I will have to say I was frightened when I was diagnosed but think I'm more freightened after reading the warning labels associated with the drugs we have to take to suppress it. I immediately got depressed when the first sentence said this drug has been known to cause fatal side effects! I'm like what the heck! This had to be the very first sentence! Everything can happen under the sun with the meds.
Let's see if you take this drug too long you might have a heart attack or stroke or if you take this drug too long you might get liver damage so we need to do labs every three months! Or we know you have RD but I'm going to put you on a drug but you might be bald eventually. Gosh geez....
Thanks for reading my vent today
26 Replies
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For me they go hand in hand.... trouble is we have to take them!!! Maybe we should learn not to read the potential side effects haha!!! Now with Google also!! I always tell people NOT to google symptoms, just wish I could follow my own advice
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Lol. I know what you mean. My doctor specially told me to stay off the internet but I can't. I gotta learn all I can about this disease.
Yes it's horrible isn't it, spend all our lives being told about making healthy lifestyle choices,eating well, exercising, avoiding pollution etc then what happens.......this! Suddenly we can't exercise properly ( well I can't yet anyway) and we take these drugs with horrible sounding potential side effects.
Of course we could look at it the other way around......
Don't take these drugs and you will likely be in miserable pain every day requiring increased pain killers etc ( also bad for us if taken too often)
Don't take these drugs and you will be in so much pain you won't be able to exercise and so your risk of heart disease/ stroke etc will increase.
Don't take these drugs and your quality of life could be severely affected. You may not be able to continue at work,with your social life or just enjoying your independence.
Don't take these drugs and it's likely this disease will cause irreparable damage to your joints causing severe pain and disability.
Etc etc......
I know some of us struggle still with pain and joint damage, but I believe these drugs make things a whole lot better than it would be without them. Not much of a choice I know but looks like once this disease has found us then we have to somehow try and live with it, drugs and all. X
Lol! Love your response. . I will gladly take the drugs daily. I've gotten a whole lot better with this disease in the short time I've been diagnosed. I thought my life was over a month ago. I feel totally different now!
I feel like I can go to the gym to do a yoga class now. I was doing hard core workout classes but I won't be anymore. I think my wrists are strong enough to do a down dog now! Lol.
Beaches is spot on. As your doctor says don't use the internet to learn more about the disease, or rather only use recognised related sites such as NRAS or Arthritis Care, depending which relates to your country & their guidelines for RD. If we read up on any drug necessary to control chronic diseases whichever you choose you'd frighten yourself half to death so best not to delve too much, unless a problem occurs. I know it's hard & knowledge is a good thing but not at the expense of worrying yourself! At the start of any new med your Rheumy should tell you all you need to be aware of or avoid when on that drug & if there's anything you're unsure of pop on here & no doubt someone will have experience if a new problem occurs. If we overthink things we'd just send ourselves batty.
Basically, if a drug helps you feel better taking it than not taking it it's a necessary drug! Better under control than out of control lol!!
Lol. In can't help it. How else will I spend my idle time!
But there is a bright side to the warning label though....."Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects"
I will say I'm not freightened anymore. The disease is what it is and I'm taking my meds regardless!
That's a really good attitude 1-min. The trouble sometimes is too many Rheumys expect us to know what is happening at a first appointment & then the need to search for what they should take time to explain becomes a necessity. I consciously didn't trawl the internet as I didn't want to muddle my mind as to what it could be or couldn't be but I was fortunate that I only had 2 weeks wait before diagnosis whatever it was. My GP, even though convinced it was RD told me the blood test was only the first step & would need further investigation to confirm so the way I thought was best for me was if I did I know for sure there was little I could do about it. I'm convinced I also benefited because when I did see my Consultant the first time he understood I knew nothing of what was happening or what I could expect & hadn't the first idea of what my body was going through. I just listened to his reassuring words & didn't feel it necessary to search for any further information & I was content that he gave me tablets to make me feel better & to slow down progression at what was a painful, fearful time.
