So for you Nomoreheels, it comes down to " Do I want to be in a wheelchair crippled up with pain or do I chance it by taking medicine that potentially could harm me?" Did I sum that one up for you okay? I mean is that how you came to the decision to take the medicines offered to you?
I'm just kinda interested to know what people think when they find out how powerful these drugs really are... My question is " How do you make your own personal decision to put those drugs into your body" What kind of things do you consider? I used to think of how tired the treatment might make me and will I lose my hair, gain weight, get a worse disease...then I thought of total relief and living a normal life... How about the rest of you?
How did you feel when you took your first shot or infusion or pill??
Did you ever call the manufacturer of the drug or search online for more
information or specifics before you decided ? (reviews, general information)
Shame you misinterpreted it! I didn't dwell on the side effects, I don't believe anyone desperate for relief does. All I wanted was something to stop the continual crying & misery caused by the pain in my feet. I could have quite happily taken the axe we kept in the shed to them. The only time my eyes were dry was when I eventually dropped off through sheer exhaustion & then I'm not convinced I wasn't crying in my sleep. Hard to interpret sleep talking but apparently I did it a lot pre diagnosis.
Thank you for straigtening me out on this. I need a good clunk over the head for getting it wrong sometimes. What you said following that is exactly how l feel today. I'm taking a biologics that l would otherwise turn down but lm in a corner and lm doing it .
I empathise, it's an awful position to be in but you'll get there, you need a little belief & a whole heap of hope.
What got me to start taking the medication was to look at my boobs and think if it was to save you would I do it, answer has been yes to every new drug thrown my way.
I did not do too much research beforehand, I just took on board what the team said and the information sheets they gave me and made my decision from that. I took the view if I did too much I may confuse myself more, also I was in so much pain that I just wanted rid of it, and trusted the team knew best.
Lastly a very good friend of mine had PsA earlier than me and died from secondary pneumonia just before our 50 birthdays, which was another reason to trust the medical team, as she refused a lot of the treatments offered to her. I did not want to do that to my family.
I know this may sound alarmist to newbies but it's something that we have to think about when being offered new drugs or drugs that when you read the leaflet say 1/100000th may get ................, look at your loved ones and you will take or inject those drugs.
Wasn't even an issue for me. We ingest all sorts of harmful things like alcohol, tobacco, or car exhaust fumes. As well as the usual I could get run over by a bus (or board a plane with a mad pilot - poor poor things). And I was in huge pain & nearly completely bedridden. So yes a bit scared, and did lots of research as to best dose/combination, and discussed with rheumy what the plan should be, but never even considered that I would reject drug treatment.
I remember staring at the first lot of MTX pills for a while, but then I took them and am immensely thankful that I did!
I tend to read academic/scientific research papers. I also went to the big 3 day international rheumatology medical congress in Paris last year (patients can get a ticket for £35), and heard lots of medical papers etc etc and met the MTX manufacturers and so on. I tend to think that academic standards are reasonably good, so may not be completely unbiased but as good as it gets really. But basically I've become an RA nerd!
Does the information conflict? Which one do you trust the most? You've gone places that l haven't thought to look. Thank you for more ideas.
• in reply to
Check out EULAR sessions from last year's Paris Congress where Helix was - you may have to join online. There are loads of fascinating videos if you can access them online.
Hello! Good question I've always been scared of medication so when biologics were first suggested to me in Belfast in 2011, I refused because I was too scared. It was the worst decision of my life as it led to me becoming unfit for work, running out of money and having to move back home (= Switzerland).
Back in Switzerland, I continued to refuse biologics and wasn't on any meds except steroids. Again this was a terribly bad decision as I had quite bad side effects, mainly mental ones. I basically became very unstable, irritable and downright manic at times.
In September 2012, I was at my lowest point: I wasn't able to walk, I was terribly tired all the time, dangerously underweight and just everything hurt all the time. It was when my knees filled up with fluid yet again and I had to get an emergency appointment at the hospital to drain the fluid and get steroid shots that I decided to try biologics and whatever other meds my rheumy suggested. I read a bit about how biologics work but mainly I listened to my rheumy who was amazing. Very patient and reassuring. He explained to me that Simponi would work just as well as the steroids but without the side effects.
