RA agony, debilitation, biologic not working, pain out of control

[Blodynhaul]

Hi all you kind listening ears,

Still living with so much chronic pain & agony in so many joints (and connective tissue), day & night & unable to do even basic things. Been on my first biologic (Adalimumab) for over 3 months (after years on DMARDS). The blood test has now shown I am making antibodies stopping the Adalimumab (Amgevita) working.

Codeine and ibuprofen only take a little bit of an edge of things for a little while and steroids hardly helped this time either. Things are getting even worse somehow. I was prescribed Oramorph and Amitriptylene (AT)from the GP this week as I can't stand the chronic pain and agony any longer. Big hopes - but after 2 doses of Oramorph, I can't say it improved the pain much at all, perhaps only a little after several hours, but no more than the codeine & ibuprofen. The AT takes longer to kick in, but really surprised and upset the Oramorph isn't working, apart from even more agony waking up and bad head and feeling a bit sick. So after 2 doses not taking it and going back to the codeine.

I'm seeing the Rheumy this week & expect to go onto another Biologic, but it's been 10 months since Leflunamide stopped working & honestly can't carry on like this with such unabating pain in so much of my body and being so useless. It's the TIME element with the Biologics, it seems, so there's no telling if or when one may start to work. I wish there was a successful one that reliably could help Fast! as totally dreading carrying on like this waiting for another Biologic to work, or not.

Has anyone else had experience of ongoing severe chronic pain not being helped by steroids, anti-inflamms nor by Oramorph? and can you suggest what else can work? I was on Tramadol for years, years ago and unknowingly got addicted, so reluctant to go that route, though codeine also like that. I feel I'd try anything and can't believe Oramorph's not helping, unless I should keep going with it? I think I'd put up with the side effects if it was helping, but not.

Grateful for any comments/experience anyone may have on this please.

Thanks so much.

[sylvi]

I wish i could say something to help you, but being in pain a lot of the time i can't. I can't biologicals or MTX due to various problems. Sending hugs your way. xxxx

[Blodynhaul in reply to sylvi]

Thanks so much Sylvi. Sounds very hard for you with limited options...Take care X

[sylvi in reply to Blodynhaul]

Thank you darling and you too. xxxx

[rabbits65]

Good morning. Yes I took Tramadol like you and it was quite affective but like you I won’t take it again. At the moment I’ve got terrible sciatica pain and wondering what to do. I’m using hot water bottles , lots of them and trying to exercise my two dogs. My feet are in terrible pain too and can’t get shoes to fit properly. I don’t know what you can do really , at least you do know that your not suffering on your own . Take care. 😊

[AgedCrone in reply to rabbits65]

Have you thought of using a little electric heating pad instead of filling all those hot water bottles?I have one about 24” square…..it helps a lot …it has a timer on it…so if you fall asleep whilst using it..,,it switches itsel off,

[rabbits65 in reply to AgedCrone]

Thank you , yes I have thought about those but you have to have a long enough lead to reach the electric plug and then I’m not keen on leaving electricity on in the bed if I’m asleep . I know hot water bottles can leak 😂 😂 But thanks for replying

[AgedCrone in reply to rabbits65]

I have slept on an electric blanket for probably 40 years & no singed toes yet!

[rabbits65 in reply to AgedCrone]

😂 😂. Maybe I will get one of those heat pads after all, as you say if it’s on a sleep timer then I will not cook in the night !!!! Take care , and thanks. 😃

[AgedCrone in reply to rabbits65]

They really are comforting…most of them have different heat settings & you can always get an extension lead to plug it in.

[rabbits65 in reply to AgedCrone]

Do you know the make of yours? 😊

[AgedCrone in reply to rabbits65]

I’m not able to get at it right now..I’ll answer you tomorrow!

