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So...change of plan starting Leflunomide (not Biologics)

So change of plan since my last post. My Rheumy seems reluctant to start me on biologics! She even said it’s because they are expensive for the nhs (charming) The nurses were sure I would go on them and said they were the best...so feeling a bit gutted.

I’m now starting Leflunomide tomorrow...not going to lie I’m dreading it....Methotrexate has scared me for life and I’m scared.

I hope everyone is staying positive or atleast trying to. Sometimes I wonder what I ever did wrong to deserve all this :(

x

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Well biologics are scary too.... We are stuck between a rock and a hard place unfortunately.

I think it's wrong for a medical professional to say drug X is the best. As we know what's "best" for one person is a horrendous nightmare for others. Yes biologics have a good safety profile, but make you much more vulnerable to infections. I've been on traditional DMARDs for nearly 8 years and was completely fine. I didn't mind that they were cheaper and saving the NHS money because if they worked, they worked.

Recently i've had to change to biologics and it wasn't an easy decision. There are people on here like medway-lady who have been on Lef successfully for years. Hopefully you'll be just the same.

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Thankyou so much and you’re totally right! Sometimes we all just need a friendly reminder of all this. How are you getting on with your biologics? x

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Fingers crossed, but seems to be going well. Apart from an infected toe, which is a nuisance...

If you had infections on sulphasalazine, which isn't much of an immune suppressant, then perhaps going onto biologics might not be the best thing for you anyway?

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Are the biologics even worse for suppressing the whole immune system then? I thought they targeted a specific part more whereas the others suppressed the whole thing x

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The traditional DMARDs only slightly compromise your immune system. Imagine spraying a machine with sticky honey - it will still work 100% but not as well.

However biologics do suppress it much more. Yes they are very targeted, but imagine same machine that had had a specific cog removed. Sure it will stumble on doing 90% of the things it did before, but some things it just can't do and it's overall efficiency will be much more damaged.

Well that's how I interpret the medical gobbledegook. Could be entirely wrong of course!

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Maybe your DAS score was right on the edge& your Rheumy, knowing the health authority she was dealing with, thought funding might be refused?

So take a deep breath & hope the LFL works...quite a few people here seem to have been on it successfully longterm.

I have ended up on Biologics & have had a far easier time on them than any Dmard I took....so if things do eventually go the Bio way don't be too apprehensive ....they are often the answer!

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Thankyou! My trouble is over thinking everything and being very impatient. Yeah my DAS score wasnt quite enough for biologics as the sulfasalazine is working to an extent but ultrasound showed inflammation still very active. My white blood cells dropped significantly again so did iron and b12 and then the next week they were fine...its so strange. Had some terrible infections from it too. Anyway trying to stay positive and it looks like everyone is very different when it comes to what works. Thanks for the advice and support...i havent been on here in a while and it does help xx

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Let's hope even if it's a stop gap on the way to a Biologic drug, the LFL helps you.

It does sound as if your Rheumy was holding off on biologics because if she was refused you'd have to wait three or six months (not sure on that) before you can apply again...& that would really slow things up.

So best foot forward & just swallow the ruddy pills!

Fingers crossed for you!

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Hi Harvey,

As far as I am aware you have to fail 3 DMARDs one of which has to be MTX before they can apply for funding for biologics. It took me many years and lots of tears and tantrums to get on biologics and am still trying to find the right one. I would advise you to take the LEF at night so you can sleep off any symptoms. Unfortunately all DMARDS have made me really sick but I really hope it suits you and gives you some relief. Sarah xx

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Thanks Sarah I hope so too xx

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I’m uncertain of this as before starting my first biologic, all I’d had was painkillers and steroids? Can it really vary so widely depending on where you live? Not great, if so.

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Oh ok maybe it does. I just presumed NICE guidelines covered everywhere. I know my Rhumatology dept have always been reluctant to spend and dragged things out as long as possible before switching meds. Well that’s certainly how it feels when you’re in immense pain. xxx

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Totally understand! And you’re right, NICE guidelines should cover all. I was possibly just very lucky? My AS and RA cane out of nowhere and was very aggressive with both hips replaced together and three months later, both knees replaced together so that may be why? Anyway, wishing you the very best going forward with everything.

