My first time posting, but i do read the posts that are relevant. Bit of background first:
I am hoping for some new ideas. I have had RA since 2010, beautifully controlled by Enbrel. Unfortunately a few years ago I was told I had to go onto a bio similar. I was very anxious about changing but had no choice. What I wasn't told was that i could go back onto enbrel if bio similar didnt work. Long story short, bio similar didnt work, i wasnt allowed back on enbrel as it was over 12 months before it was decided it didnt work we have tried benapali and sarilamub both didnt work (sorry for spellings) now on nothing other than MTX which only makes me feel sick all the time and like im coming down with Flu (but im not).
Have been offered rituximab or Jaks as a next option. But I have to wait to have either of these as I need to have shingles vaccine first. GP very slow in ordering so still waiting for it.
In the meantime, I'm in the middle of an 18 month Flare with life limiting consequences, im sure you know what this is like, some days i even limit fluid intake so I dont have to get up to go the loo
Genuinely I dont think cocodamol works at all for me. Nothing seems to change. Paracetamol lightens the pain but not enough to walk or get about.
Anyone any pain control ideas i can try? Hot water bottles work well and wrist splints. Anything else i can try?
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EarthRock
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Hi there, I am sorry to hear this and some of this really resonates with me and no doubt will with others here. Your GP may be your best bet re pain killers as we aren’t supposed to advise on those as could be very dangerous but there are options the doc and rheumy could discuss with you for pain relief.
I was hounded by a really aggressive hospital pharmacist twice many years ago to switch from Rituximab to a biosimilar. I told her a big no. My rheumy emailed her to say I’d be staying on the original as she told her Rtx was the only think that had controlled my RA for years. I hope you are soon stable and on another med that works successfully. It is different if you start on a biosimilar and haven’t been changed from an original med. I’d not have a problem with that but not a change when you’ve done so well with the original med.
I did that too when immobile and in bed re the limited liquids. Not good. (Even a bucket bedside would be better then no liquids.) Please tell your rheumy all of this if you haven’t already.
Sorry can’t give advice for painkillers but sounds like you really need some soon and they need to address this whether the GP or rheumy recommends/prescribes. Good luck and gentle hugs. 💗
I feel for you, struggling with pain day in day out is mind numbing. I'm in a similar situation. Any codiene based analgesia has no effect (around 1/10 of people do not process codiene, so it has no pain relieving effect).
I find voltarol gel helps the small joint pain, but not so good on the bigger joints.
Ravlo (lidocaine) pain patches are useful for back or hip pain, but some GPs won't prescribe them due to cost.
Other stronger opiod based analgesia leaves me feeling ill or hallucinating so I don't take them.
Your GP is being a bit remiss not ordering your shingles vaccination, I would be calling them asking what the issue is?
Best wishes to you.
P.S I take JAKs, have been on biologics too and have not had the shingles vaccination 🤞
I'm sorry that you are having such rotten time and hope you find something that helps really soon. I changed from Etenercept to Abatercept and it seems ok. But I really just wanted to say please please don't limit your fluid intake as it could lead to much more serious problems and in fact won't stop you needing the loo but just means that it will be harder to empty your bladder and that could lead to UTI's or even worse do harm to your kidneys. I have CKD and it really makes RA seem like a breeze and it is life threatening. And its hard to understand why you're GP hasn't got Shingrex in the fridge so do ask for that asap so you can move on.
Hi. After I was forced to stop taking naproxen, I asked both my GP and RA specialist what to take as a replacement ( I’m not allowed anti inflammatories) and didn’t get any satisfactory replies. So I suggested taking ‘Zapain’ ( 30 / 500 mg codeine phosphate / paracetamol) and they agreed, for me it’s been really good. I don’t take them regularly as they carry the warning ‘can cause addiction contains opioid’ just when I need them.
I have no suggestions re analgesics, but recently fell for an advert re bamboo based compression items. Had very painful knees ( amongst a general flare) so I got the knee sleeves - expensive - but they have been very effective at relieving pain and making movement less painful. And comfortable to wear in bed, unlike other knee supports Ive tried .
