Meds side effects

SusiM

I was wondering how many of you have experienced side effects with meds and if so what kind and did they subside? I'm experiencing nausea with plaquenil which isn't uncommon. I'm afraid of the side effects of other meds as on in bad shape at the moment and don't think l can tolerate much more. If the rheumatologist puts me on another med is there any chance l will experience little to no side effects?

stickywicket

I understand your worries. Starting new meds can be scary especially as our powerful disease requires equally, if not more, powerful meds to combat it. And I know you feel a bit ambivalent about whether or not you actually have an autoimmune arthritis given your low inflammatory markers. I think you just have to trust your rheumatologist's expertise on that one. But, as you have an appointment coming up, why not mention your doubts and ask how secure the diagnosis is, explaining your problems with plaquenil and fears about other DMARDS.

Having said that, there is absolutely no suggestion that side effects on one will translate into side effects on all. They work differently. If we have an underlying weakness there is always a chance that another med will also exploit that weakness but no guarantee. Nor it is certain that interactions will happen even when the drug leaflet says they might. The plaquenil one cautions against interactions with BP meds (which I take), arthritis meds (Plaquenil is usually prescribed alongside methotrexate - which I also take), stomach acid reducers (which I take) and antibiotics (which I have taken in large quantities at times). I have no problems with plaquenil.

We start each new med with a clean sheet and a lot of hope. I hope that, if you are given a different one, it will help you but the fact that it didn't help others or that they got (a) (b) and (c) side effects is unlikely to be of any relevance to you.

If you want reliable info on any drug this is a good, reliable site. https://www.drugs.com/hydroxychloroquine.html

dreamdaisy

I've had side effects, I've stopped the med and they have gone away. The one time I was experiencing a potentially serious side-effect I felt perfectly well, it was the bloods that picked it up.

I am doing well on my current meds because my disease activity is controlled: I was struggling to adjust to the new version of my anti-TNF but even that is passing. I am in pain and will be in pain, I suppose that is a side-effect but if so it's one from the disease, and as that ain't going nowhere I'm lumbered. That leaves me with a choice: make the best of things or moan moan moan. I prefer the former. DD

SusiM

Thanks ladies. How many DMARDs are there? The thing is l already have 24/7 flu-like symptoms, dizziness plus the arthritic pain. I don't think l can stand much more sickness but l also want to be on something to get this disease under control. I have a feeling the rheumatologist is going to suggest another DMard and yeh l don't think l can take much more.

stickywicket

If your problems are due to the plaquenil then stopping it for, say, methotrexate or sulfasalazine (the two most popular starting DMARDS) should get rid of them. See what your rheumatologist suggests.

dreamdaisy

I have tried only four DMARDs (there are more over here but I've not had them) and the 'flu-like feeling you are experiencing is very likely disease activity (but I don't know because I am not a doc).

On Say Hello you asked a newbie what 'pip' stands for: as many newbies never bother posting again I'll tell you It stands for Personal Independence Payment (PIP) and is a social benefit paid by the government to those who encounter extra living expenses due to their disability. DD

SusiM

DD did those meds give you side effects? If so were they unbearable ones?

dreamdaisy

Sulphasalazine made me bruise very easily or spontaneously but oddly only from the waist down. I wasn't bothered by this as my bloods were fine and it ease after six weeks. Tablet meth was added.

Tablet methotrexate gave me a rash on my forearms which, after years of severe eczema, I barely noticed. My rheumatologist did tho and that was stopped immediately a week before a beer festival. I gave the loudest cheer of joy rheumatology has ever heard - probably its only one.

I kept on with the sulph and tablet leflunomide was begun. That led to cracking headaches which incapacitated me: I struggled on for some time in case, like the sulph bruising, they eased but they didn't so that was stopped and cyclosporine added.

