Should I take the medication or not?

Paleogirl
Paleogirl Member Posts: 75
edited 26. Sep 2016, 06:58 in Living with Arthritis archive
Hi

I was diagnosed a couple of days ago and still feel shell shocked. I went in expecting to be told I was moaning about nothing and instead I'm told I have a slightly high anti ccp but that I definitely have RA as on examination my joints are swollen.

Suddenly all these leaflets were thrust at me and a crib sheet on how and when I needed to take all the drugs they were now putting me on which include methotrexate and an anti malarial. They also gave me a shot of steroids which has massively worsened my symptoms.

The question I have is do I really need to take these. I didn't get a chance to discuss anything. I was just told I would feel better but I'm looking at the horrendous side effects, and thinking really?
Part of me doesn't believe the diagnosis either. My grandmother died of it but I look nothing like her in terms of swelling.

I've always had a great immune system, few colds, illnesses etc and am an outdoor swimmer. I'm told now my immune system will be compromised, my hair will fall out and I will have to give up my swimming because of the medication.

So sorry for the long post but I just feel I'm being railroaded in to a lifetime of drugs that will leave me worse than the damn illness and I don't know what to do

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi Paleogirl hang on in there you can always ring the helpline on the top of the board if you want and you will get someone to talk to that's what they are there for to reassure and help.
    Weekends are slow as people are away but some one will answer you when they can.
    hope all goes well.
    Christine
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    A diagnosis of RA can come as a big shock. It sounds as if you thought you had nothing much wrong with you and I'm sure, if you're used to good health and no medication, the sudden mind switch to having a lifelong disease requiring lifelong medication will be hard.

    It won't seem like it right now but you've been lucky in getting a referral to a rheumatologist so early on and being offered DMARDS (Disease Modifying Anti-Rheumatic Drugs). With luck, your RA will be under control very quickly and you'll never get to look like your grandmother did. Very, very few people actually die of RA but, uncontrolled, it can certainly affect the internal organs and shorten life.

    I guess it's possible but unlikely that the steroid jab made things worse. RA worsens naturally and at will without medication. A far more likely cause of it worsening is the stress you are currently under. Arthritis feeds off stress.

    I'm wondering what are 'all the drugs they were now putting me on' other than the meth and hydroxy. The latter two are standard fare for RA. They've kept mine under control for many years. Side effects are only ever 'potential'. Manufacturers are bound, by law, to list every potential one but most people don't get any and those who do get the bad ones are usually people with multiple diseases on a shed load of meds. The humble paracetamol can kill but most people swallow it happily without a glance at the leaflet inside.

    Your 'great immune system' is part of the problem. RA is an autoimmune disease. Our immune systems are in overdrive and attacking not just 'foreign invaders' but our own bodies. The purpose of the DMARDS is to dampen down the immune system so that this doesn't happen. Yes, it does leave us a little more open to colds and bugs but a little care, good hygiene and an annual flu jab sorts that out.

    I've no idea why you've been told to give up swimming unless that's just a temporary thing. Usually swimming is regarded as good for arthritis. It's also highly unlikely that any of your hair will fall out. I tend to find a few stray ones on my pillow but that's it. I have a full head of thick hair. Presumably you have been given a dietary supplement of folic acid. That's to mitigate against any such side effects.

    I do understand how bewildering it must all seem but no-one is making you take the meds. If you really believe that they 'will leave me worse than the damn illness' I just wish I could show you my body. These meds weren't about when I was diagnosed at 15. Now my only straight joints are the ones that have been replaced or have fused themselves, painfully, over the years.

    I think, once you've got over the shock of diagnosis, you'll realise how lucky you are to have been diagnosed so quickly and to have got on the disease modifying meds before much damage can be done. Try reading up on RA here http://tinyurl.com/gr9sx7m and please do get back to us if you have questions.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Paleogirl
    Paleogirl Member Posts: 75
    edited 30. Nov -1, 00:00
    Hi many thanks for your response. Lots to think about. I think part of the issue is I had a succession of GPs telling me I was just a bit neurotic about getting older (46) and there was nothing wrong.