[KittyJ in reply to rabbits65]

I’ve got a Dreamland one from Argos 😊

[rabbits65 in reply to KittyJ]

Thankyou Kitty

[AgedCrone in reply to rabbits65]

Just looked my heat pad is made by Dreamland.

[rabbits65 in reply to AgedCrone]

Agh, Dreamland is what Kitty says she has here ( above) thank you.

[AgedCrone in reply to rabbits65]

Mine is years old & has been all over the world with me in the bottom of my suitcase!

[rabbits65 in reply to AgedCrone]

😂. 😂. A well trusted old friend then. I must get one too

[nomoreheels in reply to rabbits65]

We have 2 Sanitas ones currently Penny, both bought off Amazon, in fact replaced an old one recently & it was slightly more but still reasonable at £26.99. Probably the most used of the heated things I have. It's on now, always is after my morning shower to help release the tension in my lumbar muscles. Mine have 90 minute timers (cut off) & 3 heat settings.. The lead is 1.5 metres then a further 80cm of lead from the heat control box to the pad. I've not had it on anywhere where I’ve needed an extension lead but of course it depends where your plugs are situated relative to where you'd use it. Marvellous things. 😊

[rabbits65 in reply to nomoreheels]

Thank you very much . Looks like I should make my hot water bottles redundant then , everyone is recommending heat pads . 🥵 🥵 😃

[Blodynhaul in reply to rabbits65]

Thanks rabbits65, you don't sound too good either! Yes it does help when you know you're not the only one. I also use hot water bottle on my chronic neck. Thanks again & hope you improve x

[rabbits65 in reply to Blodynhaul]

Thank you , Pain is such a Pain yes !!!!!

[Hidden]

My mother in law just had a 3 week stint in hospital as she was struck down all at once with a multitude of rare ailments (not RA), but she did have to persevere with the Oramorph and the side effects before she saw the benefits. Thankfully she off it now but on Ibuprofen patches which are working very well so don't know if in your case that might be another option to ask about?

[Blodynhaul in reply to Hidden]

Thanks Tracy - that's very helpful about keeping going with the Oramorph. As it's kind of 'use it when you need it' or 4-hourly. I ffeel Id be using it all the time, which I'd rather not do because of dependence, but that is better than extreme chronic pain. I'll inquire about the Ibuprofen patches - thanks!

[strongmouse in reply to Blodynhaul]

Sometimes with pain it helps to get on top of it and then 'manage it' with less medication. I attended a Pain Clinic and it was very helpful in understanding how pain works (!!). Basically when it is intense then we react more easily so finding ways to dial it down are hugely important in the first instance and then try to reduce medication slowly to find what is best balance longer term.

[Blodynhaul in reply to strongmouse]

Thanks very much mouse, that's very helpful X

[Neonkittie17]

I hope your rheumy suggests a new biologic if you’re creating antibodies to Amgevita. 🤨 I was prescribed Oramorph for night relief in 2015 alongside other prescribed pain relief of fentanyl patches for osteo pain but Oramorph just took the edge off the pain and gave me a couple of hours sleep, so I understand where you’re coming from saying it hasn’t done that much for you. The only thing in 2015 that helped me move and took stiffness and pain away were oral steroids (but some not so pleasant side effects and the weaning off them can be some time) which tidied me over until my new biologic worked. Good luck with the rheumy appointment if you’ve not already been. 🙏🏻

[Blodynhaul in reply to Neonkittie17]

Thanks very much Neonkittie17 for your experience. Steroids used to help me years ago very well, but I've had 2 x 3-week courses over the last few months that have hardly helped, which was surprising and disappointing. Perhaps the dose was too low. Yes, feel sure I'll be going on another Biologic, just hope it works - and fast! Thanks again.

[Neonkittie17 in reply to Blodynhaul]

Wishing you all the very best. 🙏🏻

[KittyJ]

I would try the oramorph for more than two doses, you haven’t given it much of a chance to work really. Unless you were told it would have an immediate effect ? I hope it does work for you.