He was right, it took 5 (!!!) days after my first injection for the swelling and pain to vanish almost entirely. I've been in remission ever since and lead a normal life: I work, have just started running again and am mentally much more stable.
I urge everyone not to be scared of meds and trust the medical professionals. I wish I hadn't waited so long to try biologics - I might not have had to move back to Switzerland and leave my friends and my plans behind.
Hello! How long have you been on Simponi and what side effects did you have (only if you don't mind me asking!). I'm very well monitored by my rheumy so I am not worried about side effects too much! Too busy enjoying life
No, being underweight hasn't helped with anything, why would you say that? I had a lot of trouble with my knees and I've been underweight from when my disease was active even until now (though I managed to put on 7 kilos since remission!). xx
So many people are told " lose weight and your knees will feel better" l had 11 doses of Simponi and my ankles swelled. I also had some neuropathy that started. The verdict is still out there if that is why. I was taken off of it and put on Aspirin therapy until a month ago. I am taking Rituxin as a trial. I'm at the mercy of Mayo clinic to reverse neuropathy and treat inflamaatory neuropathy at the same time. Steroids yes, as in injections. Elmwoog is USA name of drug.
Ah, I see I think there is a difference between being a normal weight and being underweight. If someone who is overweight loses weight the healthy way this probably helps the joints. But being severely underweight is just as bad for health as being very overweight.
I've been on Simponi for over 2 years (over 24 doses) so I guess I'm in the clear (I hope!!).
It must be very disappointing to have to stop a drug that you responded to so well I hope your new trial drug will work for you!!! It can be such a tiring time to find the right meds. I used to be on MTX alongside Simponi but had side effects until my rheumy switched me to Leflunomide, which doesn't give me bad side effects. xx
I went from Simponi to a very long stop of all except 9 aspirin per day , Mayo did their testing on me for 7 months.. I had other issues to work out before right now. Mayo Clinic said that my immune system is going haywire and it started attacking my nerves. The nerves that Mayo took out of my body for biopsy were dead. It confirmed what their tests were showing. so they decided that to treat inflammatory arthritis and Nerve problem by killing off my B cells which are my immune system with Rituxin.. maybe bigger dose than RA patient not nearly as much as Chemo patient. I have my second infusion Tuesday.. I am noticing that my joints are loose again by a lot. BUT I am so exhausted. My bones hurt from laying in my bed with my mechanical back issues. When I am up I am cleaning, cooking, so basically I feel like I did exactly when I decided to take Simponi.
I was a different woman once it kicked in. It made such a profound difference.. but still not like I was when I was a teenager.. haha.. It kicked butt though for me. I cannot say enough good about it. but then the numb toes came and doctor pulled it. The neuropathy moved super fast up leg and fingers to elbow, then further. I really want to go back on Simponi rather than Rituxin. I hope that I have the choice sometime. Good luck on it and I pray for you that it will keep working.
I am 59 now and when in my twenties I worked as a medical secretary in London and briefly in a Rheumatology Department so I sort of knew what was coming when the GP told me I had tested positive for RA. I also knew that methotrexate was a cytotoxic as had also worked in haematology (leukaemia treatments) and was surprised when told that....... and I quote the GP "it's a difficult condition but they wack it hard now with Mtx and the results are good"! All quite mind blowing. I held out with the rheumatologist telling him that I didn't "want to put poison in my body" then had 2 months of unbridled fear and RD symptoms, and some short term depomedrone relief which was never going to be a permenent thing. That was November last year and it seems so naieve to me now.
