Painkillers before rheumy appointment: Hope you're all... - NRAS

NRAS
26,265 members30,111 posts

Painkillers before rheumy appointment

Hope you're all as well as you can be and thank you for keeping this group going. The help, on lots of levels, and information from fellow sufferers is second to none. I was wondering how you feel about taking painkillers before seeing the rheumatologist. I'm on 15mg methotrexate (started on 10mg) and have had 2 kenalog intramuscular steroid injections since diagnosis at end of May. I have been taking 3 diclofenac 50mg and 6 paracetamol daily since March this year. I am 63 years old and until now have been lucky enough to have gone through life without the need for painkillers (despite having osteoarthritis in my hands for many years). I now find that without the diclofenac taken with two paracetamol I am too sore to function properly. Although I hate taking them, they work very well for me and keep the pain at bay. However, do you think the rheumatologist should see you with the pain masked or as you are without the anti inflammatories and painkillers. I'd like to know your views as I can't decide what is best. When I mentioned to rheumy that I did not want to be taking these for the rest of my life he replied that I also have osteoarthritis, implying that I would probably have to. However, as I've said, I didn't need them for that and I know, as I'm sure lots of you do, which is which, as the pain from each is different.

85 Replies
oldestnewest

Hi Sumdy

Diclofenac is a NSAID, sometimes effective for RA too.

I was told by my GP to take eight paracetamol (maximum number) to help resolve the problem of being so stiff and tender even after inflammation levels in blood were down.

I did that and it helped but meantime I also looked up alternatives to Celocoxib which is a COX2 NSAID.

I found sound trials and research that demonstrated that taking turmeric curcumin (with added bioperine to aid absorption) along with boswellia, worked just as well if not better.

So for three years I have taken those as capsules. I was anxious it would not work but very pleased when did.

I think, re seeing the Rheumatologist, you should decide for yourself whether or not to take pain drug/anti inflammatories. eg Would you be able to get to your appointment if you stop these aids to getting around?

Re OA and RA, I have both but OA came after RA.

And even if you look well and can move freely, there could be RA disease activity hiding eg in the wrist, below that bone that juts out at the forearm; a favourite place for it to lurk.

My Rheumatologist has an ultrasound machine and will scan hands and wrists to detect disease activity.

But I hope I might have helped you a bit. Best of luck with decisions and appointment.

4 likes
Reply

Thank you for taking the time to reply. I have looked into turmeric but think the high dosage needed to help is too expensive for me. I ďo, however, take a high dosage of omega 3 and also vit d3. Also copious amounts of green tea and home made kombucha lol! All of which I'm hoping will help to some degree.

3 likes
Reply

I hope so. There needs to be a balance of Omega 3 and 6. I buy capsules of fish oil since I am not used to dealing with lots of supplements. However, those I found to work are to me like gold; I cut out two drugs that could be very harmful eg Celocoxib and omeprazole. For indigestion or heartburn, I get Nipits, strong black liquorice root. Not good for those with high BP but safe in small amounts for most.

It does cost me a lot to buy several herb/spice/supplements but PIP is helping greatly.

We all find what suits us by trial and error. :-)

And I just discovered a few weeks ago that my Vit D3 probably was not absorbed as I did not realise we need Vit K2 for that.

I have not tried kombucha, preferring other fermented foods like kefir.

1 like
Reply

Yes I read your post about but vit d3 with great interest and plan on speaking to my friendly pharmacist who is very good at thinking out the box as far as what I think of as traditional pharmacy. He put my husband (who has MS and Chrohn's) and myself onto the Kombucha which I think has been a godsend for us and he also recommended the but d3 and omega 3. I also read an article about folic acid about the same time as I read yours about but but d3. I can't remember the details offhand but something about it should be folate rather than folic acid. The latter can build up in our bodies and cause all sorts of problems if the article was to be believed. I was going to mention it at my next then my appt. I think all fermented things are good for us....

