We’d be grateful if you could participate in the foll... - NRAS

NRAS

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We’d be grateful if you could participate in the following anonymous big poll about adherence to medication in RA – tick all that apply

689 Voters
484
I always take my medication as prescribed
120
I sometimes forget to take my medication
105
I take my meds most of the time
57
When I am well I reduce the amount of medication I take
43
I struggle with side effects so if I’m going out I don’t take my meds
27
I don’t like taking medication so choose not to take it all the time
8
I only take my meds if I feel a flare coming on
3
I often forget to take my medication
73 Replies
Beer134 profile image
Beer134

I have PsA

HevP profile image
HevP

i voted I sometimes forget to take my medication,( which happens once in a blue moon.\) but looking at the chart you have I often forget to take my meds

Maeve31 profile image
Maeve31 in reply toHevP

Me too - I only meant occasionally but it now comes up as often!

Kaksmith profile image
Kaksmith in reply toMaeve31

Me too!

ToffeeMumble profile image
ToffeeMumble in reply toKaksmith

Me too!

SALI profile image
SALI in reply toHevP

Me too

Fuzzywig profile image
Fuzzywig

I replied that I always take my medication as prescribed, which I do, but I try to avoid the painkillers, not the drugs treating the RA.

Snippers profile image
Snippers

I sometimes choose not to take my medication (mtx) for special occasions. My wedding etc.

I voted i always take my medication as prescribed and I take my meds most of the time.

Denise64 profile image
Denise64 in reply toSnippers

me the same , esp holidays etc n only once

Need2knowN profile image
Need2knowN

I sometimes forget, not often.

Uga35570 profile image
Uga35570

Yes always similar time same day each week

Dixiedeane147 profile image
Dixiedeane147

I always remember to take my medication

GranAmie profile image
GranAmie

i take 50% of recommended dose but with rhemy's ok

gailyb profile image
gailyb

I only miss my Dmards when I on antibiotics.

Rafandready70 profile image
Rafandready70

Now I take Benepali I am properly compliant, it’s too expensive to waste!

RA22345 profile image
RA22345

Don

RA22345 profile image
RA22345

Done

Jimbo64 profile image
Jimbo64

I’m like a walking rattle I suffer from RA & OA & high blood pressure & my kidneys are very bad I have had both my knees replaced

Roostermum profile image
Roostermum

The meds make a huge difference in my life (despite side effects) so for me it’s a no-brain’er; I WANT to take them!

DC56 profile image
DC56

I only reduce the pain killers

bencar profile image
bencar

Always take my RD medication as prescribed. Try to avoid painkillers if possible.

.

Farhalls profile image
Farhalls

I always take medication prescribed unless told to stop by doctor!

Mandalou profile image
Mandalou

Always take medicine as prescribed. I wouldn’t want to mess with the induced remission.

As others say, I try and stay off the pain meds so that if I flare they really do work.

Sockknitter profile image
Sockknitter

If I am well I cut down on anti inflammatories and painkillers but continue with the DMARDs as prescribed.

Kaksmith profile image
Kaksmith

I mean vey occasionally, but not ver often ie:once or twice a year

Minette53 profile image
Minette53

I don’t mess with blood pressure tablets but I take anti acids and painkillers according to how I feel

I’m currently not on any specific RA drugs like DMARDS but take pain relief and anti inflammatory meds as prescribed.

dzander5 profile image
dzander5

I always take my meds, I have been allergic to several and hoping to find that one that my body tolerates!

Manojghai profile image
Manojghai

I had rumotoied authorities and osterio authorities

PsA on Enbrel

donut43 profile image
donut43

I always take my medication as prescribed even if travelling or visiting.

Dan

Shell190 profile image
Shell190

I am on my 3rd DMARD but that is not working feel edgy about going down the biological route 😩 although most who do seem well on them

No comment. I takemethotrexate weekly by injection and folic acid once a week

KDShaw profile image
KDShaw

Although I am always compliant with medication I have often wondered whether or not I am benefiting from the biological drug Enbrel. I have mentioned to Rheumatologist however I am told that my bloods look good so presume the drug must be working. I am reluctant to stop the drug in case I have a flare but I am also mindful of the cost of the drugs and if I should come off the drug would I be offered anything in its place or put back on it if coming off it was a mistake.

