I've gone without for 18 months.

It tastes utterly foul. If you've ever rinsed an old ashtray out........that's what it tastes like. It's sublingual though so if you are clever you can keep it under your tongue for a couple of minutes then have a great gulp of juice. It taste so disgusting , it should work!!

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Just wanna add something to this: I've been vaping CBD Oil for the past couple of weeks and it has helped a lot with side effects of MTX and pain. It has a faster effect (just a few minutes or less) when you vape it and it doesn't taste bad at all, so I really reccomend this if you're having trouble with the taste of CBD Oil :)

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Isa, which brand of vapouriser do you prefer? There are so many, I like the look of the German ones but I can only buy via the Internet.

Susie

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I get mine from here: cbdking.ch/collections/cbd-...

I haven't tried anything else yet but I'm pretty happy with this one

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Where do you get it from ? Thanks

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That's what I've done Susan come off Leflunomide after being on it for over 2 years. Was great at first but now feeling so unwell and terrible night sweats. The fatigue has been awful so have stopped Leflunomide meantime. Will probably get worse when weather gets colder have to wait and see.

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I hated lefluemide it made me Very unwell with constant urine infections. After 20 years of various drugs ,two knee one hip replacement I'm now on Embrel an feeling good ,no side effects so far .

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I waiting for hip replacement but definitely feeling better since I stopped drugs. Will see Rheumy Doctor in February so hopefully can hang on until then.

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I know just how you feel having been there myself....many times, but I really do advise you not to try self diagnosis re medication....especially via Dr Google.

Why not make a note of everything that you think is caused by your Mtx injections & discuss it with your rheumatologists?

One person can have great success on a certain drug...but it will not suit another. Your rheumatologists will understand why this happens as they will have seen it many times before & know how to deal,with it.

Every single one of us has a different underlying cause for our RA.....so of course we all need individual meds....but finding that one that is right for you is not at all easy.

But keep your Rheumy on side....probably best not to mention Dr Google.

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Hi, yeah that's what I'm trying to do :) The thing is, when I was diagnosed my rheumy simply said you have RA and you're going on MTX. I had no idea what that was so I didn't ask any questions and he didn't tell me anything so I wasn't prepared for the side effects at all. Now I'm seeing him in a month and I'm planning on asking him to explain to me the differnet types of treatments and drugs but I want to be informed already so I can ask him more questions. I want to take the desicion on a new therapy with him TOGETHER and I don't want him to just tell me: okay just take that other drug.

I just wanna be prepared! :) Thank you for the reply

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Now this is how it should go, the decision is made together. This is what EULAR recommendations stress as the most important and this is what seldom happens:( We should start looking at doctors as suppliers of a service that we need, not like gods. If we are not happy we should look for better service elsewhere. It is really shameful how chronicly ill, anxious and stressed out patients are way too often treated by the medical professionals:( This does ofcourse not mean that there are really wonderful and caring doctors out there too but you as a patient have no unwritten obligation to remain with a doctor that you feel doesn't help you!

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Yes it is a shock to the system....especially when you read on here all the bad side effect from lots of the prescribed drugs....I suggest you don't expect every bad experience you read about here will happen to you...read those posts & pass on.

I was extremely lucky being diagnosed by a professor of Rheumatology who was a colleague of a doctor friend...so I could ask lots of questions without having to go back to the Rheumy & ask all the simple questions that you think of after you leave your Rheumy Appoinments.

I still write all my questions down & go through them every time I see my present Rheumy.

Also make a friend of your rheumy nurses. They are highly trained & most will have a telephone number you can contact them on between Appoinments. They are more down to earth than rheumies....especially about the timing of taking meds..

But don't read about a drug that you think will suit you just because it's new & ask to be put on it. Your Rheumy will have studied all your test results & will have prescribed what he considers your best option. Mtx had been around a long time, but it still the Gold Standard Dmard most rheumies start you off on....but people don't often post how good it can be. I lived a normal painfree life for 7 years with no obvious joint damage before it stopped working for me.

Now I'm off back to my sun bed by the pool...it's 80° F here this afternoon....think I might stay forever!

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As others have said, it's kind of trail and error. I've had ra for 36 years since I was a kid. Some how I've gotten by without taking methotrexate. In the beginning, there really wasn't anything for ra, except gold shots and anti inflammatories. I tried the gold and it did nothing. I don't know how I got through so many years without anything except nsaids. I consider myself fortunate that I did not become disabled. I finally found humira which worked wonderfully for 14 years before it stopped. It put me into full remission. My doctor thinks I built up antibodies to it. Now I'm on orencia and sulfasalazine. They seem to be starting to work. Along with the medications, I have recently changed my diet. I have cut out gluten , dairy, and sugar. It's difficult, but I really do feel better. I researched foods that can cause inflammation in the body and those seem to be the culprits. Also I started taking turmeric, tart cherry, and fish oil supplements. They too are supposed to help calm inflammation. They seem to help. Something that may help one, may not help another. You'll have to find something that helps you by experimenting with different things. Good luck. Hope you find something that helps!

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Hi thanks for the reply, I've made a lot of changes in my diet aswell and it works for me too. I've stopped MTX now and will start with Leflunomide soon, I hope I'll have a better experience with this than with Methotrexate.

Lots of hugs, Isa

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Wondering if this might be of interest to you, ifxx/ Isa? 🤔

Can I Avoid RA Drugs or Should I Go On Drugs? . . . Also: Methotrexate Explanation & References: healthunlocked.com/nras/pos... (Scroll downward toward 'Pareto Principle (80/20 Rule)'.)

Hope this helps. 🙏 🌺 🍀 🌞

.

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I'm sorry that you are suffering. But if you've been on treatment 7months I'm wondering what your R.A. team have been doing... From my own experience, I'd have expected you to have had at least 2 specialist nurse appointments & at least 1 follow-up consultant appt. This really needs discussion with them and you are entitled to it. I do hope that you get that opportunity from requesting such from your R.A. nurse... Best wishes.

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Just had an appointment with my rheumy this morning. We talked everything through and decided to put me on Leflunomide, I hope this will work out!

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I'm so glad. Make them talk with you from now on, esp as you're now on o new treatment. Good luck!

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