[Blodynhaul in reply to KittyJ]

Thanks KittyJ. You're right. I did think it was for taking as you need it but as it's not the slow-release I thought there'd be an effect within a couple of hours. I took 2 more dose today - the first one I did get 2 hours of less pain, very welcome, but the 2nd dose - nothing! Thanks again X

[Silverpixie]

Oh you poor thing. I remember awful days that went into months in such pain. Some days I just managed a shower. However steroid injections did work short term sometimes. I have a liver problem so can't take a lot of the standard RA drugs. It was my 5th biologic that worked but it took 4 years to find "the one". However, at times I just wanted to give up, my marriage also broke down and I was a complete mess. 5 years on I don't recognise that woman (I'm now 61). I work part time, have no pain, take masses of exercise and am quite content with life. Don't give up hope.

[Blodynhaul in reply to Silverpixie]

Thanks silverp, what bad luck you can't have std RA drugs...and horrifying to hear it took 4 YEARS to find The One. Yikes! That's terrifying, but will dwell rather on how you are now ! Was about to list all the basic things it's agony to do or can't do , but it won't help. Thanks again X

[ruth_p]

In 2015 I had a massive flare after humira had stopped working after 4 1/2 years (I’d previously had Enbrel which only worked for 2 1/2 years). My rheumatologist changed me from the anti-tnf type biologic to tocilizumab which is an IL6 protein inhibitor. After my first injection I had improvement in 24 hours, it was like a miracle. I’m still on it now and it is still just as effective. If they can find you one that works then it will be your miracle drug the only downside is the waiting. Maybe if the oramorph is giving you side effects a morphine patch might be better. Good luck and hang in there.

[Blodynhaul in reply to ruth_p]

Thanks so much Ruth, that has lifted my spirits - the miracle 24 hour bit! And, yes, it is the TIME factor that is so daunting waiting for something to work with continuing agony, damage and uselessness & how on earth to cope. I've heard Tocilizumab is a good one, so shall ask about it with the Rheumy. Thanks so much and long may you continue to be well ! X p.s. I'm lucky I've only tried one Biologic, so plenty more options if one can work fast!

[LinaM]

I just want to say I’m sorry to hear you are in such terrible pain with this awful disease . I got an infra red shiatsu massage machine for my neck which gives great relief while I’m using it . Was about £40 on Amazon. I also find Amitriptyline helps me to sleep but it helped instantly for that . I’m sure my pain levels are not as bad as yours seem to be ( yet) I also found a steroid injection was amazing giving me about 4 months relief . Sending you my best wishes x

[Blodynhaul in reply to LinaM]

Thanks so much Lina, that's all interesting and will investigate 😁👍

[Mmrr]

I have nothing to add to the comments above, I just wanted to say I hope your rheumatology appointment goes well 💐

[Blodynhaul in reply to Mmrr]

Many thanks Mmrr X

[nomoreheels]

I hope your Rheumy can sort things out for you. It's awful when you're in such pain, not helped by all RD specialist meds needing time to build up to be effective.I persevered with Oramorph but it's not my favourite thing I have to say. Amitriptyline though, if you start on a low enough dose & titrate up over weeks then you're less likely to have the usual side effects such as you've experienced. I went up a dose each month to find my perfect dose, both morning & evening dose. It makes such a difference in tolerance v benefit.

[Blodynhaul in reply to nomoreheels]

Thanks nomoreheels, that's very helpful, thanks again X

[Hidden]

I am unable to recommend any medicines for pain relief except to say you really need to beg your RA team for possibly an increased pain relief dosage. I had a similar experience for four months whilst waiting for my new biologic to be given to me. During this time I had to ask for an increased dosage of pain relief. I had two separate steroid injections and also had to up my dosage to full max dose of Naproxene plus max dose of Co Codamol so I could manage. But I did have to ask for this. They are only addictive if you don't remember to wean yourself off them gradually to a lower dose then completely stopping. I gradually went down to only one Ibuprofen daily when my Abatacept began to work at the 8th weekly injection. I just tried to lower my dose to see how my pain level was. I am happy to say the Abatacept has worked well and I rise out of bed very quickly in the morning now to do house work and other normal things. I don't forget the time I was 'disabled' throughout my entire body so hope it continues to work. But, who knows, only time will tell.

