Yikes, this may be misconstrued as some do things which get lost in UK/US interpretation but IMO you're preaching to the converted. Most here would think who have inflammatory disease & lived with it for some time understand what does what & how some which were traditionally used & licenced for a different condition entirely can also be useful for autoimmune conditions. GP's in the UK are under obligation as part of the NHS directive to inform a patient of the drug being prescribed, whether they do or not is their decision but I would think most would wish their patient to be fully informed of the ins & outs of the meds we take, both my Primary & Secondary care doctors do me & would think I'm not alone.
Regarding pain relief, I'm treated dependant on the level of pain I'm experiencing, one of which is a controlled drug, or as you prefer to refer to them narcotic, & another originally an antidepressant so feel well placed to reply. The only drug type you mention I don't have experience of is biologics thankfully but judging from the members here who do have need of them they are informed why the need for them & the possible effects, positive & negative.
I'm pleased you understand & are doing your own studies, educating yourself according to your disease, it's suggested we all do if for whatever reason if it's not explained when any new med is prescribed, it can be very helpful to know what we're taking & what for. Hopefully newly diagnosed members will find your post helpful though & I would recommend that everyone reads the patient information leaflet of each new prescribed med too, as is suggested before we take our first dose, that way all bases are covered & any known intolerances can be reported before they're experienced.
It all helps towards greater understanding, it's just that some of us here have had the disease some time & done what you're doing now.
Please accept my apology for insulting anyone at all. It was not my intention to offend. In the USA we are subject to too much advertisements for prescription drugs and according to the commercial advertisements and posts in magazines the biologics promise to rid the body of pain and then you will see people actively moving about looking like they never suffered a day in their life which is so false and unfair to make people believe that they will be able to do such things like sitting on the grass playing tug o war with a strong dog. People expect to find that same thing and when the biologics fail to restore their bodies to pre damage state then people quit taking the drugs and switch up the drugs after such short trials. We do ask our doctors for prescriptions of certain drugs that we see advertised. Anyway, I forgot that our systems are running differently so I will kindly step back and listen to what everyone talks about on here to learn...
Maybe we will be in the same exact boat with Obamacare? The future looks like it will be a mess for Americans. If we are too poor to buy health insurance, the IRS fines us - quite a hefty fine. XX Karen
No need to apologise Karen & I for one didn't think it insulting, please don't think I'm shallow or unwilling to learn something new it's just from a longer term RD'er perspective you were stating the bl%&@#g obvious.
There's a considerable difference between our two countries regarding advertising. No prescription-only meds are allowed to be advertised & any OTC, herbal or "natural" ones have to adhere to strict guidelines re advertising whether on TV or written media. I've noticed since being here that many members in the US use alternative treatments alongside traditional meds & would think some of that is attributed to ads & differing thoughts of treatment from Rheumies. Also insurance, or lack of it if in trying circumstances must make such a difference. Here the costs of some of our meds are heavily subsidised, others we pay over the top for as we're charged per prescription though savings can be made by paying in advance if wished. Some illnesses receive free prescriptions, lifetime illness generally & a moot point with many of us here as we are required to pay for our meds, unless we have one of the long term health conditions then our RD meds are included & are free of charge, quite different to the US & other countries. No co-pay, which I've had experience of & know can get very costly.
So really not having a go just saying it's not something most of us here don't know, having lived with the disease some considerable time you learn along the way, you've learnt that, passed it on & I replied.
I must say though your view of your health system is pretty general though quite different from one of our other US members who has told us that everyone is informed & nothing is left undiscussed, I did think it a sweeping comment..... UK patients "lied to" I think was the term used. The choice of words may be unadvisable as it inferred our medical profession doesn't tell the truth, a difference of opinion of a class of med & couldn't or wouldn't accept that in the UK it's different so accused our medics as lying. Silly really but it just goes to show that one person's view of the healthcare system isn't necessarily another's.
I can't believe that the IRS fines you if you can't afford insurance, though I know the father of a friend of mine has fallen foul but didn't know the whole story, I've an idea now because he was struggling to pay for expensive treatement for his aged mother. Just when you need help you're expected to be able to pay a fine, because you can't afford insurance, you've little money right? Oh, by the way I don't mean you personally!!
So anyway don't you think you can't contribute whatever, that's the whole point, we all have a common bond, a reason for being here & differences of opinion will arise, it's not the law that we we all have to have the same opinion & your post will be helpful to the newer members here, I'm sure be along & they'll tell you so. x
I would add to this that many people here are already using the type of antidepressants which double up as pain relief. I myself have tried Amitriptyline, Gaberpentin and most recently Duloxetine/ Cymbalta. For me personally the price was rather high although Amitriptyline was my favourite drug for three years until it started causing severe heart palpitations. I would counsel you to take Duloxetine and Gaberpentin with eyes wide open because I found the former extremely hard to come off - and that was after only four months. They aren't addictive but do create similar kind of dependency to steroids and, like most powerful drugs, people who are offered them should do their research before agreeing to take them.
in reply to
With respect to what I said above, I dislike taking a drug that numbs the brain or puts us in brain fog so that's why I said "head drugs" - again, I didn't mean to insult anyone. There has got to be a better way to get pain control.
My studies are guided by medical professionals. It's not just me...
I didn't know where to look for more solid information to make
a decision about the drugs and that's why I chose to further my
education.. I know that it still doesn't qualify me to tell people drug
information like I did - they should read the package inserts and
rely on help from their own doctors and package inserts.
