Finding it hard to get medication working for RA

[SweetPeanarrowboat]

Diagnosed 6 months ago. On Prednisolone, Sulfasalazine and Methotrexate but still in pain. Now finding it hard to walk very far as intermittent pain in leg.

[Gramma3]

In a similar state as you and diagnosed in Sept, although I have been able to stop steroids and Methotrexate injections started a few weeks ago. I feel damage is still been done to my feet as finding it difficult to walk. I am waiting for an answer from my Rhemy team. They may start me on something else too. I am 62. I wonder whether being older limits drug choices due to side effects?

[Hopeful1 in reply to Gramma3]

I had a lot of pain when newly diagnosed, so sad to say goodbye to wearing my lovely heels! But that is a distant memory now. Around 60 is a very common age for women to be diagnosed like I was, so that is an average rather than an additional worry. Glad to say the drugs did work given time and there are many alternatives you can be offered. At 70+ and with other conditions I still lead a full life.

Have you checked out the NRAS website, a specialist Rheumy charity full of excellent info.

Good luck in your journey

[medway-lady in reply to Hopeful1]

I had my foot operated on a few years ago now and straightened. It was great and so going out I still wear heels. Blue and sparkly heeled high laced sandals. My favourite shoes ever.

[AgedCrone]

You must give it time…..getting set on the right medication is a marathon not a sprint. ..and these days there are so many new drugs to try you will get there - but you will have to be patient .

[Joannos]

Hi finding the right combinations of drugs which work for you takes time. Unfortunately pain is your companion now, take pain relief to make yourself comfortable, discuss options with your GP. You will find your way. Also, don't let pain stop you from living.

[sylvi]

It takes a while to get a drug that will work for you. What works for one won't always work for someone else sorry.xxxx

[HeadInASpin]

This month marks two years in for me since this disease raised its ugly head and I’m still not there yet. MTX didn’t control the disease so LEF was added. Thought things were going ok but then had to stop MTX due to it affecting my liver. Started Yuflyma (alongside the LEF) four months ago but I’m still having flares and I think the LEF has pushed my blood pressure too high. I’m trying to be patient and optimistic that this year will be better. I have an appointment on Friday with the rheumy team, so I’m hoping they’ll be able to help. I think finding the right drug is like dating….you have to try quite a few until you find ‘the one’. Good luck and hang on in there.

[Pepperpot22]

As others hav said, hang on in there! It took 18 months to get the right combination of meds for me. It’s a case of gradually increasing doses & adding other meds in until they find what works for u. I know it seems like forever wen ur in pain but hopefully you’ll feel better soon!

[WilfDog]

HiSorry you are still struggling.

As others have mentioned, it's a trial and error process.

What I would say is whilst you're still trying to find what works for you, see if you can start on an exercise programme. Your rheumatologist team could refer you to a physio. Regular exercises for the whole body will help keep your joints protected by building up the muscle around them.

I also take potent supplements which have supported me alongside the biologics and prednisolone.

I hope you find what works for you. Good luck xx

[CoastalLiving in reply to WilfDog]

Arthritis Action have free inline exercise sessions for their members. Membership is a very modest fee - £20 for the year I think. Trying my first one tomorrow

[WilfDog in reply to CoastalLiving]

That's great CoastallivingVersus Arthritis used to do Chi Me sessions too. Seated or standing for free.

Enjoy your session tomorrow xx

[SweetPeanarrowboat]

Thank you all so much for your replies - so much useful information and really helpful hearing other people are experiencing this. I will get some physio sorted, try to be a bit more patient and get some exercise organised - I am interested in trying T'ai Chi. Will look at the info on website.

[WilfDog in reply to SweetPeanarrowboat]

I have done Qigong, a form of Tai Chi for many years and it works really well for me alongside my usual exercise routine. See if you can get on some free tai chi sessions to help start you off. I know some charities/organisations do online ones.

Exercise isn't a cure but it builds up the muscle which helps protect your joints and ease the pain. Qigong also helped with core strength.

Hopefully your med combination is found quickly.

Doterra Life Long Vitality Supplements and therapeutic grade essential oils also help me. My consultant is fully on board with this, as I always check with her before starting complementary meds. Good luck xx

[purplecyclist]

I'm not a big fan of swimming but since diagnosis I have been swimming more, it helps keep me moving and i feel more positive and I sleep much better and have less pain on a day i had a swim. Might work for other people too? too much not moving never makes me feel good afterwards.

[Boxerlady]

I started Tai Chi for Arthritis ( had some lessons and have a dvd but it's probably available online and is relatively easy to do by yourself), had some swimming lessons (to get some confidence having not swum for 30 odd years!) and started Aqua classes (gently!) in the year after diagnosis when I was still having problems. Now that things are well-controlled, I'm still enjoying Aqua classes and am able to do it more energetically. I find that moving around helps me both physically and mentally 😊

[Soundofmusic52]

hi it took me 18 months to be diagnosed with RA Then I would say 10 months to find the correct medication for me . In that time I was off work I couldn’t walk I was very depressed. But now my life is good I am on injections Benepali weekly and life is good so hang in there good luck

[Nyreedw]

I needed both plus hydroxychloroquine with them to get me under control. This was before biologics were around. In fact I'm back on those again as I'm not allowed biologics due to severe op complications. Not brilliant but doing better after over a year off meds. Lasted 15 years at the start, then 10 years on humira and mtx. Not allowed even a steroid injection due to osteoporosis. Oral steroids, only once for Bells Palsy and made me ill, was horrendous. X

[Lornap1]

hey, It really is a trial with these medications and some take longer than others to kick in along with different medications to try. I was diagnosed 18 years ago, I had just turned 30. I have tried so many medications and all have failed. Im getting a delivery of Rinvoq tomorrow, my 3rd jak inhibitor in 3 years and after that they said there’s nothing left to try and I’ll have to go back onto something I’ve already tried. I’m praying this medication works for me as other medical issues are starting to take hold due to my ra not being controlled. Hopefully something will work for you soon