For nearly 15 years I have refused to take any pain relief except from paracetamol this was mainly due to being a single parent with 4 very young boys and didn’t want to not be in control of myself or become dependent on any form of pain relief. 2 years ago I was in a really bad way regarding the amount of pain I was feeling, they offered me co-codamol, morphine etc and again I told them no all I wanted was medicine to help my swelling. 2 years later, been completed ignored by my rheumatology team, doctors been told not to give me anymore prednisone so I finally gave in this morning, started taking co-codamol. Im absolutely furious I’ve had to turn to this just to get some kind of relief and it’s not that much of a relief either. Has anyone else experienced this kind of situation.
Feeling forced to take pain medication : For nearly 1... - NRAS
Feeling forced to take pain medication
I have not experienced this situation because when I’ve been in pain I take whatever I need to to relieve it. Do you have alot of joint damage as that’s where the majority of my pain comes from? I find that I need to regularly take pain medication for it to build up and work better, if you’re experiencing some relief from a days worth then hopefully the longer you take it the more relief you will get. Don’t see it as forever, you may be able to cut down later and surely it’s better to have relief than just refuse to take something to relieve it and suffer, it’s no fun being in pain and it can affect every aspect of your life. I’m assuming you take other RA meds so don’t be furious you have to take something else, sometimes it’s what we have to do. I hope you find more relief in the coming days.
Prednisolone is far, far worse to me than co-codamol!! Evil stuff that I avoid as much as I can - although have had to have several injections recently. Surely you kids would be happier with a mother who is not in pain, even if a bit more sleepy?
If you pain is mot from damaged joints then you need to push for a review of your drugs to make sure you are on the best possible treatment for you.
(My OH refuses to take anything which drives me insane!! I have to live with a grumpy, distracted monster instead of a near-normal human being who might just be a bit vague).
I've never found any analgesic medication effective for either my RA and OA. Co codamol , codeine no effect at all, and they constipated me greatly and I mean greatly. Amytryptaline (for nerve pain) a definite no no as were gabapentin and pregabalin, all three knocked me stupid, sleepy, dizzy, nauseous and off balance all day. Opioids make me hallucinate and oh the nausea...but virtually no pain relief at all, and of course there is opioid addiction to consider. Personally opioids do virtually nothing for pain, for me. I don't get it with them? ( I had Morphine during delivery of my 1 st baby, then again after two disc enucleations...not a scooby worth of pain relief but the hallucinations were frightening. I went for natural childbirth for the next two....so much better).
The cure being much worse than the problem in all of the above instances.
The best 'analgesia' is of course well controlled RA, but prednisilone is excellent in controlling inflammation and hence the pain. No contest.
Trying to look after children whilst feeling drowsy is not acceptable, dangerous and highly detrimental to family life as well as your own quality of life. You do not need to tolerate feeling like this, my money is on most rheumatologist and GPs themselves not accepting these type of side effects. They would most likely seek more appropriate care.
I'm suffering myself atm with pain like I haven't had before. With my consultants support I'm upping my daily prednisilone to 15mgs and will ask for a medication review when I return from holiday.
You are entitled to ask for a medication review if you are in a lot of pain. Feeling yeuch with medication is not acceptable and being asked to tolerate feeling like such is not good care.
I agree that taking drugs that seriously affect your concentration and responses is a no-no with children. However carefully titrated and planned analgesics do help many, many people (sadly you are not one!).
It’s individual of course. But can be worth a try as to live in so much pain is so miserable. I hate tramadol, but others find that they can live normally with it after the first few days.
Yes of course, but prednisolone is the answer for many people including Lornap it would seem (whom my response was meant for...oops).Many of the analgesics offered are ineffective or have side effects / addiction issues more severe than prednisolone. Many of these issues are downplayed, many people don't know about them when they are prescribed these meds. Many people are unaware that it is opioids that they have been given.
It is very much an individual thing, but prednisolone gets a tough ride, whilst meds such as codeine and tramadol are prescribed at the drop of a hat.
I felt bullied into accepting a prescription for tramadol from the duty GP on Hogmanay after the paramedics took 2 and a half hrs to get me out of bed. I lost count of the number of times I said no, upping my prednisolone and a couple of days of diazepam will sort me out. The box of 60 , yes 60, tramadol lies unopened, never touched.
I've still got 8/14 diazepam that I eventually was given and I take prednisolone anyway, so upped it myself for a few days.
