flare or side effect??

resusjan

Hi all,

After my recent rheumatology appointment, it was decided to stop my sulfasalazine and start leflunomide instead. I'm now taking methotrexate, leflunamide, planequil and folic acid for my RA.

I've been taking the leflunamide for a week now and today suddenly developed really severe pain around the base of my skull and down both sides of my neck. Its so sore that I seem to be holding my head slightly forwards and cannot move my head at all to either side. If I do move it the pain makes me feel dizzy.

I can't work out if this is a flare up (I haven't had one for about 8 months now) or if its a side effect of the leflunamide. Anyone had any experience of things like this?

I've taken myself to bed with a hot wheat bag on my neck to see if that helps.

Thanks
Jan xx

Numptydumpty

Hi Jan,
I did get headaches with lef, but they were on top and to the side of my head. I also had very bad dizzy spells.
I think you should speak to your Rheumy or nurse.
Wishing you well,
Numpty

stickywicket

I really don't know, resusjan, but I wouldn't leave it for too long before getting it checked out ie it'll soon be weekend and therefore harder. I was only on lef briefly and didn't get that with it. What about the rheumatology helpline? I hope either it goes or you can get it sorted quickly.

resusjan

Thanks folks,

I will try either the rheumy helpline or GP tomorrow. I think I'll not take any leflunamide tomorrow just in case. I'm supposed to be on a night shift tomorrow and really don't want to go off sick as I've only been in the job for 3 weeks. I don't want to prove everyone right who told me I wouldn't be able to do the job.

thank you for your kind replies

Jan xx

dreamdaisy

Lef gave me cracking headaches, I spent the four days of Easter in bed with the blackout blind down. That was fun. :roll: This was a few years ago now and I cannot remember exactly where it hurt but I do remember not being able to tolerate light and preferring to keep my eyes closed even in a dark room. Get thee checked soon, please, I reckon the rheumatology department would be the better bet but alert both sides, yes? I wish you well. DD

resusjan

Thanks DD,

I'll call them both tomorrow. Hope all is ok with you xx

resusjan

So.... had terrible night. Couldn't lie down and on the one occasional I did manage to, I couldn't get back up again. So I ended up sitting up all night.

I went to the GP's this morning and they gave me some naproxen to take and said he wasn't sure if it was linked to my RA or if just had a sore neck. I can't move it at all, until the painkillers kick in. When I do move, it goes into spasm and makes me dizzy.

I'm on a night shift tonight and, as previously mentioned, don't want to prove occupational health right by going off sick. But.... on the plus side, the doctor I will be working with tonight happens to be my rheumatologists registrar so I will be able to speak to him and, hopefully, he will be able to tell me if its linked to the change in meds or a flare.

I'm not taking too many pain killers today so I've got plenty left that I can take overnight. SHould be an interesting shift

stickywicket

I can't say I envy you but at least you might get an informed opinion about it, resusjan. I hope so. And I hope the nap helps. And I hope the patients sleep - especially the narky one. (In my experience, as viewed from the beds, there's always a narky one.)

resusjan

Thanks Sticky,

You're right, there is always a narky one, I find I can cope with most things during the day but by 3am my patience is starting to wane somewhat. Don't get me wrong.... I love my job and really empathise with genuine patients, its just the people who have drunk too much and decide to come to A & E to vomit it all back up rather than go home and be sick in their own toilet that bothers me :roll:

I'm not ward based tonight, but am on call for the whole hospital, generally managing site issues and making sure doctors, nurses and patients are all in the right place at the right time. Its normally busy but I'm not working alone tonight so will be able to man the bleeps and phones a fair bit. Luckily my colleagues are understanding and know I pull my weight as much as everyone else when physically able to. I'm actually looking forward to it, I'll be spending 12hours working with the rheumatology registrar, perfect for him to see how the RA is really affecting me, rather than just seeing me for a few minutes twice a year. If he tells me I shouldn't be in work, then I'll do as I'm told and cart myself off home. He's a lovely man, and so patient. I trained him for his advanced life support a few years ago so he tends to be very approachable for me. I think this is going to be a perfect time for a true picture of my RA to come out.