Rather than tackle the arthritis this made me hairy - luckily being a natural blonde it wasn't that noticeable but The Spouse would let rip with werewolf howls when the light (natural or otherwise) hit me at certain angles. I wasn't bothered as it didn't hurt but again my rheumatologist decided this was not a good sign and decided it was time for the biologics. In those days one had to fail at least three DMARDs, fail meaning they were not reducing disease activity, so then the big boys came out to play.

Of those it was enbrel that caused the most danger as it tried to explode my liver - my LFT went from around 75 to 320 in a week. I was on holiday, feeling perfectly well, when I was instructed to go for an emergency blood test at the local docs. There it was discovered the figures had doubled again, I think they finally ended up in the low thousands but I felt absolutely fine. I stopped the med and all returned to normal.

There's no doubt that one has to become somewhat stoical when dealing with not only the disease but also with the meds that treat it. I have always - and will always - assume that a med is not going to be a bother and wait to be proved wrong rather than assume I'll get every side effect going and wait to prove myself right. I read the leaflet only when something I cannot explain begins,
such as massive bruising, rancid headaches which don't go away and hairy breasts :shock: and then I usually find an explanation. I have a supreme advantage over you in that good health has never featured, that my life has always been compromised and it can never be anything else, especially now. Incurable disease my a#@e, just more of the same is all but for you it is very different. DD

pinkteapot

I have learnt the hard way to stay off Google when starting a new med...

Last summer they tried my on my first DMARD, Sulfasalazine. I thought it'd be absolutely fine but I felt awful from the off. Headaches, extreme fogginess (really struggled at work), very low mood and lots of tears. After three weeks I developed a high fever for no reason that lasted four days and a slight rash. At that point I called it quits even though the hospital wanted me to stay on it!

I've since moved house and am at a new hospital. When I saw my new consultant and described my Sulfa side effects, he wrote down that I'm allergic to it!?

Anyway, he started me on Methotrexate. I'd been resisting it for a couple of years because hubby and I had been trying for a baby, but it had got to the point where my age meant the odds of conceiving were very low, and my arthritis had worsened and couldn't really be left untreated any more.

I was TERRIFIED of taking it. I googled and wound myself up terribly with all the horror stories about side effects. I ended up having panic attacks on the day I had to take my first dose, and really had to force myself to do it.

8 weeks on and it's really not that bad! I've increased dose gradually to the dose the consultant wants me on. I feel a bit tired for the two days after I take it, so I take it Sunday nights so it doesn't ruin my weekend! (I work Mon-Fri). Some weeks I've had slight nausea but it's been mild. The side effects were worst in the first week, then in the first week after each dose increase. They're still settling after increasing to the final dose but are dying down. At least with MTX being weekly I have five days a week of feeling normal. Sulfa was a daily dose so the side effects were permanent.

Anyway, my message would be - everyone is different. Everyone reacts differently. A drug that's fine for lots of people might be a disaster for you. One everyone else hates might work. Sadly the only way to find out is to try them, but don't assume that one most other people seem to hate won't work for you.

Depending on your consultant, you might need to be quite assertive/outspoken if you're not happy on a drug. As I said, my previous hospital wanted me to push on with Sulfa when it was having a terrible effect on me. It was far, far worse than the arthritis! If that's you on Plaquenil, speak up because there are alternatives. My new hospital seem like they'll listen and are much happier to switch drugs.

dreamdaisy

I forgot to say two things.

1. All the meds I have tried have specified very long lists of potential side-effects and on every occasion my body opted for a common one: this old bird lacks class. :roll:

2. I have never researched any of my medications on-line because I am not a doc, a specialist or a pharmacist. I know enough to realise that I don't know enough about the ins-and-outs of the meds, the fact that some overlap in treating other conditions doesn't bother me. Yes, methotrexate is used in chemotherapy but a) more cancers are becoming curable unlike my disease and b) there's a huge difference between 15ml in sub- cut injections and 1000ml injected into the spine.