What I think I am saying is that it came to a point where I became grateful that there has been so much headway made with RD i.e. the DMARDS and biologics, all of which was non existent all those years ago and prognosis was quite poor. Also I have come to understand that the medication is one thing and will do what it does, or not as the case maybe, but what is more powerful is taking responsibility for all the other parts of my life, particularly emotional well being which is the hardest part of it all. I am long term fan of Eckhart Tolle and the whole concept of living in the Now which is all I ever have anyway!! Also a great book by M.E.A. McNeil "RA The First Year" helped greatly towards taking those first tablets.
Anyway enough ruminating on rheumatology, and thanks to this supportive web site and everyone on it.
S
RA The first year is now on my reading list. Living in the now is the current phrase in Rheumatology. Some people jump in with two feet like you did and some tip toe and weigh in like l would have liked. I have to do this or lm released from my doctors practice.
While I was waiting to start Enbrel I kept thinking to myself......can I justify taking this drug, am I that bad? I had to wait several weeks and during that time I got so bad. Could hardly hold a fork to eat, took me ages to beable to stand knees so painful, could only walk a few steps before I had to furniture walk. Even crying hurt and it was painful to wipe away the tears with pain in fingers, wrist, elbow etc. By the time the day came to inject I was more worried about the drug not working then any side effects. If I did get any my attitude was that it would have to be dealt with, I just wanted the chance of some sort of normal life back.
Injected Enbrel this morning, I always check the date on the vile and make sure that the liquid is clear, I look at this clear liquid and I am still in awe of it, this little bit of liquid gave me my life back!!!!!
Funny, I look at mine and think are you going to sting today, and are you going to make me bleed, but I know your going to let me walk tomorrow! Then I inject the stuff and hubby says why are you pulling those faces? Apparently I do each time even if it's not stinging!
This is a very personal decision which changes over time as your condition varies. When joints are just rumbling along it is hard to justify powerful drugs but then when even eating is a struggle, and/or mobility is extremely limited you would try anything to 'have a life'. That's not to say we do not worry about the side effects and have suffered with many but find the 'right' combination for you and a relatively normal life can be had. Any damage done to a joint cannot be easily seen and cannot be reversed.
I am 48 and suffered since I was 19, been through most DMARD's and biologics and had a knee replacement a fortnight ago. I would most certainly have much more damage if it were not for the drugs over the years. Farm
farm 123, did your doctor ever put you on another type of RA drug that targets another type of substance in your body? There are TFN-a blockers and then more heavy duty b blockers... (I think that there are 4 or so of those) I have a good friend (now because we share RA) who is switching biologics, pills and she takes methotrexate.. The combinations are endless, it seems for her.. her little pinky and two middle fingers have the look of RA.. She gets nodules too. Ive never had either yet. (knocks on wood)
I am the same age as you with same arthritis.. I had some
months of Remicade, Humira, Simponi...
My throat was almost closed from Remicade- they
came with the crash cart and I was full of steroids
for a few days after.. I went from just fine to 15 minutes
later having doctors and nurses with a crash cart..
that was after 8 infusions of it..
I've been off of everything for a longer time now
so taking Rituxan is a big, big deal and I've never
had a secondary biologic.
Apparently I don't feel pain that is arthritic.. I did a lot
of sports, running.. so I figured I was banged up..
I had the first line of pills My wrists still swelled.. hurt.
Now they don't hurt and I'm getting the big gun medicine.
You are a trooper for going through what you did
so far. Your story should be known and heard because
RA drugs need to come to you years before you are
being allowed to take them. Gosh that makes me
mad that they wait until you are visibly crippled and
in that much pain. I don't mean you specifically - just
ini general.
I didn't find it a difficult decision at all. I could barely move when first big flare hit me. But even more persuasive was the all round debilitating effect of the disease at that point. I could stay awake for a couple of hours at most, I felt awful.
I told my rheumy that I couldn't call what I was experiencing 'fatigue' it was more like looking at the world from a coffin. I expected a blank expression at best or more likely obvious disdain at such melodrama. But no, she nodded with understanding, she'd heard similar many times before.
It seemed obvious to me that the disease was very bad for my body in many ways and that the toxicity of the drugs would be more than compensated for if they could even begin to control the destructive thing. So far that would seem to be true.