[Blodynhaul in reply to Hidden]

Thanks so much Thinksunshine - that's so helpful and encouraging. I'm taking max. co-codamol & ibuprofen (tried naproxen but felt very ill on it) & really thought that steroids and then the oramorph would make a sudden big difference. Not so. Fortunately, like you, I'm not afraid to question and ask and persevere. I have 'begged' the Rheumy thru several emails on their helpline over the last few months and they're very good phoning back & this time told me to ask the GP for stronger painkillers, which is what I did, hence newly on the oramorph and amitriptylene. Glad to actually be seeing the Rheumy next week as still barely any relief & need another biologic to try asap . I feel better about you commenting on the addictiveness and weaning off - thanks! So glad Abatacept/Adalimumab is working for you - long may it continue! Go Well X

[Sheila_G]

Sorry. I hope you get some relief from your pain soon.

[Blodynhaul in reply to Sheila_G]

Thank you very much Sheila X

[Green230461]

I was prescribed amitriptyline and it made me feel awful too. My rheummy told me to take just half a tablet before bedtime! That worked for me. Best of luck ☘️

[Blodynhaul in reply to Green230461]

Thanks Green, that's interesting and helpful X

[patrickd]

You poor, poor victim (yes, you are a victim of RA's rath)! I am so sorry! RA pain is just so horrible. I am not a doctor but I would think you'd be getting some relief from at least the "roids". That seems to be my only relief when I am in a flare-up of several joints. I've been on a dose of as high as 80mgs..maybe your dose and can be increased? I wish I could offer some sort of help but when I flare up, nothing helps at all..no ice, no heat, no nothing. You are lucky to at least get some pain medication. Hang in there! If this helps at all..it does go away eventually!

[Blodynhaul in reply to patrickd]

Thanks Patrickd, you somehow made me laugh too, a good thing (my first thought was hemorrhoids not steroids ha ha!). Yes, I definitely thought both courses of steroids over the last few months were too low in dosage and did report back in detail. Glad I'm seeing the Rheumy next week. I shall hang onto your last phrase! Thanks again X

[Happy5]

As my friend would say "all hideous" been similar to the point of despair, & feeling useless.Had another f2f with RA nurse & given my 3rd steroid injection this year nver had so many!

Like you analgesics barely touched it though getting some relief now had the steroid injection.

Discovered post surgery last year I ract to Oramorph badly, Asthmatic so Ibuprofen not possible for me.

RA consultant looking to add Sulfasalazine to MTX injections, oh joy, guess have to try it never know may help?

Keep going albeit slowly& painfully hope a solution found soon.

[Blodynhaul in reply to Happy5]

Thanks very much Happy5 (what a lovely 'name'). That's very interesting. Can identify with the 'despair' after so many months like this and thinking it couldn't get any worse, but it is. I notice a lot of people take a DMARD, like Methatrexate, together with a Biologic & someone said the DMARD helps the Bio to be accepted by your body. Not sure about that, another question to ask, though I can't have Methatrexate, Leflunamide nor Sulfasalazine again. Sincerely hope it works for you - yes we have to keep trying, it's just a pity things don't work fast so time isn't wasted being so ill! Good Luck to you too, thanks again X

[Happy5 in reply to Blodynhaul]

Thanks for imput all helpful Blodynhaul (your name is interesting is Blodyn Welsh? ) , one thing forgot to mention was I flagged up can I go through GP for intramuscular steroid injection rather than the faff via RA dept ( long winded process) save time ? Thought if I can get the steroid injection quickly means the flare is nipped i the bud as it were.

