What’s next?

Hi all, hoping for a kick up the bum from someone as am getting myself into a pickle! I was on MTX but stopped as it wasn’t fully working & the increase to 17.5 made me pretty unwell. I then went onto Sulfasalazine which also gave me rubbish side effects & a burning rash so hospital said to stop & would come back to me with possible other options, that was over 2 weeks ago! Now I am very reluctant to chase them as I am enjoying not having that horrible heavy flu like feeling the meds seem to give me even though I am starting to seize up with lots of pain in my feet, shoulders & hands. I know some will understand that oddly is the lesser of the evils!! Long story short, I know I need to get on to the hospital as work is becoming difficult but what could the next med be after 2 DMARDS? I’m afraid I’m becoming more afraid of the meds than the RA 😔

[oldtimer]

The best antidote to fear is information!

Have a look at the treatment pages on the NRAS website.

nras.org.uk/treatment

They will explain the remaining options for you of the DMARDs and the Biological treatments that are usually offered after three DMARDs have not been acceptable.

[Hidden in reply to oldtimer]

Very true! I will do that thank you but not looking forward to round 3, feel washed out from the last 2 😞

[Hidden]

Ok here we go... the fact that you’re seizing up and have pain means your disease is active and this is when the damage will be done and not only your joints. RA can attack major organs as well you just don’t see it or feel it until too late. Tweaking of drugs happens all the time. Higher dose of mtx doesn’t work for me but a lower dose along side other medication may work I’m due to start a new medication in the next week or so. I’m currently on a Biologic . It’s worked to some extent but not fully and I take mtx along side. Minimal side effects.

You have to try 3 DMARDs before applying for Biologics( mtx sulfasalazine and Hydroxychloroqine were my 3)

Do contact your team don’t leave it. Sometimes it feels like your a right pain because they are on speed dial but that is what they are there for. If they don’t know what’s wrong or what side effects you are experiencing then they can’t help. There will be a drug for you but it takes time and they have to follow guidelines. Patience is what we all learn with RA.

[Hidden in reply to Hidden]

There’s the kick up the bum! Thank you there must be something for me...

[Hidden in reply to Hidden]

😉

[Hidden in reply to Hidden]

I am going through the same thing a few of us do. I was on MTX then Sulfa and then Leflumide. However all 3 just wiped the floor with me and more. I have now been told Biologics is the next step forward.

However I always chased and made sure I was not forgotten and kept going till I was actually told this is what we are doing. So please call them they cannot help you unless you tell them and just might have missed the fact they have not called you.

I got a tad low as felt I was not moving forward with the treatment but some of us take time and have to keep going through the roller coaster of changes to drugs and seeing what the side effects are. I feel so much better being off Lefluomide though the pain is racking up but I prefer pain to the side effects.

[IslandLife53 in reply to Hidden]

J1707 You are so right on about these “have to’s” usually enforced by the insurance companies and then having to deal with the different “tiers” of medications🙄what about what’s best for the patient? I am well informed, take notes and questions to every appointment, keep track of any flares. It does take time and patience on our part plus a physician that truly listens. Guidelines are meant to be challenged at times. I had to get the support of my doctor when he prescribed Remicade infusions but my insurance said no; that first I had to try something else. I disputed it explaining that I have a late diagnosis, am having some organ issues and if this is the med that my doctor recommends....approve it, please. They did, but Remicade plus two other biologics (Humira and Cimzia), did not work for my three types of arthritis. Participate in your treatment with a trusted physician, challenge and the very best to all of us.

[Boxerlady]

As J1701 has said, you may find that going back onto the lower dose of Methotrexate and adding something like Hydroxychloroquine (which I understand is a gentler medication but enables other DMARDS to work better) might work for you and if not, trying that should make you eligible for biologics.

It's got to be better than pain and joint damage... 😉

[Hidden in reply to Boxerlady]

I’m hoping that will be a combo like you have said as MTX clearly almost did it’s job! Thanks 😊

[Hidden]

You know what ya have to do. Pick that phone up now! You need to be on some meds to control the damage that’s starting again.

Sometimes a lot of the side effects diminish after a few months. But there’s a lot of options out there, discuss these with your Rhumatologist good luck🤗X

[Hidden in reply to Hidden]

Thank you I am going to see what is suggested next x

[Lolabridge]

I’m sorry to hear you are struggling and in pain. Do ring the hospital and ask for help so your RA doesn’t run rampant. Ask whether you can be considered for a biologic drug or biosimilar? I’ve found one that really suits me and I feel so much better and have no side effects. In the meantime, and because it can take a while to get tested started and a biological to work it’s magic, you could ask for some steroids short term to tide you over.

