Drugs: side effects and why?

[Nettac]

Why is it some folks can take numerous types of drugs, and experience no side effects at all. Whilst some of us experience awful side effects?

I seem to have an appalling time with drugs. So much so, that I am now deeply suspicious of anything I'm given.

I had a steroid shot into my butt about a week ago. All fine with that, apart from some mood issues, and a slight increase in pain for a day or two. I actually fibd steroids hugely helpful. The stiffness goes almost immediately, so too joint issues. Grateful for that...and thank you very much!

It doesn't help much with tendon and ligament pain. My knee and Achilles have been given me stick, so doc gave me a cox 2 inhibitor (arcoxia). Never again. I thought I was dying!

I took it for three days and felt terrible. Chest pain, and severe stomach pain. I felt totally wiped out. As for my mood...it was best to stay well clear!

No more Cox 2 drugs for me thanks! It's frustrating.

[helixhelix]

It's bizarre isn't it? Fingers crossed, but I've had no significant problems once I've had a few weeks/months to adjust to a drug and I'm on loads of different ones now.

My instinct is that genetics play a large part in this, so thanks Mum & Dad for this..... I seem to have a metabolism that can process them easily, and a stomach lining that resists them reasonably well. For me also improving my lifestyle seems to have helped and even if it does nothing for the RA symptoms (which it doesn't) I feel it helps me tolerate the drugs. And it helps keep me reasonably fit, I think if you are frailer and have other diseases it doesn't help. Altho' some super fit people struggle too of course.

Mental attitude is also a factor for some. It's been shown that there's a powerful 'nocebo' effect where if you think something will give you side effects then it does. And this is as effective as the placebo effect which does the reverse.

I'm not at all suspicious of drugs, and when first prescribed MTX I was concerned about it being such a potentially toxic drug, but I was so desperate for something that would help that I was quite positive about it. So I do think that helps too. My rheumy nurse once said to me that in her 20 years experience she found that people who were positive did better.

The other curious thing to me is that although I only have minimal side effects that wear off, I have exactly the same when I've tried some of the more powerful supplements etc. But a lot of people seem to have side effects with prescribed drugs, but never say they struggle equally with herbal remedies or supplements? Now why is that as some are equally abrasive on stomach lining or hard for the liver to process, like St. John's wort?

[Nettac in reply to helixhelix]

It's a flipping mystery! Really glad that you feel fine on your drugs.

I wasn't at all suspicious until I experienced some life threatening side effects. When I first saw rheumatologist, I was absolutely desperate for something (anything!) To stop the pain. Would have taken crack if she would have said it helped!

I was so grateful for the steroid shot and the prescription for sulfasalazine. I though finally..no more pain. Unfortunately I had such a severe reaction to the sulfa drug I had to stop.

In general, I'm a pretty positive person. I do loads of dog walking and swimming, and also stuff in the community. Sadly, I seem to react to all types of drugs (not just those for PsA). I wish it wasn't so.

I do also think that drug side effects are often down played, or ignored by docs. Not helpful.

[helixhelix in reply to Nettac]

Yes I am so thankful that I can tolerate them, and feel for all of you that can't (and feel a bit guilty about it too...)

But at least steroids help you, some people don't even respond well to them either.

Maybe one day there will be a way to test people in advance to know what will suit them best. It would be good.

[Nettac in reply to Nettac]

Can't touch St Johns Wort!

[Hidden in reply to Nettac]

I agree. There is nothing more terrifying than swallowing a pill and then thinking OMG what is happening to me and there being no help. I also found that i kept getting a diluted form of the original response - rash on trunk and feeling of intense heat for a few weeks after. Scary and unpleasant.

[Hidden in reply to helixhelix]

I don't think mental attitude has anything to do with genuine side effects. I have had recent side effects from penicillin which were not anticipated as with plasters and I was fairly optimistic about the first dmard I tried. I am also hugely allergic to iodine. A dentist put some on a swab for a dry socket and luckily I spit the swab out but I lost about 5lbs in weight over night and had bright orange stools for days. ( Sorry probably a bit too much info there.) Having a positive mental attitude would not have prevented the effects on my body. I do get what you are saying with regard to minor aches and pains though. The mind is very powerful, particularly with regard to pain.

[helixhelix in reply to Hidden]

When is a side effect genuine & when isn't it? To me they are all genuine reactions whether brought on by some physical reaction or by the power of your brain. It doesn't diminish the awfulness of your experience, and as for allergies they are the worst.

There have been trials where people have reported significant side effects such as nausea/vomiting even without being given the actual drug.

[Hidden in reply to helixhelix]

Agree absolutely. If something is psychological it is still real. But if it is not psychological and is physical then a positive mental attitude will not prevent it.

[helixhelix in reply to Hidden]

Oh, I see what you mean now! No happy thoughts will stop something like an allergic response of course, but i do think it does have a role to play for less severe reactions.

[Hidden in reply to helixhelix]

Hi, yes I agree. For me it's trying to determine the origin of the pain or sickness or whatever. I sometimes get chest/ rib pain and it scares me because both my parents died of heart related things. Had something like this yesterday and the pain was persistent and very real but took my mind off the pain with a gentle trip around Waitrose so I began to focus on other things and the pain went. It was tension made worse by me worrying about it.

[Nettac]

Bless you...no need to feel guilty. Isn't your fault! I'm genuinely pleased for you.

