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Leflunomide

Hey I was taking methotrexate until they increased my dosage & I started experiencing shortness of breath. I have only been on prednisone 5mg & folic acid 1mg. My doctor & I just decided I will start on leflunomide 10mg. I received the prescription but I'm scared to take it. I know I have to, but I'm nervous. Any suggestions to ease my mind

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Look up other posts a, a few comments on here about it in last few days. I've been taking it for 3 years and in remission. No problems at all. Best advice ignore the PIL and call it ARAVA sounds so much nicer. PIL's can give self fulfilling info and it's about risk management. 10 chance you'll get something means it's more likely 90% you won't.

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Thank you, you made me feel a lot better reading that

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I have only been on leflunomide about 2months, I also take mtx20 mg and hydrochloride 200 mg. I came of sulfasalazine as was still in lots of pain. I have found the tablets ok and not many side effects. Good luck and hope your ok

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Been on leflunomide 10 mg for 10 years. Great medication for me, much gentler than methotrexate. Doctors tell me 10 mg is very low dose - they put me on 20 mg it was to strong I was exhausted all the time

So went back to 10 mg it's been great

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Been on Arava for about four years. Great for me. No problems and it really helps with swelling !

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I had the same with mthx and havr been on humira for 2 years have been ok no probs. However it was decided to put humia into the mix first injection was like a miracle all pain went i was back to my normal self of 6 years ago tgen the 3 after that have sent me spiraling downwards and very bad breathing so have had to stop that am to go for cat scan on lungs in november see rheumy in october hey ho off we go again. Dont be too worried of lefl it does help and 4 u it could do the trick. Keep smiljng!!!sending u a big hug xxxx

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Hi. I am in the same boat as you. I have picked up my perscription for it yesterday and keep looking at it worrying about taking it. I was on mtx before and had horrible side effects. It really puts you off doesn't it? Have you taken yours yet? X

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OMG I'm still looking at that bottle but I am planning on taking tomorrow. I know I have to start so tomorrow will be the day. Would you like to begin the journey together?

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Yeah that sounds great.😊 I have heard that taking them at night is best? I have been putting off taking them for a year now and have had so many flare ups that I have been left with no choice. So Dr finally prescribed them last week😦 it's horrible the not knowing but will be great to know there is someone else there too! 😊 xxx

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Ok we are in this together starting tomorrow. I will post when I take it 😊

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My rheumatologist also suggested taking at night

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Hi ya. I have just been off of work with a sickness bug then last night had a sore throat and this morning a cold to go with it!! So am gunna wait a few days to see if I get over this before starting them. X

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Oh no feel better & yes you should wait

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Hey. How are things? Just to let you know I toke the first tablet today😨 have you started yours? Xxx

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That’s great I haven’t started mine because I wasn’t feeling well then last week got a cold. How are you feeling?

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Have got rid of bug and cold....so thought its a new week so will start to take them! Feel ok at the moment but surpose they take a while to get into your system. Hope you feel better soon. Xxx

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Thanks as soon as I’m better I will start

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How’s it going on the Leflunomide?

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Hey. Yeah ok, i have had a bit of a dodgy stomach but it's not bad. Hopefully it will stay that way, fingers crossed. How are you? Have you started yours yet?

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I plan on starting mine tonight Are you taking yours in the evening?

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I am taking it in the morning straight after breakfast. I think maybe it's better to have a full stomach.

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Yes my doctor did say to eat but also suggested taking in the evening

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I just took for the first time, will see how this goes

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Ow fab, well done you. Let me know how you get on. X

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Hows it going? X

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It’s going ok so far I have been taking the Leflunomide since Monday. I take it about an hour before I go to bed. How’s it going for you?

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Yeah fine, had first blood test yesterday so wait for results on Monday. Been having really sore muscles on left thigh and neck on left but don't know if that is a side effect or not but it's not to bad. When they tried to take blood from the left arm they couldn't get any and that's never happened before..... weird. It seems to be a problem with the left side. X

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That does seem weird about not being able to get blood from left. My right side seems to be the side that always bothers me most I’m starting to think it’s due to the fact that it’s my dominant side & that’s my go to side. I have another week before I go to doctor wanted to wait at least to I was taking meds for 2 weeks. I will let you know how it goes Fingers crossed 🤞 for us

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Hey. How is it all going? X

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Ok it’s been 2 weeks the Leflunomide has been fine. I had a slight flare this week so my prednisone was increased back to 10mg. I go see my rheumatologist today but she told me to take until today. I will get my blood work done today, so will see how that goes. How are things going with you?