2 likes
Reply

Yes, folate is naturally found in foods. Folic acid is synthetic and I also read about it building up somewhere!

Your pharmacist sounds a treasure.

Fermented foods are very beneficial if done correctly ie not with loads of vinegar and sugar. You do well to make kombucha! :-)

1 like
Reply

It's a joint effort between hubby and myself. I make the tea. He deals with the scoby! I'll see if I can find folic acid info and send a link 🙂

2 likes
Reply

Thank you. :-)

Reply

healthline.com/nutrition/fo...

Hope this works as believe it or not I've never sent a link before 😊

Reply

Well done then! And thank you, the link works. I will read that tomorrow. :-)

Reply

Believe that article about folic acid. It can build up then it is referred to as UNMETABOLIZED FOLIC ACID. What this does is lower Natural Killer Cells the cells that fight cancer from growing. If your serum folate is high it's usually because of the build up. An RBC folate test will show your actual folate level without folic acid. Unfortunately they are adding folic acid to all flour products and junk foods in the USA. They tell pregnant women to take folic acid to prevent neural tube defects ironically it is this group who are more prone to children with neural tube defects who most likely cannot metabolize folic acid into methyfolate. So it'll build up. Most people with autoimmune diseases have a deficiency of the MTHFR enzymes which makes it even harder to metabolize folic acid. In some they cannot eat enough of folate foods to get their homocysteine levels low enough. The ones with 677TT have the most problems.

1 like
Reply

Thank you Tile. How worrying is that? Why are so many of us being prescibed folic acid? Especially those like me who are told to take it everyday bar methotrexate day. Surely the professionals must be aware of the dangers. Should we stop taking it? I meant to put a link to that article in the group as a question in it's own right where more of us could see it. Just never got around to it. I'll do it now.....Hope you have a good day Tile

Reply

Everytime I see folic acid on this forum I cringe. But folic acid has to be converted to methyfolate and it is a process. Meanwhile you can take the same dose of methyfolate and know it won't be unmetabolized folic acid. I tell everyone I know to keep away from folic acid. There are many doctors in USA that don't even know this. It's up to you I'm not a doctor. Its in too many foods in USA and I read threy are doing it in some European countries. I'm cringing a lot on this RA forum. I can buy methyfolate easily by walking a few blocks to drug store or vitamin store. Read up on it.

1 like
Reply

I'm going to have a word with my pharmacist and rheumy about it......

Reply

It is very expensive in the UK. I looked it up when still on MTX, and decided my meagre income simply could not stretch to it. Problem gone, not on MTX!

1 like
Reply

Ps I take methyfolate everyday. Years ago I was taking folic acid and it did build up. Doctors on you tube talk about it a lot. I have to tell my doctors. GADS.

1 like
Reply

PS Methotrexate is helluva drug it eats up folate. So maybe you won't have to worry about the folic acid too much. Folic acid is cheaper but methyfolate is not expensive. But if it was me I would still take methyfolate.

1 like
Reply

I found one UK brand that is cheap! Most are 3-4 times higher in price. This one has no magnesium stearate, bad ingredient yet in many supplements:

amazon.co.uk/L-Methylfolate...

Reply

Thanks charisma7aj. Well done. Definitely on my shopping list 🙂

1 like
Reply

Sorry if I am repeating myself can't keep track of who I replied to. Think that KOMBUCHA may not be such a good idea while on Methotrexate. Kombucha being unpasteurized has lots of bacteria and YEAST which can be healthy for some but the yeast and possibly the bacteria may be problematic. Kombucha is not recommended for people with compromised immune systems. NSAIDS can be taken with Methotrexate but it can cause drug drug interactions which can even raise levels of Methotrexate. Those taking NSAIDS with Methotrexate need to have blood test more often checking for liver and kidney function and CBC etc.