The meth and humira / imraldi combo is working for me in that disease activity is under control (or latterly nearly under control) but I am still in pain, still tired, still fed up from time to time because it does grind one down. DD

SusiM

Pinktepot - thanks you've given me something to think about because lm also terrified of trying new DMARDs and like you said l shouldn't be. I'm only trialling them and if they're terrible then l just stop. I can't believe the doctor's wanted you to persist with something that was clearly not for you. The mind boggles sometimes when l hear the stuff doctor's expect. I will try to keep an open mind about this and not expect the worst.

DD- lm definitely a 'googler'. I like to know as much about a drug as possible but maybe it doesn't serve me well. I'd feel much better if l didn't know about all the awful side effects. Bruises and rashes don't bother me but cracking headaches do. I stopped the plaquenil to see if it's causing any of my symptoms and the nausea has subsided. At least l know now it's not the culprit for anything else lm experiencing so l will resume taking it. My problem is I'll never know if a med is working because my bloods are near normal. I thought if l was in pain that meant it wasn't working. I have a lot to learn.

stickywicket

I think the reason why the docs try to get us to persist is because (a) initial symptoms often die down given time and (b)the starting meds are the tried and tested ones. That's not to say biologics aren't but the longer meds have been on the market the more is known about their advantages and disadvantages.

I think having info about a drug is good as long as it's reliable info. You have to know your sites. The info given here on the top menu is reliable as is any given by NHS and drugs.com. If you are looking at forums such as this one then the 'info' is not particularly reliable because, as I think we've said, people don't go on forums to say how wonderful a drug is and how they've got their life back. The go on for help when things are tough and to worry about side effects. There's no balance. So, if you look mainly at anecdotal stuff, you'll get a totally skewed view of things. A bit like just asking the losing team what the ball game was like.

Also, we each bring to what we read or experience our own prejudices. You say you worry about headaches (a sensible concern until high BP has been ruled out) but not bruises and rashes. I don't want to alarm you further but I was taken off gold injections because the rash they gave me indicated that they were damaging my kidneys. Excessive bruising can mean a danger of bleeding. This is why we, with our very limited knowledge, shouldn't do the interpreting but should leave it to those with years of medical training.

I think, if people get on DMARDS very quickly, they can be painfree or virtually painfree. Look at the international golfer Phil Mickleson! But the longer it takes to get the disease under control the less likely we are to experience painfree. For me, the last painfree experience was 1970 during my first pregnancy. It felt wonderful, like walking on air, as if gravity was suspended. I never quite got used to it though I loved it. Then he was born. Big mistake

SusieM, I notice you are very kindly responding to newbies so I wonder if you'd be prepared to do VA a favour. If you look at Airwave's thread about 'Sticky for the top of the page', Mod Brynmor has asked “New board members: what do you think would be the best way to signpost things that regularly appear on the forums? “ I think it'd be really helpful to have a fresh pair of eyes on this topic. Don't worry if you feel you can't but, if you can, that'd be great.

dreamdaisy

Sticky, Phil Mickelson didn't faff about with piddly DMARDs, he went straight on to humira. It's handy being filthy rich.

I was watching Wimbledon yesterday and heard that Caroline Wosniaki has been diagnosed with RA. It's not stopping her playing tennis which makes me wonder if she's straight on the big guns too. Must be nice. :roll: Then there's Venus with lupus: I wonder if being both super-fit and super-rich makes the difference compared to us lesser mortals? DD

stickywicket

I'm sure it must. I do feel for sportspeople and others who have their work and dreams snatched from them. But, yes, money does equal power.

Actually, Mickelson went onto enbrel straight away but I'm still trying to work out how anyone can wake up one day virtually unable to get out of bed but then, still unmedicated, come 4th in the US Open two days later. He then saw a rheumatologist and, yes, was instantly put on enbrel. It's all unravelling a bit now though.