I have since told my own GP that I felt bullied into accepting the tramadol when in terrible pain, knew the answer to the solution was not tramadol, she raised her eyes and we moved on.
And can I add, I'm no push over when it comes to meds, but bullied I was, no mention of the addictive issues with tramadol. I gave in consumed with pain, it was easier. The 60 capsules arrived less than an hour later, along with the diazepam from the pharmacy.
Edit: prednisolone and diazepam arguably two of the leading meds developed in recent times. Abused by lack of education and poor prescribing by the medical profession who did (with all benzodiazepines ) and continue to do so with prednisone.
Prednisolone reduced my inflammation, diazepam reduced my muscle spasm, I was up and walking a few hours later on Hogmanay. The cause of my problem was resolved by these meds.
What did the GP expect the tramadol to do ? Particularly when I provided a detailed history of my meds and solutions to my lumbar issues. And....this type of thing is what happens regularly / routinely with many RA patients. The problem is hidden with inappropriate meds, rather than finding meds for the patient which tackle the issue.
I have a friend who had back pain and tingling feet, and so was prescribed gabapentin and pregablin. I tried to encourage him to look at other alternatives, but he was desperate. Roll on a couple of years and they have caused him all sorts of hell. Other people find they give back a quality of life.
It is all so individual, and if pred is the one that works then so be it.
For me, a strong anti-inflammatory like intramuscular ketoprofen works well.
First rule for all health care staff, listen to your patient. The first clues as to what the problem is and possible treatment, particularly in chronic illness, is stated by the patient in the first few sentences uttered. But oh, so often missed. Getting it right first time is not only best for the patient, but saves the GP much time in unpicking and redoing.
I am sorry to hear about your pain levels and hope you can get it sorted.. Just musing -do you think it would be useful if rheumatology depts had a knowledgeable pharmacist on their team that could talk through options of pain meds with patients? I can't understand why they aren't more utilised.
I’ve experienced severe pain, my Ra is severe and very aggressive and I had bone damage within 6 months of the onset of this horrible condition. I know people who have become dependent on the codine or other pain medication and I don’t want that. My pain is from the swelling, my finger joints feel like they’re going to explode they’re that swollen. I was on rituximab before the pandemic but I was refused it at the start of the pandemic due to it not working, I had been on it about 6 years and it never really worked the way it should have, probably about 50 percent but much better than how I am now. One of my rheumatology nurses has said a couple of times that if I were his wife he’d be making me take the pain medication, I find that completely disrespectful and if my Ra was somehow controlled then I wouldn’t need to take pain medication that I’m really against taking. My kids are older now so I can take any type of pain medication but I chose not to. The thought of feeling drowsy etc does not sit well with me. Prednisone has a lot of draw backs but I’d much prefer that, at least it would be my choice.
Your choice, but there are new RA drugs all the time, so keep pushing your rheumy team.
Since I've been on biological jabs apart from Paracetamol I don't need anything stronger now. I looked at any thing stronger as a need at that time but never felt forced as no one can force you. When the inflammation was high I could ring the hospital for a depo medrone jab as I can't take oral steroids
Mmrr wrote a post praising prednisone. Take a look at that post. It might help you form a good argument for your doctor to have you remain on the prednisone. it is an interesting thread called In Praise of Oral prednisone and thanks for the memory. Lots of good information.
I am the other way, I wont take steroids because of the long term problems they cause, if in trouble when I visit rheumatology I have the jab in bum. I think it's your meds that ultimately reduce your swelling, currently I take MTX 15ml and baricinitib. You dont mention your drug regime, I cant tolerate higher dose MTX. Go to rheumatology and ask for drug regime review, long term steroid use is not beneficial. If you talk to them you can find a pain relief that works for you eventually. I take cocodamal but it's not regular as my meds are working. Good luck talk to your RA team.
I'm afraid that I was a little similar to you and avoided codeine based drugs like the plague for quite a while. This was mainly because prior to a hip replacement when I was 43, after waiting in agony for ten years due to my age (things are different now, thank goodness, that was in 1989) I had resorted to so many codeine based drugs that post op they no longer worked for the RA in my wrists. So, for me, codeine was completey out of the picture. I can't take anti inflamatories any more, they give me chest pain. So, during my current flare over the last two years, I have happily resorted to codeine. We can be too strong for too long, and, with hindsight I can see that I was robbing myself of so much by being so stubborn. I truly don't know how I'd cope now without them...for day to day living...although I do try to take a lower dose coupled with paracetamol as in Cocodamol. I am taking a steroid as well, because I need that for my Chron's Disease and that, too, is helping my RA. I don't like that either, but as my Rheumy said, we have to look at the whole picture. I do hope that you can get some relief soon. Unfortunately autoimmune conditions aren't easy to deal with, and steroids can bring so many problems of their own, including weaker bones and I don't like taking them, but I hate having the urgent Chron's problems with their embarrassing outcomes more. Take care and hang on in there, K.