Reply

Thank you again Tile. You're info and input are much appreciated. Will definitely talk to my pharmacist and doctors about all you've brought up. I already have a list 😁 Hope you're having a good weekend x

Reply

Pro-inflammatory eicosanoids are important chemicals in the immune system. However, when too many of them are produced, they can increase inflammation and inflammatory disease . Although omega-6 fats are essential, the modern Western diet contains far more omega-6 fatty acids than necessary .

Reply

Very interesting! I'll have to look into that. My project for this evening 🙂

1 like
Reply

Have a look at making Golden Paste it very cheap to make and I've found it very effective for inflammation

Reply

Thank you Maggsie. That sounds good. Can't have too many weapons in the armoury! 🙂

Reply

Hey hi. The.RA meds can also cause fungal infections some.extremely serious . It's good to read up on fungal.manifestations of immune suppressant medications. September is Fungal Awareness Month in the USA. Guess you heard about Candida Auris a very serious fungus spreading in medical.facillities.worldwide. I can't see my screen so cutting this short. Not all yeast or fungal infections are serious but they shouldn't be taken lightly either.

Reply

Thank you Tile. Will do 👍

Reply

Hi again Maggsie. The 'experts' reckon if you have chronic pain you would need 10 teaspoons of turmeric a day! That seems like an awful lot.....What do you think?

Reply

Yes, I have read it's about 200mg per teaspoon! couldn't possibly eat that much a day to make up the correct dose! I would like to try Turmeric as a complimentary but I feel so confused by it all 😒

Reply

Me too JFlay! I looked into taking the capsules a while back but those with enough of the active ingredient in them to make a difference cost a small fortune. So it's omega 3, vit d3, green tea, Kombucha and a healthy diet for me. And anything else affordable that anyone suggests lol!

1 like
Reply

I've had a look at making Golden Paste, may be worth a try?

turmericlife.com.au/blogs/r...

You can also add it drinks, in porridge etc. and Kombucha!

Reply

There's a good fb page called Turmeric Users UK that has really useful info and support. It's open to everyone, not just uk

1 like
Reply

Yes Maggsie said about it and sounds good. I like the idea that you can add it to lots of things but still 10 tsp?

1 like
Reply

I take 3/4 tsp (golden paste) twice a day and it does keep on top of the inflammation and dulls the pain slightly. I'm looking to add third dose at mid day to see if that helps even more.

1 like
Reply

It sounds good Maggsie esp since you can add it to lots if things and if it helps you that's great but 10 teaspoons of the actual turmeric powder a day seems like an awful lot. But it may be the case that some is better than none........The main thing is it helps you. I'll give it a try 🙂

1 like
Reply

Sumdy

I was taken off Diclofenic as the new reports show how bad it is for the heart and causes palipitations etc. Now I loved the stuff until this year I have had OA for 4 years then RA shown in my bloods in May and consultant in 3 weeks. My local GP first thing was to get me back on nuproxen due to heart issue with RA that can happen so no more diclo. I miss it in one way but I also know it was hardly touching my pain.

Worth discussing all meds regularly.

Reply

I know it's a worrying drug to take but I've tried other NSAIDs and that's the one that makes the most difference to my pain especially when I take it with 2 paracetamol which seems to make it even more effective. I went from not being able to clean teeth, brush hair, wash hands etc etc to a fair semblance of normal and that was before starting methotrexate or steroid inj. I've gone from someone who rarely takes painkillers etc to someone with a little box of tablets that go everywhere and th me lol! Love reading your posts and hope today is a better one for you

1 like
Reply

A little story that might be of interest :-) ........