[Hidden in reply to Lolabridge]

Thank you, from the above replies I don’t think I will qualify for biologics yet hence why I wonder what the next step is after MTX & sulf? guess I will have to see

[Kerensa21]

I started biologics after ‘failing’ on only 2 dmards. I don’t know if this varies with area but might be worth asking? For me, few side effects, unlike the rest. Good luck 😊

[Hidden in reply to Kerensa21]

Thanks that’s interesting & encouraging to hear I’ve seen some good feedback about biologics 😀

[rounder]

Shall we call it a gentle nudge? Don't give up, there are all kinds of meds out there and there will be one that works and doesn't make you dread the med!! Mtx made me feel dreadful, I moved on to leflunomide which suited me much better, no side effects but sadly it battered my white blood cells too much, from there to a biologic, a year on my disease is well controlled, bloods back to normal and absolutely no side effects.........keep searching, your rheumatology team have a while arsenal of drugs on offer!

[Mrspainting48]

As some who tried every drug given to me but could tolerate none .....side sffects with all...diagnosed a in my mid thirties with RA....now early 70s.....know the outcome of both sides drugs and no drugs......15 years ago after becoming very ill with side effects of Entercept an

Injection every third day...My consultant said no more ....i had become intolerant to all drugs even ibruprofen and paracetamol...the consultant too me off his list saying if he could not help me by giving drugs then he could no longer help..thirty odd years of heavy drug use

Had taken their toll.....I was on my own..

I looked to alternative ways .

Mentally i felt so much better my head was clearer....i tried all types of alternative some helped some did not.

The biggest help was my own input....

Eating sensibly...exercise...and learning to rest .....positive thoughts and meditation...

My body was still under attack by RA ...but i also have Osteoarthritis.

So under went two new knees one hip and four knuckles....all under spinals and an arm block for my knuckles....no drugs.

Just before my consultant took me off his list he also diagnosed me with Fibromyalgia .....for years i ignored that as much as i could.....but its nerves gone rougue and is now very active in my body as is the oesteo the RA is there it always has been....my left ankle since March 2020 is breaking down i can not weight bear....the doc gave me lignocaine plasters for a little pain relief .....after ringing for 3 months trying to see her but only getting nurses.....only the virus covid can get attention....she saw the pain i was in the super size swelling of my ankle...which was having a knock on effect on my knee and hip joints causing

More pain....She got me to a new consultant as i had moved home and now lived in a new area.I saw this new conslutant who after examination told me I was in the forth stage of RA with very Active Osteoarthritis and very actice Fibromyalgia....plus totally drug

Intolerant......I knew this.

So said she would refer me to physio.

I got a call from physio we discussed some massage and reflexology....

But because of the virus i cant have any treatment apparently no hands on......

So once again i am on my own surviving the best i can ....i dont give in easily.

I have found there are lots of others like me so i am not on my own in the struggle.

Our fight is personal ts our own bodies fighting us.....

At the end of the day the choice is yours.

I have many friends on RA drugs who are happy and stable on them and have been for years.....but for me and thousands like me they dont work....

The choice is yours.....but you have to try the right drug could be there for you...

In the end I had my choices removed...

One day there will be a cure ......stay strong and positive its the best way ....take care of you.

[Empress30]

Have they tried you on biologics? I tried 4 before I finally went on Xeljanz. and mtx.

[NN55]

In my case I had Hydroxychloroquine, then Methotrexate with Sulfalazine and now Tocilizumab as well. And altho I have only had 5 weeks worth of Tocilizumab I am feeling very cautiously optimistic. The right combination of drugs will help you but if you have slipped through the net it could take months or years to get back on course. Please dont leave it. It is not just about the joint pain - these diseases could affect your skin, heart and kidneys too and significantly shorten your life expectancy. I had awful side effects but after the first month on each drug the side effects wore off . Persevere if you can xx

[zeus49]

Hi Mcmayo it's funny you should say that 're your meds. My finger swelled up and I had bad nosebleeds. So the GO stopped my methotrexate and benepali. Whilst I was on penicillin. I have now had no meds for 3 weeks. Now the pain of rheumatoid is creeping back. My finger is still swollen. My great for us turning down because I have a ruptured tendon. After several operations.on my feet. I am feeling my anxiety levels. I feel also that disabled people are left with no support of backup even from the GPs. Because of the Coronavirus. It's pretty sad really. Zeus 49.