Venus Williams has Sjogrens not lupus. Probably not quite as debilitating but, equally probably, on meds which the NHS could never afford to prescribe routinely. I don't think either she or Wozniacki have ever said which meds they're on. It does make me wonder why not.

dreamdaisy

Oh, I am sorry: I could have sworn it was humira but the point is straight onto the anti-TNFs is an option for those with deep pockets and private doctors. And yes, I was muddled with Venus - at the moment I get very easily muddled. :roll: I apologise, Sticky. I'm off to lust at Roger Federer's back hand, a thing of beauty, class, elegance, poise and single-handed to boot. DD

stickywicket

dreamdaisy wrote:

I'm off to lust at Roger Federer's back hand, a thing of beauty, class, elegance, poise and single-handed to boot. DD

Ah, his back hand. Silly me

SusiM

Sure l will check it out but what do you mean exactly by signpost things?

[ quote=stickywicket post_id=656721 time=1562062213 user_id=15071]
I think the reason why the docs try to get us to persist is because (a) initial symptoms often die down given time and (b)the starting meds are the tried and tested ones. That's not to say biologics aren't but the longer meds have been on the market the more is known about their advantages and disadvantages.

I think having info about a drug is good as long as it's reliable info. You have to know your sites. The info given here on the top menu is reliable as is any given by NHS and drugs.com. If you are looking at forums such as this one then the 'info' is not particularly reliable because, as I think we've said, people don't go on forums to say how wonderful a drug is and how they've got their life back. The go on for help when things are tough and to worry about side effects. There's no balance. So, if you look mainly at anecdotal stuff, you'll get a totally skewed view of things. A bit like just asking the losing team what the ball game was like.

Also, we each bring to what we read or experience our own prejudices. You say you worry about headaches (a sensible concern until high BP has been ruled out) but not bruises and rashes. I don't want to alarm you further but I was taken off gold injections because the rash they gave me indicated that they were damaging my kidneys. Excessive bruising can mean a danger of bleeding. This is why we, with our very limited knowledge, shouldn't do the interpreting but should leave it to those with years of medical training.

I think, if people get on DMARDS very quickly, they can be painfree or virtually painfree. Look at the international golfer Phil Mickleson! But the longer it takes to get the disease under control the less likely we are to experience painfree. For me, the last painfree experience was 1970 during my first pregnancy. It felt wonderful, like walking on air, as if gravity was suspended. I never quite got used to it though I loved it. Then he was born. Big mistake

SusieM, I notice you are very kindly responding to newbies so I wonder if you'd be prepared to do VA a favour. If you look at Airwave's thread about 'Sticky for the top of the page', Mod Brynmor has asked “New board members: what do you think would be the best way to signpost things that regularly appear on the forums? “ I think it'd be really helpful to have a fresh pair of eyes on this topic. Don't worry if you feel you can't but, if you can, that'd be great.
[/quote]

SusiM

SW and DD aren't one of you on humira? How does Enbel and humira compare to DMARDs and how do you get on them if you've got no money :P
Thanks for your knowledge and reassurance on this subject.
Can l ask does anyone else experience poor circulation? And someone mentioned they think the Revitiv is rubbish (think it was DD) What makes you think that? It's sure darn expensive.

SusiM

SW l just read the post you were referring to and l follow now. Sorry l should have checked it before l asked you to clarify. I will reply on the post.

dreamdaisy

I am the one taking humira (recently changed to cheaper version called imraldi) and it's the next step in medication, it is in the anti-TNF class of drugs. I know it is said to increase one's risk of starting a cancer (I cannot remember if all the anti-TNFs carry that risk) and is phenomenally expensive. By changing from humira to the bio-similar, imraldi, the NHS has saved hundreds of millions of pounds. I know there are people in the US who have to go without their medications for RA due to cost,we are blessed in the UK by having the NHS but this can also make us blissfully unaware of how much these meds actually cost. I wouldn't be at all surprised if I have cost the NHS over a million, so far, in keeping me alive. It must be because I'm worth it. :roll:

