RA drugs not working

[thompsonp]

Hi I've been on mtx and hydrochloquine for 4 weeks and there isn't any improvement I'm so depressed I cannot walk is this normal. Scared I'm going to be left like this

[cathie]

There's plenty of alternatives depending on what you can tolerate. There's a whole range of biologics which you could look up on NRAS and arthritis research uk before talking to your Rheumy. Don't despair

[thompsonp in reply to cathie]

Thank you

[MickeyJoints]

Hi thompsonp,

Sadly, with this condition, results can be a couple of months to arrive. All to do with the disease being auto-immune and that body system takes some time to react to intervention.

When I get irritated with the time it takes to get any idea if something's going to work, I remember what it must have been like pre-biologicals, when there was only steroids and MTX (I think that was the list, but I could be wrong) available.

We have many choices now so there is a very good chance of finding something that works for you. I've just restarted MTX after lung tests and I'm hoping for a good result with that! I'd only bee on it for about 3 months and I think it was just starting to work - 15mg injection on Saturday - can't wait! (somewhat weirdly keen to have it)

There is hope and many options, so stick with the programme.

[thompsonp in reply to MickeyJoints]

Thanks I wish you all the best

[sylvi]

It takes up to 12 weeks for mtx to get into your system and start working so please be patient.xxxx

[thompsonp in reply to sylvi]

Will do thank you

[Alison-NRAS]

Sorry to hear you are struggling at the moment.

It can take up to 12 weeks for these medications to work it may be worth speaking to your rheumatology nurse about other medications to help you in the meantime such as anti- inflammatories or steroids.

It maybe also worth asking your GP to see if you could be referred to a Physiotherapist for some exercises to help you with your walking.

If you would like to discuss this further please contact our helpline at NRAS on 08002987650.

[thompsonp in reply to Alison-NRAS]

Thank you so much I will call

[Caspiana]

Hello. Sometimes it takes time for the drugs to work. There are other drugs you can try too. I was on Enbrel for years so I switched to Actemra. That failed miserably so another change to Remicade which is working well now. I don't know anything about hydrochloquine but please talk to your doctor. Don't suffer in silence.

Hang in there.

Cas xx

[Caspiana in reply to Caspiana]

Sorry. I meant to say I was on Enbrel for years till it stopped working.

[thompsonp in reply to Caspiana]

Thank's a million for your advice

[nomoreheels]

Welcome thompsonp. It really is early days for you so give it a other 4 weeks or so & you should start to notice some improvement. It really should have been explained to you that both methotrexate & hydroxychloroquine can each take up to 12 weeks to become effective, as has already been said. Were you not offered a steroid injection or a course of oral steroids to help reduce your inflammation & pain until your DMARDs reach their potential? It's quite normal to do so, I had a month's course when first diagnosed & started on HCQ & a couple of NSAIDs & it really helped until HCQ built up. If things aren't any easier next week do contact your Rheumy nurse, you should have been given a helpline number when you were diagnosed. In the meantime maybe a read of this will help you to get to grips with how meds work nras.org.uk/getting-establi... & this explaining combination therapy (which is what you've been started on) nras.org.uk/getting-establi...

Be assured this is the worst you should feel but it's important to be kind to yourself, don't overdo things in this period of waiting for your meds to work. Don't become sedentary though, that can be as bad, better to strike a happy medium & when things become too much rest up.

I hope you'll start to notice an improvement soon.

[thompsonp in reply to nomoreheels]

Thank you all so much for your replies it has really helped my mood. I am also on prednisone naproxen and cocodomol. I have had RA for a year but they misdiagnosed and said it was gout as it would only incapacitate me for a few days and then i was fine then at Xmas it went to my hands as well and there was no let up constant pain and now cannot walk depessing been off work for four weeks really worried. I was so active rode a motorbike to work have 3 kids with no sympathy at all its happened so quickly it's scary

[MickeyJoints in reply to thompsonp]

Hi, me again. I've just sold my bike (Ducati 600 monster - loads of fun) because I couldn't be certain I could operate the handbrake after a 20 minute ride - my hand would be stiff. Coupled with working from home lately, I couldn't have the bike sitting around for months when I didn't need it. I'd had a bike for over 30 years and it was part of my identity. Oy vey.

I appreciate what you're saying about work with kids to care for. If you're not getting sympathy elsewhere - it's here by the bucket loads from those who have travelled further in the same shoes. I don't have kids but many others here do so they will have ideas on how to manage them and yourself - just post a question!

As you've seen from other posts, I'd recommend a diet review. There were some items that I could do without anyway, like sticky buns and pastries. I've cut them out - not completely, mind, but I know they are going to make it worse so I can avoid them easily. You don't have to eat lentils (I do and they're great) but there may be some aspects of your diet you could reduce and feel a benefit from.

