How long to find the right treatment

[JulieR2]

I have recently spoken to my rheumatologist and he has increased the dose of methotrexate I am taking to 17.5 mg. He has suggested I take steroids too but after taking prednisolone for 3 years I am trying to stay away from this option. I know everyone is different but I am wondering how long others have taken to find the right drug therapy? The rheumatologist did say the first few years can be tough with this disease. I am finding it hard to continue working. Not because of pain I just feel generally unwell… would be interested in others journeys.

[Deeb1764]

HiI was diagnosed in June 2018 and began on MTX in Oct. On and off MTX due to chest infections from RA and newly acquired asthma. Job I had to keep decreasing hours and days as I was on 25mg MTX. Side effects and lots of other issues wih a final flourish of anaphylactic shock I was taken off Jul 19 MTx. Went on to Lefluomide taken off a month later then Sept Sulfazine off this Oct 19 then told start biologics. Made reduundant due to covid impact on business and my health not being able to do the role (I agreed with this) Began on Benepali Dec 19. Stopped Benepali in March 20 and then started after a long wait to discuss new drug Olumiant in Jan 21. ( I think dates a bit out but) and now on this which is a JAK inhib.

Olumiant been best so far for me but I then got Fibro diagnosed in April 21. So right now I will say its been a 3 year tough ride and I still dont feel I am in the light. I have days of despair as I watch my life go past me and then other days push thro and be positive. Of course people out there worse than me but this is my life and I want more from it at 56. I want to be able to at least work part time and be able to do some form of exercise and not sleep thro most days.

Its hard going but this forum has kept me sane. It would be great to say took mTX and hey presto all sorted but this was not the case.Some have totally opposite stories.

So good luck with your journey keep pushing for your right to good health and keep asking questions and adapting your body to how you feel. SO if you body says rest take it. And if on fire day dont over do it. ( this is from a woman who can write this but not necessariy follow it)

Dee

[JulieR2]

Crumbs seems like I have a long way to go! Hope you are doing a little better now. You have had an awful time.

[mintygreen44]

Hi Julie!I was diagnosed in Jan 2015, three months after the birth of my first child, I’m 44 now. I had a second baby 2.5 years after my first so that delayed my starting Methotrexate. It didn’t work for me anyway! I’m currently taking Leflunomide and trying my third biologic, tocilizumab this time….. I have realised recently that I have been just ignoring my RA and not focusing on myself or my treatment at all, I’ve been focused on the kids. But if I’m honest I don’t think I have ever had a drug that works for me. I get steroid injections whenever I’m allowed and this gives me a few months pain free before it starts to get worse again. I think I’ve made the mistake of not being a strong enough advocate for myself and not learning enough about what treatment options should be available to me etc.

I am now in a position with my kids at school where I could go back to work but I have no idea what work I would now be able to do! I can’t do anything too physical and I struggle to type etc. and the fatigue is fairly intense. This can be very depressing!! But having found NRAS just in the last few weeks and read things that others have written I feel at least as though I am not alone. Others are going through this, it’s hard and scary but not unique to me. I’m still hoping that there is a combination of medication out there that will give me back some of my former life 😊😊

[Boxerlady]

I was lucky in that I haven't had any problems with the medications I've been prescribed. Started on Methotrexate and Hydroxychloroquine in late spring 2019 and things gradually improved until about a year later when progress stalled and then things deteriorated. With encouragement from this great community I contacted my nurse helpline and my Methotrexate was increased. When that didn't work Sulfasalazine was added and for me, that seems to have been the missing piece of the puzzle. The dose was increased last December when the registrar thought that there was still progress to be made (although I was feeling much happier) and since then I've been able to drop my Methotrexate from 25mg (injection) to 20mg with no obvious issues.I'm now pleased that I pushed for improvement, despite doing better than many on here; working with my team was the answer but they only know how you're doing if you tell them 😉

[Oshgosh]

I’ve only been diagnosed for nearly 3 years,but it seems that there’s a lot of waiting and trying drugs.M sorry. Can’t be more encouraging.

[3LittleBirds2]

Hi JulieR2

Sounds like you have a good and realistic Rheumatologist. The first few years can be tough as we adapt to the condition and can struggle to find a medication that works and that we can tolerate.

I was diagnosed in 2013 and it took a good 2-3 years until I had a medication that I could either tolerate or that worked. Unfortunately in that time due to being initially diagnosed with a mild form of the disease , I suffered with a lot of damage, an on the ball Rheumatologist is worth their weight in gold, the longer you have the condition the more you can learn to self manage and push for things more too.

I am still working and absolutely will continue, I did have to drop my hours slightly to allow for a later start in the morning but you do have employment rights at work too. Applying for PIP helped me too and was able to pay for extras that keep me in work too.

Good luck 🙂

[AgedCrone]

RA is a learning curve…but I find listening to your rheumy & sticking to his recommendations is the best way to go….unless a side effect is unbearable grit your teeth & stick with it…your rheumy will understand how you are clinically reacting …& adjust your meds. If you read back through posts here….if really does appear if you start chopping & changing your prescribed meds too often at the beginning of trying to find the regime that will suit you it doesn’t bode well.

