Do you ever skip a dose of medicine because of the cost or not being able to get into the Rheumy before you can get the prescription refilled? Are there other reasons that medicines for RA are not taken at the regular dosing schedule? Do you ever delay them because of a certain event going on in your life? Have you ever gotten a prescription and then not had it filled because you changed your mind?
I started taking medicine and then just quit once or twice because it made
me so ill. I didn't tell my Rheumy right away. I waited for a next appointment
to tell him. They were just pills so I didn't think that it made a difference.
He set me straight. My one friend that I do know in person went without her
injection for 3 weeks because she couldn't afford the medicine. She had
to pay extra because it's a specialty medicine that her private insurance set
Depends if it's making you feel really ill stop and Assit for your appoint RA mess are not life or death but you need to find one that's suits you as damage to joints will begin . We are lucky in the UK we don't pay more than £8.50 per prescription. If over 60 it's free or if on benifits or low income it's free to.
I was brought up in the "waste not, want not" era so finishing things up was always important - whether spinach on your plate or medicine. It was also a time when the NHS wasn't taken for granted, so if the State had paid for you to have a course of medicine then you took it come what may as you didn't want to waste their resources. And it was drummed into me that it was critical to finish courses of medicines as well as I was ill regularly ask child with frequent courses of antibiotics.
So no, I don't skip doses and would pay for a prescription even if I had to eat boiled potatoes all week to do so.
I think if we all had to pay, a lot of people would stop taking mess because they are very expensive. All mine are free because I have diabetes along side RA and a multitude of other illnesses (unfortunately) , we do however pay national insurance all our working lives so that we have a safety net for when/if we get ill or disabled, so really it's not all free anyway.
When I'm feeling better and am busy, I sometimes forget to take the evening dose. And sometimes I forget to reorder early enough - but I have never run out yet, although it has been a close run thing sometimes with the two day (not including weekends) delay before I can pick up the prescription (and I'm not complaining, I know the mountains of scripts they have to fit in between all the other work they do).
Me too oldtimer. Life just gets busy. When taking methotrexate, I have to eat or I get very sick. I do anyway...but taking it every Wed with dinner is a hard thing to remember for me. I am going to ask a question to everyone about how they remember.. X Karen
I set the reminder on my phone! It beeps weekly! I really try not to miss cos I really feel it in my joints and I have a weekly pill dispenser so I can see day to day of I have had the pills or not !
We are fortunate in the UK in that we do not have to take out private health insurance and pay a minimal amount for prescriptions. Our health service isn't free however we all contribute through taxation and national insurance. Scotland has prioritised certain areas of its health budget so we don't pay for prescriptions but we may lose out in other areas of health care. Hopefully the next government will continue to support a NHS free at point of service and no more creeping privatisation such as using private companies to deliver anti tnf drugs.
I have a good arrangement with Boots chemist. They automatically renew my regular prescriptions every two months and send me a text when I they are ready for collection. A wonderful service and again free.
I often wonder why so many folk from outside the UK use this forum organised by the UK organisation, NRAS. it can be quite confusing with different names for medication and different treatment protocols and priorities. Surely there are similar forums in their home countries where folk can more closely identify with them on issues such as private health insurance.
A site as good as this one has to go global. We flock here because no other forum functions as smoothly as this one. HU is a fountain of knowledge with an entire library of facts, stories and not only for one single illness but many. It also has diet and couch to 5K so its a one stop health site. No other forums can do that. Congats to the UK from the USA.
I had to skip medication when I had to pay. At one time back in 1980's I could not open the child proof cap and lived in the countryside and had to wait a week for the bus to get back to the chemist. By which time he wold me I did not need it after all as I was better. He gave me back the money.
I use sites in the States cos they are better than this one for other ailments. Esp arthritis
I think it's great that we have members with RA from across the world so this isn't intended to discourage at all - quite the opposite. But Creaky Joints looks very good too and is a patient led organisation similar to NRAS - but geared towards US users. I'm not a signed up member but I get sent their monthly bulletins, having met two of the organisers last year at the EULAR congress in Paris. The only thing that put me off joining was that I would have had to get a reference from my rheumy - who barely has time to see me about my RA more than once a year let alone start writing references just so that I can join an American charity!
Might be good for you to join Creaky Joints as well because the health systems are so entirely different that some of your questions can be hard for us in the UK to answer. That said Your question has provoked some responses that have really made me sit up and think hard about what others in the UK have to go through trying to get benefits and free drugs. Even trying to get contributory ESA has been really hard for me, let alone full sickness benefits. How anyone could "work the system" (so called benefit cheats) I just don't know - I think these people must be a fantasy of Tory/ UKIP minds?
We get free prescriptions in Scotland - long may it last!
Twitchytoes, you are spot on. A lot of our UK folklore about 'benefit cheats' is so wrong and verging on prejudice against the poor, sick, disadvantaged and unemployed. The fact is that the Government have decided that it's best to blame all societies ills on them which acts to divert attention from themselves or the bankers.
