Hi I have RA ,fibro,Erosive OA and a host of other health probs. My GP surgery is on the war path to get not just me but other patients of their pain meds. They have stopped my , what I call foundation pain relief as the others build on it and providing daily relief. They are now trying to get me off another. I have pointed out to each GP( as each one I see is different), that I cannot have nothing and that my condition is in curable and will be lifelong and that they should have a duty to provide some alternatives, with receives a blank look from them. I did look up the local care commissions local GP report. They are like Ofsted for Health care, and GP surgeries. Of all the surgeries local to me they had received an amber light and areas to improve on. The criteria was for support and treatment for patients long-term health conditions. I have been in agony since they have removed 2/3 of my pain meds and my sleep ( which on the whole was pretty solid before) , is now broken in spurts of an hour here and there. And we all know how sleep starts the pain cycle off !. So the drugs they have stopped are Ami , Co/ dydramol. I can't take anti inflammatories even with stomach protectors. I find my pain too wide spread for gels. It's ok for a local areas but not great. I think I just need something else to replace them. I'm wondering whether to change surgeries ? Any ideas and thoughts on meds etc ? And am I right in complaining about their lack of support ? Sorry for the very long post but I'm so frustrated with the new changes the NHS have brought in post COVID !
Pain relief : Hi I have RA ,fibro,Erosive OA and a host... - NRAS
Pain relief
I’m sorry but don’t understand are you saying you have RA but take no medications because there are lots and not all antiinflamatories. Or is it that the GP is saying you can’t have a script for pain relief available over the counter? Your RA team can tell GP to prescribe but if your taking RA meds then if they are not working you need to talk to them but OA might be another matter.
For what it’s worth I want my consultant rheumatologist who understands my disease 100%…..that is his professional expertise… prescribing all my RA meds.I don’t want a GP who often doesn’t understand present day RA meds adding anything without my rheumiy’s say so. I learned that lesson the hard way by being prescribed something by a GP that really mucked up my RA meds.
surely your rheumatologist prescribes your medication…not your
GP. Have a word with you rheumy team
My consultant only does the RA medication and my GP does everything else. My consultant says he does it this way as easier to see a GP than a Consultant and faster. SO for me I have to say works great. So it must be down to each counties way of doing it.
Whoever prescribes RA drugs would also be able to prescribe pain medication & in CrazyCat’s situation it would seem the simplest solution would be for her RA specialist to choose the most suitable analgesics compatible with her RA meds in order avoid the confusion that appears to exist
It would but all my pain meds etc are thro my GP but they just dont quibble at all.
I have the exact situation, where my rheumatologist prescribed meds that alter the course of the disease, and gp does pain meds. It’s actually a safer option, as most hospitals use paper prescriptions, and therefore rely on a specialist’s knowledge re interactions, side effects etc. As gps use computer software, any interactions flag up on the system, making it the safer option. I’m fortunate that my gps are keen to keep my pain controlled. That may be partly due to having adrenal insufficiency, as increased pain eats into the cortisol I take and puts me at risk of an adrenal crisis. Recently they increased my butec patch to see me through the intense pains I was getting in my leg, so I can’t complain.
I too get my pain relief from my Gp only thing my rheumatologist gives me is a steroid injection which are limited. I can’t take anti inflammatory meds as I’m allergic
I'm the same. Only that my Rheumy started me on amitriptyline again when my GP told me I was too old for it at 63. She wrote to my GP to tell them to put it back on repeat. All other pain killers come from my gp too. My Rheumy only prescribes my RA meds.
I must be lucky because it's a lot easier and quicker for me to see my rheumatology team than it is for me to see a GP.
Mad how each division is one or the other 🥰
Personally I would write a letter and cc the local care commission too and your consultant so then you have covered everybody. I made a decision to reduce my pain meds to see if I could take lower doses and the only one I could was Co Codomol. But like you I have fibro OA and Ra diabetes and a heart issue. My GP is VERY good and count myself lucky but you need to fight your corner as it not humane to expect people to cope with pain and no bac up.
Good luck and hope the battle is not too long.