I was diagnosed with RA 16 years ago and was prescribed a NSAID called Vioxx by my rheumy, and very effective it was too! I'd been taking it for a month or two and was watching the BBC news one evening when it was announced that there were serious concerns abut Vioxx being responsible for cardiac issues, especially in the US. :-O The very next morning I received a phone call from rheumy telling me to stop taking Vioxx, which was later banned, and to see my GP about a replacement. The NSAID my GP prescribed was none other than Diclofenic . Being very med ignorant back then I remember asking him if it was a tried and tested drug, his reply was yes, it's been on the market for years and you'll be fine with it, or words to that effect. Not long after that I had a mild unexplained heart attack. Can't remember if I was still taking Diclofenic at the time or if I'd recently come off it. Anyway, I do remember that a couple of months after the Vioxx warning there was another announcement on the BBC news this time saying that the medical profession were now investigating Diclofenic as that was also suspected of causing cardiac issues. :-O Can't be sure if NSAIDs were responsible for my heart attack, but goes without saying that they were deleted from my meds menu. Some years later my GPs tried to prescribe Naproxen for my RA while trying to reassure me that it was kinder on both heart and stomach than other NSAIDs. I wasn't having none of it and refused to take Naproxen despite the pain.

I've just restarted Baricitinib after being off it for 8 weeks due to an infection. Even taking high doses of strong pain relief I've still been in a fair amount of pain on times so very reluctantly have had to give in and been taking a low dose of Naproxen for the past couple of weeks, which has helped. Just hope the Baricitinib kicks in soon so I can stop taking it, plus reduce my pain relief as well.

Reply

I know. All very worrying but what can you do? Diclofenac with paracetamol make a big difference to my pain. GP and rheumy think it's just fine to be on it. These are the experts but I too have heard alarming things about diclofenac and your heart (also stroke risk) and we have to remember that RA also poses a risk to our hearts....double whammie 🤔

1 like
Reply

Exactly!....back when I had the HA, I did ask the cardiologist if my RA could have been responsible, but he said no as it was not active the time....what I'd give to be told that again!

Because I have problems controlling my RA it does concern me that my raised inflammation might cause more cardiac issues, especially having had a previous HA. I've been quite worried, as has my GP, that since stopping my Baricitinib 8 weeks ago my CRP has shot up. Not sure NSAIDS will have much if any effect with that sort of inflammation, probably not, and the only way to lower it effectively is with immune suppressing meds we use to treat RA.

Reply

I know wishbone. My head hurts with it all at times. Wanting to do the right things but not really knowing what the right things are. Hope your having one of your better days. 🙂

1 like
Reply

I'm indecisive at the best of times and trying to decide what to do for the best when it comes to my health really does my 'ed in! :-O I hate taking pain killers, and used to try my best to get by without them, or at least not take a big enough dose to properly manage the pain. Eventually the constant pain started to wear me down, as did my wife keeping on to me to take more pain relief! :-) So I'm now on the max dose dose of tramadol, which I take with 2 paracetamol, and do the same with my one naproxen tablet. I find paracetamol makes both meds more effective as you do with diclofenic. I'm still in pain but it's more tolerable with increased pain relief. I'm not feeling too bad, thanks for asking, plus I had an easier night than usual, so perhaps the baricitinib is beginning to work. If it is then the first thing I'll try stopping is the naproxen.

Good luck and hopefully your rheumy will find a med that does the business so you can get by on just the occasional pain killer or even none at all, which was the case with me for a few years.

Reply

Thankyou wishbone. Glad your feeling a bit better and hopefully one day you'll get by again on little or no painkillers. To me if you need them, your RA's not well enough controlled. Roll on them finding a cure for this God awful disease! Have a good day 🙂

1 like
Reply

You are taking both an NSAID and Tylenol that is very risky. Years ago NSAIDS were the wonder drug now they are telling people to AVOID it because of gastrointestinal bleeding and cardiovascular even stroke. You must have warnings over there. When it comes to RA it seems the worse meds are prescribed. Even the DMARDS. Time for a RA drug that isn't half lethal on it's own. Even Methotrexate when given to cancer patients actually causes cancer to grow elsewhere.