It's far easier to knock those who are already down.
It also means that a lot of people feel too ashamed to claim the benefits they are entitled to!
This amount always used to way outstrip the amount of benefits claimed fraudulently!
Mall, I want to make sure that I didn't misunderstand the intention of your desires. Do you feel like Americans and others are taking advantage of the hard work that the NRAS put together? Are you wishing us not to use those resources that your country provided? Or did you simply mean that it would be easier to talk about this in our own country with our own tools and understanding of how things are done so no one gets confused? ...I mean this kindly, non confrontational. .. I guess that it just bugs me now if I can be a guest or if I should not contribute at all... I was asking questions to try to brighten up the mood that I was in as in hopeless. I was hoping to be inspired by others who think about what can be improved with doctor patient relationship and was shooting to think about what our bodies are still able to do... and I probably messed that one up by asking too many things not related to RA enough. Reading is something that almost all of us can do. Looking at informative inspiring websites about RA is something we all can do.. that's all that I was trying for.. and interesting gadgets to help my hands that are having some trouble was really really helpful. I won't bring drama.. Thank you. Karen
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Yikes, as far as I'm concerned you're very welcome here.
I've benefitted enormously from belonging to a PsA site based in the US. Who cares about nationality? We have so much in common.
I think the ideal situation is to take our meds regularly unless that becomes absolutely impossible for financial or other reasons. And keep your rheumy in the loop - these people are mega important to us patients and need to know what we're up to. A good rheumy is for life, not just for Christmas!
Your initial post seemed to be commenting and asking questions about private health insurance which doesn't apply in the UK. The point I was making perhaps badly was that you may get better information and more relevant comments from a forum in your home country in relation to private health insurance. NRAS is an excellent UK charity supporting folk in the UK with RA and this NRAS forum is a brilliant resource for folk with RD world wide but maybe it is not the best place to seek information about health costs outside the UK. I am sorry to have "bugged" you; my response was directed towards your comments about private health insurance and health care costs and not you as an American contributor to the forum.
Bless your heart for being kind in your answer. It all sounded bad so let's hug and get on with it. I worried so much. If you read the answers, look how many of us from all different countries face missing doses of medicines or can't even get any for various reasons... l am more amazed at the many many thing Mall, that we do have in common. Aren't you? You could never bug me,, l am the one asking these lovely people in your country for help. HU RA cannot be beat for getting answers and news. Thank everyone because a small group made this site a global and the best in the world.
Hi Karen. On a lighter note, I find that a man is quite a helpful gadget to have around the house. I don't know what I would do without mine and I realise just how lucky I am.
Nic xx
I cant afford my meds at the moment. I lost my job through ill health recently and welfare benefits are not that easy to get and it is really stressful applying for them especially when you have worked all your life and suddenly you have to rely on welfare. I have RD, Fibro, osteoarthritis, Sjorgens, Gerd (and I believe hypothyroid though not diagnosed.) I know there is a pre payment card for prescriptions which is cheaper but you have to have the money up front.
I have been prescribed hydroxy twice but each time the Rheumy dismissed my concerns and wasnt listening to me when I said the optician I had last seen said I had pressure in my eyes so I had concerns about the side effects of hydroxy on eyes. All she said was looks like it was all ok and side effect dont start until you have been on it 5 years. Im sorry but I dont want to take that chance. Would she take it under these circumstances?
I don't know if you've applied for PIP, I know it's not easy to think you need help but try to think of it this way, you've paid your NI & Taxes, it's not holding your hand out if that's your concern, that money is there for you to have access to having paid into them all your working life & you now need to draw on it. Think on it as a savings account, you just need to apply to have some of it. If things are bad I'm sure if you went to your local CAB they'd help you, or DIAL if you have one local to you.
There's also help if your partner is on low income, so please don't struggle on, there are options out there for you.
Thank you for your reply nomoreheels. Unfortunately the CAB around here is useless. I went to them for help to apply for ESA when I lost my job and they couldnt help they just gave me the Gov web address for claiming so I struggled to complete the form alone which is difficult when hands hurt and brain fog stops the concentration. My other half is dyslexic so cant help with it either so I did little at a time. Just waiting to hear now but they seem to take an age. Thanks again. Joolz.x
Oh I know the flipping form is so long, I took 2 days over mine & even then my writing became so scrawled. The process can take an age & I had the added problem of a habitual residence test, don't know if you read my ramblings of needing to chase up just to get my form? Hopefully once you receive your date for assessment it won't be too long before you hear, that seems an age too. Keep us updated & just ask if you need any of our experiences of the assessment.
Have you spoken to your local Welfare Officer about your situation? Your Town Hall will have details of how to arrange an interview, ours was very helpful & pointed us in the direction & people to contact necessary to our family needs.
