Lefunomide - sore throat - lesson learned

[RosieA]

Since struggling for 5 days after re-challenging myself with LEF I have managed to get myself an infection!! Saw GP yesterday and two blood tests 3 days apart, show neutrophils have gone from below normal to high to v.v high. Jury is out (as am waiting for my lovely Consultant to contact me) whether is was a reaction to LEF - or an oppotunitist microb of bacteria making hay in my body or one causing the other.

Lessons to me - don't ignore a side effect warning, try not to be too stoic for fear of being labelled a hypochondriac. Don't try and clean the windows and floor in the midst of it all hoping it will all go away as it did pre-RA.

So it's back to the sofa, Midsommer Murders and watching my joints swell as I have not been under control for some time now. Seemingly, unless I get worse, I have to ride it out. Pity LEF has such a long half life. Self pity at an end.

P.S A little bit of gossip - GPs are not allowed to look at your throat during this period, understandable - I did try to photograph, NOT RECOMMENDED, very unpleasant viewing!!

Keep safe all. x

[sylvi]

I sure hope you pick up soon darling and will feel brighter.xxxxx

[RosieA in reply to sylvi]

Thank you. How are you doing? x

[sylvi in reply to RosieA]

Not as bad as i have been and not as good as i feel i should be. Thank you for asking.xxxx

[RosieA in reply to sylvi]

Perhaps a little bit of light appearing. I do so hope so. You have been a shinning example of stoicism. Here's to us both feeling a little brighter in the coming weeks. xx

[sylvi in reply to RosieA]

Rosie it is knowing whats wrong with me makes me feel brighter at least i know what i am fighting. I know it won't be easy, but i know there is plenty of help out there when this lock down is over. I will be contacting the drs this week to see if they will refer me to the hospital, also what can i do to help myself. So yes i do feel brighter in my head thank you for asking,xxxx

[RosieA in reply to sylvi]

Yes I agree, it always helps when you can see the colour of your enemies eyes! You know what you are facing and that alone helps to rest your mind and therefore your body I feel. Good luck on your following appointments. x

[sylvi in reply to RosieA]

Thank you darling.xxxx

[Mmrr]

It can be so difficult to know what is a side effect of a med and what is something else, but rest up and enjoy midsummer murders for now !

I recently had a horrible mouth, geograpic tongue, blood blisters and ulcers and my GP asked me to send photos too.

I tried, believe me I tried selfies, standing, sitting, lying on the bed, torch in mouth. I gave up, impossible ! 👅👅👅

[RosieA in reply to Mmrr]

What on earth is a geograpic tongue? Mine hurts. It's all so bothersome, I honestly haven't been anywhere to catch a bug!!!!!! I managed a photo - beginners luck but decided too grusome and deleted it - more fool me.

Love the little tongues - made me giggle. Thank you.

[Mmrr in reply to RosieA]

Geographic tongue, red patches , surrounded by white 'stuff', making the tongue look like a map. Lovely.

[RosieA in reply to Mmrr]

OHH! Sounds very Geographical!! Got the patches but not the white stuff! Poor you. x

[charisma]

Hi Rosie, I know it’s no laughing matter but your expression of this did make me laugh.

Maybe that’s partly due to knowing exactly what you mean about being stoic. And also, acting like we might before RA, expecting our poor bodies to be the same.

Plus, I had Leflunomide for a year, stopped June 2019 and I was so worried about its long half life too.

I hope you soon fight off whatever bug attacked your poor throat. xx

[RosieA in reply to charisma]

Thank you. We can be our own worse enemies I think. The hot and cold temperature fluctuations experienced whilst waxing and polishing the wood floor (YES I admit it I did that too!) were in hindsight - less to do with me putting my back into my work and more to do with the body going into shock I think. Will be glad to speak to the consultant and sort this mess out really.

May I ask how long you had to wait after coming off LEF before you started your next meds? x

[charisma in reply to RosieA]

Yes, going into shock describes it!

I had to wait just two weeks to start Prednisolone while waiting for approval for biologics. No washout of Leflunomide either, in spite of everything I’d read about it.

[RosieA in reply to charisma]

Interesting, not too long for it to have cleared enough to move to the next treatment. Perhaps they leave the washout for those with extra problems with their liver / kidneys/ allergic reactions. I'm still on the PRED and HYDRO and just can't wait (Hum!) to find out what bundle of joy awaits me next. Hoping it's third time lucky! Have heard though that Biologics can be game changers. X

[allanah in reply to RosieA]

They did change my life !!!! Hang on in there ....

[charisma in reply to RosieA]

Could be re washout..

I was on the Hydroxychloroquine too, with MTX, but came off it a few months after starting Leflunomide which was my third drug after Sulphasalazine then MTX with HCQ.

First biologic failed me. The drug infusions (second biologic) seems to be working. Ultrasound scan and blood tests coming up in the next ten days will give a better picture. Most seem to find that the second round of infusions really make the difference. Waiting game... meantime I have had much relief though hands, wrists, feet and ankles are painful after stopping Prednisolone which of course has to be tapered to zero in order to know if the drug infusions are effective.

Feeling hopeful though! x

[RosieA in reply to charisma]

Everything crossed that I can. Like you I been through all the conventional DMARDS except SUL. Here's hoping that you win this particular waiting game. x

[Hidden]

😁 is it a women thing?? I’m like you try to be stoic and believe I can beat whatever or just ride it out. No no can’t be done with RA . Took me some time to learn this won’t do it again just not worth it.

[thelmar]

Thank heavens for Midsummer Murders! Much prefer the John Nettles ones.

[RosieA in reply to thelmar]

Have now moved to Foyle's war having realised that the plots looked too familiar and I knew who dun it! Foyle's war super and equally soporific and gently takes me away from exploring new spots in mouth.

[Hidden in reply to RosieA]

Love foyles war. I stumbled across a film on Netflix. Not my type of film . Modern day, subtitles but I really did think it was good. Unorthodox is the film .

[RosieA in reply to Hidden]

Have yet to explore the delights of anything not on Freeview (and we're Freeview light in our area). Still, recording beloved old repeats. Will look out for the film though. It' bound to come our way at some point.