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Yeah it's going ok. I have yet another cold and sore throat! But blood test came back fine. They are just about to increase my dose this week so see how it goes. X

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I have been having a sore throat but the doctor said it’s not infected. I got a humidifier & using it at night since then I have been feeling better.

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Hey. How is everything? It's been a few weeks now. I have have my dose increased and everything is going well Blood ok, blood pressure has returned to normal. How's u?

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Hey everything has been going well I had my blood work done yesterday so I will see how that goes. I’m in a little pain today but that’s my norm lol. I’m on 10mg of the Leflunomide & next week I will be off the prednisone I’m down to 2.5mg.

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Hey. How's it all going with you?. It's been ages!! I am not great.... having terrible diarrhea, nausea, headaches and werid dizzy spells. Am now back on 10 mg and have been told to see how that goes.... if no better have to stop leflunomide. Blood tests are all fine tho.... so it's a shame that the side effects are getting bad. How are you finding it?

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Good luck to you both. That's a great idea to support each other. 😍😍

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Hi my doc said to research leflunomide (I had been on Mtx but taken off due to mouth ulcers) helpful to read these posts, seeing doc end of January to discuss. Confidence badly damaged by Mtx and previous high handed doctor.

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Try not to overthink it. One side effect of MTX is it can affect the lungs but so can the disease itself so your Rheumy was right to stop it if he thought a lower dose wouldn't tackle disease activity. But, just as your Rheumy was right to stop the MTX he's also right that you need a different DMARD to tackle disease activity. He's started you on a low dose, maybe that helps? I take both MTX (8 years) & LEF (nearly a year) & have a history of lung involvement. To date I've not had any problems respiratory wise. The only concession is that on the odd occasion I have a cold being my weak point it always ends up on my chest & I need antibiotics, then I stop my MTX temporarily but continue on my LEF.

You'll be able to stop the folic acid I would think. It's only prescribed with MTX to ease side effects, that is unless you're anaemic but then I would think you'd be on 5mg at least. I take it as you've been prescribed only 1mg you're not in the UK?

I've had no side effects from LEF, except I had a little hair loss in the first month or so but that settled, otherwise nothing. Whilst it's recommended we read the patient information leaflet, & I do, sometimes if you're not in the right place it's unhelpful. I'd take a deep breath, a large glass of water & swallow, you're trying to get a hold of the disease, try not to focus on what may never happen. Remember med manufacturers have to list every side effect, there's no guarantee you'll have any.😉

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Thanks, yes I am anemic & not in the UK. I have anxiety so I will not read the PIF, lol. What time of day do you think is best to take it?

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Ah, so the folic acid wasn't to take with MTX, seems a very low dose if you've folate deficient anaemia, is it helping?

You're best not reading the PIL if you've anxiety, it won't help. Do ask here, or your Rheumy team/prescriber, if you've any concerns about meds though won't you?

I take LEF with my evening meds, only because when I was first prescribed it I collected it from the chemists in the afternoon no other reason. Not sure there's any particular time, unlike NSAIDs & statins which should be taken at night, just take it at the same time each day, only so you remember.

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I also have picked up my leflunomide from the pharmacy and have yet to take it.

I'm switching from mtx to leflunomide bc of severe hair loss. I know this med can have the same side effects, but my Rheumy tells me the chances that I will have the same side effects are slim.

It's just so freightining bc I don't want to experience bad side effects. So far the only downside to mtx in these past 7 weeks has been hair loss, now I'm moving into new territory...and the worst part is it stays a while in your body. Please let me know how you are getting along...I know I need to make a decision and take it soon. All the best to you!!!

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I also was on mtx and lost a lot of hair and was severely nauseous after taking the tablets. I've now been prescribed leflunomide but haven't started taking it yet as I've a cold at the minute. But I'm in the same boat so nervous about the side effects with this being similar to mtx.

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Looks like we are in the same boat, as soon as I’m over this cold will start the Leflunomide

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By the way, how long were you on MTX?

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I was only diagnosed there in August was on mtx for a month then they took me off it when they seen how bad the side effects were. I lost a lot of weight in a very short time. I'm only 25 so I'd say it will take a while until they find the right medication. This forum is definitely good help to hear everyone else's experiences.

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I hear you, I was also diagnosed in August. I'm 34. I'm sorry you had such a hard time with mtx, they should've got you off of it sooner!!