We've had some alarming posts on here recently basically saying they've been left to their own devices & it's simply not good practice. It makes me feel so frustrated for them, having experienced excellent care when I was first diagnosed.
Someone said on another post that drugs manufacturers have to cover themselves for every eventuality in the world we live in now with litigation being so rife. That & of course not everyone reacts the same to meds so that has to be listed too in the form of side effects. The trouble is not everyone realises that & assume all those listed are going to happen or even convince themselves they're happening when in actuality they're not but fear of the unknown is a weird thing so maybe hardly surprising. That's where it all falls apart when there's a lack of communication & the necessity for those drugs to control our conditions so we don't end up like people used to when RD was treated with pain killers & resulted in gnarly fingers having had no access to the drugs we have today. Ok it may take a few mixes to find the ones that suit us & we may experience the side effects but medicine isn't a cut & dried one size fits all field but at least we have the options nowadays for our Rheumys to prescribe the drugs. We can only trust in those who are qualified to treat us otherwise we're lost aren't we?! And back searching the internet lol!!
I've ended up venting now. Blaming you - you started it!!!!
That's a great reply nmh......it's what I would like to say except I would end up rambling
I just think rheumy depts are so busy by the time they've told us of all the possible side effects, which they have to do, they don't have time left to properly explain the benefits and the possible consequences of not taking the drugs and so some people will be left with just all the negative stuff.
I worked in a rheumy hospital many years ago before these drugs were available........it was shocking! And some of the sights I saw are still with me all these years later.Think thats why I am just so relieved and grateful that even though these drugs cause us some concerns, at least we have some quality of life on them and hopefully avoid all that terrible joint destruction.
I am of the same mind set as you tried a few drug with negative results will only take pain killers now it would be ok if it was kill or cure but its kill or suffer with these drugs
I take a slightly different view on this having suffered some awful side effects to many drugs throughout my life. If you can tolerate drugs well then I think you probably owe it to yourself to stick with them. But for me, with my tolerance issues research into the causes and possible cures for autoimmune diseases is proving crucial,
I don't think doctors always do have our long term interests at heart or always weigh up the benefits to us. I believe some are very influenced by their budgets and effective marketing of products by big pharma sales reps. They don't have time to explore the possible nutritional aspects of our diet or encourage us to use exercise as a way of keeping RD in check. I do think there is probably an awful lot we can each do to help ourselves as well as or apart from taking the drugs we are offered. I do believe self management is key and that we shouldn't just accept that doctors know best. I certainly haven't avoided google and have learnt the hard way that I should read up about the drugs I'm being prescribed.
However I think pragmatism is important where drugs are concerned and as Nomoreheels once wisely pointed out, these drugs can prove to be a precious antidote for some although for me it's been fifty fifty between antidote and poison.
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I agree Twitchytoes. If the drugs work for you and you are coping well with them then stick with them but in my experience I think we should try to help ourselves as much as possible and learn what we can about our conditions.
I was intially sent to Rheumy by my GP as she thought I had fybromyalgia as bloods kept coming back normal RA. Already disabled with knee OA, my hands and feet started to swell and were painful and stiff and my flu like symptoms increasing. I was diagnosed in March 2014 with OA, sero neg RA and fybromyalgia and my first rheumy appointment was very confusing. After ultra sound on my hands and heels (which also showed ruptured achilles), I asked if I did have fybromyalgia and the consultant just said "Thats the least of your worries". I was given sulfasalazine told to have a blood test every 2 weeks and leaflet on this but had no explanation, other info or advise given me and I was so shocked and confused by the tests and her reply that I felt overwhelmed and didnt get to ask anything I should have. Since then I have tried and failed Sulfasalazine, MTX and at my last rheumy appointment have been given Hydro which I am still considering if I should take. Sure I get given a leaflet with the presciption telling me about side effects, but when I questioned if I decided not to take these strong drugs what would happen I was just told "thats up to you" I get the impression you either take the drugs or you are on your own. I have also looked up as much as possible and grabbed leaflets where I can but only because I have not been told enough by the rheumy dept about what these conditions mean to my future or what my options are. When I do question anything I am made to feel like my question is dismissed and dont get answered. Last week I asked if there is a link with hypothyroidism and fybromyalgia as I have read a book about this and the natural ways to help living with this condition and other inflammatory diseases. It was just to see if what I had read was the answer to helping me or even ever considered by consultants. The consultant checked my glands said that they were a little swollen but my last blood test didnt show anything wrong with thyroid (my last blood test was for inflammation not for thryoid!) my question was brushed over and a prescription for hydro given "see you in 12 weeks". Sorry for going on but I do feel I am not being listened to. I think also because I am overweight (despite eating healthily) they see fat before they see a person with feelings, pain,fatigue, brain fog,etc, etc. I will see my GP again next week to see what she thinks.