Red meat is out, for many reasons and I think that helps - others may have different opinions. The issue with many suggestions is that this disease is personal. As I mentioned in posts previously "This is a disease your auto-immune system has made, just for you!" You will react differently to suggestions and you need to do a bit of trial and trial again to find the combination of treatments which work for you.

Yea, the pain is a barstuard. I'm in the middle of a flare and took my 15mg sub-cut MTX yesterday. Drained and stomach feeling like I'm looping the loop in a light aircraft.

I will get this disease managed. So will you.

Cheers,

[thompsonp in reply to MickeyJoints]

Thanks I have a mere 500 suzuki haven't been on it since Xmas I like you have had bikes for 30 years had a break each time I got pregnant didn't think it was a good look riding a bike and preggars too. I'm on 15 mgs and next week up to 20 mgs that will be my fifth dose so far haven't had any problems but I'm so knackered all the time which I don't know if the drugs or the range x

[thompsonp in reply to thompsonp]

That should have said or the RA

[MickeyJoints in reply to thompsonp]

"Mere 500"? Plenty to kill yourself with! But given that you have ridden for so long I'd suspect you are defensive and read the road beyond the car in front - we all do, us bikers.

Yeap, knackered with the MTX too. God I hope it works - for us both!

[thompsonp in reply to MickeyJoints]

Exactly x

[thompsonp in reply to MickeyJoints]

What should I cut out in terms of diet would be interested what kind of diet is it gluten free type thing I'll try anything

[nomoreheels in reply to thompsonp]

I've eaten a Mediterranean diet for a long while now, even before I lived out there & way before diagnosis. It suits me & as it happens recommended for us. This link gives some more info nras.org.uk/diet-rheumatoid.... There's lots more info on the site if you'd like to check them out nras.org.uk/what-diet-to-re... & here bbcgoodfood.com/howto/guide...

Some find that tomatoes & others in the nightshade family (potatoes, aubergine, peppers etc) can trigger an inflammatory response but I'm fortunate that they don't for me but much of it is trial & error. Trying specific foods & seeing I'm afraid is the only way to be sure. Always better to avoid processed foods & too much sugar but don't deny yourself the odd treat just don't have them too often. Trying to stick to strict diet can be stressful, again best avoided.

I'm sorry you experienced your aunt's suffering, that must have caused flashbacks when you received your diagnosis so hardly surprising you're concerned. I remember my nan being so deformed & that in a way has encouraged me through treatments, there's so much more available for us nowadays to help stop progression & so fewer are truly disabled as we remember them. Do remember that you will begin to notice improvements soon, you only always feel as you go now. Take care & keep posting, we'll help all we can to keep you going! x

[MickeyJoints in reply to thompsonp]

Hi, You'd really need to look at what you eat now. White bread this is heavily processed is a no-no for me. I eat - an love - Vogels bread, toasted is extra special. Go for oat and barley as some of the other flavours are a bit strong for me - linseed and something is a challenge. Most big supermarkets seem to stock it.

Certainly processed packaged foods are not good - but I'd guess you'd know that. If you do a search on this forum for diets you'll find LOTS of reports of some which did good for some people. You could start with some of them.

As @nomoreheels said a med diet is good and is a great place to start.

If nothing else, you broaden your taste bud experiences and will find some things which are sooo nice!

[thompsonp in reply to MickeyJoints]

Thanks sounds great x

[smithfield in reply to thompsonp]

Hi I am on a GF. diet and have been on it for 20 plus years since I was diagnosed diagnosed with Coealics.

Most supermarkets have a good gf section it is much easier now with more choice available.

It is tinned foods, anything packaged where you need to read the packaging carefully.

Avoid Wheat , Barley. and Rye. They all have gluten .Beer has to be avoided but cider and wine are ok.

You could look at the Coealic Assos. Web Page.

Good luck.

[smithfield in reply to smithfield]

That post was meant for Thompson.

Have brain fog again

[thompsonp in reply to smithfield]

Thank you will do x

[thompsonp in reply to thompsonp]

Good morning really bad day today stiff as a board mtx increased to 20 mgs last night with no signs of improvement feel a bit sickly today my left knee is four times the size of my right saw Registrar Monday two weeks ago who said I need mri on knee still waiting for appointment I might pay to see consultant just once privately as I can never get through to anyone and rhumy nurses never answer phone

[Azabat]

I'm sorry to say it, but 4 weeks is very early yet. Make sure your rheumy knows how you're feeling. There doesn't seem to be a precise 'normal' with this disease. I know that I didn't start to have help from the mtx till at least a couple months in. If you're in so much pain you can't walk your rheumy needs to know and can help with. Hold on. Change comes slowly, I'm afraid.