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HI jennalesley,

Just checking up on you! Usually, no news means good news. So I hope that is true in your case. I hope things are well!

xxoo

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Hey only started leflunomide yesterday had to finish an antibiotic first. I wasn't sick straight after like I was with mtx so let's hope it stays that way. But got bad news I've a fractured foot now as well 😞 how are you getting on?

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Oh no!! I'm so sorry to hear that!! I wish you a speedy recovery!!

As for me, been feeling a lot more pain since I missed my mtx dose this past weekend. I am super stressed...had to resign from a new job bc it was too overwhelming and took a toll on my pain levels. Today I begin my first leflunomide dose (was on antibiotics too). So trying not to be down and feeling defeated, then I woke up this morning with a cold sore on my lips. Happens to me when I'm overly stressed. So I'm trying to take it easy for now.

What are they going to do for your foot?

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It's the second fracture in a year so have to get a bone density scan and then see what else is wrong.

I'm in the same boat there to having to quit my new job as well until I get this fracture healed on top of everything. The whole medication thing is so stressful just waiting to see what the side effects will be and whether it will work or not. I've psoriatic arthritis so my psoriasis has went into overdrive.

Just take the time to look after yourself.. your health is your wealth and is the most important thing. So try do some things to relax yourself. Hope you feel better soon.

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Exactly! I feel like we are always in limbo... Is it gonna work, is it gonna make me sick, how long is it gonna take, etc. It never ends.

You are absolutely right. Without our health... There is nothing. Thanks. Keep in touch 💕

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You too let me know how you get on fingers crossed it's easier than the mtx anyway x

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Hi Jennalesley,

I just wanted to say hello, see how you are getting along. I'm here for support if you need me. I'm hoping LEF is treating you well 🙋

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Hey no had to come off it as well, have an appointment tomorrow to see what the next option is 🙈 how are you getting on?

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Oh no. Jeez. I'm sorry. This is so not fun. It is misery, in fact.

Well, I hope your rheumy appt went well and was hopeful.

I'm more of a mess mentally, emotionally. Just been so down lately. I think LEF really freaked me out with the insane tingling. But it has lessened a lot since I stopped. I just hate not knowing if something is or isn't going to help and if it is going to damage other things in the process. It's taking a toll on me mentally. My hair is still falling out and it's become really obvious in the front. So I am super sad about that. Anywho...don't want to be a total bummer, so enough from me.

If you feel like talking about it, how did you appt go?

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I was on the methotrexate for 4 months

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I hope you do well on Arava. I switched over from MTX because of those side effects about 5 weeks ago. I am on 5 mg was on 10 mg but had upset tummy. Little side effects. Hopefully it will work for us💕

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Hi Hairdevine,

How's it been going for the last 5 weeks? Do you feel like it is helping you?

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Hi there. I hear it takes up to 2 months for full effect. Not quite there. But yes it’s starting to make a dent in my pain level :) most people are on a higher dose. I just can’t tolerate much !

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True, 5 mg is low, but if you can tolerate that amount and even feeling a slight difference in pain lessening... sweetheart, that's great! I hope the progress continues and when you are able to up it a little, you will probably feel the benefits even more!

I feel like it's a little victory for you!! 💪👍

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Thank you! All the best to you 🙏

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Thank you!! 👯

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My hair was falling out before the methotrexate & doctor told me that was actually a sign that something was wrong. I invested in some clip on extensions which made me feel a little better

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Oh no...a sign of what? RA? The worst part is seeing so much scalp near my face...receding hairline and just waaay to much scalp. Not cool.

At this point if I wore clip in extensions, I'm afraid it would pull whatever hair is left. 🙄 But I'm happy it's working for you!! I keep telling my husband, maybe it's time to check out wigs. I think I'm a few months off from getting to that point, but one never knows!

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We need to keep in touch!! I need to wait until Fri/sat to start mine since I took my mtx dose last week. I'll check up on you guys in a few days... We gotta be strong!!! (I'm trying to convince myself more than anything)

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Did you start your Leflunomide

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Hey SassyRa.. I was supposed to begin in this weekend. But I seem to have a lingering bladder infection, so I've been on antibiotics for a few days. Once I'm done with that, I will begin leflunomide on Tues. How about you? How are you doing?

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I plan on starting it tomorrow night just got over my cold. I will be taking the Leflunomide 10mg & continuing with 5mg prednisone.

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Okay, wishing you the best!! I hope you have minimal side effects, and I will check up on you in a day or so.