Thank you. It took me close to 4 weeks to complete the form and get evidence. I have heard that Atos who I had to send my form to was taken over by Maximus so that probably has held it up too. I will contact my local council to find out about a welfare officer. Thanks again. Joolz.x
Ive only ever skipped or rationed my meds when ive let myself get short due to not keeping an eye on what i have left, and not putting repeat prescription in quick enough, i pay for a prepayment monthy certificate, £10.40 a month and considering how many drugs im on, its a sure winner for me in the long run.
My GP advised me that prepayment was the way to go once you needed 4 or more drugs regularly. Before Scotland issued free prescriptions I bought 3 monthly pre payment certificates. The GP gave me prescriptions of drugs to last for 2 months so I usually managed to get 4 months of drugs on each 3 month certificate saving myself the equivalent of 3 months certificate costs each year on top of the saving by not paying for drugs individually . It only worked if I didn't have a change in meds over a long period. I am not sure if you can still get away with having a months gap in between applying for certificates but it might be worth a try.
I have an arrangement with my local chemist, Boots, they reorder my repeat prescriptions from the GP when due and text me when I need to pick them up. It might be worth asking your local pharmacy if they provide a similar reordering service. It saves the hassle of trying to remember to re order on time.
I hope we are all thinking carefully about the forthcoming election and putting pressure on our prospective representatives in regard to prescription charges. Scotland didn't remove the charges overnight but gradually reduced them over a period of years, similar to what is happening in Wales just now. England could do the same but it requires a lot of political will and patience.
I won't continue taking meds if I feel that the side effects are too bad, but I always tell my doctor why I am stopping them, and usually try to discuss alternatives first, eg taking at a slightly different time, reducing slightly, etc. I am in scotland so price isn't an issue. When I lived somewhere where I had to pay a significant part charge I always used to discuss the potential benefits and risks of not taking a med with my doctor so I could feel confident that it was going to be worth while adding in a new med, and that medication was the best way of dealing with the problem.
I skip Mtx when I am coming down with a cold or sore throat, and just take it the next week. Since I am not working now, I tend to not have a reliable schedule for taking my meds, but I do take them most days.
I had 2 years without insurance of any kind and I had to ration my meds & took 1/2 doses to save money, but I paid for it in stiffness & pain. It was meds vs food, meds usually won & then I would get food from the Food Bank & Food Nets.
Christine
You are based in the U.S too I believe Christine? But the similarities with your awful lean times are great as there are food banks across the UK now too so a lesson to be learned re the forthcoming general election and bringing pressure to bear on MPs across the land I feel. Here is a link to the American patient led rheumy organisation in case you both find this useful to join as well as remaining here as valued members of this community.
I had a long period of not wanting to be taking MTX, and wanting to heal myself "naturally" (i.e. through diet and lifestyle), and rather than taking an integrated approach, I cold turkeyed my MTX and meloxicam (NSAID). This was NOT a good idea and I suffered through for about a month or so before I finally gave in and ended up taking the max dose of MTX (25mg), meloxicam AND 400mg of hydroxy. I decided that it was better to get things under control and hopefully halt further damage to my joints. Now I am off both meloxicam and hydroxy, and both were my own decision and not the advice of my rheumy. But things are well controlled now. I am following my rheumy's guidance when it comes to MTX and I am also trying to follow a healthy diet (i.e. blend of The Perfect Health Diet by Paul Jaminet and The Paleo Approach by Sarah Ballantyne).
I got a prescription for an anti-depressant when I was in my initial flare and was feeling pretty low, but I didn't take it. My feeling was that it was legitimate for me to be sad/upset about a) my diagnosis and b) my increasing pain and decreasing mobility, so I held onto that prescription. I ended up seeing a psychologist instead, and then finally got my RA in remission with Humira, and returned the prescription unopened to the pharmacy for disposal.
I also got a prescription for Arava that I did not fill out, because much as I hate MTX, I was more afraid to take Arava. I'm not planning to have anymore children, but what if I do get pregnant? So, I stuck to the MTX.
One thing I will say, it seemed for at least a year that the MTX did absolutely nothing for me. You'll find me complaining about it in one of my earlier posts. But after reducing the MTX all the way down to 5mg (2 tablets), and then experiencing a year-long flare (that arguably could have been shorter if I'd just upped the MTX), I realize that for better or worse, my body is getting some benefit from MTX.
Anyway, that's my story. I'm not so great with being told things and have to learn them on my own. I also have trust issues with my rheumy, which is not conducive to following her advice.
Karen I so relate to your last paragraph!
But I did just want to pick up on something that concerned me a little. As far as I know it would be just as unsafe to accidentally get pregnant on MTX as it would be on Arava/ Leflunomide. I'm past childbearing years now so don't have to consider this factor at all myself but thought it important to clarify that you do know it wouldn't be safe to conceive while taking MTX don't you? Tx
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Do you ever have trouble with childproof caps?
Update re MTX takes 6mths to work good news got appt next wk with rheumy!!
first appointment with the rheumy nurse , since starting anti tnf
Do you ruin it for yourself???