I'm coming at this from a different perspective. By the time I was diagnosed with RA and put on Methotrexate followed by Hydroxichloraqune- I had been polaxed many times by fracture like pain. I got stuck once in a bath for hours, another time had to get my son to turn on the car ignition and half hold the steering wheel - lift handbrake etc. my flares would arrive like storms with little warning - fingers changed shape overnight, I couldn't write or work. Sulfasalazine put me in hospital after only 3 weeks. MTX chased all this off with help from injections and Hydroxy - just the occasional bad flare when I dropped a dose.
But the thing is that I have lots of sympathy for those who find excruciating pain preferable to appalling unpredictable sickness at both ends, angioderma, painful rashes, scary swellings around neck and eyes. It also seems entirely understandable that those with just a swollen pinky or two might say no thanks to these drugs whatever their bloods are telling the doctors and the doctors are warning them. Psychologically it is so much easier to take drugs without overthinking or asking questions if we are racked with pain and virtually imobile.
By the time I got to MTX I had already tried Sulfasalazine and had a severe reaction and then been rendered bipolar twice by steroids. Frankly I was easily as terrified by the prospect of side effects as I was by the pain and destructive capabilities of RA. And to be honest I still am.
So it's great that so many here see these drugs as antidotes - long may this last until maybe one fine day there will be a cure. But remember that not everyone can tolerate these drugs no matter how much pain they are in.
So I get where you are coming from with this question Yikes - thanks for raising it and getting such interesting responses from people. X
twitchy toes, You have told me your story a long time ago when you started
out in Restless leg syndrome. I can see that you were really sent to and misguided
and did some serious reading to find your better place and even that is very
challenging. You are so right about being pushed to the point of "I don't care,
give me something to help me" I'm there with you and desperate to stop my nerves
from dying. RA drugs are going to pull a double to save my mobility and to even
be able to correct this neuropathy. Who knows where neuropathy will stop since
it''s moving at what Mayo Clinic calls an accelerated rate. I am taking Rituxan and
wish that I wasn't but I want to live. I want some mobility. I am fully functional...
so I am worried if my doctors and the million specialists are right about this... I feel
okay but my tests say "NOpe" something big is wrong.. XX Karen
• in reply to
No answers for you on this Karen - you've made your decision to take Rituximab. For what it's worth I think some people here would be grateful for the opportunity try this biologic drug so maybe the best attituude is to at least be thankful that you can?
If my RA were to become more aggressive again and if I passed the criteria for it then I would try it like a shot. Life is for living after all. So I would read what I needed just in order to understand how it works but not fret about long term consequences. I know people with RA and Lupus who have found it life changing. If I couldn't tolerate it then I'd fall into a gloom and beat myself up for a while and then move on to the next option.
I also know where neuropathic pain has taken me in the past and it's not been good. If I could take a drug to stall the progress of this awful dying of nerves - IVIg or Rituxamab - I certainly would but I haven't been offered these. So far however it seems that mine is a shape shifter so when the nerve pain is at its worst I barely recall joint pain and in recent months when I've felt very ill - both nerve and joint pain have faded into the background in favour of headaches, stomach pain, jaw pain, retching and coughing - coughing up the world just now or so it feels!
I know there are lots of people here who take Rituxan as you call it. I am just as scared of Azathioprine as I would be of taking this biologic. But like you if I take a drug I want it to tick as many boxes as possible so I read up and Azathioprine seems to be the next one to try. But only if my immune system goes from down in the gutter where it presently is - back to madly overactive where it was six months ago. I can now predict my ESR and my PVC within one or two points and currently it will be low at around 30 or less because I'm not stiff or hobbling - just cough cough coughing and sick at the sight of food. Can't win it seems - but maybe
you will Yikes - I will watch your progress with great interest. X
Ps oh yes my brief skirmish with the RLS misdiagnosis - which led to an overnight hospital stay due to narcolepsy and chest pain from Pamiprexole. No one can say life is dull aound here at least!