Titchytoes, if you don't mind my asking, what strength of Cymbalta were you taking? My rheumy just started me on Cymbalta, and it has helped the pain, but I hate to think of taking it if I will have trouble coming off it! My rheumy started me on 20 mg and said he would adjust up if needed, but I've had good pain relief with this small amount so won't ask for it to be upped. Is it like Gabepentin and need to be upped as your body adjusts to each level? I went off Gabepentin because it was REALLY messing with my memory and scared me. At my age of 58, I don't need anything else messing with my memory! LOL!
Please don't let my experience trouble you too much - Cymbalta must have been about the 15th drug since my RA began! I started at 20mg and made it up to 40mg after a few weeks. But bear in mind I hadn't been on any RA meds for 6 months by then. Was plagued by a tickly cough and around this time the nerve pain escalated, I started jaw clenching, had toothache and my nose sores and dry eyes intensified. And my GI issues got much worse.
Gp and neurologist were adamant that I needed this drug and that it wouldn't be causing these symptoms. But I came back down to 30mg and then back down to lowest dose 20mg. I weaned off by opening the capsules and emptying the contents a bit more each day having learnt the hard way that I had to withdraw slowly. I was on it for just over 4 months in all and as GP pointed out rather grimly - I've been pretty poorly ever since. Jaw clenching and nose bleeds weren't the fault of this drug. Not sure about stomach and tickly cough but I needed to come off it to find out.
If you google Duloxetine withdrawal you will learn more. But it's important to realise that all antidepressants carry the risk of withdrawal issues. This is what I was trying to say to Yikes re pain meds - but then all drugs have risks abd side effects. This one was definitely a drug I've tolerated relatively well and you may not need to come off it at all if it works well and you can tolerate it? I know of people who would scratch your eyes out sooner than give up their Cymbalta - not heard that about many other pain meds!
Whilst the biologics and standard DMARDs are not painkillers, they actually can reduce pain levels, sometimes significantly, by controlling the disease that is causing the pain. For some, particularly if they have damage to their joints, controlling the disease will not do enough to remove their pain and other approaches might be necessary.
I agree that it's very different in the US to here in the UK. When I was on holiday I found it really odd seeing adverts for biologic drugs, as here they do not advertise, because the people who go onto the drugs do so after meeting the criteria set out for biologics in the UK, so I can understand why the portrayals of patients in these adverts might make you uncomfortable.
Kind regards
Victoria
(NRAS)
Talking about steroids, another thing to keep in mind is that they can and do cause Osteoporosis when used in high doses over long periods of time. So preventative medicines have to be used. I take Adcal D3.
Steroids, biologics Dmards.... none of it is good for the body and that's why it carries such high risks. The rheumy gives us plenty of time to study and think about the next step before carrying out the plan. Steroids raise sugar levels for a week and blood pressure can rise plus they interfere with sleep. They work very well but the body pays a price. You are right to consider....
But conversely so does unmedicated RD! Nobody makes any decision to take any of the meds we need lightly or blindly without discussing the consequences I wouldn't have thought but the options, well they don't bear thinking of. I've gone into a big flare when I was waiting for a Rheumy to reinstate my meds. Within a month I was in such a state but all my GP could give me was pain relief & anti inflammatories nothing more.
When I was diagnosed I only had inflammation in my feet, only 4 years later without my meds every joint in my body was affected. This told me how I'd have been had I deferred starting on my mix of meds, probably in a wheelchair in a great deal of pain. I apologise to anyone who does need a wheelchair, I know there are some of you who have need, less fortunate to react as well to the meds or whichever reason. Yes, consider options but do be guided by what your Rheumy suggests, they don't have a crystal ball but they've a pretty good idea how the meds suggested will deal with our symptoms. We're checked regularly, bp, bloods, cholesterol, Vitamin levels if you have a Rheumy determined to help all he/she can. If there is any suggestion of our meds causing issues there are options but to not take them & risk damage to our vital organs isn't really an option I would prefer. You only have to look at the images available online of unmedicated RD, those people who didn't have the option of the drugs we have available to our Rheumys nowadays. My Nan had terribly deformed fingers & feet, I don't want mine to look like that, need surgery or indeed the pain so will do all that's possible to avoid that. Unfortunately I do have damage, disease activity is carrying on in my feet but I have accepted my Rheumys apology, an increase in MTX & monthly Podietry appointments to get them back to somewhere near acceptable but the bits which can't be "mended" will remain. Not pretty but at least they hurt less.
I'm not sure how long you've been diagnosed but once you find the meds which make you look & feel like a human being again you may understand why I'm pro meds.
I love that we are hitting on the feelings.... what thoughts go through our heads before we take medicines of this magnitude...the thoughts are more important than anything because l think that we struggle with the tradeoffs like should l and thinking that the treatment could potentially be worse than the disease after all, these are big gun drugs.
For a big gun disease. It can be terribly difficult to come to terms with that, especially if you've always had good health otherwise & not previously needed any specialist meds but need them we do if we're to tackle something which won't respond to OTC meds! It's a steep learning curve but once the shock of it all dies down commonsense eventually dawns, I accept help or I suffer, for the rest of my life. No contest!
Some of the best advice I received was from my first Consultant, I asked what would he do when he suggested a change of medication & of course he answered he would take what he was offering, well he would wouldn't he? The difference being he had RD & you wouldn't have known it. That in itself inspired me, this man travelled the world to speak at conferences, within Europe to the US & beyond, he held down a full time job, quite an important one being HOD but yet here he was sitting straight in his chair (unlike me at the time newly diagnosed with only having taken 3 months worth of meds) & of shall we say advancing years.
I think much depends on how much information your Rheumy gives you or you take from him, it's important to know the risks as well as the benefits & as long as you work with them & not against them the all should be well. Ok it'll chuck things in the way to test you but trust in your Rheumy & you'll not go far wrong.
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