Personally I just want to get on with living. That means taking 30mg codeine spread out at at intervals during the day and night. The codeine slows down the overactive gut that the azathioprine gives me. It means staying on prednisolone 5mg as a maintenance dose because I have been up and down on them for many years. It means giving myself an injection of adalimumab which is briefly painful every two weeks. But I get on with it and am active and involved with family, friends and activities.
For those of you that are younger than I am, treatment has improved enormously and biological treatments have become standard treatment for moderate and severe Rheumatoid Arthritis. If you are not on that and still suffering, then ask why not.
Boy, can I relate (granted this was 10 years ago for me but it's very fresh in my memory as you don't seem to forget those horribly painful times)! After giving birth to my second son (I had a very rambunctious 2-year-old at the time), my RA came back with FULL vengeance. I was in excruciating pain and fought tooth and nail to NOT take anything. Given I was breastfeeding, the only doctor-approved "safe" medication was steroids and still I didn't feel it was safe enough for breastfeeding my baby so I stopped and formula-fed (a horrible option as my newborn didn't take well to MANY different formulas, another long story). Anyway, I was given a lot of different pain medications (I "tried" these at night and if I felt weird I stopped immediately). I was told if I can NOT function or I am in major pain the baby would sense that (probably true because he cried ALL day and ALL night, very colic). The only relief I got while staying fully sane, and alert, with no personality effect, was Tylenol with Hydrocodone (Lortab prescription). I took the absolute lowest dosing (1 pill 325mg with 7.5mg).Look, you HAVE to take care of yourself in order to take care of your beautiful babies and you can not do that properly when YOU are in major pain. I believe RA pain is worse than childbirth..after birth you hold that baby and there is a relief, a sense of accomplishment, overwhelming love, where is the relief from RA? Another option that might help you would be natural Cannabis Oil! It takes a while to work, it's expensive, but it does work albeit, very mildly by giving you a more positive "overall" functioning feeling. I am talking about the completely natural Cannabis (no additives, no TCH, just pure oil and you take a few drops in tea or just by mouth). That helped me and gave me a more balanced feeling that also seemed to give a pain relief feeling. IF you survived taking steroids, especially anything over 20mgs, you most certainly will function fine with some pain relief.
Steroids nearly killed me and I literally became an entirely different person on them while caring for 2 young children. I was MEAN and miserable.
Also, please allow your extended family to help you as much as possible to give you frequent breaks. Use gramma, grandpa, Aunties, Uncles, friends, EVERYONE, and ANYONE who "offers" to take those boys off your hands whether it's for 20 mins or 2 hours, so you can take care of yourself, rest, take a bath, something! I wanted to do it ALL myself and be that "super" mom! It took me over 7 years of struggles, and 7 surgeries to finally have my babies so I wanted to suck up every second I could with my 2 miracle boys as I was so, so overjoyed to finally have them. I just wish I would have taken more advantage of all the people who wanted to help me out and take my boys. God Bless you and those beautiful boys!