My name well it's to reming me generally I was & mostly am a happy person simple stuff like watching the birds, or insects or flowers in the garden make me happy.

😉😀

[Blodynhaul in reply to Happy5]

I like that, the names/words/images we see often affect our mood & outlook - so i feel good seeing your name pop up! Blodynhaul is Sunflower in Welsh ( I live in Wales & speak Welsh 😁). Like you I also feel uplifted with Nature, especially the sheep, dogs, trees, river & mountains here on a daily basis, so lucky. It does help to offset the pain, agony & debilitation of the RA, at least on some level...!

I would definitely ask & explain to the GP to do the steroid injection - worth a try. I haven't had steroid injections for quite a few years, but when I did, it was directly with the GP (both shoulders twice & back of head/top of neck). The GP understood it was the RA, no issue and did then there&then in the surgery without making another appointment. Far better than waiting so long.

Good Luck with the injection! X

[Quinny51]

Try arcoxia it might help i hope it gets better for you

[Blodynhaul in reply to Quinny51]

Thanks Quinny, shall inquire about that in my appt next week 👍

[LauraJayne2589]

Hi, I’m so sorry to hear about your pain. I’m a pain patient, a nurse and a surgeons wife. I have CRPS and a spinal injury. Any opioid has an addiction potential. I didn’t find oramorph helpful whatsoever, even though codeine converts to morphine I found it much more useful at first. I’ve been on matrifen (fentanyl) patches, IM morphine and liquid oxynorm for breakthrough and have been for over 6 year. My pain was so uncontrolled before this I had a breakdown and took an attempt on my life (this also coincided with my sons death, 3 month before his first birthday) Had it not been for my husband I’d have not got through it. I now have a quality of life I could have only imagined in the distance before. I’m even back at work. Have you got a pain team at all? They are much more specialised than a GP xx

[Blodynhaul in reply to LauraJayne2589]

Hi LauraJayne, thank you so much for your very kind & helpful response and useful feedback. But firstly I'm so sorry to hear about the truly hellish time you had. Thank goodness you & your husband somehow got through it. It is wonderful to hear your quality of life is so much better.Secondly, I just looked up what CRPS is. Even though our ailments are different, it's still very useful to share details & to know what works for you & what to try. When there's so much extreme pain, we'll try anything. Like you, I'm not finding Oramorph very good, though only been using it 10 days & am interspersing it with co-codamol. As a trial, I took a full 24 hours of oramorph every 4 hours (instead of codeine) and although a little less pain, it didn't make much difference. Still with taking ibuprofen.

But saw rheumy Tuesday & now on higher/longer course of steroids than last time. I started Wednesday (now a 5-week course) that she thinks should tide me over till the new JAK-inhibitor Filgotinib (Jyseleca) arrives in a few weeks/month. Just hope and trust this will all work out. Still wracked with RA pain in the joints and what the rheumy thought is muscle spasms (agonising chronic pain I'm having every night & other times in the body & arms probably from straining to support my body as my arms/hands/legs can't - I can't even go to bed now as excruciating pain and can't move/ turn nor get out of bed), but hoping the slightly higher dose of steroid will help for longer - and that they kick in quick. So carrying on trying to balance codeine or oramorph for the pain (but obviously not ibuprofen while on steroids).

I shall ask abouut Fentanyl patches and the other morphine and oxynorm you mention. Thank you. No , nothing like a 'pain team'. I luckily haven't needed a hell of a lot of regular interaction with the rheumy or GP teams for years (only certain times when problems). I just keep believing that this state I'm in is temporary & something will work and I shall quickly feel well enough again, so hope therefore I will not be needing a 'pain team' for chronic pain (even though I've got in such a bad state it will take quite long to build up again). But, if things don't work, then...

Thanks so much again, LauraJayne. Do hope you continue to improve. Take care xxx