Revitiv does nothing more than twitch one's muscles, something one can do for oneself far more cheaply and effectively by walking and doing leg exercises. Keeping mobile (no matter how painful) is essential for whole body health. To improve circulation one needs to move the whole body, not just pass electrical stimulation through the lower leg muscles. In my view Revitiv is for the lazy worried well, in the same way that a Slendertone is for the lazy overweight. Both are advertised by people who don't need them but they sell the promise that you too could be like them. I suppose it works in a similar way to a TENs pain relief machine which will reduce one's perception of pain by causing another one (I hated the sensation and found it useless as a pain relief method). The latest ad for Revitiv over here has Sir Ian Botham proclaiming his pharmacy put him on to it, as far as I am concerned that is merely advertising bull. People will fall for it though, they always do and within six months their Revitiv will be in a cupboard, gathering dust with the juicer, the Nutribullet, the magnetic pain relief gizmo (banish arthritis pain now!) and all the other JML tat we can gather under the pretext of making our lives better / easier. For the price of one Revitiv I can buy 600 USB chargeable solar lights which twinkle for hours, even in the depths of winter, which give great pleasure.

As far as I know my circulation is OK - I have high blood pressure thanks to the humira (I forgot that, sorry, as it doesn't hurt it doesn't bother me) but I probably would have gotten that at some point any way as I got older. My BP meds control it very well and I do my big with walking and exercise. I am now 60, been arthritic since I was 37 so am practised in the ways of being old before my time. I also forgot (see? getting older) that the sulph gave me tinnitus which is still present despite stopping the med a few years ago now. It doesn't hurt yadda yadda yadda. DD

stickywicket

First of all thanks for your very valuable input on the other thread. And please don't think we don't want to talk to you! It's just, sometimes, hard to sound fresh on issues we've dealt with so many times. I worry that we might sometimes be offhand and off-putting.

Circulation issues? Nope, I don't think there's an arthritis connection there except insofar as we are not as active as we might otherwise be so that might usher in circulation problems, especially in smokers. But, on the whole, it's not a topic that crops up much on here.

I've never heard of the machine you mention but, having read the description, I recall going to the gym once and being advised that, as I have RA (and joint replacements) I shouldn't spend more than 5 minutes on a similar type of equipment.

As for biologics / anti-TNFs, we only get on them when the rheumatologists deem them necessary. It used to be that we had to fail on three DMARDS first. I think that's now waived sometimes for those with very aggressive disease but, personally, I've never had them and never needed them.

pinkteapot

DD - 100% agree re the choices of the wealthy... Mr Teapot and I had been trying to conceive for several years and had to stop when I went on meth. Distressingly, some of the more advanced treatments are safe to take when trying for a baby, and some have even been experimented with in infertility treatment so might have helped! But, as I'm treated on the NHS, there was no option to skip meth and try those so we had to face the fact we wouldn't have a child. I held out as long as I could but got to a point where I couldn't leave my arthritis untreated any more.

This isn't a criticism of the NHS - I'm an absolutely staunch supporter and would probably be bankrupt if I lived in the US. I understand completely that we have to try the cheaper drugs first. Doesn't stop it hurting though.

(Sorry SusiM - this is nothing to do with your question!)

dreamdaisy

My parents had no idea about what they were passing on, both having dodged the genetic bullets that ran in both families. I was born in 1959 and as it's turned out I've copped the lot. A childhood wrecked with eczema and asthma courtesy of mum (no steroid creams or inhalers in those days ) and now the PsA courtesy of dad. They got what they wanted though so were happy.

I decided aged 16 not to have children after a GP cheerfully explained that my children might be OK, any grandchildren probably not but at least the meds would be there and probably better by then. And that makes it an OK choice? For me it was a no-brainer, I knew what the risk was and decided it was not the responsible choice. DD