Bottom line is I aint getting out of this thing called life alive so I'm going to be as pain free and mobile as possible for as long as possible and if that means taking powerful but effective prescription meds then so be it and I'm grateful for the opportunity to positively manage my condition because that's something some sufferers around the globe just never have all because they were born into a different country that me - hey I got the vote so am using it in the most informed way as I possibly can ... I've got the meds and am using them in the most informed way as I possibly can!
Yes there are plenty that lost jobs and their health
insurance in the USA. They have co pays so high
that any medicine is out of reach. They make a few
hundred dollars more a year and then they don't
qualify for medicine that is free... you have to be
extremely poor to qualify in the USA. What does
someone do if they are working yet and need the
medicine where you live? Is it still free? In the USA
the medicines can be $1500 or more a month.
• in reply to
The NHS is an amazing institution Yikes. Healthcare is free to all. However there are stringent rules about who qualifies for the biologic drugs - even if you have private healthcare insurance you can't buy these drugs. They are only available here through the NHS so everyone has to meet these tight criteria. This does stop it being too unfair except the way each area allocates its funding can be very variable. This is what is known as a postcode lottery.
I went to the U.S. for the first time in October and like Victoria I found the approach to health quite bewildering, you live in a completely different culture to us. This is why we often seem to struggle to understand what each other is saying when it comes to drugs. But not where it comes to symptoms - these are the common bond. Tx
Yes, I was scared of the medication as well but my consultant told me that leaving the RD untreated could damage my body. I have been well for ten years now and very thankful for modern medicine. In the old days people were horribly crippled by RD and life expectancy was short. I try to look after my health by eating well and walking, weather permitting, every day.
I guess I look at it as wanting to have some of what has been stolen from me back. I want to be abel to go to work and not sit there thinking about how much pain I am in, I want to be able to finish the week thinking I can do all that on the weekend instead of thinking how I will fit in the jobs I HAVE too do around resting enough to go back to work for the week, I want t to feel not so fatigued even when I wake up in the morning that I wonder why the hell I bother keeping on going, I want to be able to enjoy my grand kids, I want to be able to drive long distances for wonderful holidays and have exciting road trips like I used to, I want to be able to walk and not feel so much pain, go shopping for more than an hour and then come home and rest for hours, go for walks, do so many things. I look at what is in them and what the side effects are, but then I put it out of my mind because I live in hope that something I try will eventually work.
Sometimes researching too much throws up more questions than answers & I fear that's what's happening here. Don't look too deeply, concentrate on getting better rather than the science of the meds & what they do to the good or bad.
An uneducated mind in someone afflicted by a disease (by that I mean not medically qualified with many years of studies, training & hands-on experience) can become befuddled only knowing part of the tale & that can lead to misinterpretation. Leave it to the professionals, in doing that no wrong conclusions can be drawn which can become dangerous, it has the capability to send you into a depression which could so easily be avoided if we trust in the ones qualified to make the call on which meds we need to give us the best quality of life.
You have an advantage on me then, I don't know anyone with RD, not one single person & one of the reasons for coming on here, I can talk openly without the concern of being misunderstood because my cyber friends get it, understand how it is to live with it.
I first happened upon the site whilst living in Spain, even more isolated because not only did I not know anyone with it there either all my treatment was with Spanish speaking medical professionals. Not that it concerned me overly, I was happy with my treatment, nothing was lost in translation but unfortunately for reasons beyond my control I wasn't able to join HU & the only accessible posts were any which had been left unlocked. Once I'd returned to the UK I found I'd hit a brick wall with a specific med it'd been suggested I took & needed some help from people who would be able to give me personal experience. I was blown away with the amount of replies & partly because of that I decided I would help wherever I could from then on. If I had experience I would share it, if I hadn't I could at least empathise & hopefully help someone else be less fearful.
So perhaps with the responses you've received you'll try to not overthink things anymore? It's not helpful for anyone, particularly those around you if you're worrying about your meds all the time, it can act as a barrier to your overall well-being, fear becomes a barrier, everything you want is the other side of that barrier. Perhaps I can point you to a post which came on this morning, if you haven't read it that is, someone we've helped from diagnosis & who wrote an uplifting post thanking her meds, you'll find it here healthunlocked.com/nras/pos....
