Possible side effects for prescription drugs - Poorly worded side effects

25
Edited by:"OllieSt"Found 3rd Aug 2017
I've been a long term user of anti inflammatory and painkiller drugs.

I now pretty much committed to try a new kind of drug for me and it's side effects concern me. They are listed as follows


  • Very common (may affect more than 1 in 10 people)
  • Common (may effect up to 1 in 10 people)
  • Uncommon (may effect up to 1 in 100 people)
  • Rare (may effect up to 1 in 1000 people)


My concern is in the common (may effect up to 1 in 10 people). In that table are the following amongst many others:

  • Serious infections (including blood poisoning and influenza)
  • Skin infections (including cellulitis and shingles)
  • Benign tumours
  • Skin cancer
  • Vertigo
  • High blood pressure


I know that the side of a packet of aspirin will say what can be the worst thing that could happen to you, but my concern is that I don't get straightforward answers to straightforward questions from specialists or my doctor.

I keep on getting thrown at me that skin cancer is UP TO 1 in 10 people, but when I say that it's not been put into the uncommon (up to 1 in 100 people) it seems to fall on deaf ears.

I personally think the labelling of effects in categories of UP TO is very poor and doesn't really allow me to make a proper decision.

The drug concerned is Humira, an anti TNF drug which basically reduces my bodies immune system, hopefully preventing my body from continuing to attack itself, whilst leaving me open to the possibility of some nasty side effects.

I pretty much get on with my life taking heavy painkillers (Tramadol 200) and anti inflammatory tablets (Naproxen) but sometimes it's too much. I just cant help feel like I'm being asked to start smoking cigarettes to give me some relief with my normal pain.

I would really appreciate any feedback

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25 Comments

All i can say is, do as much research as you can, read up on the drugs being offered and any alternatives and speak to your doctor or consultant with as much information as you can get to find the best medication for your specific situation.

There are so many variables involved that have to be covered in a few lines of text on the back of a packet it will never be totally accurate guide to the suitability for your needs.

My daughter was quiet seriously ill earlier in the year with side effects of a drug, wasn't even mentioned on any UK site but was in the US. Doctors at A&E struggled to treat her and was only when our GP forced a specialist to treat her was anything done and we had to go in with our research and they had to do some as well before treating her. NICE seem to not track as many side effects and a scheme to report effects called yellow book I think is totally inadequate.

Original Poster

coys676 m ago

All i can say is, do as much research as you can, read up on the drugs …All i can say is, do as much research as you can, read up on the drugs being offered and any alternatives and speak to your doctor or consultant with as much information as you can get to find the best medication for your specific situation.There are so many variables involved that have to be covered in a few lines of text on the back of a packet it will never be totally accurate guide to the suitability for your needs.


I understand doing research but I can't seem to find anyone questioning the 'up to' terminology. What gets me is that I had the drugs delivered today that need to be kept in the fridge until a nurse come around next week and shows me how I need to administer the throw away injector pen. With all of my research on their website I failed to come across this 'up to' categories. It's like it's by design
Edited by: "OllieSt" 3rd Aug 2017

I was supposed to start taking Humira injections a couple of years ago. After a phone call from the nurse arranging my first appointment I backed out. The nurse kept asking me over and over to make sure I wanted to go through with it which worried me. I had already been taking cyclosporin for 2yrs and catching every illness my little germ carrier could pick up at nursery , I'd had enough.
Edited by: "loumar76" 3rd Aug 2017

Original Poster

loumar762 m ago

I was supposed to start taking Humira injections a couple of years ago. …I was supposed to start taking Humira injections a couple of years ago. After a phone call from the nurse arranging my first appointment I backed out. The nurse kept asking me over and over to make sure I wanted to go through with it which worried me. I had already been taking cyclosporin for 2yrs and catching every illness my little germ carrier could pick up at nursery , I'd had enough.


The truth be told I did the same a few years ago, and I'm surprised it's been offered again. It's only this time around, after actually having the drug in my fridge and being inquisitive enough to look inside the drug box that I noticed this. Sadly this time around I'm a bit more desperate to consider using Humira.

Alot of 'proper' medications are like this unfortunately. I take an immunosuppressant and side effects are very similar.



Have you read the NICE page for your condition and/or the drug?

nice.org.uk/sea…mab

OllieSt6 m ago

The truth be told I did the same a few years ago, and I'm surprised it's …The truth be told I did the same a few years ago, and I'm surprised it's been offered again. It's only this time around, after actually having the drug in my fridge and being inquisitive enough to look inside the drug box that I noticed this. Sadly this time around I'm a bit more desperate to consider using Humira.

I really hope it helps you ☺

PTibbets7 m ago

You are probably better off posting the drug names. Skin cancer? 10% & …You are probably better off posting the drug names. Skin cancer? 10% & still on sale? I doubt that very much.

The medicine is called Humira , it is listed as a biologic treatment which wipes your immune system.