[Fennella02]

I said this exact same thing to my GP last week! The sensitivities these days are ridiculous and not at all anticipated/pre-empted. Things that are administered via a needle are invariably problematic - penicillin, tetanus, flu vacs, Hep A, blood transfusions, dental anaesthesia, Iloprost infusions and iron infusions. Doxycycline and St Johns Wort cause disabling peripheral neuropathy. The most recent was a ghastly reaction to a new inhaler which left me very very unwell. The drug effects are equally as bad (if not worse) as the auto-immunity that they are taken for! If I listed all of these to my doctors, there would be a fair bit of eye rolling so I play it down but it's time for my flu vac and I just don't feel brave enough . . .

[Nettac]

Pants isn't it.

Mind you, I had no problem with the flu jab.

[Hidden]

I am not sure but I too, have had enough horrible reactions to make me petrified of dmards. I notice that I react quite strongly to a lot of things now and feel it is all part of my immune system over reacting. That could be the case for you too ?

[Nettac in reply to Hidden]

I did wonder about that. Also suddenly had terrible reaction to a wasp sting. Swelled up like a hot air balloon!

[Nettac in reply to Nettac]

Also suddenly became allergic to certain personal care products...shampoos skin creams etc. Previously always been fine!

[food-lover in reply to Hidden]

I have had the same thought and having no problems in my younger years to reacting quite seriously to some meds. In the last ten years. I think maybe things just catch up eventually. Previously I have been fine with antibiotics until I was given a high dose for a particular infection. Since then I have had dramatic reactions to the same drugs and now prefer to be in pain than take them again.

[Hidden in reply to food-lover]

I don't take drugs either. My arthritis was downgraded from very aggressive to moderately active based on some blood tests last year. Mind you I had just been on some antibiotics for a UTI and I always find antibiotics help my arthritis. Had I been on methotrexate the hospital would, I have no doubt, credited the improvement to that. I in no way advocate anyone doing what I am doing as I know there are dangers but I am slowly improving with a healthy diet and lots of rest in addition to gradually trying to move a little more bit by bit. I cannot be sure but fresh garlic seems to be helping me quite a bit. It's a rubbish thing really this chronic disease but two good things have come from it; a real appreciation for the small things in life- even if that is just the feel of the sun on my face and although this has been really tough I know who gives a damn about me and who plainly does not give a shit. ( apologies for swearing) . Although it can be very hurtful realising some people really don't care about you I know who does and I really value them.

[Hidden]

Oh dear. Something else to be wary of. Hope it went down without too much trouble. My mum used to swell up like a balloon on wasp stings making her terrified of them. Yes it's funny you say that sinceI have had this diagnosis I have been wary of wasps too. My mum had RA but not as badly as I do and I remember now she could also not take steroids.I genuinely feel my immune system is on the alert now. Having time to think about it as well I am aware of how there were so many things my mum could not tolerate such as penicillin ( which I now can't take but have been ok with all my life) my son over reacts to heat and exercise and sweats loads in those conditions. he has had his thyroid checked and he is just one of those 3% so just has to take shower more and take a change of clothes if in hot places. So I feel there is a genetic component. Not moaning though - could be worse - it really could.

[Nettac]

Yes there's probably a genetic link. My son had an awful reaction to an antibiotic.

[Nettac]

I suppose the more chemicals one takes into the body, the higher the risk of developing a reaction. Certainly at risk of drug to drug interactions.

[Hidden]

Yes I think so. I don't know but I was also wondering if once your body starts reacting if it then has a tendency to continue in that way. I have been fine with penicillin all my life until recently. The same with plasters.

[Nettac in reply to Hidden]

Friendly fire!

[Hidden]

haha yes that's about right.

[Downtime]

I was given Meloxicam by the rheumy's sidekick once. Took it for 2 days that was enough. Stomach pain, bowel issues and seriously acid gut. Never again, but I'm ok on most other things.

[ITYFIALMCTT]

"Ibuprofen 1200mg/day lipid formulation was non-inferior to standard ibuprofen soft-gel capsules 1200mg and 2400mg/day in relieving flaring knee pain. NRS endpoints showed lipid 1200mg was numerically similar to soft-gel 2400mg."

Bierma-Zeinstra SM, Brew J, Stoner K, Wilson R, Kilbourn A, Conaghan PG. A New Lipid Formulation Of Low Dose Ibuprofen Shows Non-Inferiority To High Dose Standard Ibuprofen: The Flare Study (Flaring Arthralgia Relief Evaluation In Episodic Flaring Knee Pain) - A Randomised Double-Blind Study..

eprints.whiterose.ac.uk/120...

I don't know when it will be available but I'm interested because I don't respond well to NSAIDs (gut, eye, and tinnitus problems). I wonder if something like this formulation would allow me to take a relatively low dose with a reduced risk of the usual effects for me?

It will be helpful if there are several trials in the pipeline about optional formulations for drugs known to be helpful but are accompanied by side-effects that tilt the risk:benefit ratio away from their use.

[helenlw7]

What gets me about meds is that I'm taking more meds to counteract the side effects of the original meds!

[AV57]

Sorry you had a horrid experience. I have learnt that I can only take the original i.e best quality versions of drugs, the cheap versions made me ill. For example I needed proper Epilim (sodium valproate), and the cheap anti anxiety / depression drugs made me very suicidal. I take Escitalopram now at £16 a box rather than the cheap version at £1.75 a box. I have had other tgerapy too, but put my latest leap in wellness down to dietary change to a keto diet.