Marie

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Marie, you clearly needed something straight away due to the aggressive nature of the disease. xx

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Yeah, I think so.

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LEF hs worked for me, I take at night with a glass of water and do wonder if sometimes people don't take with enough water so the tablets dissolve before reaching the tummy. LEF takes a while to work so be patient and as for side effects yes I did get them but they do go. x

Just give it a try and I'm limited as also take Riveroxaban which means no asprin based stuff.

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Thankyou I am starting them tomorrow. Can I ask what side effects you had? x

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Horrific pain in hands, shoulders and wrists, legs, hips enough to make me cry and it lasted for a few days so lots of ice packs and pain killers and rest, then one morning it all went and life was norma, the sky blue and no pain etc. And no brain fog either. xx

I never felt sick or had another other side effects.

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Blue sky and no pain sounds ideal... fingers crossed I get those ha! I’m glad you got through it and out the other side. It’s tough as I have a full on job and no sick pay so hoping it doesnt affect me like the mtx did xx

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Interesting you said that! I thought I was having another flare!! I’m on week 8 of Lef. I’ll keep in mind!

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Sorry that it’s not an easy route for you. As others say it doesn’t matter which drug so long as it works. One piece of advice I would give is that if you have a flare get straight to the gp for a blood test. The results will then show the extent of inflammation at its worst and the experts will have it on record. This was a coincidence for me but it really made the difference. Good luck

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I dont think that works for me as I am seronegative...so have to have an ultrasound which isn’t as easy :(

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Hi Harvey I was fine on Leflunomide for over 2 years but then nightsweats and fatigue started. Put up with it for ages kept telling nurse before myself as I was so bad. Took ages to come out of my system was offered a washout but didn’t and wish I had. Now on biological Actemra for a few weeks and slightly better apart from my wrist. Good luck.

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Yes, it's all cost driven. The NICE guidelines say that we have to try two or three DMARDS (methotrexate, leflunomide, etc) before we can be considered for biologics. Give this one a try but be ready to go back as soon as it apparent that any side effects are intolerable or it's obvious it's not working. You have to keep the process moving.

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Thankyou! I kept going with the Methotrexate for months even tho it made me feel like death they just encouraged me to keep going...so will definitely speak up if this does the same. I know someone in the US who pays $3000 a month for their biologics...so I guess i should be grateful that I only pay £104 a year for my drugs x

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Good luck! I found Leflunemide to be quite good. Just keep an eye on your blood pressure

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Thankyou! Have you made it into remission?

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Unfortunately I had to give it up. Blood pressure was nuts, even on blood pressure meds. Changed to Sulfalazine.

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Ah ok ive been on highest dose of sulfasalazine for a while and it’s helped but not 100% so adding the Leflunomide now. Today they told me my blood pressure should be ok because of my age (30) who knows anything could happen i feel x

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Indeedy. We are all different. Age may be on your side but what a pants time of life for you to be suffering. X

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Well Harvey0279, being expensive for the nhs is not an excuse, shame the people that abuse the system don't think so. There is such a thing as patient choice, and if you meet the criteria, and you've still been refused you havr every right to appeal the decision. I too was initially refused. Bit of a joke for saying that I was diagnosed with idiopathic juvenile RA 45 years ago. Been on a medical nightmare journey, trialled that many meds I cannot even recall many of them.

Anyway, stick with it and don't be afraid to challenge.

Good luck

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I have been on Leflumonide for 14 months after that they decided to put me on Benepali injections too. The have now stopped LEF. You will find that we have to be tried out on at least 3 DMARDS before we can go onto Biologics. I am feeling ok on Benepali injections once a week . Good luck

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Thanks Lucy! Did you have different side effects on Lef to Mtx? x

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yes I did. I was on MTX and Sulfasalazine. MTX STRIPPED my system of Folic Acid and I had take high doses of it when they stopped MTX. the sulfa stuff made me very ill and upset my stomach too the specialist begged me to keep trying it which Idid. My GP then insisted they stop it. Leflumonide sent my blood pressure through the roof. Hope this helps. It seems we have to suffer to find something that helps us.

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