    I then saw another GP by chance who said I think we will do bloods. Even when it came back I was told they were normal then that same GP rang me and said he didn't think they were and would refer me anyway.

    Just goes to show its a bit of a lottery. The GP who referred me has been criticised by his practice bosses for too many referrals for tests previously!
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Hello Paleogirl
    Welcome from me I replied to your post in Say hello
    Love
    Toni xx
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    By definition GPs are not specialists so can't always get these things right but I think it would be very unusual for a rheumatologist to say you definitely had RA if there was any doubt. Unfortunately, you definitely qualify for our gang :D I wish it weren't so, for your sake, but you really could have a good outcome with being given the meds so quickly. I do hope so.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I am quite sure that if I had been started on the meds at the beginning of my troubles I would not be in the mess I am now. I began with one affected joint, now it's around forty and the joint damage caused by my PsA has led to OA (which was diagnosed in 2011). I was given crutches after my first synovectomy in 2002 and after a few months was down to one walking stick. That's the best it's been. I still have the crutches but also a rollator and a wheel chair for the extremely rough days and holidays. I missed five years of treatment and I know from reading on here that those who are diagnosed faster and begin the meds earlier have a far better outcome.

    What is the anti-malarial drug you've been given? I have tried many DMARDs and NSAIDs but not, as far as I know, an anti-malarial, however I do take an anti-TNF. I have had steroid injections into my bottom and joints but only one ever worked (into my right ankle for the OA) - that gave three months of pain relief in that joint but not the others. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    The anti-malarial will be hydroxychloroquine. It was first brought out as an anti-malarial but it was found to have good results with RA so I think that's its main use now. I've been on it for 16 years or so. It's only a mild DMARD. This sort of thing happens with quite a lot of meds
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Paleogirl
    Paleogirl Member Posts: 75
    edited 30. Nov -1, 00:00
    Yes that's right, though I've opted for seeing the optician first before I take it as I am prone to some of the eye damage it can cause.

    What time of day do people think is best to to take the methotrexate?
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    The only thing my rheumatologist has ever tested me for with hydroxy is colour blindness. Other side effects are more likely to occur when it's used at higher doses for malaria.

    I take my meth with breakfast. I don't think there's a 'right' time of day. I know some, who find it makes them a bit queasy, prefer to take it at bedtime so as not to experience the nausea.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hello Paleogirl
    I just want to say welcome to the forum and like SW says you really are lucky to get diagnosed so soon..its such a shame these Rheumy are so busy and dont have the time to explain things..its not nice to just have to go away with a letter..you make a list of question for when you next visit them...and I really do wish you well with the meds..
    Love
    Barbara
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Ooooh, I've learned summat, thank you Sticky. I never knew that hydroxy began its working life as an anti-malarial - I've never taken it but I know that a number of medications we take overlap into treating other conditions.

    Paleogirl, When I was on tablets I did them in the morning but I developed a rash so was taken off them. With the injected meth I carry on the habit of doing it in the morning, that way it's done and dusted and I can get on with things. I am fortunate in that I am so far unaffected by side-effects - they have to be listed by law but they are only potential not guaranteed. I do, occasionally, have a 'post-meth' day which can be the following one or the day after, where I feel extra-extra tired but I just rest until it's passed. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    Hi Paleogirl ,

    some of us have had RA for a long long time , myself over twenty years , & if you have got RA you will have it for a long time , the thing to remember is to stop joint damage , some of us are unlucky but most can be well controled with drugs

    I was on Methotrexate for 18 years , they give you folic acid which helps with the side effects from it , I was on the max dose of 25mg tablets one day a week & take 5mg folic acid the other six days ,
    never been on hydroxychloroquine so cant help you but on a couple of similar drugs

    most rheumatology departments have a help line , it helps being able to talk to the rheumatology nurses as the GP/surgerys very little about RA as do some of the charities like Arthritis care , just be careful about anything you read online or in the daily press , tend to trust the main charities websites but even with methotrexate you have to be careful with any supplements you take with it so check with your nurses
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    trepolpen wrote:
    you have to be careful with any supplements you take with it so check with your nurses


