Just asking, I have just started drugs, so if your al... - NRAS

NRAS
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Just asking, I have just started drugs, so if your all on drugs, your all still get pain then?

VeronicaF
VeronicaF
36 Replies

I thought once your on the drugs they take the pain away, but on some threads everyone seems to still be in pain? even after remission?

its early days on H drug for me so I don't expect it to work yet, but whats the point of these drugs if after everything your still in pain.

I don't understand

sorry I don't know how else to put it

36 Replies
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MandiS

Hi

I’ve been on drugs since March 2017 I don’t think

I have had more than two pain free weeks. My understanding is that if we continue to take the meds we will eventually go into remission and hopefully have at least several consecutive weeks of no pain. Wouldn’t that be delightful 😊

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CarolineC57

Hi Veronica - the way I understand it is that the drugs are really to make sure the RA doesn't get any worse, rather than completely stopping the pain. However, I'm not currently on any drugs as I don't yet have a diagnosis, so that is only my understanding of the way it's supposed to work. There might be someone who's been on drugs for RA who knows more about this than I do though.

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VeronicaF

I was given the steroid to tide me over until meds start working, so I thought it would for pain????

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purl
purl
in reply to VeronicaF

I was given a steroid injection before starting mxt, was told that it was to take the swelling down. The drugs won't cure RD they are to control the disease by suppressing the immune system and stop it attacking the joints.

I've been on mxt and hydroxy together for 14 weeks, I still get some pain and stiffness of hands but a hell of a lot less than I used to have. I take Ibuprofen/paracetamol for pain when and if I need them. It takes a while but once you have found the right 'cocktail' of meds you should begin to feel better. :)

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Simba1992
Simba1992
in reply to VeronicaF

The steroid usually takes away pain quite effectively and infact it is also an antiinflammatory. Yes the RA meds, when they work, slow down progression of RA. It has also been shown that remission very seldom mean a pain free ongoing situation. This is in fact something research just recently have started to look into. Why the pain persists even though inflammation is very low.

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VeronicaF
VeronicaF
in reply to Simba1992

you know my tablets sterods, haven't had them yet, they are 5mg each tablet, if I cut in half the tablet, would that does make my hair fall out? or be hard to come off of, or not work that does after a while where I need higher does? I don't want to get hooked on them

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Simba1992
Simba1992
in reply to VeronicaF

5mg is a very low dose. You probably will not have any side effects at all, certainly not hair falling off, that's mtx. If a small amount like that takes your pain away I do think it's a good idea to try. It won't be hard getting off it if you don't take it for a very long time.

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VeronicaF
VeronicaF
in reply to Simba1992

Thank you

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nomoreheels

As you've been prescribed steroids I would think they intend you to take them to tide you over until the HCQ starts working. As 5mg is a low dose I wouldn't think you'll have any side effects on benefits. If you have a few weeks to a month's course or if you weren't also given a tapering plan then you'll not be on them long enough to become dependent, they won't be hard to come off.

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AgedCrone
AgedCrone
in reply to VeronicaF

Hi Veronica....I had 7 virtually painfree years on Mtx........couldn't take steroids, but for most people they calm down the inflammation, so most of the pain goes.

Dmards don't actually take the pain away...they protect your joints, & as they then don't deteriorate they are not as painful

Once you start taking the steroids you should have less pain.

But none of this happens overnight.......you have to be prepared to give both the Hydroxy & the steroids time to work,& that could be at least three months.......so try not to stress & be patient.....you will start to feel better, but if you are tense & anxious it tends to take longer.

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helixhelix

Sorry for those in a different position, but I haven't needed to take a painkiller for weeks.....

This year has been a bit up and down, so I'm only just getting back to a controlled disease. But previous to that when I was stable on triple therapy I had several years with minimal pain. Yes if I overdid things I would feel it afterwards, and I always have some pain in my feet from damage.

I think you need to consider that this forum doesn't reflect a full range of experiences of RA. Often people here are those who are newly diagnosed, and those with the most difficult RA. The people who move into a pain free remission are off living their normal life again.

I think you should be aiming to be largely pain free, unless you have damaged joints - or another condition such as arthritis or fibromyalgia.

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Dodo1943
Dodo1943
in reply to helixhelix

I can so relate to hh's experience: late RhA diagnosis in Apr 2016 but in 'clinical remission' mid-2017 I have not had to resort to any painkillers since weaning off Prednisolone in Apr 2017.