I am a classically trained pianist. I had a stroke, and lost some of the fine mobility in my left hand, and the mathematical skills required to read and perform the level of music I was used to. Instead, I turned to blues and jazz and improv, all things that allowed me to fudge the left hand a bit, and still spill out my soul in music. Now RD is stealing that from me. I will NOT let it go without a fight. I have always defined myself as a musician and a writer. Writing I can still do with adaptive tech. Piano? Not so much. I can (and plan to) get a keyboard with lighter weight on the keys, say good-bye to my baby grand and get something I can play with less pain. I can still sing, but only so long as RD stays away from my jaw. I will not allow fear to stand in the way of treatment. It's the day after MTX and I feel like crap on a stick. Every time I stick that needle in, I have to think about the person I'm trying to save, and not how I'll feel the day after. Is it worth it? Not yet, but it might become so. It's still early in my journey. I can do all the research I like, the truth is that my care team has greater experience with this disease than I. I am perfectly capable of terrifying myself into immobility, but I choose not to. The meds could make me sick, but RD is guaranteed to. I choose the possibility of wellness, of music. -Bat
Well written, thank you for your honesty Bat. You're quickly becoming a valuable contributor with your experience of the disease entwined with your other problems, not all mentioned above & many of which I'm not sure I could handle too well at all with RD as well! Thanks for that. x
Well I've been off RA meds for over nine months now and I feel absolutely awful. Yes this is because I've just had pneumonia, but before that it was something else and again before that - something else to blame month after month.
When I saw the rheumy ten days ago I was more scared of what I'm feeling now and of being abandoned on this unmedicated island than I was of taking another immune suppressant drug. And for me this is saying a lot.
At least when I finally get back onto immunosuppressant medication I will be monitored on that rather than abandoned to my present fate of extreme unwellness. Even looking back to my two years on MTX when I was still flaring sometimes and felt very sick both ends - sometimes all week - at least then I had the energy to walk my dogs and wasn't more or less bed bound as I've become now.
So I think my experience shows that most people with autoimmune diseases need immune suppressant medication of some sort in order to function. Anyway one of the antibiotics I took for the pneumonia last week, Clarithromycin, made me feel far more sick than even MTX. Perhaps if I'd still been on a DMARD I wouldn't have been so run down that I ended up on two lots of antibiotics - although this sounds like a bit of a medical nonsense I realise but it's about getting the balance right between immune suppression and things becoming madly overactive I feel.
Of course it's not really a win win situation for any of us. I was a really ambitious visual artist and a very committed parent and partner. Now I'm not doing any art at all, have put my hobby of singing in a chamber choir on hold and am a fairly useless partner and parent presently. I didn't even make it to my youngest son's last ever parents' evening at the school last week. In my own experience the lemonade I got when on DMARDs was quite a lot sweeter than the extremely sour lemonade I've been getting since I've been off these drugs. It's not just about pain although this is getting me down a lot too - it's about fatigue and systemic illness, organs, nerves and state of mind.
But surely that's the case for the whole of the pharmaceutical industry. They pile money into research for say 15 years, ne to pay for trialling the drugs & the fewer their meds are needed & the newer the meds are the more they need to charge so in a way, not different to any company, simple case of supply & demand. For example BP & diabetes meds cost far less because there are far more produced as more people have those problems to medicate. I don't understand why people worry about how much money the Pharmaceutical companies make, they provide the drugs that help us & until the cure is found will continue to so no point in seeing them as the big bad wolf in my view.