Of course right now seeing a Rheumatologist is not as easy as we would like, but do talk with your rheumy nurses…most of them listen & do understand when you really need to change meds.

Of course the trouble is…as I found after taking Mtx very successfully for 7 years & thinking I had found my life long drug…it just stopped working.

But in 2021 we are lucky in that there are so many new drugs coming along….nobody should have to wait too long to find a successful regime.

So do what we all do…plod on & hope!

[Mmrr]

I'm now approaching 5 years since becoming unwell with RD, and on a combination of med 9 and 10 (11 if you include intermittent oral prednisolone along the way). These meds are working better than any others, but I'm far from leading anything approaching a normal life. Other people are luckier and the first or second med tried works well for them. We are all different, you just dont know what is around the corner med wise, you might find your lucky one soon.

[KittyJ]

I thought twice about posting an answer because I don’t want to make you despair even more. It took 5 years or so for me to find any long term relief from any drugs. This was 30 years ago and then you were told to stay on a drug far longer than now as there weren’t so many options if you changed. Tolerating side effects was something you just had to do if you were getting some relief. Do remember though that drugs nowadays are so much better than they were then and with biologics now being prescribed sooner there is a big chance your journey will be far from mine and others on here diagnosed a long time ago. I did have to stop work but have worked part time for many years now although like you have said there are limits on jobs I can do but they are out there. You may have to change your lifestyle but it’s not all doom and gloom, you just find new ways to do things and new things to do.As you say you feel generally unwell have you had blood tests done to see if there’s another reason you aren’t feeling well? Sometimes we think everything is our RA when it is something else that once treated sees an improvement. I hope you feel less ill soon 🤗

[AgedCrone in reply to KittyJ]

You are so right KJ…a lot of the hiccups I have had over the last 20 years have not been helped by having RA I’m sure……but it’s 99% certain I would have had them anyway…& I’m sure that is true of a lot of people with AI diseases….& GPs often don’t help by packing us off to our Rheumatologists…..which was not what we needed! But as you say there is a so much better choice of suitable drugs these days….it is really unfortunate not to find a suitable set of meds reasonably soon after diagnosis….but it’s a bit like kissing a lot of frogs before we find our prince…..it’s all worth it in the end.

[Hidden]

Hi Julie . The journey is different for everyone.

I was diagnosed 5 years ago started on MTx and did really well for 2years then hell broke out . I’m still on mtx but have tried Hydroxychloroqine, sulfasalazine and etanercept over the last 3 years all no good . Started Barcitnib (olumiant) in December 2020 and it’s working really well although still have problems with my right ankle . Recently diagnosed with fibro which is a bugger and likes to stir things up .

There was a NRAS post fairly recently on early intervention with Biologics for moderate RA very interesting.

Be proactive if things are not right or your not improving or getting worse keep contacting your team they need to know so they can help x

[Sheila_G]

Yes I am afraid it took a good while before I got to where I am now. I have had RA for over 19 years and have had some very difficult times in the first few years. I have been on various combinations of drugs and have had many injections in many joints. I am afraid it is the nature of the beast. I am in a very good place now and have been for several years but sorry to say it can take a long time to get the right meds for you.

[stbernhard]

Have you raised the question of adding another DMARD or a biologic to MTX. If after three years you still have to take steroids, something should be done. After NRAS won the ruling that patients with moderate decease also qualify for biologics, I would definitely ask the question. Good luck.

[JulieR2]

Thanks for the reply my consultant wants me to try 17.5 mgs then review on 4 months. He has said he has a range of options open to us but wants to go step by step. It’s just so exhausting. To be fair they have suggested I take time off now and go back to work after Christmas. I am my own worse enemy but I know that I probably need a good few weeks off to rest and give my body a chance 😃

[Deeb1764 in reply to JulieR2]

Take some time out if you can as you might find this is what your body needs. My RA nurse looked at me after 6months of trying to work and said 3 key words rest rest rest.

[JulieR2 in reply to Deeb1764]

Thanks so much I know you are right😞

[AgedCrone in reply to JulieR2]

Take up the offer Julie…..stay home until next year….after it is only a few weeks now, look after yourself without the pressure of having not only work..but the journey to & from & all the other irritations……it really does help to wake up every morning knowing you can take your time& if you start to fade you can rest up. You are right - give your body a chance to adjust. A lot of people would love to have such an offer,

Your Consultant seems to have the right idea ……slowly Increasing a drug that is working rather than adding other drugs too soon….so maybe you should go along with him?

Looking back that’s pretty much how I went through the first few years & I’m still pretty much free of major joint damage…..many years later.

I’m sure most of us far along the RA journey will agree…having to push yourself too far in the early days after diagnosis does not seem to bring about quick lasting results.

Good Luck….I hope 2022 brings you a successful outcome.