Hi thanks for all your replies. I am prescribed Methox and hydroxychloriquine for the RAband was told that my GPs would manage my pain relief. I was prescribed the Amitriptyline for Fibro years before I was diagnosed with RA . RA runs heavily with nearly all my family, Dad both sets of Grandparents and both my Aunts and my Cousin has recently been diagnosed with fibro and RA. My dad's was aggressive he didn't respond to RA meds but this was going 30 yrs back mind. He ended up completelu bed bound crippled . I know newer treatments are available now days. So mine was aggressive and I am awaiting to be seen by the surgeon as my feet and ankles have deformed quite significantly and I walk with crutches . So I guess really my GPs are my real problem . The Dr I spoke with the other day when I complained that the Amitriptyline was prescribed for my fibro and that it would have a huge impact on my daily living gave me the old there is no treatments for Fibro and that exercise was the best thing for it. I couldnt believe what she was saying . I was so I upset I burst into tears when I got back to the car. Is there anything I can say or do to get them to understand the support I need with RA , fibro , OA and the pain relief . I live on my own and work part time as that's all I can manage so need to continue working to pay bills, Mortgage. I just need some help so I can get through my days. Thank you all for your responses btw I really appreciate it. I don't really have any support network so it's lovely to hear from people with the same conditions as myself. 😊
It’s scRy that there are still doctors out there who say the old fibro not much we can do. No they can’t do a lot BUT amitriptyline pregablin duloxcetine have all been deemed worth trying.
I would look up NICE guidelines re fibro treatment as this will give you some true guidelines on how they deem treatment should be done.
I was going to suggest exactly this, nice fibro guidelines. Also amitriptyline should never be stopped suddenly in patients who’ve been using it over long periods, it should be gradually reduced.
Like you Dee I every 3-6 months taper my analgesics down to see if they are still working. Generally I find the pain quickly intensifies and I return to my usual dose. I use a Butec patch, and get tramadol prescribed to add to if needed. I get a box of 100, which generally lasts me 3 months. I have a level of pain which I accept I have to deal with and only take the Tramadol when pain intensifies. I would also send the letter you suggested cc’ing in all the appropriate others. Good luck crazycat keep fighting your corner 🤗
I am sorry you had that experience with your GP l also had the same two weeks ago with my GP after l saw her for increasing pain in my legs. I have never experienced anything so painful. I also have fibro which was diagnosed several years ago and l was prescribed amy for it. My new GP muttered something about me having taking it for a long time and usually it was for six weeks only. My previous GP said people can take it for years. She hasn't stopped it yet but other meds have been refused. The best she could offer was an increase of 100mg gabapentin and the possible option of taking duloxetine. Which the NHS website advisees should not be taken with Amy and l will definitely not be doing if she tries to prescribe that. I currently try to see a GP on a day she isn't there now out of sight out of mind l hope. I suspect the next thing will be a refusal to prescribe co codomol. After the experience l was in tears all day and felt defeated and battered. May be adrenals as well as just reduced to 5.5mg pred. I wish you well in this tiring battle. Isn't it enough to be coping with illnesses. I suspect they are trying to save money.
I'm so sorry you're suffering like this and that your GPs have created this problem by removing meds you found effective. In your situation I would definitely contact your Rheumy team to get involved: either to prescribe suitable pain relief to you or instruct/advise your GP what to prescribe for you. I find it most effective to write a letter, rather than phone or email, and you can c.c. in your GP and CCG.
Coming off the amitriptyline is what has probably caused your sleep problems and many RA and Fibro patients find it helpful with pain. It's even suggested in the Versus Arthritis leaflet on Fibro!
Good luck!
I believe like America the UK is clamping down on doctors prescribing pain meds particularly opiates due to their addiction risk. GPs are being pressured to wean patients off where possible particularly those on long term opiates.
england.nhs.uk/2023/03/opio...
I think the key phrase in your reply is "where possible", and I don't think that painful, incurable, progressive rheumatic disease fits that criterion.
I completely agree but the government doesn’t see it that way and I think GPs can be penalised. I’m lucky I have a fab GP practice who listen to me and can see I’m very careful of my pain meds so they’ve have been happy to prescribe strong pain relief when needed.
Yes, in the USA some GPs have signs up in their offices; stating they will not prescribe benzodiazepines or OxyContin!
Well, if I’m the patient & need those drugs to function & am aware of the risks - please give them to me! I’m paying for them & your services.
I’m a senior with severe RA who is quickly prescribed random, “big gun” /high risk RA expensive meds that can kill me- but I am expected to suffer a daily “living hell”, due to the possibility of addiction?
I’ve had to turn to liquor to relieve pain & get some sleep & I am a “tea-totaller”- & don’t even like liquor.
My GP left me without RA meds during the pandemic because “rheumies were not taking new patients” & I consequently experienced substantial joint damage.