They may pile money into research. In the USA, insurance is purchased
at a very high price. for some, its almost half of their earnings. There
is usually a large deductible to pay if it is approved by the insurance. It
seems the more that you pay for a premium the faster it's approved. We
go from the least expensive to the most - usually,, no matter what. The
cost of the medications is 1800 USD to 6000 USD that must be paid before
you get medicines...the insurance doesn't usually cover the cost of at least
a couple doses or more or not at all ...people miss doses, go without medicines
unless they are below poverty level or are on government assistance for living
otherwise known as a welfare which is hugely looked down by society...so
a senior citizen saves money all through the working years and gets RA at
age 65. They are now retired. They pay their own premium as an individual
payee.. insurance can charge higher rates or they may cancel the policy....
Yes, in America, Insurance companies can drop you if they lose money on
you....then no one wants to take you on as an insurance company.. so you
go without medicines and try herbs, diet, other means... or you take the
medicines at that cost plus doctor visit bills and deplete all savings fast..
RA is very much socio economic, psychological, physical disease... I am
lucky that I have an insurance that is part of a large employer to keep me
in the insurance pool... if they drop me, they have to drop a few thousand
more with me...but it won't be the case if employment is lost. My deductible
requires me to pay the first 12,000 USD upfront before getting medicines.
OUCH.... so another reason that people complain about drug companies.. .
I dislike January 1st. I have to freelance work right now to make up the
difference plus I have a regular job to attend to... I do a lot of my work out
of my home connected to corporate network....That's nice but it's still work.
Currently I am off for 6 weeks of treatments. It's been this way since I have
been almost living at Mayo Clinic since November....No real end in sight there.
Wow, did this get long and bitchy...didn't intend to be like that at all.. My
mood is kinda eh' right now after writing this. Stress relief...thank you.
I know the system is most unfair through my friends father & guess this is why if we hear gripes about "big pharma" it's usually from our overseas members who don't have the same system as us. Being publicly funded it makes me grateful for the NHS from this point of view, we pay in from the moment we start earning & a percentage from our NI. It may have failings, that's usually down to how the hospital or unit is run, but at least we're not forced into having to buy medical insurance & fined if we can't afford to do so because of circumstances. Some do of course usually as an add on but it's a choice we can make whether we do or not! That said I don't think my h could have any better treatment if he'd been in the private suite across the corridor from his recuperation ward, but the unit is a Centre of Excellence for our region & it's fortuitous we live so near, we're only in the next town, some patients have to travel quite some distance to receive treatment there.
It does seem a crazy situation that those who need it most have to work & work some more just to get & pay for the treatment they need.
I refused biologics in the late 90's when an Enbrel trial was offered. Felt not enough known then and felt too scared. Felt there was another option to go for in MTX injectable. To be honest that's how most of us feel about any of the drugs offered/recommended. Scared. Did well on MTX alone, then resisted again in 2010 when offered Enbrel. Eventually got there in 2013 but should have done it sooner. Got there eventually and it failed me after five weeks but I should have gone down the biolgics path sooner and not said I will think about it. It is hard to fathom .. really hard but what has done it for me each time taking a new med is to meet/know of people who have taken the same med and have had a life changing experience .. for the better of course. Faced with the misery of being bedbound/crippling pain and immobility ... choice has been made easier .. well for me. Reading what NMH said about the axe .. well I asked my hubby for a shotgun as I would have happily blown my knee caps off at one time. I am now on Rituximab which has completely halted my RA disease activity. You are at risk of other things too if you leave out of control RA untreated so there is always that to consider. You may give yourself more problems by not taking anything.
Neonkitty x
PS Good luck Farm, and hope you have a good recovery and that the latest med does something good for you. x
I did not hesitate about taking the medication offered. I would have taken anything! I was in such a lot of pain. I had already had to have 3mlnths of work with shoulder pain. I had to go to work. Was so pleased to get a diagnosis and could take something that hopefully was going to work for the pain, even though suffered with so much side effects. finally changed to injection for MTX what a difference. Have just been to see rummy nurse last week and she said next appointment she will introduce another strong medicine but don't know what.
I would take the medication offered. I was 18 months old when I was diagnosed with RA - way back in 1958. The only medication on offer to me for the first few years was soluble aspirin - by the time I was 5 the disease had rampaged through my whole body, no joint was unaffected, and I am left with severe deformities. I was given steroids (Prednisone) at age 5, which was great but the damage was already done. Over the early years I also tried various 'new' medicines, none for very long.