You might like to wade through the NICE guidelines on chronic pain which your GP/Rheumy team should be following. That way you can check that all the possibilities are being considered. I'm fortunate that codeine works well for me, but that means that my body can change it efficiently into morphine which doesn't happen for everyone.
Don't forget about distraction techniques - anything that can take your mind off the pain helps. Music, watching the birds, reading, having a shower, talking to friends, etc.
Aspercreme works pretty good (an aspirin cream you put on the skin of affected area). Also, aren't you taking folic acid (except on the day you take mtx)? Folic acid is supposed to ease the mtx side effects, like nausea.
I found that chocolate, of all things, made me feel sicker. I think anything sweet does, for me anyway.
So this sounds counterproductive but eating when you feel sick may help. I think it adds something in the stomach for the med to interact with. Mtx is known for its gastrointestinal side effects so throw it a curve ball by adding something for it to churn besides your empty stomach. Don't forget to have a full stomach before you take mtx. I found it can't be just anything, but has to be something you like. I'm still working on that theory.
I know you asked for pain relief ideas, but, your physician is the one causing you pain by being slow ordering the medicine. I'd call more often and remind them of your plight. You're suffering why? So you can nicely wait till he/she gets around to it? No! Be kind to yourself and call the office while you're throwing up or feel horrible so that someone takes pity on you.
You are only taking the mtx once a week, right? Sure, a day or 2 being mtx-sick is 'normal' (ugh), but more than that doesn't sound right.
Also, call the manufacturer. They want you to take their med and will find a way to help you get it so that you, too, can increase their profits. Ok, sometimes they won't if you get a representative who's sleeping on the job, but you may get some ideas.
If you're waiting for the shingles vaccine, get it somewhere else, then have that proof sent to their office. Sometimes you have to take matters into your own hands.
Thank you, I've tried all sorts with mtx to reduce the sickness but it lasting all week, yes folic acid 4 days a week to. I'll get back to rheumy team see what they say 😏
I take Sulfasalazine, and notice immediately if I forget. I also take Amitriptyline which works a treat for my Fibro.
Central heating is my go to on top of these. Being cold makes me hurt. I hibernate in winter, but that I can cope with.
Paracetamol I have as back up but rarely take. Cocodamol, Naproxen, Diclofenac didn’t make any difference at all. Ditto steroids.
I use piroxicam gel and/or deep heat which works straight away. Keeping hydrated is essential btw. Nit drinking will make things a lot worse 🥴.
Early on when I first got RA I found that heat helped my joints and bought (and was given!) small electric heat pads which I put on to the worst joints. I’m currently waiting for a hip replacement and although I’m prescribed lidocaine patches I’m also using one of the heated pads particularly at night. I know heat doesn’t work for everyone but I find it a real help.
My Rheumatologist told me to take Robitussin in the morning for the flu-like symptoms. Methotrexate has helped my body pain but I still feel like I have a bad flu all the time.
I'm in the US so things might be different but I've been on almost all the biological medication and have never taken any vaccine and also here we go to pain management which is a specialist for our pain medication and I find Percocet works the best for me Good luck and hope you feel better soon.
Thanks Shresworld. Quite a few people have said vaccines wernt needed. I guess it's the process required by my local rheumy team. On absolutely no medication and trying to cope with paracetamol....less than 2 weeks to go till I start the Jaks. So light at end of tunnel 😃
After being dignosed difficult RA nothing helps i have been on enbrel rituxi humira leflunamide finally Reumy gave me this diagnose.Now its going to be 10 years i am on 4 mg of prednisine had cancer after 13 years of enbrel plus lung fibrosis had shingles left me with neurophatic pain for life.I put lidocaine patches witch is not much but keeps me alive.Have ostoporosis the worst.i am female 69 years old and still alive.Only cortisone is good for me.WISH YOU GOID LUCK.
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