I'm currently on 12 mg Pred, and will also start at 10 mg leflunomide on Tues. I'm kinda getting to the point where I want to get it over with. But now I have to wait a few more days...

Keeping you in my thoughts and sending you hugs!!

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Thank you so much 😊

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Of course!! Keeping my fingers crossed 💕

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I just took my first pill will let you know how it goes

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Ok! I'm praying it will be a positive experience for you! 🙏

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Hi SassyRA,

How are you doing? I'm hoping everything is going good thus far.

I finally took my last antibiotic pill last night and will be taking my first leflunomide dose today with my lunch.

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Hi I have been eating & taking Leflunomide at night around 8:30/9pm. It’s close to my bedtime so no problems at night. Today I feel really weak like I’m coming down with something, I don’t know what it is. I am still taking my prednisone in the morning around 10:30am.

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Hi there!

Hmm. It seems you are tolerating it well...do you think the cold-like symptoms could be from another source?

Today was my 2nd day on it. Seem to be headachy. Not sure tho, bc I've been having vision issues simultaneously. Could be that, could be Rogaine giving me headaches, and now could be this leflunomide. So who the heck knows.

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Oh no I think it’s the weather & germs at work. Are you taking it at night?

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The last 2 days took it with my lunch. Today, I'm waiting to take it in he evening. But the real unfortunate part is I woke up today with upper stomach pain so I think it's giving me acid reflux. I'm really upset about it bc I refuse to take Prilosec or some other proton pump inhibitor. So now I'm really lost. I'm afraid to take my dose later tonight 😫

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I was taking omeprazole but after my colonoscopy & upper endoscopy came back fine doctor said I can take Pepcid 40mg if know going to eat something crazy

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Hey there SassyRA. I wanted to check up on you. How are you? Did you end up with a cold? I certainly hope not!

I didn't have stomach pain after that specific dose, but started to experience mild tingling sensations in my hands and feet. Yesterday, it got to an unbearable point, so no more LEF for me. Will begin plaquenil now. I am just so surprised that I was one of those "rare" cases that deal with this uncommon side effect.

I hope you are doing well.

Xx

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Oh no sorry to hear that, this trial & error is what bothers me most, sends my anxiety through the roof. I did get a cold & had a slight flare this week (they increased my prednisone back up to 10mg for the next couple of days) but I’m feeling ok now. I have been on the Leflunomide for exactly 2 weeks now & go see the rheumatologist today. Please let me know how it goes with the plaquenil.

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Hopefully upping the prednisone gave you relief! I'm glad you are at least getting over the cold.

I will let you know how the plaquinil goes. But that is exactly what's killing me too..the trial and error. I've also been extremely down lately. Just so depressed :-(

Plaquenil is gonna take at least 4-6 weeks to kick in...but so far no really obvious side effects. How did your rheumy appt go? Hope all your blood work came out fine.

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.

In case you haven't already seen this Leflunomide (LEF)/ Methotrexate (MTX) capsulised summary, SassyRA, here's the infographic that may help place these 2 DMARD treatments in context:

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Managing Patients Taking DMARDs

(Disease Modifying Anti-Rheumatic Drugs)

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🛅 INFOGRAPHIC (pdf): bmj.com/content/bmj/suppl/2...

A visual summary of the 4 most frequently used DMARDs, including recommended monitoring & conditions that may interfere with treatment:

1 • Methotrexate (MTX)

2 • Leflunomide (LEF)

3 • Sulphasalazine (SSP)

4 • Hydroxychloroquine (HCQ)

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"Symptoms of inflammatory arthritis are often controlled in the long term using DMARDs (disease modifying anti-rheumatic drugs).

These are usually initiated by rheumatologists, with patients commonly taking two or sometimes three DMARDs simultaneously.

This graphic shows information about four of the most frequently prescribed DMARDs, including recommended monitoring and other conditions that could interfere with treatment."

.

.

📰 ARTICLE: bmj.com/content/358/bmj.j32...

.

[Many thanks to Man_Oeuvre 'BMJ DMARD infographic': healthunlocked.com/nras/pos... 🙏 😌 ]

.

Wishing you the very best, SassyRA. 🙏 🍀 🌺 🌞

.

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Thank You

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I was on leflonomide for a year....it worked but I started to shed hair and have chronic diarrhoea and came off it. It affects everyone differently. I was more than scared and did

refuse at first. Now waiting to see if I am on enbrel....petrified as side effects and inconvenience of chilling vials etc.Ladyjan

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Has anyone taken methotrexate, & gotten Shingles?

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