Gentle hugs
Joolz.
Really well said Twitchy, I'm in 100% agreement with you in that I don't think doctors always have our best interests at heart, I've had a problem recently with my ears and even though I've been referred to a ENT they just seem keen to keep chucking pills at me..one particular drug I was described has an interaction with another drug I'm taking but they didn't tell me this it was only after googling and reading the instruction leaflet I found this out. I agree with you also that it is a case of self management especially with a chronic health condition, I know I shouldn't google symptoms but done with some intelligence....mmm I say some haha...it is of great benefit.
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My GP is very pragmatic about drugs with me now as I've even ended up overnight in hospital because of one drug he prescribed. It is all a balancing act and I think each person has their own unique presentation of RD and their own unique response to drugs. Rheumatology and immunology are very complex areas of science and we shouldn't expect our doctors to have all the answers.
I have a lot of faith in both my GPs but they have made errors of judgement sometimes because they are just human. I trust them to an extent but I know that they have to balance their books and can't predict how this disease is going to evolve for me.
I also realise that some people like Metal-Legs here take the drugs because it is absolutely the only way they can remotely function - but equally some can't function if they take the drugs because their bodies reject them. Even if you are crippled with awful pain you can't take drugs if they give you anaphylactic shock for example.
It is therefore very important not to judge others for taking or not taking the drugs we are offered. We all come across people who make us feel bad for what we take or bad for what we won't take. I resolved a while ago never to listen to anyone else but myself regarding what I'm prepared to suffer or subject myself to for my RD and this has empowerd me a lot. Also we learn a lot from what others go through with their disease and their responses to drugs and I have learnt to trust my I instincts about drugs now rather than putting all my faith in my rheumy.
For example initially I was put on Sulfasalazine by my GP and neither he nor the pharmacist explained that I might have side effects so I just assumed I wouldn't. After a few weeks my neck swelled up and my ears became very painful but I didn't even make the connection with Sulfa because I was determined to get on top of the pain. Then I had a sunlight reaction that was so severe it took me to A&E in the middle of the night and they saw my neck and ears and purple rash everywhere and told me to stop Sulfa immediately and I had a cortisone shot there and then. If I had been given a side effect sheet and advised to read it I might have been more quick off the mark with my response and not have this light sensitive response often as I have done ever since.
Without these life changing drugs I am unable to get out of bed, feed myself, and I am reliant on 24hrs care. This disease has a 7 course buffet on my joints without the drugs. I am willing to take the risk of side effects, even if it means I have a shorter life. I self manage as much as possible but the drugs are the key to having a life with this disease.
to put it in perspective, paracetamol has been known to be fatal, aspirin has been known to be fatal, NSAIDs have been known to cause severe (and potentially fatal) allergic reactions, and eating some food (by some people who happen to be allergic) has been known to be fatal.
I personally don't know why they seem to put more weight on the potential side effects of some of these meds than they do on some of the over the counter meds, but just remember its primarily about drug companies covering their backs. Yes, you do need to know that there is a small risk, but remember that for any medication to be licenced for use in the UK, it goes through a fairly stringent assessment of risk vs benefit, and benefit has to win out for it to be licenced. Beyond that, you are still free to make your own assessment of risk vs benefit, but make sure you do think of the benefits as well as just the risks. It isn't a one-sided decision..
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