failed with methotrexate and sulfasalazine - what’s next ??

[Geordieland]

morning all ! Methotrexate made me feel very sick and dizzy and sent the ALT numbers for my liver sky high ( from 12 it went up to 327 😳 ) Was given sulfasalazine and after 6 weeks I’ve stopped taking it as the feeling nauseous was just getting worse and I’ve had the worst headaches since starting it ! I’ve got an appointment with my rheumatologist on Tuesday and wondered what other meds people have been given ? I was diagnosed with PMR 2 years ago and am taking 5 mgs of Prednisolone daily - my RA is affecting my hands, feet , hips and spine . Apart from that am fine 😂 ! Advice would be gratefully received !

[Hidden]

Hi it is so frustrating isn't it when you have adverse reactions to medication.

Perhaps you will be offered a biologic next as that seems to be the usual treatment path in UK.

I would be very clear with all your side effects (at your next appointment) and insist on a change of medication.

Take care. You sound upbeat, despite it all. Well done. 💐

[Geordieland in reply to Hidden]

Thanks Fuzzy 👍 I’m a firm believer in knowing “ my subject “ and I’ll definitely be clear about how rubbish it made me feel - it was like being permanently seasick or morning sickness all day 😩 ! 🤞 there’ll be a med that will help ! X

[bpeal1]

There are many things your rheumatologist could try next. I suggest looking through the medication section of the NRAS website to give you an idea of what might be tried next and some useful information to help you join in the discussion. nras.org.uk/information-sup...

[Geordieland in reply to bpeal1]

Thank you ! Will have a look 😊 x

[Madmusiclover]

I ‘failed’ on those too. I also had hydroxy and leflunomide. Also not effective and I felt awful. They could then put me on a biologic but that didn’t do anything either. Finally I got a JAK. So far so good.

[Geordieland in reply to Madmusiclover]

Wow ! I’ve obviously still got an “ interesting “ time ahead of me 😳 ! What’s a JAK ? Not even heard of that one ☺️ X

[Madmusiclover in reply to Geordieland]

Baricitinib. I can recommend the NRAS booklet (free to download or hard copy) on Medications. JAKs are the latest tech In RA drugs.

[Geordieland in reply to Madmusiclover]

Will download the booklet - many thanks

[Al1954]

Hello i had everything already for my RA they want to put me on a Jak.Has it had any side efects for you?.Whitch are yoy taking?.sorry inglish i am from Argentina.Thank you

[Al1954]

I have had cancer with Enbrel and Rituximab didnt work.Whitch jak are you having? THANKS

[Madmusiclover in reply to Al1954]

Baricitinib. Been on it 3 years with odd breaks for operations etc. on a day to day basis no side effects but makes you prone to chest infections in first year (I had 2) and shingles; which sadly I got on my face. More importantly it’s been the best at controlling my RA. Not 100% but generally pretty good.

[Evie3]

Poor u ….got that t shirt from 40 years ago! There r so many meds out there. He might give u course of steroids to dampen down the inflammation but it does seem biologically are used sooner rather than later. From my point of view they gave me my life back. As someone said ask questions and make sure there is a plan of action. Face to face appointments are few and far between. Look forward to hearing how u got on

[Geordieland in reply to Evie3]

Thank you 😊 will post after my appointment 👍 x

[Joanneforbes]

Oh I can relate to your story I came of methotrexate then tried again nope liver issues too plus Sulfazalazine and hydroxaclorine I have just started AZATHIOPRINE so far a little nauseous on my upping dose but nothing like the other meds ! Hope you get something soon x

[Geordieland in reply to Joanneforbes]

It really is a lottery 😳 Thanks and good luck with your new meds x

[Joanneforbes in reply to Geordieland]

I was told RA is a journey! One hell of a journey for some of us 😂 x

[Benepaliuser]

I had a similar reaction. I was then put on Enbrel which then became Benapali. Improved my life significantly.

[Geordieland in reply to Benepaliuser]

That’s good to hear ! 🤞 for my next meds 😊 x

[SheilaT3271]

I was diagnosed with RA some 6 years ago, was put on Sulfasalzine, Hydroxycloroquine and Methotrexate. When I asked to reduce meds my rheumatologist said could take me off all but the MTX as this is know to be extremely effective with RA. However I too had two similar reactions to MTX so when I met my rheumatologist after agreeing my liver couldn’t tolerate it he said he would ‘qualify’ me for a biologic which has to be passed by the hospital team. Technically I didn’t qualify as majority of my pain is in hand and feet joints which aren’t generally counted in qualification criteria but he would make sure I qualified! So I guess you have to have a good consultant who knows the system and and is prepared to do what’s necessary. Have now been in Etanercept/Benepali for couple of years mostly with considerably less pain and the odd flare so have recently added Luflunomide to ‘mop’ up any residual RA symptoms. Have also had a couple of Steroid injections as and when I’ve had a general or more specific local flare in my knee. Hope this helps.

[Hisue in reply to SheilaT3271]

I find it disturbing that with significant damage in my hands & feet, these are disqualifiers. Can you lend any insight?

I also have extreme anxiety, which the rheumatologist does not address other than prescribing antidepressants. Thanks.

[SheilaT3271 in reply to Hisue]

Wish I could lend more insight. It’s possible qualification criteria may differ in different healthcare providers but given the cost of the biologics they need to demonstrate they have explored several options in terms of medication before considering biologics and think I was lucky to have a consultant who knows the system and can make a strong case.

[Geordieland in reply to SheilaT3271]

Wow you’ve had quite a journey ! Thank you for replying and giving such a lot of useful information 👍 Here’s hoping your pain level continues to be lower 🤞 Will report back after my appt tomorrow 😊

[SheilaT3271 in reply to Geordieland]

Good luck tomorrow. Hope you find the right solution for you.

[Geordieland in reply to SheilaT3271]

Thank you - have at least got a lot more info from the lovely replies on this site 👍

[Sjhoney]

Hi, sorry to hear you’re having problems finding the right meds. I ended up on lefluonomide which worked for a couple of years then wore off. I’m now on a jak inhibitor which is working really well! I’m keeping everything crossed 🤞 Good luck! Xx

[Geordieland in reply to Sjhoney]

Glad it’s working for you 👍 I’ve learnt so much from the great info and experiences shared on this site and I’ll be very interested to see what I’m offered at tomorrow’s appointment !

[oldtimer2]

I wwould echo the post that suggested that you you look at the treatment pages on the NRAS website - lots of information and accurate.

[smilelines]

I am on leflunimide. My doctor said that it is equally as effective as the methotrexate and at the same level of immune suppression. As I understand it the next level of medications are the biologics. I am not 100% sure though. Perhaps they are not stronger but rather work in a different way. The leflunimide gives me no side effects. Methotrexate was awful.

[Geordieland in reply to smilelines]

Couldn’t agree more on methotrexate ! It really didn’t work for me and sadly the sulfasalazine was just as bad ☹️ !

[smilelines]

Sulfasaluzine gave me sores on my face and I didn’t notice any benefits. Very concerning when I had to wear bandaides on my face so I did not gross people out. Going on Coscentryx now as the leflunimide has lost it’s effectiveness. I was not wanting to go on biologics yet as I didn’t want to suppress my immune system further but I guess I have to. I think trying leflunimide is worth a shot if you find out it is gentler than the biologics.

[Geordieland in reply to smilelines]

Thank you that’s good to know 👍Really got no idea what he’ll offer me today ! Sores on your face sounds awful 😔 ! My skin is already rubbish and this because of taking Prednisolone ☹️