Another positive, it even hurts to open my mouth to eat and I could do with losing some weight.

Heather65

Oh dear poor you i hope the pain improves i have a bad neck and get spasms to ,i hope you can get through your night shift ok ,like you i do nights and this hot weather is not helping it makes me even more tired ,
Take it steady and dont rush around ,
Heather x

frogmorton

Gosh Jan :shock:

Sorry I missed this...I am so gald you ahve seen your GP and even better that you can sneak a chat with the rheumy's registrar whiel you are on shift.

I hope you manage to survive work tonight and that it is a fairly quiet night.

When my neck 'goes' I can feel dizzy and sick, but it could so easily be a side effect :?

Take care

Love

Toni xxx

resusjan

Thanks Heather and Toni,

Will just see how it goes tonight and come home if I can't manage it. I've asked the A & E department to get me a soft collar ready so I can use that if I need to. I'm off after tonight so just need to get through till then, afterwards I can rest.

Take care all
Will let you know how tonight goes, thank you all for your lovely replies

Jan xx

resusjan

Well..... I did my night shift. The rheumatology registrar noticed I was in pain as soon as he walked in and he gave me a kenalog injection. Its not nice being injected in the bum by someone you've got to work with but I was in so much pain I didn't care.
He said he wasn't sure if it wa a flare or a reaction to the leflunamide so said not to take anymore for a bit. He was reassured that I hadn't got a sore throat.

Yes.....you've guessed....... I have now woken up with a sore throat and temperature! Waiting for the GP to ring me back now.

fowls48

Hi Jan



sorry you are so bad .I hope things will improve for you


Hugs coming your way (((())))xx

resusjan

Thanks Fowls,

I am still in pain, my shoulders and hands seem to have joined the party now. The GP has just called me back and asked me to stop taking leflunamide and get some blood tests done tomorrow. He wants me to check them myself, cos its saturday and they'll be shut, and if FBC is deranged to contact the oncall GP. He mentioned something about having the leflunamide flushed out of my system. I don't like the sound of that. It was bad enough having a colleague jab me in the bum yesterday :oops: , heaven knows how they will "flush" me.

Stupid, stupid, stupid RA. Wish it would "do one"

Wonkylegs

resusjan wrote:

I don't like the sound of that. It was bad enough having a colleague jab me in the bum yesterday :oops: , heaven knows how they will "flush" me.

Stupid, stupid, stupid RA. Wish it would "do one"

Hi Jan,

what a week you're having And I soooooo agree with your final sentiment as long as yours takes mine with it too

I have had problems with my neck, which has sometimes been as a result of a flare, and sometimes with my having done too much :roll: and stressed my joints.

I presume, like me, that you take a coctail of meds (forgive me if I've just read what you take ..... memory like a sieve today thanks to the RA, Fibro and meds :roll: ..... but I have taken Leflunomide in the past.

It worked well for me for a couple of years, in combo with the MTX, but I did get an upset stomach and a few headaches, but nothing like you describe.

I hope you don't need it, but I read a bit about the 'wash out' for lef and I think from memory that it is a 3 day course of drugs. I only found this out after I spent nearly a year on steroids and antihistamines as my body got shut of the lef which I had become allergic to :roll: :roll: :roll:

good luck and I hope the bloods turn out to be ok!

wonky xxx

resusjan

Thanks Wonky,

I am on a little cocktail of drugs - Methotrexate, plaqeunil, folic acid and leflunamide for the RA, thyroxine and B12 injections too.

I was on sulfasalazine but they changed it to lef because the rheumy said my RA was showing signs of worsening (bloods and xrays). I felt better on the sulf than I do on the Lef but I suppose I have to give it time. I'll stay off it till monday then will have blood tests back and will be able to speak to rheumatology again.
Thanks for your kind reply
Jan xx