I takemethotrexate byinjection once a week. Folic acid once a week. Paracetamol when required. Ibuprofen occasionally. Warfarin daily

PAK60 profile image
PAK60

No comment

Ladyinredxx profile image
Ladyinredxx

Take my meds as prescribed even though I don't like side effects, cause I'm in pain and arthritis doesn't care what U want.

LeoGwen profile image
LeoGwen

I always take my weekly Methotrexate but if I'm going out for the evening or a few days holiday I will delay taking it either until the next day (night out) or for a few days (on a short break). I then take my next dose 7 days later.

DiHi profile image
DiHi

I take my meds as prescribed! Sometimes I remember my injections of Chemzia in the middle of the night-i get up, and inject. I take painkillers, but if I don’t need more,I don’t take more.

Sencosheep profile image
Sencosheep

I always take my methotrexate and folic acid as prescribed

KaysDad profile image
KaysDad

I miss a methotrexate injection if i have a cold or long-standing cough, as suggested by a rheumatology nurse

gwynedd profile image
gwynedd

Looks like I'm one of the rebellious patients. I struggle with the side effects of mtx, sometimes (about once every 2 months) I miss a dose. I just need to take a break from it, my PsA is controlled so I feel its worth the risk for my mental health and having a break from not being ill for 1. 5 days every week!

skybluepink profile image
skybluepink

This does not show true picture.1 I do not have RA my Late Father had & Late Mother polmyalgisa rheumatica & severe MID multi infarct dementia.

Most of medications are preventative & so many since MI 14 urs ago .So have a dosset box delivered weekly now monthly since if antibiotic changes can get excrutiating spinal pain relieved with uti antibiotic& & NOT instantly acquired .From family of pharmacists .The diuretics have to be taken when up to it as low thyroid too as well as incomntinence so don't take if anyone else around or visiting.

Sometimes reduce or give myself but only with Drs knowledge .If not attending to me as an emergency & p/t I add ibuprophen/paracetamol or what may be needed eg' re liquid stools since my 20's appts cut off , angina spasms daily ignored since angioplasty use a combination of ranitidine & GTN when acute .Use also the homeopathic that other patients recommend sometimes if worried as not being treated appropriately as Cut back hospital appts yet microbiology telling admin not to submit the samples of 65" yr old women or do cerrvical smears when red flags or plan according to NHS constitution.

Have chronic utis acute 3 weekly if not cultured appropriately cause classic heart failure symptons or migrate to CFS / fiberomyalgia area. such as spinal .There is also dysponea /PH found when alarm went off on Reveal device not by Lung practitioners not overseen by Specialist .

helixhelix profile image
helixhelix in reply toskybluepink

The poll is specifically about taking medications for RA, so may not be relevant to you at all.

nomoreheels profile image
nomoreheels in reply tohelixhelix

I was thinking of mentioning the poll is for those with RD only. I do hope they've not voted, it does clearly state who it's aimed at.

Pamak profile image
Pamak

I take mine as prescribed unless I’m ill. The drugs are too expensive to waste

Gnarli profile image
Gnarli

Done

Floralqueens profile image
Floralqueens

I believe that the professionals know best and I respect their knowledge in the belief that they will keep me as well as I can be!!!

Canaries profile image
Canaries

I avoid taking any other meds unless the flare is really bad or lasting a long time.

Magz168 profile image
Magz168

I always take my meds only because my husband makes my tabs up into a container for everyday convenience, and asks every day if I have taken them .. as I am very forgetful these days xx

Blackwitch profile image
Blackwitch

I take my medication as prescribed but have a 3 monthly IM Depo-Medrone injection which has in the past been cancelled at short notice. Perhaps the question should be asked, ‘do we get the treatment we need?’

kau1 profile image
kau1

I occasionally forget to take one med due to it needing to be taken with food usually if I am eating out

stbernhard profile image
stbernhard

I am very glad to see that the vast majority takes their medication regularly.

Hermes123 profile image
Hermes123

Hermes123 I always take medications as prescribed by my GP. But recently I had to see a consultant who is a specialist in prescription medication. straight away he stop two of medications, saying I have no business taking them as they were given an adverse infect. He said this was due to the thinking on the kind of drugs i was taking had change. I have felt much better since. So are GPs updated soon enough to changes.

