How long to get on right meds?: Hi all, It's been over... - NRAS

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How long to get on right meds?

jaye-london
jaye-london

Hi all,

It's been over 3 years since I first went to my GP with symptoms and my RA pain is still not being managed. Delays seeing RA consultant, then wrong diagnosis (PMR) despite clearly not fitting typical PMR symptoms. Eventually everything ruled out so diagnosed with seronegative RA. Tried the usual hydroxychloriquine, methotrexate (max injectable dose), been on steroids for 2+ years, on Benepali since October 2017, but nothing has helped. I've been waiting 3+ months for an 'urgent' appointment with TNF clinic (finally coming up in a couple of weeks) to try a different biologic. I'm feeling really worn down and hope the next drug might finally be the right one for me, but expect it'll be another 3 months of trying it before knowing if it's working or not. I'm frustrated that initially I was told that if the Benepali was going to work I'd know within 3 months... yet consultant decided to keep me on it for much longer before agreeing to try something different. It's soul-destroying. Sorry... having a bad day today. :-(

So I'm curious, how long has it taken other people to get on the right meds for them? Am I just unlucky, or is 3 year nothing extraordinary?

22 Replies

It does sound an extraordinary length of time. For me, once it was confirmed by blood tests and subsequent monitoring at check ups, I was on my correct treatment within a few weeks. Mind you this was a year or so after first developing swollen joints. At the very beginning, The GP sent me straight to a rheumatologist and the initial treatment was not very effective [ Naproxen/ Salazopyrin/ Paracetamol until eventually biologicals were use like a silver bullet.

The rest as they say, is history!

Hidden
Hidden

I'm afraid I'm in same boat...same long stretch!

I'm 17 months in and still struggling, sero negative RA ...not ruled out...lots of other stuff going on to. It's a bummer.

19 months and still not sorted. On my forth D-mard and on steroids now too. Hydroxychloroquine was great but I developed itching after 4 month. It's all the waiting I don't like. After investing time in a new med, only to have it fail is annoying. I feel like I'm always back at square one! Seronegative RA is the current diagnosis for me. At least I have a diagnosis now!

That's been frustrating to just give me a diagnosis! Still waiting ... rheumy knows autoimmune- mixed conn tiss d but leaning lupus n now maybe RA as well

Im the same but 18 months in. On methx, hydroch, sulpha, paracetamol & dhydroc, folic, lanzoprasole, losartin, multiple steroid injectiins into different joints and slow release into bottom and now 10mg oral steroids for 4 months and feeling rough. Just replied to post on shoulder pain. Told not bad enough for biologics. I feel for you as im only half the time that you have been. Sorry not to be more positive.

It's a nuisance in the UK, as each CCG has a different care pathway for disease management (I'm an ex NHS manager). For example, cambs includes steroids, norfolk doesn't (I'm in Norfolk). Steroids work for me, so I jump up and down a lot to get what works for me. I'm now pushing for biologics as here too, my markers aren't bad enough. If I shout enough, they'll give in eventually. It's wrong that that's the case, but sadly it is.

On a cost comparison, everything you're taking together with longer term treatment, biologics would be more cost beneficial. Unfortunately, NHS works in short timescales and not long term forecast, which is partly why it's in the mess it is (will get off soapbox!!).

Don't stop asking for what you need and not what the care pathway tells the medics what's financially viable 🌻🌻🙊🙈🙉

Thanks for reply. Up until recently i have felt fortunate as have had few side affects compared to those I read other people have, but I must admit im struggling with this arm pain as its debilitating and mood changing. I have a good rheumy so I will see what he says. I wouldnt know which biological (i read others have been given a choice) also that side affects are not great. However I have no doubt things will improve and I need to be patient and im grateful that I am functioning to a certain degree. I wish you good progress and a good quality of life. 🙄

Hi - if any consolation I am in the same boat. Was on mtx then changed to entanercept In January only to be told if anything my RA in my right ankle is worse! I did think what is the point with injecting this darn chemical into me for things to be worse not better. He is changing it to a tablet form biologic in July. So here we go again. Hey ho I remain positive we must 😊 Don’t worry it shall all work out.

Ruth12345
Ruth12345 in reply to Hessie5

I agree ☺

5 years in - same boat. Was in remission on Mtx but they took me off it (due to change of rheumatologist I still don’t know why). Recently moved region and over 3 months waiting for new rheumatology clinic - nothing come through yet. I don’t know what to expect in this area. Totally demoralised. ☹️ But I will say that when the meds were working I felt great, so there is some hope...

I am on several meds.gave tried 3 different biologics. Now my rheumatologist says he can't put me on anything else even thou in agony at time.my left hand sizes up and any touch I jump so much.I was diagnosed in 2012.seems some of us get bad doctors

It seems to be 'it depends' for most of us. 18 months in for me. Hydroxy and sulpha failed me so on 25mg MTX metoject and it's not enough. More joints seem to be joining the merry dance that is RD/RA and the fatigue is a problem. I was told that biologics weren't an option for me as I have had a lot of infections and only LEF was an option. I sincerely hope you find 'the med' very soon. Hugs

J

Thanks for all the replies. It really isn't good that we have to go through so many hoops of trying out the 'low-level' drugs over such a long and drawn out time until they find something that works. I do understand that they try out the safest (steroids?!) options first and, if those don't work, they build up to the heavy guns of biologics.... but to drag things out for so many months or years is just torture. As for withdrawing meds that have been working.... grrrr!

I suppose I should count my blessings that at least I haven't had any extreme side effects from the drugs. The Benepali has only recently started creating an itchy area around injection site. Dreadful weight gain from the steroids, which I've forced myself to reduce as much as possible, but cannot get below 8mg. Whilst I'm far from 'comfortable'/pain free at this level, I can just about tolerate things... though acid reflux is getting worse.

I'm doing my best to get lots of rest today before work resumes tomorrow. I expect I overdid things over the w/e and the fatigue hit me hard.

cheshcat
cheshcat in reply to jaye-london

I've been feeling the same way. On one hand I do understand, if we respond to the lower level medications, it's better the in doing biologics right away if they are not needed. I just can't believe they draw it out so damn long!! Seriously, years out of our life suffering, we can't get this train moving any faster then this???

Hi there, it took 5 years for the correct cocktail , it's a very slow process , unfortunately , we are all so different, what works for me, may not work for you. 😊 You will get there !

Very true, we're all different.

Hi

I’ve only been on journey for short trip 🙂on Mtx for a year and sulz 7 months. My nurse says might have to add something else or swap one. I’m yet to find magic pill. But I understand it’s a long trip.

But seeing how long others have being trying I can wait x

Hi

I was diagnosed 9 months ago. On the third med now about 3 months into it-soon I will know if it works I hope!!!! Maybe you will get lucky and this one will work. That’s what I say anyway. Oh, bad side effects are why the first 2 meds were stopped. Might have worked if not for that. Good luck 👍

You have to remember it took years to build up the immune system that is now being suppressed. Takes some time my friend.

I'm a year into it myself. My RA is worse now then it was a year ago. I see my rheumatologist next week and I'm going to hope he puts me on something better! I'm sero-positive (if it matters).

If GP is Gabapentin then that's just for nerve pain I've been told. I have to take other meds for pain with it. I take Norco for rest of pain. I had a reaction to the planequil. I'm also on Duloxetine and Methotrexate. Ive been flaring for months with some improvements but not 100%. Fairly new at this and it's getting harder to go to work in the mornings so on FMLA if miss for autoimmune D- leaning Lupus and RA

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