Reply

I know Tile. It's a very worrying disease which is treated with very worrying medications. But what else can we do?

Reply

Both Methotrexate and sulfasalazine DO definitely help put in RA in remission. but just be aware of the side effects and how to treat them or how to spot them.

Reply

👍

Reply

I personally stop stuff like that a few days before an appointment if I feel that rheumy needs to see/feel how I am. But then I only take anti-A’s and painkillers when things are unstable to tide me over until I get to see rheumy.

It’s a personal decision, and also depends on how much you trust your rheumy and get on with him or her. Now I have got to know my new one a bit, I feel she’ll believe me if I say that x joint has been swollen.

Reply

Thank you. I always think you talk a lot of sense and I'm grateful for your input 😊 I know diclofenac is an anti inflammatory and therefore should be helping with inflammation as well as pain but I still think of it as helping the symptoms rather than the disease and I want the rheumatologist to know how active the disease is. I've only seen the rheumy twice so far and haven't really formed an opinion yet. Although I believe he's involved in research/ trials etc so that bodes well. He didn't seem bothered that I was taking diclofenac though and taking it bothers me a lot! Oh I don't know. Like us all, I just want the disease controlled enough that I don't need to take them so I don't want them taken into consideration in the grand mix of treatments. If that makes sense? 🤔

1 like
Reply

Hi, I'm on MTX Prednisalone and Leflunomide and still I take paracetamol 3 times a day for pain relief, also take Oramorph and wear 2 Fentanyl patches, I have RA, OA, OP, Vasculitis (4 fractures in spine) my husband thinks I take too many pain killers but my rheumy doesn't, nor does my GP. I also use Fenbid gel. If you need them, you take them. But I'm not allowed to take Ibuprofen in tablet form.

Reply

Hi poemsgalore1. That's such a lot of medication to take and I'm sure you absolutely need them all. And if I needed them all to get through the day I too would take them. I'm still new to all this and hopeful that my disease will be, although, not cured then at least controlled well enough that, for the most part, I won't need anything other than the DMARDS and if needs be biologics. Which of course are themselves extremely serious medications. I'm sorry that although I know I've enjoyed your posts I can't remember your story but you obviously suffer and my heart goes out to you. Selfishly, I hope for a better outcome for myself and of course wish you well for the future and that one day your ra and all your other problems will be better controlled 🙂

Reply

When I was prescribed Celocoxib, my Rheumatologist told me not to take it while taking MTX. This is because the two interact to increase toxicity of kidneys, and it is the same for MTX and diclofenac. I thought you might appreciate that info:

bnf.nice.org.uk/interaction...

2 likes
Reply

Again thank you. Gosh that is worrying. Something else to ask about at my next rheumy appt. And something else to research up on later too. Hope you're having a not too bad day 🙂

Reply

Yet quite a few here are prescribed drugs together like that. My GP even told me I must take Celocoxib even though he knew I was on MTX. After taking both for two weeks, I went for review with rheumatologist and was told no, not safe.

That was about six months after diagnosis. It is a continual learning curve.

As for me, rest today. No choice due to some kind of bacterial infection/s that samples being tested will identify. I am on antibiotics so I hope that kills whatever is the problem. :-)

Reply

Sorry to hear that today not one of your better ones. Hopefully antibiotics will start having an effect soon. I'm not sure if it was yourself that posted about the RA warrior book but definitely someone on here. I'm about half way through it and I have to say it doesn't instill me with confidence in our medical professionals and their knowledge or lack of. I find myself hoping, as indeed we all will, that my professionals belong to the enlightened group. Haven't forgotten about the folic acid link...

1 like
Reply

We have to remember it is written by an American. However, citations of studies are excellent. Yes, I posted it but I take that book in slow sections as it is not encouraging in its descriptions of just what RA is and might do! However it is true, RA unmasked indeed. Our Rheumatology Dept here is focussed on ‘being positive’ since many are unable to cope with their diagnosis and the full facts.