I've never been given the opportunity to try any of the drugs that are available now, the disease had been in remission for a long time, but I am left with the legacy of what it has done to my body and the severe disability and quite obvious deformities. It affects my whole body. (Thankfully not my heart etc)
I realise that the drugs that are available now can have severe side effects but to be honest if I was diagnosed now and had the chance I would jump at them! And we're all different -not everyone is going to have the side effects or the same side effects.
As I understand it, some of the drugs can help prevent the deformities - which is great - but it does irritate me when I sometimes see RA described as an 'invisible' illness. I think there are a lot of medical professionals (especially younger) who aren't fully aware of what RA can do to the body. Each time I'm in hospital I'm asked if students can examine me (not rheumatology either!) - I feel a bit like the Elephant Man!
I don't want to go on and on - I'm 58 now and there's a lot I could tell about what its been like all these years - but go on give the medication a go!
I wanted the pain to be gone and to be able to do all the things I used to be able to. I just trusted completely that the doctors knew what they were doing.
In reflection, I think I was maybe naive but I felt like I was slowly turning into a Zombie, although an immobile one!
It wasn't till I was looking on the net for information that I came across someones YouTube video diary, a young woman who has been diagnosed around the same time as me and she had opted to not take any medication but to use alternative therapies.
I was surprised and I am now wondering if I shouldn't check back and see how she is doing, and although it is not a choice/option that would suit me it definitely made me think more about the medication and what it was doing to my body. Her channel is called 'Healing Josefine'. I would be interested to know what others think about this?
I am going to watch it just because I opted for medicine and I always wonder what if I had done the alternative route. I think all of us do that are on the medicines. I hope that others return to this post to read what you wrote because I think that it is important to look at the what if route. And it's good to see other's stories and hear their thoughts.
Some of us took a nose dive and went along in our disease almost overnight - then we were told to get on meds or it will get worse.. in seeing our bodies changes - my was inability to move overnight with swelling right after surgery and then I knew that I had to save myself with medicines. There wasn't enough time to do anything different. It moved lightening fast on me..I felt like there was no choice to make.
The medicines halted it, that is 100% sure accurate. DMARDS were not enough for me. My spine was getting too bad to just stand by.
I think that we need to be partners with the doctor in charge of our progress/ range of motion/ loss of use. We need to include in our daily journals how much pain we had on the pain scale, where it hurt the most and what the symptoms were and write down what you can do rather than what you can't do. Write down your physical activity for that day so doctor can look at it over the week. Then write down your emotional side briefly.. and if you can do this.. it is so important to do to make yourself a partner.. Graph it for the month.. If you can do that and make it so simple for the doctor to see it at a glance then you have got a two way street happening and will get action. If you can't do it then have a friend do it for you based on your journal.. A doctor will not spend time reading your journal.. they simply have no time to do that.. you do that for yourself and if doctor asks to see it one day, you've got it. I think that you will be able to look back and realize just how much you really do participate in life or how much loss you do have to talk to the doctor about. We have a new life so swimming activities and interaction with the physical therapist counts as activity.
I agree. I too was bad. I think hers is currently just one or two joints.
I think that a combination of meds and alternatives is the way to go.
I do find her viewpoint fascinating though and I am curious to see how much she benefits and I'm also keen to know how much is psychology. Ah well. It's something that is a personal choice but I wonder how much of her choice was made out of fear of meds side effects.
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I've always been scared of medication so when biologics were first suggested to me in Belfast in 2011, I refused because I was too scared. It was the worst decision of my life as it led to me becoming unfit for work, running out of money and having to move back home (= Switzerland). 
I hope your new trial drug will work for you!!! It can be such a tiring time to find the right meds. I used to be on MTX alongside Simponi but had side effects until my rheumy switched me to Leflunomide, which doesn't give me bad side effects. xx
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