I am convinced medicine is all about time, $$$ & liability, with rare exceptions. (Plus, there are medical professionals here in the USA that don’t even know the metric system.)😳
I have the same conditions ( not fibro) as you and found controlling my RA helped with pain. There are lots of drugs that can be given for RA I see from your post that your RA is aggressive? There are stronger meds than what you are taking biologics and some people even have transfusions or are given a combination of biologics and DMARDS! I can’t take any anti inflammatory drugs as I have kidney decease and the ONLY pain killer I am allowed is codeine( which I have been told only to take if desperate) I have been offered local steroid injection in joints and physio to help with OA but as my GP has told me there is no treatment. I would contact your nurse regarding your RA meds, as getting it under control will help with pain meds.
Same here I have Cronic Kidney Disease but plenty of RA meds are available just not NSAIDS. I take AZA and inject Etanercept and in remission.
Yes, I am on Humira and have been for May years. I am also in remission took a while but got there in the end! I only use the codeine when desperate ( for OA) I have been warned to be careful with it .Good to hear you are remission too.
I feel for you. Every so often a pharmaceutical person at my Drs rings up to discuss my meds. Trying to encourage me to reduce etc. I am in my 70’s and all the while I am stable…just leave my meds alone.
The first thing to do is make a formal complaint through the practice manager. PMs have to report formal complaints to the other doctors (the partners) at the surgery, so GPs won't want to be shown to leaving patients unreasonably in pain.
If that doesn't work then the next step will be PALS. You can just talk to them and they should help things along, or you can make a formal complaint with them too, and those formal complaints are reported to board levels and discussed. If a GP surgery has a lot of formal complaints against them due to not meeting the needs of the patients, then it will become obvious to the ICB that commission them.
Alternately you could ask the GP to refer you to the pain clinic. That will cost them, but it will also should get you your amitriptilyne prescription back again.
I suggest going to your rheumatologist GPs have no idea about RA. I have often gone over the head of my GP to my rheumatologist. He can't say anything. He's not the specialist! Good luck.
Hey there - I hear you. Are you on the diet for those with RA?
Latest research : pubmed.ncbi.nlm.nih.gov/371....
Diet recommendations (keep going past each ad as they aren't the end of the page 
arthritis.org/health-wellne...
And this is all very obvious but might be some nuggets in there:
nhs.uk/conditions/arthritis...
Meds-wise , I am on 1g of paracetamol am and pm (doesn't touch the sides but I continue!) and also now I have to take 35mg of codeine at bed time without fail. I'll have another one in 8hrs if really flaring.. But I was put on Pregabalin earlier in the year after I finally gave in from years of rheumy and GP pushing me to... which made me blow up like a blimp compared to my usually slim self.. I did not like that! I had oedema too in my lower legs and feet which happened last year for the first time in the heat (I have kidney and heart issues too and lupus and sjogrens and all sorts as well as widespread (ie everywhere) inflammatory arthritis.. so not been diagnosed with RA as such by rheumy BUT was told I had both RA and OA by the Ultrasound chap 6yrs ago looking at my hands.. but the Rheumy I saw afterwards renamed it the clinical terms and all my joints are up spout/remodelled with the inflammatory arthritis (same thing I've read on internet but I didn't write those) and tendons and bone marrow oedema - so I think I qualify for all this). Anyway, I had to come off the pregabalin as was a horrible feeling, which was a shame as it did take the edge off the pain a little - and "every little helps" eh?! BUT.. I am a known sensitive to most meds (thankfully not methotrexate apart from my neutrophils plummeting even more if they try and increase it) and you might not be? I take it your rheumy put you on Methotrexate when first diagnosed. My GP said it was rare for the side effects I had the pregabalin (also Gabapentin is similar) ie weight gain and oedema however I have seen lots of research on this happening.. and in blogs! So have they suggested it to you? I think it is for stopping the pain in the nerves getting to our brain.. so.. it does actually have a sedative effect which will help with your sleep again, and believe me, on 25mg of it at bed time, the first night was like a cosh... quite scary as I get up all night for the loo.. was like being drunk! So I only took it at night, not again in the morning as suggested.. sensitive soul as I said. It did help a little.. but also...
I trialled amitryptalline years ago and that was like death on a stick... ie felt completely drugged.. and depressed. NO THANKS. So I'm anti.
...I have lots of massage and acupuncture.. and this helps somewhat.. although more for all my tendon/muscle spasms so maybe not for you? Worth a go.
Do you have magnesium baths.. lots of lovely products out there.. but I take calcium and magnesium and zinc every day, always have.
