New meds and mtx tips.

[mirren]

Hi everyone

Saw rheum nurse today as I hadn't improved on increased dose to 20mg of methotrexate 5 weeks ago, and in fact have been worse. My right ankle is swollen, both are agony to walk on and wrists palms of hands and elbows very painful and stiff. She could see how swollen my hands and ankle were and decided we are been tinkering too long.

I am changing to Methotrexate injections and to add leflunomide. So I will be on triple therapy, mtx Hydroxychloroquine and leflunomide. I will be reviewed regularly and if no improvement then for biologics. I don't care what works as long as something does.

My ESR was 22 which is high for me as its always been 10,11,12 even at beginning when I was really unwell. It was 17 last twice. I also got a steroid depot to tide me over.

I was so relieved she listened to me and understood how much I was struggling to work and do basic tasks. She was really lovely and reassuring. I don't want to see any more doctors, i haven't always been too sure I was getting enough care from anyone at MRI, but when I look back its always been the nurses who have been my advocates and got my doses increased, got my Hydroxychloroquine started, and now real action today. Really hope it helps!

The nurse told me today that recently it was agreed at EULAR conference that if people have not responded to 20mg mtx then no point going up to 25 as there is no difference in outcome. So don't let them waste precious months on increasing doses. After 20 oral you need injections and then change/biologics.

[niehenw]

Hi Mirren.

Do you have RA or Psrs? Wish you all the best and a good response.

[mirren in reply to niehenw]

My current working diagnosis is Psoriatic Arthritis - I have no psoriasis or any nail changes, but v strong family hx, rhf neg and DIP joints involved. I have been on mtx for 11 months and mtx with Hydroxychloroquine for 8. I did 'improve' from my completely horrendous baseline, but started slipping backwards. Looking forward to the future now I know I am being taken seriously and there is a plan. Thank you for answering. Do you have PsA?

[flow4 in reply to mirren]

Me too, mirren. Improved on 15mg oral mtx but then plateaued and had constant nausea, so they switched me first to 15mg then to 25mg injections. I've only been on the increased dose for 3 weeks, but I'm starting to feel like I'm getting worse not better.

[mirren in reply to flow4]

Well like I said before, don't let them leave you too long - 12 weeks at max dose and if no or inadequate effect you have to be tried on another Dmard - it's nice guidelines. After a further 3 months in PsA you are entitled to be assessed for biologic. It's a bit soon for the dose increase to do much but could you have a steroid jab to tide you over? I hadon't one on Thursday and I think in nick of time as I have started getting heel pain.

[flow4 in reply to mirren]

Yes, I'm booked to have one tomorrow.

I've already tried hydroxy, which caused a psoriasis flare, so my understanding is that I'll be assessed for biologics if the mtx doesn't work sufficiently well... I'm switching my care to Chapel Allerton (after tomorrow!) so I can be more confident in the quality of my care...

[mirren in reply to flow4]

I asked if hydroxy was seen as a dmard in psa and my nurse said not, i am happy to try leflumomide and see how i get on. She (And i agree) says at least we can prove we gave dmards a good go. Havent you been offered sulphasalazine or leflunomide as an adjunct to mtx?

[niehenw in reply to mirren]

PsA yes ...for many years but got worse as time went by...have been fortunate in that arthritis was mild and started on MTX only few months ago..with moderate response.

[Eileen01]

I feel your pain poppet..my last ESR was 60..I can't take ibuprofen or aspirin based anti inflammitories so have to have prednisolone...I'm starting on mtx on 13th July...I also have swollen ankles, fingers toes, and the side of my foot is really sore to walk on, not only this but the inflammation is giving me tinnitus which I have an mri booked next Sunday...this really is a horrible illness...interesting info about the mtx...thankyou for that...wishing you well hope this is the start of better times..xxxx

[mirren in reply to Eileen01]

I had tinnitus way back last year and was going deaf but that went away after a course of steroids and hydroxy was added. I have ony just started to see increased esrs its common in psa to have no blood evidence at all, especially in younger people and they dont know why. I was lucky my ultrasounds were so strongly positive! Hope mtx works for you but aim high, dont think you have to settle for a bit of improvement x

[TerrilouiseS]

I hope MTX works for you. I tried sulpha and MTX and neither did anything at max doses in fact I got worse. Started Humira after MTX injections proved useless. Always thought I had RA but PsA was diagnosed just before starting Humira. Apparently Humira is very effective in PsA and boy is that right in my case! Pretty much symptom free now. I never had psoriasis, or so I thought. I have had funny toenails for about 10 years though which started on there own being painful, peeling and growing extra skin under them (apologies tmi). Since I started Humira they have virtually cleared up, psoriasis on the toenails who knew?!!

My tips for injection would be do before bed, drink plenty of water that day and next day. Perhaps eat what you fancy as it can make you feel/be sick (much less than oral MTX though). I felt very tired on MTX so maybe pick an injection day before the weekend if you work week days.

Best of luck

T x

[mirren]

I have been on mtx for 11 months 😊its just changing to injections and adding leflunomide is the change, so i will be on 3 dmards. Glad humira works for you!

[moomie]

Good luck with the lef and mtx injections Mirren. I was supposed to be starting it a year ago, it never happened. My rheumy wanted me on 4 dmards. Nurse not happy, she wanted biologics. Anyway a year on 3 dmards all at max dose plus preds increasing (oral) since march.

I found at a higher injection dose I did get nausea and headaches but increase of folic acid helped. The injections are better I find. Do get a lot of fatigue though. Nurse said a combo of disease and mtx. She explained it like us being compared to a supermarket battery while people without the disease a duracell. Thought that was quite good.

Sounds like you have a decent team so fingers crossed for you.

[mirren]

Hi moomie thanks for answering - why on earth were you not offered biologics if you haven't gone into remission with 2 Dmards never mind 3? And then the cheek to offer you 4! Nice guidelines??

I was happy to try a 3rd Dmard cos I am technically on hydroxychloroquine for the MCTD side of my condition, my nurse suggested either just change to mtx injectioms and if no improvement to go for biologics or add another Dmard and change to injections and stay on 400 mg hydroxy and give it a good 3 months. Then biologics if no luck. I was happy with that as long as i dont have to take sulphasalazine. Really I feel quite hopeful as iv read good things about leflunomide. And bad, but I'm an optimist 😊