Original Poster

catbeans15 m ago

Alot of 'proper' medications are like this unfortunately. I take an …Alot of 'proper' medications are like this unfortunately. I take an immunosuppressant and side effects are very similar.Have you read the NICE page for your condition and/or the drug?https://www.nice.org.uk/search?q=Adalimumab


I'm so glad I made this thread and that you provided me that link.

Original Poster

PTibbets21 m ago

You are probably better off posting the drug names. Skin cancer? 10% & …You are probably better off posting the drug names. Skin cancer? 10% & still on sale? I doubt that very much.



As mentioned it's Humira. It's poorly worded by the drug company, and it's a relatevly new drug

Up to 1 in 10 is a maximum chance of 10%.

However it doesn't get placed in the category of up to 1 in 100.

So that's what stumps me
Edited by: "OllieSt" 3rd Aug 2017

PTibbets8 m ago

I seriously suggest you book an appointment with your doctor & discuss …I seriously suggest you book an appointment with your doctor & discuss your concerns. I have a feeling you are mistaken & they will put your mind at ease.10% risk of skin cancer would never be on sale.



Alot of drugs increase the risk of cancer, the drug I am on has a 1 in 10 risk of skin cancer a previous drug was 1 in 20. An older drug I know of had an even higher chance of cancer and woman I know lived her life having a bunch tumours removed, generally the alternative without the drug is worse, i.e death, severe illness with low quality of life.


OllieSt17 m ago

I'm so glad I made this thread and that you provided me that link. …I'm so glad I made this thread and that you provided me that link.



No problem , also worth looking up the US version (don't know what it's called) as it can be more comprehensive.

Original Poster

PTibbets17 m ago

I seriously suggest you book an appointment with your doctor & discuss …I seriously suggest you book an appointment with your doctor & discuss your concerns. I have a feeling you are mistaken & they will put your mind at ease.10% risk of skin cancer would never be on sale.


It's up to 1 in 10 people, thats what makes it so ambiguous but as I've stated a few times now, skin cancer doesn't appear in the up to 100 people section.

I've been to my doctor, the same one I've had for 20 years, and seen the same specialist I've known for 20 years too

A photo of the information leaflet found inside of the drug packet delivered today


31611433-KDenT.jpg
Edited by: "OllieSt" 3rd Aug 2017

PTibbets35 m ago

You have misread what the OP posted the same as they have misread the …You have misread what the OP posted the same as they have misread the risks. The OP is saying the side effect is 1 in 10 get skin cancer.




Yes 10% being the same as 1 in 10.

I didn't miss read neither did OP, I was told by various specialists at the hospital and have just had a cancer check by dermatology.

Why should it be in the "up to 100" section? that would imply that its less common and therefore misleading.

Original Poster

coys671 h, 54 m ago

Why should it be in the "up to 100" section? that would imply that its …Why should it be in the "up to 100" section? that would imply that its less common and therefore misleading.


Ok, reading through the thread I didn't explain myself properly. When I questioned up to 1 to 10 people I was told that it's up to and therefore no need to panic. Like you have deduced, I quickly came to the conclusion that it was more common than up to 1 in 100 section otherwise that's where they would have placed it. As you can see from this thread some want to read it as 10%, but that's not what it is saying. I think all I can safely say is that it's over 1% otherwise it would have been categorised in the up to 1 in 100 section. My specialist was pretty much dismissive of the chance of catching skin cancer stating that no one that had been given Humira from their hospital had contracted it. It was a bit too much waffle for my liking because I was told that the figures were misleading because some people who use this drug are more susceptible to skin cancers anyway. All I know is that I'm a bit uncomfortable about taking it now, and I think it's unreasonable for me to find out about these statistics in black and white for the first time only after the drugs have been home delivered.

At a cost to the NHS of £350 an injection, once a fortnight, it's not a cheap drug either.
Edited by: "OllieSt" 3rd Aug 2017

Original Poster

PTibbets39 m ago

If that is how you interpret it then I suggest you talk to your doctor as …If that is how you interpret it then I suggest you talk to your doctor as well. There is no way on earth our drug approval agency would give the go ahead for a drug that one in every 10 people will get skin cancer from. Seriously?!


I don't understand where you're coming from. I've posted a picture of the info for the drug. Are you saying that info is incorrect, or that I'm not reading it properly

PTibbets1 h, 1 m ago

If that is how you interpret it then I suggest you talk to your doctor as …If that is how you interpret it then I suggest you talk to your doctor as well. There is no way on earth our drug approval agency would give the go ahead for a drug that one in every 10 people will get skin cancer from. Seriously?!



Like I said I have been told by multiple different medical professionals. No doubt I will get told again at my appointment at the end of the month since it's summer. I was also given various leaflets when I started taking the drug and have been sent to a dermatologist for a full body check one year after I started taking the medication, I also have prescription sun creams. It's not how interpret it, it's what I have been told, mutliple times, quite plainly. If you like I can check my meds when I get home and post a picture of the side effects or I probably have the leaflets with the rest of my medical papers. Though since Ollie has already done it and you ignored it I don't see the point. Don't know where you got the idea such drugs wouldn't be approved.