This is one reason I try to find good research studies, that show ways to improve life for us, are in progress.

And the toxicity of DMARD drugs led me to search for alternatives eg to omeprazole, whenever possible. I just don’t want my liver and kidneys under too much stress.

I have felt pretty bad today with nausea, abdominal pain, sweats, chills, shivering and desire to simply sleep. Food stayed down anyway!

I think you are coping very well, being diagnosed such a short time ago. :-)

Reply

Somedays it's harder to be positive than others. I expect you're having a hard one today. I think kombucha helps. I call it my happy tea.....😁

Reply

As far as I know it is slightly alcoholic!

Reply

My friendly pharmacist ensures me it's not but just to make sure I got an alcohol tester. Negative 🙂

1 like
Reply

In the USA kombucha has alcohol in it if it doesn't it's not true kombucha because anything fermented has alcohol in it.

Reply

I know but I'm told it's in miniscule quantities......

Reply

It's more than a American cheap beer. But big deal shouldn't make much of a diff. I'm not a beer drinker and I can definitely tell that there is alcohol in it. In USA it is well know that kombucha has alcohol.

Reply

Hopefully we make it differently......I drink it then drive! 😲

Reply

And yes the book is extremely depressing

1 like
Reply

This is why you should always ask your rheumy or reumy nurse. They are experts in RA, your GP isn't.

Reply

My GP leaves everything to rheumy which as you say is as it should be. I'm finding your eicosanoids hard to fully understand 😳

Reply

Don't understand it myself Sumdy, but it was in the quote I posted. :-) This is from Wikipedia, so might be even more confusing. "Eicosanoids are signaling molecules made by the enzymatic or non-enzymatic oxidation of arachidonic acid or other polyunsaturated fatty acids (PUFAs) that are, similar to arachidonic acid, 20 carbon units in length. Eicosanoids are a sub-category of oxylipins, i.e. oxidized fatty acids of diverse carbon units in length, and are distinguished from other oxylipins by their overwhelming importance as cell signaling molecules. Eicosanoids function in diverse physiological systems and pathological processes such as: mounting or inhibiting inflammation, " No help at all really.

Reply

😁 no, not really 😂 I must have my stupid head on today! 🤣 x

Reply

Antibiotics while on MTX can also cause a drug - drug interaction. Think the UK needs to ALLOW for MORE blood tests taken MORE often to check for problems with kidney. liver, cardiac, blood counts etc when people are taking just about any drug with MTX.

1 like
Reply

Hi Sumdy - I was advised as painkillers mask pain, it's best to avoid. That said, if my pain was unbearable I would take them as it would be the only thing that could get me moving - even to get to the appointment! All the best. Hessie 😌

1 like
Reply

Thank you Hessie. I've always thought it best to do without painkillers if you can. But I absolutely agree that if you have to, you have to. 🙂

2 likes
Reply

The painkillers are there to help you live without pain. Take them !!!

Take them when you have pain. They actually prefer you to take paracetamol regularly, as this builds up in your system, which would also reduce any inflammation you have.

It doesn't matter to the rheumatologist if you are in or out of pain on your appointment, so take them, it makes everything so much easier to cope with. They listen to you, how you are doing and examine your joints. It all goes down in your notes, and if you are in too much pain for them to examine your joints properly then it's not doing you any good now is it ?

Get into the routine of taking pain relief, it's there for a reason. If you are in pain take the pills !

You could look into different things to assist with the pain as well. If it's your hands that are the worst thing then look into a hot wax bath. They are on ebay and not expensive, just don't go getting the fragranced wax, you want medical quality wax. It might sound awful putting your painful hands in hot wax but it really helps. It loosens up the joints, and somehow settle them down. Just a bit of a shock when you put your hands in the wax !