    A good point, trepolpen. Yes, always check with a pharmacist about interactions between prescribed meds and dietary supplements. Many people think herbs and supplements are natural and therefore always OK. They've obviously never heard of belladonna :lol:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Paleogirl
    Paleogirl Member Posts: 75
    edited 30. Nov -1, 00:00
    Unfortunately the RA help line at my hospital, the only way to contact the consultant and nurses is open for one hour per day. This means you cannot get through. A colleague at work says everyone has given up on it. I tried for the full hour on Friday and today with no success.

    Spoke to my GP who thinks I've reacted badly to the steroids. They've told me to continue with the high strength cocodamol and take the other tablets.

    The clinic told me I would get an appointment through as I've in,y been given one month's dose but we shall see
  • Paleogirl
    Paleogirl Member Posts: 75
    edited 30. Nov -1, 00:00
    I live in a rural area where the hospital is in special measures so it's not the best
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    I hope you're coping ok?

    Thinking of you

    Love

    Toni xxx
  • Paleogirl
    Paleogirl Member Posts: 75
    edited 30. Nov -1, 00:00
    Thanks everyone for your kind words.

    I decided to start the methotrexate tonight but I'm really struggling with the idea. The side effects seem absolutely horrific. I'm struggling with the thought of taking something that will deliberately make me ill.

    I used to have a horrendous time with severe urine infections and IBS which after surgery once they found out what was wrong was stopped and I've been really well. Now it seems I will be back to square one.

    I was also on drugs in my twenties that caused hair loss. Twenty years later my hair has only just recovered and now it's going to start all over again.

    I think this is compounded by my colleague at work who I had to support and help through the catastrophic reaction she had to starting methotrexate.

    Being newly diagnosed I suppose I wanted more time to say to the cosultant are you really sure and are there really no alternatives.

    My area is very backward when it comes to medical issues tending to stick with prescribing old fashioned treatments. One of my colleagues described us as being twenty years behind everyone else and this is also playing on my mind.

    I feel I keep going on about it but I keep getting the tablets out and then putting them back
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    I do understand the fear of taking a new med especially the strong ones which we autoimmuners must swallow. I say 'must' because that's how I see it. Side effects are only potential. The effects of uncontrolled RA are not.

    You write about the potential side effects as if they are facts. They really aren't.

    You write “I'm struggling with the thought of taking something that will deliberately make me ill.” But it won't. You might get some mild problems but are unlikely to get any major ones. The purpose of the methotrexate is to dampen down your overactive immune system. That's what's making you ill.

    You then say “Now it seems I will be back to square one.” (with urine infections and IBS.) I really doubt it. We do have to take more precautions against infections but I think, in all my life, I've had four urine infections – two before I ever took meth and two while taking it.

    “now it's going to start all over again.” (ie hair loss). No. It's very unlikely. No-one can say categorically that these things won't happen but they really are very unlikely.

    I assure you neither your GP nor your rheumatologist has been 'backward when it comes to medical issues tending to stick with prescribing old fashioned treatments'. Your GP referred you to a consultant much quicker than many do and neither meth nor hydroxy are backward meds. They are the normal starting meds for anyone with RA. 'Backward' would mean merely anti-inflammatories or, as I was told aged 15, 'take aspirin until you get a buzzing in your ears'.

    Yes, it's a tough decision but surely life is full of tough decisions and each one made makes the next one easier. If you decide to go ahead and take the meds do try not to sit back and wait for side effects to happen. Read the leaflet then shove it in the back of a drawer. If anything untoward happens read it again to check if meth might be the culprit. Chances are it won't. As long as you are assiduous with your blood tests you should have no serious problems. And hopefully less pain.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Just a thought Paleogirl

    Is you biggest worry the MTX? if so what dose do they want you to start on? Would you prefer to start with the hydroxyl?? Have you already started on them?