If it helps, most of the statistics which make up side effects for a medication are derived from pre-clinical Mouse studies (more so for new drugs) and a small clinical trial sample of people before the drug gets approved. Side effects are monitored over for patients who are recieving the drug for 10-15 years and the stats updated accordingly. No offence to Doctors but most do not really understand how these numbers are calculated.
Edited by: "krazie2004" 3rd Aug 2017

OllieSt1 h, 38 m ago

Ok, reading through the thread I didn't explain myself properly. When I …Ok, reading through the thread I didn't explain myself properly. When I questioned up to 1 to 10 people I was told that it's up to and therefore no need to panic. Like you have deduced, I quickly came to the conclusion that it was more common than up to 1 in 100 section otherwise that's where they would have placed it. As you can see from this thread some want to read it as 10%, but that's not what it is saying. I think all I can safely say is that it's over 1% otherwise it would have been categorised in the up to 1 in 100 section. My specialist was pretty much dismissive of the chance of catching skin cancer stating that no one that had been given Humira from their hospital had contracted it. It was a bit too much waffle for my liking because I was told that the figures were misleading because some people who use this drug are more susceptible to skin cancers anyway. All I know is that I'm a bit uncomfortable about taking it now, and I think it's unreasonable for me to find out about these statistics in black and white for the first time only after the drugs have been home delivered.At a cost to the NHS of £350 an injection, once a fortnight, it's not a cheap drug either.


I think i see what you are getting at now, from those figures a better way of explaining it would be, the chance of skin cancer for example, would be between 1% and 10% (more than 1 in a 100, but less than 1 in 10) does that seem right to you?
Edited by: "coys67" 3rd Aug 2017

Original Poster

coys6715 h, 37 m ago

I think i see what you are getting at now, from those figures a better way …I think i see what you are getting at now, from those figures a better way of explaining it would be, the chance of skin cancer for example, would be between 1% and 10% (more than 1 in a 100, but less than 1 in 10) does that seem right to you?


Yes exactly that, and with a relatively large spread I can only assume that they really don't have too much data

I take Humira, have done for about 3 years now. I was fairly freaked out initially by the huge scary list. I can report I am still standing! But have had to keep on top of millions of blood tests and check ups.

Original Poster

Spears10 m ago

I take Humira, have done for about 3 years now. I was fairly freaked out …I take Humira, have done for about 3 years now. I was fairly freaked out initially by the huge scary list. I can report I am still standing! But have had to keep on top of millions of blood tests and check ups.


My understanding is that if it's going to be a 'horror show' it happens in the early days.

Was it the 'life changing drug' for you. That's how it's been sold to me?

I have ankylosing spondylitis and for years considered myself to be extremely lucky as I never developed any of the spinal deformity, or eye problems associated with AS. In fact even to today people cannot believe I'm a sufferer. Over the last few years it's the combination of fatigue associated with the ailment as well as the constant drugged up state I'm in using Tramadol that has caused me the biggest grief. I'm basically off my face 24/7.

I'm hoping I can get rid of Tramadol
Edited by: "OllieSt" 4th Aug 2017

I was prescribed it for Psoriasis and it was a complete game changer. One day I was maybe 70% covered, within a week it was gone, has stayed gone for over 3 years as well. Haven't experienced any side effects either.

Original Poster

Update on my Humira experience. Taken every 14 days

1st dose - bedridden for 3 days, 11 days of feeling fantastic

2nd dose - bedridden for 1.5 days, 3.5 days of feeling fantastic, 9 days of no effect (back on
Tramadol)

3rd dose - 9 days of little effect and using Tramadol at around 50% rate (more pain than full on Tramadol usage)


The biggest issue for me is that now I'm not regularly using Tramadol I find it makes me spaced out. I used to take them like Smarties and now I realise how they kept me in a permanent daze. I've got 3 months of this and then it's desicion time. I can either change the Humeria to another biological drug or revert back to full on Tramadol, something I really don't want to do if at all possible.

OllieSt3rd Aug

I understand doing research but I can't seem to find anyone questioning …I understand doing research but I can't seem to find anyone questioning the 'up to' terminology. What gets me is that I had the drugs delivered today that need to be kept in the fridge until a nurse come around next week and shows me how I need to administer the throw away injector pen. With all of my research on their website I failed to come across this 'up to' categories. It's like it's by design


because up to is based on the number needed to treat (a statistical analysis from risk and odd's ratios) which is also based on confidence intervals. Also up to is based on amount of the drug you are taking. Its like saying your car can go up go 130mph provided it's not raining and up the hill or there is no wind and you dont have it fully loaded with people....

What is the name of the drug?

just found that you take adalimumab...this is like one of the most common drugs seen next to methotrexate, nearly every older person with RA has it and its very common treatment for Crohns/Colitis .

remember that side effect are anything listed by participants in trials. if the trial was done in australia for 2-3 years (often the case to take so long) where people are at the higher risk of skin cancer.... well that is what they will report.
Ohh and key message for you
DOSE MAKES THE POISON (drinking 6.5L of water can kill)

and just noticed this was posted in august....
Edited by: "mattsk" 15th Sep 2017
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