Fear of infection or skin cancer while on Humira - NRAS

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Fear of infection or skin cancer while on Humira

Peterrabbits profile image
17 Replies

Psa with sacroiliac inflammation Due to start Adulaminuab in the next few weeks .

Currently on Meloxicam 15 mg daily

Trying with diet for last 6 months , have improved but still get bad days stiff painful hips and shoulder / neck was once very fit and agile for 58 years .

Wondering whether I should wait until I’ve tried everything alternative before starting Humira.

Usually work on old houses carpentry renovation so also worried about bacterial infection .

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Peterrabbits profile image
Peterrabbits
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17 Replies
Biofreak profile image
Biofreak

I have taken humira in the past, also etanercept and currently Abatacept because I have rheumatoid arthritis. All the biological treatments warm of the possibility of cancer because they all suppress the immune system. However I think you have to weigh the odds of the dangers/ side effects of these treatments against the improvement in pain relief and quality of life. Remember it's only a possibility. I have been so grateful over the years for the benefits of these drugs. I have the philosophy that if you don't try you will never know. I am currently on Abatacept which has been great as were humira and etanercept which both improved my life greatly. However I recently had a fall which has caused problems with pain in my lower and and could be the sacroiliac joint but unsure. Going to a physio appointment tomorrow to get an opinion as x-ray shows no fractures. The main thing to remember about biological treatments like humira is that you do have to take care with cleanliness and exposure to bacteria because your immune system is depleted but if you ensure you wash your hands and wear a mask in overcrowded situations you will protect yourself as much as you can. The benefits of these drugs can be life changing.

Gilliancheche profile image
Gilliancheche

I also have melanoma, I have been advised that I cannot be given anti TNF meds and am currently on secukinumab (cosentyx) which is a different type of biologic. I understand there are several such treatments. Speak to your rheumatologist for advice/reassurance. Xx

Peterrabbits profile image
Peterrabbits in reply to Gilliancheche

Hi , thanks yes . The rheumatologist said I’d have to go on Adalimumab as some of the others I don’t know which although good for PSA in general, do not work for the spine and sacroiliac joint involvement which I have .

Scottishlad profile image
Scottishlad

I think that the advantages of biologic therapies out weigh the risks. If you are being offered a biologic then you have moderate to severe disease. Active RA causes irreversible damage to your joints. The longer you wait the more damage occurs.

I've been on Cimzia for around 5 years and not noticed any significant change in my susceptibility to infection. I wear gloves more to reduce the chances of cuts and abrasions while gardening or doing DIY.

Alternative therapies as far as I am aware have limited, if any, effect on RA.

helixhelix profile image
helixhelix

I put off swapping to a biologic for a year because I was concerned about infections. Most stupid idea! I was ok before on MTX, sulpha & hydroxy but the biologic has been a game changer.

It’s now three years and I have not had a single infection…and I spend a lot of time gardening and getting cuts and scrapes. This is all such an individual thing, so we each have to assess our own risks and our own appetite for risk. My approach is to do everything I can to minimise risks - especially cancer risks (no smoking, very moderate alcohol, no highly processed foods, daily exercise etc), and consider that weighs out any increased risks from drugs.

Because I live in France I also have an annual dermatology check-up which I don’t think happens routinely in the UK.

Peterrabbits profile image
Peterrabbits in reply to helixhelix

Now that’s the kind thing I’m talking about , cuts and scrapes dirt and fungus. I did work in this environment until I had to stop last year in May . Haven’t worked since , just can’t manage it .

I also wonder about the pneumonia jab , does it work? Does it contain aluminium as I read somewhere on here ? Do I definitely need it ?

Most of my work where airborne dust could cause lung problems , I of course wear a good mask but it’s that stray tiny bug that could get through that worries me .

Thanks for the replies , very reassuring 🙂

helixhelix profile image
helixhelix in reply to Peterrabbits

I have had pneumonia twice, pre-RA and as a younger fitter person. I never want it again as e@ch time it took 6 months of my life to recover, and have happily had my vaccine!

Even if it does contain aluminium (which I don’t know) I can’t see that’s much more significant than what I might have picked up from my mum having cooked in aluminium pans all my childhood until I left home.

Peterrabbits profile image
Peterrabbits in reply to helixhelix

Ok I’m going to call the GP tomorrow and ask . Looks like it’s going into the bad left arm then unless it can go elsewhere Thanks .

Lupusrelative profile image
Lupusrelative in reply to Peterrabbits

Get that jab. Pneumonia can make you very ill. You can have it in any arm; just ask.

Gilliancheche profile image
Gilliancheche in reply to Peterrabbits

I have had the pneumonia jab and had a second one as my previous was 10 years ago and it was decided a 2nd would be advisable.

Potatos profile image
Potatos

I have been on adalimumab (Humira then Amgevita) since 2006. I have had no more infections than I did before. I do lots of DIY, garden regularly and work my allotment. I couldn't do any of that without adalimumab.

Peterrabbits profile image
Peterrabbits in reply to Potatos

That’s great to hear . Thanks Potatos.

Mmrr profile image
Mmrr

I've taken benepali and tocilizumab, and had no infections. Wear lots of high factor sun cream when outside in the summer to protect your skin, be sensible, wear a hat and so on. And....the pneumonia vaccine is really worth taking.

Best wishes, I hope the meds work out well for you.

Celticdancer profile image
Celticdancer

I've been on a low sugar and carbohydrate diet and now on a low salicylate and low oxalate diet? I'm trying different diets and I'm finding they've really improved my arthritis where I'm not taking as many painkillers. There are many different diets to try. Doing intermittent fasting and drinking plenty of water to flush out the toxins really helps as well. Taking very strong immunosuppressant drugs that wipe out your immune system is risky but if you're in too much pain then you must do what's best for you. In the US the biologic drugs are pushed alot onto patients as the Doctors get kickbacks from the pharmaceutical companies for pushing these expensive drugs onto patients so they can then claim off their health insurance. Here is a USA today article explaining it.eu.usatoday.com/story/news/...

Remember that the big pharmaceutical companies want customers for life as it makes them alot more profits. That's why more natural remedies are often shot down.

bpeal1 profile image
bpeal1 in reply to Celticdancer

In the UK it is very different. As the National Health System funds the biologic drugs you are only offered them once you have tried various other treatments without success. If you are offered then it is because you have active / uncontrolled disease. There is definitely no incentive for Doctors to prescribe them, in fact the opposite as funding has to be agreed on an individual basis from the tight local health authority budget.

Peterrabbits profile image
Peterrabbits

I have I’m sure had a great success in settling a lot of my pain and symptoms by changing my diet . Just limited veg , mostly green organic and grass fed meat and fish ,

Cassava flour and sorghum to make cakes . Olive and coconut oil . A little sugar . Green and black tea .

Took zinc carnosine , lglutamine and deglycrrhizinated liquorice to heal the gut . Seems to have worked , 9 months later feel much better . Have skin patches of stubborn psoriasis still but they don’t bother me too much , just scary for others . Starting to jump out of bed again !

Will see how it goes , still waiting for the nurse to come to instruct me how to inject the imraldi .

bpeal1 profile image
bpeal1

I have been on various biologics for about 10 years. The only antibiotics I have needed in that time were for a tooth abscess, but my husband has had them for that too and he’s not on immunosuppressants so I don’t think that’s particularly significant. If I get cuts and scrapes I keep an eye on them and clean them with dettol or similar if they look dirty or inflamed.

I think it’s sensible to be aware and take swift action if necessary but not to become obsessive about it.

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