Bats

[thompsonp in reply to Azabat]

Thanks much appreciated

[latebird]

I could not walk at the beginning of treatment and could not get out of a chair or climb stairs.At the moment I am in remission and things are near normal as can be.please don't be fearful as your team will help you to recover.It is scary but it can be overcome.sending you good wishes.x

[thompsonp in reply to latebird]

Really appreciate this thanks a million

[Vandf]

As everyone says, it can take quite a while to get the medication right. There are lots to try. Please take care and stay as positive as you can. I had trouble walking and was in so much pain but since taking Enbrel and Methotrexate I am feeling so much better. I found the support on here was invaluable and the help line at NRAS is definitely worth using. They give such good advice. I hope you will feel better soon.

[PFKAAde]

Hi thompsonp

Like everyone has told you already it takes time.

Up to 12 weeks is the figure I hear used a lot for MTX. For me I was at 15 weeks after starting and was as bad as ever. So bad they admitted me to hospital for 2 weeks for observation and tests, tests and some more tests.

And then would you believe it, after one night in hospital it was like somebody had flicked a switch and I started to feel (relatively) normal overnight.

It's always darkest before the dawn, they say.

Hang in there.

Ade

[thompsonp in reply to PFKAAde]

Thanks a million thsee positive comments mean so much to me

[thompsonp]

I certainly will thank you for your sound advice

[Snooze-Master]

I couldnt walk when I flared for the first time, I had no idea what was going on, my knee was propper "ouchy". Im almost a year in now, stuffs settling down, but after my first visit to the consultant and an injection into my knee I walked (limped) out of the hospital. This is a life changing event your having, this takes time to come to terms with, and as others have said, it will take time to sort you out. The hardest thing I have had to learn (and still am learning) is to be patient! I truely wish you well in your journey.

[pinksugarmouse]

Unfortunately yes, struggling to walk is a pretty common symptom of RA. Fortunately although you are really bad now, with or even without the drugs this could follow with a period of time where walking is a lot easier, for days, weeks maybe even months even years. It isn't cured but you can have long periods of relative peace (remission).

I'm not trying to terrify you but RA is progressive. Meaning that your joints can't get better only worse BUT..........the inflammation around them stopped and slow the progression of damage to your joints. You say it's bad in your hands. If you haven't got any yet I highly recommend using splints to protect your wrists as much as possible.

You also need to protect your joints not just when you have a flare-up but all the time. Even when your joints feel fine with RA it is always best to be on the safe side. These are some of the suggestions that have helped me over the years;

Use the biggest joint possible for the job.

Distribute the weight or work between as many joints as possible.

Practise good posture. I am useless at this.

Get a good mattress.

Use supportive chairs.

Wear comfortable supportive shoes, replace them regularly.

Cold packs and heat bags might help. I was told always cold on a swollen joint. Heat if its painful not swollen.

Use aids and adaptions if they help. Nobody is staring at your wrist splints/walking stick etc and if they do notice they might be a bit more patient and helpful. You can ask to be assessed for aids by an occupational therapist.

Get rid of pride asap and accept help when it's offered. Most of us with RA struggle with this one to our detriment.

Get the right balance between activity and rest. This is tricky as the balance changes often. Don't overdo it on the good days. Change position regularly. If sitting wiggle those toes, turn your head side to side. Take a few steps around the room.

A massage might help BUT make sure whoever does it steers clear of any joints. Muscles only! I was advised to avoid all essential oils except Lavender and Chamomile or just use the carrier oil but it might be different for other people.

Try and exercise regularly but avoid weight bearing exercises especially when having a flare up. Sounds silly when you can't walk to say this but for future reference; swap lots of walking and contact sports with swimming (preferably in warmer pools) cycling and gentle stretching.

I have had RA my whole life tompsonp and over three decades on I am still learning things about it and this site has given me ideas and suggestions that I would have never thought about. It is a s*** at times but it is not for most of us always like that. RA effects our lives but it doesn't rule it.

I didn't get on with methotrexate but the VAST majority of people who use it find it works brilliantly. I really does take a bit of time though. Have you asked your rhemy or GP about pain relief? I take Tramadol. It can make you a bit woozy but used sparingly it's really effective. This won't slow down your RA but it might make things a bit more manageable.

Good luck. And remember someone is always on this site when you need us xx

[thompsonp]

Thank you so much great advice I'm on pain med naproxen and cocodomol and steroids since Xmas but i worry taking the meds for so long. I have tramodol but have never taken it. My Aunt had ra terribly she was totally paralysed from the neck down but that was 30 years ago and she died at a very early age it's a shame they didn't have the drugs back then. I think that is why I'm so scared about this. Thanks again xx

[thompsonp]

I had a steroid injection on Monday and it hasn't helped at all. Has anyone experience of this