You leave the wax on, till it has cooled down, and it is better if you can wrap them up while its cooling as it stays warm for a bit longer. Removing the wax you are supposed to not use the other hand to remove it, you are supposed to wiggle your fingers to loosen it and just wriggle and bend your hands till the wax comes away. At least that is what you are supposed to do :)

Another thing that might help for pain in larger joints is ActiPatch. It is similar to Tens, except you can leave it in place 24/7 They really help. You can get a free sample one which lasts a week, you just pay postage. ActiPatch is on Facebook, or you can google it. actipatch.com

I hope you take your pills, change your mindset of no pills, unfortunately with RA pain relief is a necessity. You just need to find the best for you. But try the wax bath, it is really helpful x

2 likes
Reply

Thank you. That's all been a good help and I'll certainly look into the wax as a treatment. You obviously know a lot about it. Have you worked with people with RA?

As for the painkiller thing. My feeling is that I don't want to take them before seeing rheumy as he will think the RA is better controlled than it actually is. So I may need my methotrexate increased or another DMARD added because my RA is busy doing it's damage but this fact goes unrecognised as it is concealed by the painkillers. On the other hand it may be that the painkillers are a safer option than more DMARDS? But then I think no the RA must be controlled as well as possible so if I need more DMARDS then I need them. Paracetamol on its own does not touch my pain. I only take them as they enhance the effectiveness of the diclofenac. Many thanks again for your input and I hope you're having a good day 🙂

Reply

I'm not a professional. I've just had this for getting on for 40 years now. The doctor will be expecting you to take pain relief, and will mentally make a note of it. you can always tell him that you took some before your appt as the pain was bad, it is what they prefer you to do, the same as physiotherapists. They don't want you to be in pain, and want you to take your pills, they do their examinations by gently squeezing your finger joints and they can tell with that how inflamed your joints are, it's not all how much pain you are in. They will ask about pain, you just have to be honest and say that you either took them because the pain was bad, or you didn't take any because you didn't want it masked. I'm betting that they will tell you that you must take your pills, it not only helps with pain, but they help to prevent joint damage, and that is a priority

Reply

You said that your doctor said to keep taking paracetamol because it builds up in your system. Wow. Paracetamol is NOT an anti inflammatory!!!! It's a painkiller that here in USA we are told to AVOID and to only take occasionally. There is no benefit in it building up. more of a deficit. Can't believe what your doctors are advising. It's as if you have RA it's okay to take the meds that most people are told to avoid as much as possible. And a UK doctor told you to let it build up! Wow. It's like if you have RA good ahead and do yourself in. It's appalling.

Reply

We take paracetamol as a painkiller as it is better than aspirin. Aspirin has a bad side effect with anti inflammatories and we are advised not to take it. Children under 12 are never given aspiring at all here. I think the USA seem to give seriously addictive pain relief frequently, but they stop paracetamol ? A basic pain killer, very safe in the UK. Maybe yours is a different formulation to ours ? Addictive pain relief morphine etc, are controlled drugs and are not given out unless for severe pain uncontrolled by others

Reply

It's really easy to buy paracetamol in the USA it's available at every corner store. But it's really hard on your kidneys and when it was mixed with opioids it was the paracetamol that caused hospitalizations for overdosing because it shut down the kidneys.So have your kidneys and liver tested often.

