Since leflunomide bit the dust...

[marie66]

Hi guys, yet another dmard dumped I got a bad reaction (major rash on my neck!) but on the up side the purges and vomiting have stopped so just back to my usual 3 day nausea issue with methotrexate.

So recapping...I'm still on methotrexate iron gabapentin, cocodomol, ramapril (blood pressure), eye gel -infection and the prednisone. More scans ordered before we add anything else! M x

[Moomin8]

Sounds like you've been through the mill. 😕Remind me - are you on mtx injections or tablets?

[marie66 in reply to Moomin8]

I've been on jabs for a year went upto 15 for a while but nausea and purges continued so bumped back to 12.5 4 months ago and it got a bit better even more so now I've stopped the Leflunomide! M x

[AgedCrone]

Wow how awful for you Marie!

Marie...do you understand how they can tell which drug was responsible for this latest upset when you are taking other medication as well? Because I never have!

If you are having a bad time on Mtx why are you still taking it? Could the new Dmard have affected that?

I have never been given drug on top of drug.....if I had a bad experience Rheumy always took one away & then added another one. I took Mtx for 7 years & then suddenly developed really bad headaches, dizzy spells,nausea & all sorts of nasty effects......about 4/6 weeks after I stopped Mtx I slowly recovered.....I had a Depomedrone injection to carry me over...then went on to another Dmard...can't remember which one - it was years ago!

Have you asked your Rheumy nurses to sit down & go through all your drugs with you checking if the new Dmard was not the culprit.....but that it affected something you are already taking?

This wretched disease certainly needs more research on drug protocols doesn't it? It also needs more effective promotion from NRAS......everything I have read lately refers to " arthritis" & it always seems to turn out to be OA they are talking about, bizarrely not RA!

Hope you feel much better soon.

AC

[Nettac in reply to AgedCrone]

The more drugs taken, the more likely it is that there will be nasty drug interactions.

I must say, I've never really understood why docs just stick drug on top of drug! If it ain't working stop takibg the offending drug, and try another!

I had an appalling drug interaction a couple of years ago...could have killed me! Since then, poly drug use is out for me.

[marie66 in reply to AgedCrone]

Hi, the neck rash showed up 5 days after starting leflunomide - I kept it for 6 weeks hoping it would settle down as my hands were a bit less painful but the rash continued to spread and got really angry...not an inch of my neck was normal colour! It started to go after 5 days off the drug and 10 days on its still bad but it's patchy and going so I think it truly was the leflunomide to blame!

I'm still on methotrexate jabs as it has helped the swelling in my wrists and hands and despite nausea and purges day of and next 2 after my injection, I've been unable to tolerate either sulfasalazine, Hydroxy and now Leflunomide so I'm kinda stuck using the methotrexate and preds mostly. M x

[AgedCrone in reply to marie66]

What I meant was maybe for you Lfl mixed with Mtx was a no no....but unless you try these Dmards one at a time how does the Rheumy know?

But if the rash is going ???

if you still feel so rotten on Mtx I'd ask to change ....there are apparently many more Dmards you can try.

Any mention of Biologics? I have found RTX SEEMS to have hit the jackpot for me. I lived on Depomedrone injections until my DAS hit the magic number, as I just couldn't bear feeling so ill on Dmards.

Apart from my wrists/ thumb joints I am just stiff not in pain & I'll settle for that after feeling so sick for so long.

Oh why does it take SO LONG to find the right meds!?

I just hope your Rheumy can sort things for you very soon.

AC

[marie66 in reply to AgedCrone]

Yes, I think you're right and it was probably the mix of both as I'd been on the methotrexate for over a year. I had nausea and issues but no rash...I still think it's trial and error! M x

[marie66 in reply to marie66]

No mention of bios

[AgedCrone in reply to marie66]

Ask about them! How many Dmards have you tried.? At least three & DAS of 51.5(?) should get you on the road to applying for funding for Biologics.

Good Luck!

AC

[Gnarli]

Many sympathies to you. I'm pretty much in the same boat. Mtx gives me mild but ever present nausea and is not quite enough so sulpha added in. Itchy rash all over and wretched nausea. Sulpha stopped and hydroxy added. Worse nausea, itchy rash, dizziness and headache. Hydroxy stopped. Ultrasound to hand and feet soon and, if inflammation found, a biologic wIll be prescribed. Oooh. And she said there was "something else" as well. Fun times eh. Hugs

Jan

[marie66 in reply to Gnarli]

Hi, sounds like we could play snap! mega lols M x

[Gnarli in reply to marie66]

We might as well laugh about it eh? It's easier and less messy than grizzling

J