Exercise is a MUST for me.. I do my own yoga every day (unless flaring in a right state but I can always do a little stretching and it hurts but REALLY HELPS) and always have since I noticed I was in pain and hair falling out and everything up spout from 20yrs old (I'm 60 now, a very young one ;).
Water - essential.............. At least 2.5litres a day( I have 3 or more as Sjogrens), every day - do you do that?? creakyjoints.org/living-wit...
What vits/oils etc do you take? I found high grade omega 3 oil essential..every day. Bare Biology do one - and you need the fish one if you can although they do a vegan one. Also eating oily fish twice a week and all the stuff in that diet link.. always done that. I also take collagen - Bare Biology's is the best and cheapest for the quality (they say!). I also take cumin/black pepper/tons of ginger/turmeric pills.. great for inflammation. Tons on the web.. but Bare Biology prob do one.
Personally, having been going through a ton of health stuff since birth, I really do feel we have to research everything we can to help ourselves naturally, to go with our meds, because meds backfire on us and/or they take you off them or things become unavailable etc etc..for me it's the side effects, plus I was brought up by a father totally into nature cure far ahead of his time.. to treat things as naturally a possible. I don't write on here much any more as had too much going on (cancer stuff) but I obviously felt called to again when I read your post. I really want to help.
So - I hope that helps... before you decide to change surgeries as I did and found the new one much worse and it take them years to get used to you and all your stuff.. You could talk to the Practice Manager.. and see what they say?
D
And this just popped up in my in box from Bare Biology - might help with your sleep. Incidentally I take the omega 3 with axanthin she takes.. and, no, I don't own shares in Bare Biology ;)! mail.google.com/mail/u/0/#i...
So sorry it's awful taking stuff away leaving you in pain & possibly some withdrawal symptoms. You can in the meantime buy from Boots some paracetamol & codeine tablets (their own brand much cheaper ) which has 12.5mg of codeine Codydramol is 15mgs Co codamol is 8mgs. Being an Ex nurse remember all this.
Hope you get this sorted out ASAP
Hi there, many surgeries try cutting back on drugs especially the drugs you can buy over the counter. Like yourself I cannot take anti inflammatory tablets due to breathing issues. I am also allergic to some of the blood pressure drugs. Ibuprofen is another dodgy one. If your drugs are stopped they should try other options if you are still in pain. I would like to stop paracetamol as I have a couple of side effects caused by long term use I feel. I buy my own sprays and rubs and find muscle gels help pain along with pills. Tried all sorts for low back pain but feel it is inside not joints or muscles. But confess the back pain is a struggle to control. Like everyone else you need to talk to the Gp . I have had one review and changed to a low dose of slow release pain reliever maybe that might be a thought for you. I am now having another prescription review next week. The NHS is supposed to do what is best for patient but many options are not available due to cost. I wish you every best wish but do not suffer in silence please
As some some other replies have suggested, rheumatologists tend to leave the prescribing of painkilling medication to the patient’s GP. GPs are usually more knowledgeable re treatment of chronic pain than rheumatologists.You mention that you have a lot of other health problems but don’t say what they are. I don’t know if you possibly have had recent blood tests which has made them concerned about side effects of your painkilling meds, but if that is the case they should have told you. They absolutely need to explain the reasoning behind stopping these medications and they need to have a plan as regards what they are going to prescribe as an alternative, and to discuss that plan with you. Just telling a patient that their pain meds are being stopped is not good enough. Most practices have a pharmacist attached for a few days each week and if the GP is not sure what pain meds would be most appropriate for your situation they could discuss suitable medication with them. Referral to the pain clinic is another option but there can be a long wait for an appointment.
Perhaps try talking to the practice manager about the situation and she might intervene for you with the GP and help to resolve it without further delay.
It’s current guidelines that the GPS are blindly following. It’s a shame that they don’t apply a measure of common sense and pragmatism when assessing what patients needs are to give quality of life. I believe GPs were the culprits of overprescribing painkillers leading to patients abusing prescription painkillers. Consequently genuine sufferers of chronic pain are now paying the price of GP laziness.
Hi, I'm going through the same thing with my surgery! I've had 2 "med reviews" in the past 2 months but only concerning pain meds. I've been on gabapentin since my first spinal surgery in 2019 and co-codamol for about a year. I have RA, OA, degenerative disc disease, dystonia and benign hereditary chorea and I told the gp that a consultant put me on the meds so I'm not coming off them to please a GP. It worked for now! Good luck. X
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