Dgall94 profile image
Dgall94

I voted i always take my medication but if truth be told....... The pain I'm in i need to take the cheapest of the cheap drug Amitriptyline!! I have RA, Raunauds Disease SLE Lupus & I've had SLE For 24 years but the medical professionals in Glasgow Scotland they don't know a lot about Lupus & don't even check your Medical file to see if certain drugs make it worse or Not..... Even the Rheumatologist i see every 6 months. I personally have never been listened to & that actually frustrates me so much so that i think just don't open your mouth as I've been getting test after test to find out why out the Blue 2 yes ago my breathing has been terrible & the minimalist of chores kills me & the Constant Sweating that i can't even put heating on & while it's maybe Minus 3 outside & everyone is freezing i don't feel it & I am soaking wet from morning to night every day in life!!! As i said in my opinion they don't give a Dam as to what you tell them!! Oh I'm now attending Oral Medicine !!

mickam profile image
mickam

I also answered that I sometimes forget to take my medication yet, on your chart, it comes up as always. This doesn't strike me as a particularly well run or useful survey.

Rebl13 profile image
Rebl13

I only ticked 2 boxes but the response shows 3??

I didn’t tick ‘I struggle with side effects’

LadyJan profile image
LadyJan

Very rarely forget meds...never mtx or humira....

LadyJan profile image
LadyJan

Never forget mtx or humira...

TheBoys profile image
TheBoys

I am not happy with the quality of the drugs. They seem to create more side issues. Been prescribed two so far in two months to disastrous effects ending up at A&E. Had a steroid shot in my knee which has caused knee joint damage.

jdrk profile image
jdrk

I get remade infusions every 7 weeks which is so helpful! The doctors are mad that I don't take my methotrexate as I should. (to ward off the body developing antibodies to the remicade) The brain fog has always been a problem for me.. they say I can take a low dose, but I don't....

Uzor profile image
Uzor

I have RA,OA,and High blood pressure. I take my tablets as prescribed, but sometimes forget. My pain killers,I take according to the extent of my pain on the day.

Uzor profile image
Uzor

I have RA, OA and high blood pressure. I always take my tablets as prescribed,but sometimes I forget. I take my pain killers sometimes- depending on the severity of my pain.

Appletree12345 profile image
Appletree12345

I am not sure what the objective is of the poll, if just fun or for use? Ideally there should be an option 'Don't know/not sure' and 'Various' - or permit multiple responses. Plus it would be useful to include a time frame on the question - such as over the past 12 months or 3 months. As the responses below suggest it would be useful to clarify if you mean arthritis drugs and/or OTC painkillers. Whatever, it is an interesting poll and throws out some interesting comments. I take control of my methotrexate and hydrochloriquine dose with the support of my rheumy consultant. I get regular blood results in full via my GP and patient access site and can see or feel if inflammation is going up and then increase dose - gradually +2.5mg every 2 weeks. I make sure pharmacy give me the 2.5mg pills and not 10mg methotrexate.

rawillbebeaten profile image
rawillbebeaten

I take a lot of Meds and approved supplements. They work, and I trust the Rheumy team.

I know how bad things were before and could be again. The Humira and now Imaldi (Fingers crossed) are so expensive that it would be terrible not to use them.

I would love to take less and hope to reduce my steroids - I've got down to 5mg, but lower would be great.

If I get side effects I speak to the team and try to get a switch

I do all I can to keep well, sleep and rest when I need to, but stay active, walking, Zumbe and gym. I also have complimentary therapies - Reflexolgy and Shiatsu, which I do find beneficial.

I used to bottle up my fears and emotions about the condition, but I'm more open now - I do get "down" and scared about the future but I don't hide it so much

Kid10 profile image
Kid10

I only reduce the painkillers

odelythmary profile image
odelythmary

Inearly always take my meds.

BrightonDiva profile image
BrightonDiva

I only stop medication when advised by consultant e.g. prior to surgery

caggy profile image
caggy

I always take methotrexate, but pain killers I take when needed.

caggy profile image
caggy

I always take methotrexate but limit pain killers

Orla5 profile image
Orla5

As prescribed I take 7.5 mgs Methotrexate tablets once a week and Folic Acid 5mgs once a week.

modover profile image
modover

I always take my meds, they have improved my life particularly the Cimzia which I have been taking for nearly 7 years.

Cath56 profile image
Cath56

I voted that i sometimes forget cos there's so much going on in my head i work part-time now due to rheum. thankfully it hasnt affected me badly

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