An unfortunate series of events: Hi I’m in a bit of a... - NRAS

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An unfortunate series of events

Chris_O profile image

Hi

I’m in a bit of a dilemma. Recently several things happened to me in quick succession.

1. My RA specialist ( locum ) advised me to reduce my MTX doseage.

2. I had a heart attack and my anti- inflammatory stopped ( naproxen )

I am now experiencing what I think is a flare ( shoulders / neck / back pain ) and have just seen my RA specialist who advised no change in medications, just stick to painkillers. Trouble is I’m in quite a lot of pain. Any advice?

Chris_0

39 Replies

Sorry to hear you have been so poorly, sending hugs for you.xxxx

Chris_O profile image
Chris_O in reply to sylvi

Hi Sylvi

Thank you

Chris_0

Really feel for you Chris. I hope that you get some helpful answers to your post. This forum is definitely the place to seek advice on these matters. It's been incredibly helpful to me over the last year. Take care, God Bless, Knip x

Chris_O profile image
Chris_O in reply to Knip

Hi

Thank you for your thoughts

Chris_0

Have you asked your GP to review the pain killers you are presently taking?Maybe a different type of pain drug would help you?

If you can’t get in touch with the GP….ask the pharmacist who oversees your prescription drugs what he suggests.

Chris_O profile image
Chris_O in reply to AgedCrone

Hi

Thanks for the reply. I will contact my GP to see if there’s any alternatives. Currently I’m on co-codomol 8/500 mg, which is ok for a short while.

I recently saw my RA specialist and described my areas of pain, but he said no change of medications, I then suggested that I think my pain is an RA flare, but still no change of his attitude. Since then after about a week I rang my RA nurse and again complained about being in pain, suggesting that my change in RA medications was possibly causing the flare. She said she would discuss it with the RA specialist, waiting for an answer?

Chris_0

Go back to theumy team to say the reduction of MTX has not beem successful and ask for a drug review.

Chris_O profile image
Chris_O in reply to helixhelix

Hi

Thanks for the reply. I have done that and am waiting for a reply. Fingers crossed.

Chris_0

Hi Chris_O, I'm so sorry to hear you are in a lot of pain. If you haven't done so already, you may find contacting our information and support advisors helpful. They will be able to suggest your best next steps. The phone line is open 9.30am - 4.30pm every week day 0800 298 7650, more information can be found here: nras.org.uk/helpline/ From Emma at NRAS.

Hi

Thanks for the reply.

Chris_0

Hi Chris. Sorry you are in such a dilemma. The things I would suggest, you have done. I do think you need to keep ringing rheumatology until you get some satisfaction. Aged crone's suggestion of speaking to Pharmacist is a good one. They are doing more and more now. I have been to see my Pharmacist a couple of times instead of going to GP and he has sorted out things for me. If they think you need to see GP again call your surgery and tell the receptionist that the Pharmacist says you need to see GP. I think that would fasttrack an appointment. Good luck.

Knip profile image
Knip in reply to Sheila_G

Sheila, yes, speaking to a pharmacist who reccomends seeing your GP does facilitate an earlier appoiintment. That's good advice. Our pharmacist said that more and more is being passed on to him now that the surgery won't take repeat prescriptions over the telephone, because it means that he is having to request them for people. Not everyone has a computer to order them online. I have to say that we have a good pharmacist locally, so we feel very fortunate. Take care, Kx

Chris_O profile image
Chris_O in reply to Sheila_G

Hi.

Thanks for the reply.

Chris_0

Sorry to hear of your situation. Why was your MTX reduced ? It would not seem to be working for you ?

Chris_O profile image
Chris_O in reply to Mmrr

Hi.

The MTX was reduced at my request, I have been getting nodules on my hands / feet and also felt that my RA was well under control. The events that happened afterward though proved I was wrong. I don’t know why my RA specialist won’t reverse his decision?

Chris_0

Mmrr profile image
Mmrr in reply to Chris_O

👍

Kags1068 profile image
Kags1068 in reply to Chris_O

Hi Chris

Sorry to hear of the problems you've been having, and, like you I cannot understand why your specialist won't let you just go back to your original MTX dose if your bloods are ok?! Unfortunately, MTX causes me to "grow" more nodules too (have hadto have some surgically removed in the past), so I have to keep it at a relatively low dose. Thankfully, I take 4 other DMARDs besides, so I suppose that cushions things a little! One thing my rheumatologist suggested at that time (and I did), was to add Hydroxychloroquine to the mix as apparently this can counteract the nodule growing encouraged in some of us by MTX. Good luck.

Chris_O profile image
Chris_O in reply to Kags1068

Hi

Thanks for the reply. I already take hydroxychloroquine, so that’s one less option, and I’ve been waiting for nearly 2 years to get some of my nodules removed. Thanks for the thoughts

Chris_0

Kags1068 profile image
Kags1068 in reply to Chris_O

Aah....drat! Sorry you've already gone done those routes (if you know what I mean)! Hope you don't have to wait too much longer for the nodule removal. Mine were taken off my feet, and it did help. Many years ago my rheumatologist experimented with injecting 2 or 3 of the biggest on my hands with steroid. (He'd read about it somewhere). It was incredible painful at the time, but did calm them down. Hope you can get some relief soon 😊

Chris_O profile image
Chris_O in reply to Kags1068

Hi.

Thanks for the reply. You sound like your rheumatologist is better then mine!