Trips into town result in discomfort in my ankles but that's remedied by elevating my legs and not attempting anything physical after grocery deliveries are put away. Depending on the amount of distance I've covered in conducting business in the city, I sometimes rest for the whole of the next day but that's more related to an ankle that fused without surgical intervention thereby becoming set at a fraction over 90 degrees and inoperable. I loathe walking downhill or over rough ground with my subtalar joint incapable of allowing me to keep balance and just sitting at my pc for too long renders both ankles useless. Methotrexate is my saviour: now down to 15 mg by 2 stages from the 20 mg that assisted the weaning off steroids. Sadly, recently diagnosed with Age-related Macular Degeneration, I now have more fears concerning preservation of sight than mobility .....

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hawker955

Hello Veronica, I get some discomfort depending on what I do. But my treatment is still highly effective. I have no swelling, no fever, no anaemia and the pain is intermittent depending on activity. RA has many other effects apart from pain so the treatment helps reduce those as well.

I certainly would not like to try and cope without my Humira.

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Gigi71
Gigi71
in reply to hawker955

I wouldn't want to be without my Humira either, not happy my health service changing to a bio-similar X

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hawker955
hawker955
in reply to Gigi71

Yes Gigi, I is a bit worrying but one has to trust that the testing shows it to be as effective as Humira. As long as it works well, I don't mind what brand it is.

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Gigi71
Gigi71
in reply to hawker955

I hope you are right. X

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Downtime
Downtime
in reply to Gigi71

Me too, but my Rheumy team have said that if the biosimilar turns out not to be as good they will let me go back on to a Humira.

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Gigi71
Gigi71
in reply to Downtime

I saw the rheumy registrar last week instead of the consultant and I did bring this up, I got the feeling he wasn't very clued up on the changeover. I am going to write to my consultant, my next appointment is with the nurse in 6 months, unless they plan to see us with regard to introducing the bio. That sounds reassuring for you, I would be happy with that. X

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Gigi71
Gigi71
in reply to Gigi71

I have received another letter today with the name if the bio, it's Hyrimoz and states also if our clinician feels it not suitable then another biosimilar brand will be offered. I still intend to state how I feel. I was recently prescribed Gaviscon Advance from a respiratory consultant for my chronic cough caused by my HH this has helped. I asked my GP for a repeat and received Acidex Advanced as the cheaper alternative. The main ingredients are the same, however its a runny constituency, slightly different colour and a dreadful peppermint flavour. After a week it doesn't seem as effective. Because it's a medicine you notice this more. I am seeing my GP in a couple of weeks so will see what he has to say. X

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Hidden
Hidden

I can't remember the last time I was completely pain free.

When I asked rheumatologist recently if things would get much better on the benepali I've been taking for 13 weeks, he said no. However, I don't think I'm on the right medication to be honest. I'm I quite a bit of pain and still get swelling. I think with the right drug I could be virtually pain free.

Things were better for a while and then I got poop out!

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wishbone

In the very early stages of my RA I too thought meds stopped the pain. That's until a rheumy told me that I can always expect to be in some degree of pain, but with modern meds it should be minimal. The trouble with that was I knew next to nothing about RA back then and never had much idea as to what degree of day to day pain I should class as minimal. Hence I put up with more pain than was necessary as I discovered a few months later.

I've had RA for 16 years, and though I may have had the odd brief pain free spell in the past, especially so when I had a short stint on enbrel, I haven't had anything resembling a pain free day for getting on 4 years. Having said that, you could probably class me as one of helixhelix's difficult cases.

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helixhelix
helixhelix
in reply to wishbone

Not you that's difficult of course, but your disease!

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wishbone
wishbone
in reply to helixhelix

Of course!..... ;-)

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Simba1992
Simba1992
in reply to wishbone

A substantial amount of those on RA meds have ongoing pain. This is what studies say and I do think it's important to be upfront about this like of the effects of meds in general.

ncbi.nlm.nih.gov/pmc/articl...

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wishbone
wishbone
in reply to Simba1992

I appreciate that and did so at the time. No criticism of my rheumy was intended. All I was attempting to say was the degree of day to day background pain I was experiencing at the time I spoke with my rheumy, and what I naively thought was acceptable, was not, as I later discovered when put on more effective meds.