1 like
Reply

Hi, I'm 42, diagnosed in my thirties. I have found my original rheumatologist who saw me up until 2 years ago was completely disinterested in levels of pain I have had. He seemed only interested in a presentation of swelling and stiffness in joints. When I have asked at appointments whether I should still be in so much pain when my arthritis meds (sulfasalazine) are in place, he would talk to me about looking after my mental health & staying positive, but did give me steroid injections like you have had. He also discussed starting methotrexate but I was still planning having another child so that wasn't going to happen. He didn't seem sure of this for me either anyway, so I wasn't confident in his advice. The second rheumatologist I saw when the first retired was very thorough with checks on me physically and continued with steroid injection. I was coping better since having had my youngest daughter then back into things with the Sulfasalazine & steroids injections when stopped breastfeeding & arthritis symptoms increased again, but the third rheumatologist (last appointment Dec 2018) told me to return to physio and said he was concerned about giving any further steroid injections, that this could make matters worse. I was having more bouts of pain but couldn't take pain killers as they cause bother with my Ulcerative Colitis which I also have. I did go back to physio, there was nothing more they could show me to help, they said I was doing everything as well as they would advise. I've been waiting since June for new rheumy appointment so quite overdue, and I have just gotten on with it through the half okay and the bad days...trying to find positives where I can. I do wish you all the best!

Reply

Hi Marz21

I'm sorry things aren't great for you just now and you don't seem to really be getting anywhere although hopefully next rheumy appointment will see you getting more help on the meds side. I'm very new to it all and definitely not as knowledgeable as some on here but if you're in UK as I am (Scotland) then I think I'm right in saying that steroid injection into the muscle which is what I've had, is used when things are quite bad or you have a big event in your life that you need help with. (That's what my rheumy nurse told me). Other than that it's methotrexate small doses working up. If that doesn't work then same but injections. If that still doesn't work or too many side effects then they try another DMARD either with methotrexate or on it's own and if that's still not good then a biosimilar is added. So they work up and all the while most people have painkillers also (some I think also steroid tablets). I would imagine that this will be according to Nice guidelines and so should be same for everyone. Including yourself of course. I realise with your gut problems you have to be careful with painkillers so that's an added complication for you but all the more reason they should be focusing on the DMARDS. But this doesn't seem to be happening for you. From what others on here have said it's a harder fight for treatment if you're sero negative rather than positive. I don't know which applies to you. If I was you I would fight for proper RA meds as, I'm sure you'll know that if left to it's own devices this awful disease can do untold damage to all parts of your body, not just joints. Why don't you re post your story here but not as reply to me and see what those in the know suggest. You definitely must get treated though. I wish you all good luck and best wishes for a brighter more pain free future xx

Reply

Thanks for advice. I am in Scotland. I was told the arthritis is related to the Ulcerative Colitis and would generally be slower in terms of being destructive. Sulfasalazine is to treat both, so methotrexate would be added onto that. I am sero-negative.

Reply

Ok Marz21. That's me learned something else now. I didn't realise those two went together. This awful disease just keeps giving......😟 All the best for the future x

Reply

If I were you I’d try to stay off the painkillers just before your appointment so that your rheumy can get the true picture.

Has he prescribed the Diclofenac & Paracetamol....If not why not let him prescribe suitable painkillers....possible with some sort of PPI to protect your stomach?

Hopefully once the Mtx is working well your RA pain will subside.

Reply

Thank you AgedCrone for taking the time to write. I agree. I think that's the right thing to do. But you put it so much better than me. No it was GP prescribed them, to tie me over until first rheumy appointment. I also got 30mg codeine and paracetamol from but thankfully since steroid jab i can manage without them now. My tummy seems to cope fine thank goodness. When I mentioned painkillers to rheumy nurse last time she said they left painkillers to the GPs. 🤔 x

Reply

In the USA Tylenol or paracetamol is a big NO NO. It is really bad for your kidneys. It's just strange to hear this mentioned all the time. Even the NSAIDS are a big NO NO. VIOXX was big NO NO decades ago. Just strange how paracetamol is mentioned so often.

Reply

Paracetamol is probably one of the most used painkillers here in UK. People think of them as relatively harmless 🤔

Reply

Well the UK seems to be behind definitely. That's why they even came out with oxycontin to get rid of the Tylenol. Tylenol is still sold here but only for an OCCASIONAL headache. I'm just shocked how often it's mentioned even on other UK forums. At first I didn't know what is was then I found out it was Tylenol that was a BIG surprise.

Reply

You may also like...