    I think I do understand where you're coming from...are you feeling as though you have been rushed a bit and maybe want a little time to think it all through.

    Did you say you are expecting an appointment with the rheumatologist soon-ish??

    If it helps you are certainly not the only person who has been terrified of MTX. Have the prescribed any folic acid to take alongside - some are sure it prevents some side effects.

    Have you seen this old thread?

    http://arthritiscareforum.org.uk/viewtopic.php?f=8&t=44300&hilit=Frightened+to+take+methotrexate&start=15

    I think it might help.

    Take care of yourself ((()))

    Toni xxx
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    how much MTX they starting you on , & how much folic acid a week

    you should have regular blood test to keep check & will show up anything that is going wrong , Folic acid does help with the side effects & I had hair thinning but got better when they increased folic acid to 5mg six days a week

    we take a lot lower dose of MTX com[ared to those using it to treat cancer , the injections can be alot easier to tolerate that the tablets
  • Paleogirl
    Paleogirl Member Posts: 75
    edited 30. Nov -1, 00:00
    Hi, 20mg of the methotrexate, one tablet of the other drug per day and one 5mg folic aside tablet per week.

    Thanks for all your kind words
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    As I said the side-effects are not guaranteed, and the dosage we take of meth is minute compared to its use in other treatments. The medication is essential to reduce joint damage (and that isn't a potential risk, it's guaranteed ) the disease needs to be brought under control and suppressing the immune system is, currently, the only way to do it.

    Of course you don't have to take the meds, they are not compulsory but please be aware of the risk you run in not taking them. As I said I missed five years of treatment and I'm in a right old pickle now: I am fortunate in that my joint damage isn't visible but oh boy do I know it's there! :) I am thankful that I live in an age where the meds are available and being further developed, where my PsA is well-controlled, where my OA pain can be dulled with pain relief, and I am also thankful that I can afford to buy the aids I need so I get the best ones for my needs. Of course I would far prefer not to take the meds but, having had three months off everything back in 2007 thanks to a spot of trouble I know exactly how I would be and I don't want to be like that. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Scampdog
    Scampdog Member Posts: 43
    edited 30. Nov -1, 00:00
    Hello Paleogirl read all this with interest, just had an op on my hand whilst surgeon was removing bone he did not like the look of the fluid etc so sent it to the lab, just came back with results suspected RA ?, hence my interest....waiting for 1st appointment to come through with Consultant not sure when that will be ? scary Xx
  • Paleogirl
    Paleogirl Member Posts: 75
    edited 30. Nov -1, 00:00
    Hi Scampdog. Poor you, at least the surgeon had the nous to get it tested.

    I was sure because most of the doctors I'd seen were sure that I didn't have RA. I had some pain in my joints which I put down to other things. I also felt very fluey and tired which again I thought was just me.

    The consultant I saw was lovely. She was really caring. She said, poor you nearly all your joints are swollen, I think you really don't know how ill you are, honestly if you can tolerate the meds you will realise this in about three months when they kick in.

    Unfortunately I had an adverse reaction to the steroid injection which has flared my symptoms to the worst they've ever been, so when I saw the consultant I wasn't sure but now I definitely am.

    They had to take me of the methotrexate this week as I had a bit of a reaction but they are going to talk to the consultant when they get back off holiday. Last week I would have been glad but to be honest the pain is so bad now I would happily take everything they've given me.

    I'm still taking the hydroxy. Everyone on here has been lovely. I think once you've seen the consultant it will be okay. I guess we just have to accept this is us now. Though if I'm honest the main side effect I'm really worried about is the hair loss. I had to take drugs for something else which caused thinning hair and it was just so miserable. I don't think I can cope with that bit again.
  • Scampdog
    Scampdog Member Posts: 43
    edited 30. Nov -1, 00:00
    Me again, I have had Pernious Anaemia for many years now which is another auto immune disease I have B12 jabs every 4 weeks, it causes me tiredness, hair thinning plus other "goodies" so the thought of RA fills me with slight fear dispite being told I would be OK last week at the Hospital....but I will just wait and see for now Xxx