I have a very different perspective of prednisolone. I have been on it since 2012, initially for polymyalgia and GCA for which steroids are the only treatment. In 2017 I started to lose weight without trying, which I put down to tapering my dose. I also had nausea and was extremely lightheaded with postural hypotension. My gp felt it was an ent issue, but after months of waiting ent said all was fine. In April 2018 aged 52 I suffered a severe stroke, I was paralysed down my left side unconscious and no ability to talk. Thankfully I was thrombolysed and made a good physical recovery, but been left with moderate memory issues. When I was admitted they tested my blood cortisol and it was found to be undetectable when it should have been over 1000 in that situation. Over the following few weeks I had loads of tests trying to find a cause for the stroke. I had low BP, normal cholesterol, no family history, my echocardiogram and all other tests were normal. It was eventually decided I had a stroke as a result of an adrenal crisis. My adrenals had been atrophying over the previous year, which is why I was getting the weight loss and all other symptoms. I was diagnosed with life threatening adrenal insufficiency, and my life changed. I went from never being stressed even in my role as a ward sister on a busy trauma orthopaedic unit. I had another cortisol test which again was undetectable, then they tried stimulating my adrenals with artificial hormone and it reached 72, it should have been >500. So now I have no tolerance to stress, simply someone jumping out on me can make me ill. I quickly become nauseous, lightheaded, headache and BP will dive to 84/46. That deterioration will continue till I take steroids to correct it. Unfortunately unlike healthy people who in micro seconds their body produces cortisol and prevents these symptoms, my steroids take at least 30 mins to ease symptoms. I sometimes have to administer an emergency intramuscular injection, if I have started vomiting due to it, and family have had to be trained to use it. I know of some who developed this from just using steroid inhalers for asthma or having several steroid injections, so it’s not only people in my situation who develop it. Although some may be fortunate and are able to recover adrenal function, sadly I’m not. I have had to retire from a job I loved, have to pre plan as much as I can that I have taken enough steroids for a situation, good stress as well as bad stress triggers symptoms. Arguing with hubby, late gate change at an airport, daughter graduating, are just a few of the examples of situations where I have been extremely I’ll from the situation. If you are still willing to take the risk with Pred knowing this potential side effect then that’s fine, at least it’s an informed choice. My life has been turned upside down by this, I had to retire due to the stroke, and been advised to minimise the stress in my life, I’d give anything to turn the clock back. Sadly had GPS been more aware of the risk of adrenal insufficiency it would have been considered during 2017 and my medication adjusted, instead of getting to the point it did. I knew something wasn’t right the 48hrs before the stroke and had actually asked to increase my pred from 4 to 5mg but they refused to let me. I was constantly in tears the 48hrs before the stroke, because every little thing was overwhelming to me. Have you tried anti inflammatory medications to help with the pain, there are many good ones that don’t risk shutting your adrenals down. I hope you find something that gives you quality of life and let’s you enjoy your time with your kids 🤗
I have to say that from the start of my Ra my old consultant has found it extremely difficult to get my condition under control despite the amount of medication they gave me and I’ve been on a lot. At the moment I’m on 4mg of Baricitinib last may, I noticed reduced swelling within hours of taking it but no relief of pain at all. This I think is why my consultant said I’m in remission. I have asked and my doctor has requested that I see my consultant who refuses to see me, I’ve never even met my new consultant and I’ve had him I think 4 years, my old consultant left. I have been on the phone every weeks to the nurses who take a week to get back to me, ignore my call or say it’s a physio problem, I’ve said I’m in absolute agony and can I have another medication with my Baricitinib I’m told no, I even told the Ra nurse about 2 months ago I couldn’t cope with it and my mental health was declining and she said I’ll put in an urgent referral to physio. I phone my doctor pretty much every other week who have helped me so much. I do not want prednisone as a therapy as I know the long term effects of taking it, it’s a fix until I’m heard because I’m in a major flare with swollen hot joints and painkillers are not the solution. I have an appointment with physio on Tuesday so I’m hoping they will be able to get my rheumatology team to listen to what I’ve been saying. My big toes are starting to hurt and starting to feel hot, I’ve never had that there so I’m really angry with my team.
Sorry you are going through this. You should not be forced to do anything at all. If your current meds aren't working as they should, your consultant/GP should be working with you to find an appropriate solution.
I take Co-codamol 1 tablet and 1 ibuprofen in the evening about 3 times a week. Co-codamol makes me sleepy so I wouldn't dream of taking it in the morning when I want to start my day. I'm currently tapering with prednisolone. Were you on a tapering plan? You really shouldn't stop taking prednisolone suddenly. That said, I regret having had to take prednisolone but I know that's what has saved my eyesight. However the aftermath has been very difficult to deal with. Either way it sounds like your medical practitioners need to work with you on managing your illness with the right meds. Good luck 👍
Yes—terrible feeling but I did find one PCP agreeing I had enough prednisone—be careful as it can run your gut flora and thin your bones—never knew that YOU can find someone in the know too! Next to you!
Hi 👋 I’m reading your paragraph, ignored by your Rheumatology Team? That’s pretty poor, I’d get onto the complaints/PALS - they can’t just ignore you? As others have said, maybe your medication needs reviewing, what you are taking is obviously not working.
I do agree with you on pain meds, I’ve been in recovery for 15 years, and I’m anti taking any kind of codeine based medication. Although at the moment I have a rotator cuff injury which is so painful, I have started taking anti inflammatories or Paracetamol.
I hope you get it sorted soon, but your Rheumatologist should be looking into this for you.
Xx
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