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Simba1992
Simba1992
in reply to wishbone

I have noticed that those on biologics have a better chance of a painfree existence(?)

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wishbone
wishbone
in reply to Simba1992

I can't recall if I was ever pain free during the 3 or so months I was on enbrel, but I came very close to it and the best I've felt since having RA. Currently on baricitinib, which though not nearly as effective as enbrel was, is certainly helping and believe me I'm grateful for that! That said, I'm only taking half the regular dose, along with pain killers, because of recurring infections.

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net2012

I am in drug (Humira) induced remission, and have been for 2 years. It took a while to find the right drug for me, and so in that time I was having flares and they did leave me with some damage. So any pain I get is because I have ulnar drift on 2 fingers, that kind of thing, more so if I forget to lift carefully,t turn wrist awkwardly, can't carry things for too long as it goes through my foot. I have' nt had the pain of a flare though for 2 years and it is wonderful, amazing.

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Hidden
Hidden

Hi Veronica I thought same; only had it 18 months & it’s a lot to come to terms with but on meds it is nowhere near as painful as when first diagnosed (couldn’t sleep, walk on hip, hands swollen & clawed etc). Now seem to have permanent wrist lumps & stiff painful fingers depending on activity too & fatigue at times but that’s it (at moment 🤞). I had painful flare in shoulders when MTX stopped which reminded me of how bad it can be so grateful for new meds really despite them all being bit scary. It’s not just your joints it can affect (I had extreme breathlessness when first diagnosed which as faded with meds & i’m sure RD related) this worries me as much as joints. No one wants a lifetime on drugs but what’s the alternative I guess. We all keep plodding along: stupid, unpredictable disease that’s so hard to explain to anyone who hasn’t got it. x

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JEM95

I’m in drug induced remission and although I feel infinitely better than I did at the start of my RA journey five years ago I am never pain free. Sometimes I have flares.

It wasn’t until I had a steroid injection early in the year in response to a bad flare that I realised the level of background pain I feel 24/7 - I guess I am used to it. I try not to let it get in the way. I walk a lot, do Pilates etc but the pain never really goes - I just ignore it and live with it (and pop pain killers as and when). I am hopeful that my drugs are minimising further damage.

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Fra22-57

I have only had RA for 6 years thou have other diseases too to contend with.I am on 4th biologic drug.I thought it would make me pain free and the other 3 didn't so they took me off.this time it is helping a bit and wrists don't swell n be painful as much.I take cocktail of drugs inc 10mg steroid.steroid gives me no side effects. See how you go and they will adjust and change meds for you til blood results improve etc

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Bookworm55

I guess everyone is different and everyone ‘s RA is different as you can see from these replies. As Helixhelix says it is usually those who are struggling with pain or another issue who post here, which is not surprising. I was only diagnosed 3 years ago, have been on hydroxychloroquine and mtx, now just on 12.5 mg mtx as hydrox stopped due to eye problems . At the moment I am virtually pain-free day to day, without painkillers, unless I overdo it or knock a joint (ouch!) I have two close relatives with RA - a niece who was diagnosed at 17 and was pain free for 7 years or so until she had her son, and a cousin who was diagnosed at 60 and has been in pain since (10 years) while she struggles to find a drug that suits her. All auto immune conditions seem to be very unpredictable in their progression but I don’t think it is unreasonable to aim for a pain free time with medication.

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juneann

Depending on the drug you are normally advised three months to feel a change.

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Hidden
Hidden

Actually Kerena's post reminded me that things are no where near as bad as they were initially. I'm in pain now, I was in agony before!

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marie66
marie66
in reply to Hidden

I totally get this and when I feel discouraged I remind myself just how awful it was before the drugs. things are bad but they aint that bad thankfully! ((hugs)) M x

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helenlw7

I’ve been on drugs since 2004 and haven’t even had one pain free day! When I was first diagnosed I could hardly move for the pain. If I sat down for an hour I was really stiff when I got up - I had to make sure I got up last to leave a meeting. I couldn’t sit on the floor which affected the way I did my job - I was a primary school teacher. It took quite a while to get on the right cocktail.

Now the pain is much better - I can cope with it, and I remember what it was like in the beginning. That doesn’t mean I would like a pain free day!

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