Chris_0

Kags1068 profile image
Kags1068 in reply to Chris_O

Yes, I'm afraid it does! This was my rheumatologist of 20 years ago who was great. I'm only on my 3rd in nearly 40 years so not bad going. They've all been very good, and I think that having the same one for a long period of time (18years, 20 years and nearly 2 years), and therefore having good continuity of care, has been a massive bonus. I really feel for people who are shunted from one doc to another and barely see the same doc twice - let alone a consultant. I'm sure that can't help things? 🤔

I assume your blood tests re MTX are fine. I would push for the meds to be reinstated if there is no issue around the dose you were taking. Working with your Consultant should be a partnership not a dictatorship, and they should be listening to your requests, and if no reason to refuse, they should reinstate your dose. 8/500 of cocodamol is a low dose, so there is scope for gp to increase to the 30/500 dose. Also 10% of patients don’t have the enzyme needed to break down codeine and it therefore has no effect. Tramadol may be a good option if cocodamol isn’t helping. Like you I had to stop regular nsaids after having a severe stroke at 52. My GP does still allow occasional Brufen on bad days, as per nice guidelines. They do state Brufen and Naproxen can be used in patients with cardiovascular events. I attach their guidance for you, it may help.

cks.nice.org.uk/topics/nsai...

Mmrr profile image
Mmrr in reply to Maureengibson

Interesting information about 10% of people not having the enzyme to break down codeine, I've never found it useful for pain management at all, it has no effect. Now perhaps I know why 😎. It is amazing the information you find out on this forum.

Maureengibson profile image
Maureengibson in reply to Mmrr

Glad to be of help. Here’s a screenshot explaining it, although they quote 7% I was always told 10%. Also here’s a good ANZ article that explains it well.

healthunlocked.com/nras/pos...

Codeine
Mmrr profile image
Mmrr in reply to Maureengibson

Thankyou Maureen

Hi Thanks for the reply. Fortunately my wife has some Zapain ( 30/500 mg codeine paracetamol) and I’ve been taking those occasionaly, and they do work but I don’t like to take too much ( drowsiness etc ) . Your advice is very useful, and I will take up some of your suggestions with my GP if my pain continues.

Thank you

Chris_0

CripLady profile image
CripLady in reply to Chris_O

Sleep is good for you. Not dismissing your comments, but maybe ‘doing nothing’ is what your body needs.

Chris_O profile image
Chris_O in reply to CripLady

Hi. Thanks for the reply, you sound strangely like my wife, who keeps telling me I’m overdoing it!! Yes, I agree with your thoughts, one problem is that my cardiac team tell me to get sufficient exercise to help with the after effects of the heart attack - so I guess that I need to do a balancing act.

Chris_0

So sorry to hear of your dilemma Chris I do hope you get it sorted, I cant imagine how you must be feeling. Take care and hang on in there.

Ray.

Chris_O profile image
Chris_O in reply to cropredy

Hi

Thanks for your thoughts.

Chris_0

1. Push for a rheumatology review of medication and perhaps a return to the previous dose of methotrexate.2. Zapain has a higher dose of codeine (30mg). As you have found that helpful ask for a supply from your GP. As you say, can be sedative, so mainly keep that for night time.

3. I'm afraid you need to push for help. Otherwise the medical team think you are OK. They are so overloaded they won't contact you.

4. Do rehabilitation post heart attack - it will help your joints as well. It should be offered!

Chris_O profile image
Chris_O in reply to oldtimer2

Hi.

Thanks for the reply. I will need to see my GP about painkillers - the advice about Zapain is certainly good, I don’t want to be driving having taken 2 of those!

Another contributor advised me to patient until all the symptoms have settled and then get my medications sorted out.

I appreciate the advice about being proactive about your own treatment/ medications, and am doing that.

Chris_0

Could be an idea to talk to Cardiologist as in my case the Nephrologist although stuff is prescribed by RA he actually can say yea or nah because he is in overall position and kidney disease trumps the RA. Anyway I hope you can get some relief and you improve in health. Could be until they get the heart or blood pressure under control that it's simply best to do nothing. That happened to me for 3 months after the AKI so could be a well trodden path and we just have to be patient. x

Chris_O profile image
Chris_O in reply to medway-lady

Hi.

Thanks for the reply. That’s the conclusion I’m coming to, is to be patient and wait till everything settles down. I will need to talk to my GP about pain killers though.

Chris_0

medway-lady profile image
medway-lady in reply to Chris_O

Just be careful especially if your on BP meds or awaiting more tests to protect your heart. Pain can be tolerated but another attack or stroke could well be much worse. I think this is a specialised area and only the Cardiologist can really give you advice as just say the MTX contributed to the attack, I'm not saying it did but waiting till things stabilise could well be in your long term best interests. Its hard though I had 3 months off after the AKI but it was so specialised the GP would not do anything it had to be the Consultant who made the decisions. I had no blood pressure issues but still no RA meds were prescribed until the cause of the AKI was diagnosed. So ouch might be better than death. Patience might be best, it was in my case. Best of luck. x

Chris_O profile image
Chris_O in reply to medway-lady

Hi

Thank you for your reply. Very sensible advice.

Chris_0

Hi sorry to hear about your pain.. What works for me when I have flares and more than any other painkillers is simple good old Ibuprofen. Not sure if your 'heart' doctor would approve this so do check beforehand. I suspect you have already tried Ibuprofen, but if you haven't, do make sure you eat beforehand. Hope this may help.

Chris_O profile image
Chris_O in reply to s2202

Hi.

Thanks for the reply.

Chris_0

Hmmm not sure why locum RA consultant suggested reducing your MTX.When I've asked about this with my usual consultant in the past it's a definite no no

unless changing meds.

Poor you a heart attack as if no already enough on your plate.

When I get flares most of the usual analgesics are not enough and I end up

seeing the specialist nurse at the RA dept for intra muscular cortisone injection.

Hope you get help asap.

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