Not a great start to the new year.: Adalimumab is not... - NRAS

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Not a great start to the new year.

J1707- profile image
39 Replies

Adalimumab is not the drug for me . 😩Side effects were the reason it was causing more problems . 6th drug fail. Not sure where I go from here.

Had a crusty growth removed before Christmas. They weren’t expecting anything suspicious but tested it anyway. Unfortunately came back as cancer . Do need to have another op and had my lymph nodes checked . Nothing suspicious there. . I’m asked her to look at another 3 and they too have to be removed. All these were dismissed by my Gp. Her advice was any growths or warts etc need to be checked especially the medication we are on. So my advice to all is get these things checked by a specialist push your Gp for a referral.

Now these were not caused by medication.I have typical Irish pale skin ( looks like Stilton) my parents were of the thought that a tan was a sign of health and wealth . We were on foreign holidays from the 70s Oiled us and told us to go in the sea to ease the burn 🙄( basically like cooking a donna kebab)

Hope you all had a better start to the new year x

39 Replies
springcross profile image
springcross

Crickey J, I'm sorry to hear that and I hope that once the others are removed, you'll be clear of it once and for all. I think some of these GPs really need to retrain!! Good luck. x

J1707- profile image
J1707- in reply to springcross

Thanks xx

Boxerlady profile image
Boxerlady

Sorry to hear all that but good that you're now in the hands of a specialist. My m-l had something similar and had to be checked every year but all was well. I hope that the next RA medication is "yours" 🤞

J1707- profile image
J1707- in reply to Boxerlady

Thanks very reassuring

Kags1068 profile image
Kags1068

Hi👋

Oh crap! 🙁 I'm really sorry you have yet more to deal with. We just keep waiting for 'our year' and 'our drug,' don't we? Keep holding on. I'm just glad your skin was checked properly.

Good old 70's attitudes to sunbathing, eh?! You hadn't done it properly until you'd burned to a frazzle and then shed a layer of skin! That's what we called sunbathing!! Johnson's baby oil an added bonus .......🤪😳

Take care xx

J1707- profile image
J1707- in reply to Kags1068

😂shedding a layer of skin . My sisters and I use to have a competition who could peel the longest/ biggest piece of skin in one go . MADNESS XX

Kags1068 profile image
Kags1068 in reply to J1707-

Such fun, eh?! Madness indeed. BTW, did you ever win?! xx😉

J1707- profile image
J1707- in reply to Kags1068

had it off to a T😂😂😂 entire length of my back xx

Madmusiclover profile image
Madmusiclover

oh sweetheart. What a lot to deal with. Have you tried Baricitinib?

ps my parents attitude to teeth in the 60s was don’t clean you’ll get them taken out and dentures anyway. 😩 trying to hang on to mine…brother is not so lucky.

J1707- profile image
J1707- in reply to Madmusiclover

oh God my Nan and grandad had theirs removed so they could have dentures and a Hollywood smile for their wedding.. mind you that part of the family had teeth that a horse would be jealous of 😂😂 .Loved Baricitinib but it didn’t work after each covid vaccine and wasn’t doing it’s Job

medway-lady profile image
medway-lady

Oh dear just shows how things change. I'm fair skinned never had a tan well ; I do the fake stuff though ! My husband is olive skinned so tans easily and so I sit under the sun shade he outside. But we've both got all our teeth. I think once upon a time having your teeth out was considered a wedding present which beggars belief, doesn't it. I honestly believe having good teeth will soon become a privilege as its so hard for people to get NHS appointments and private costs a bit. It's hard to see how people will get treatment for so many things without paying.

Summerrain14 profile image
Summerrain14

I am so sorry to hear how difficult things are for you. Thank goodness someone listened to you and checked them. I hope the next op comes soon.

How frustrating that you 6th medication is a failure. I do hope your rheumy team have another plan ready to begin when you can for your next medication.

Gentle hugs x

J1707- profile image
J1707- in reply to Summerrain14

Thanks Gail . Let’s hope we both have a better year this year xx

anne999 profile image
anne999

Sadly wasn't the drug for me either, it caused my liver enzymes to be very high

Plumcrumble profile image
Plumcrumble

Sending best wishes 💕💕

Gilliancheche profile image
Gilliancheche

I had a malignant melanoma which I discovered at the beginning of the COVID lockdowns. My operation was 2 years ago and I have 3 monthly checks 🤞🤞. It does limit my medication options for RA. Another casualty of the desire to let young children play outside and get brown as a berry. Blond hair fair skin - a recipe for disaster.

Mmrr profile image
Mmrr

Not the best start to the year, but hopefully you are on the road to receiving good care now. My partner had a similiar experience with his GP, he was told he had a fungal infection and given canestan cream (oh yes). I encouraged him to see another GP, who referred him to the dermatologist, he had a precancerous growth, which was removed. All well now. Have you tried JAK inhibitors ? They have worked best for me, with no side effects. Far from perfect but they do help.

I didn't do so well on the biologics.

J1707- profile image
J1707- in reply to Mmrr

Everything is a battle.

Barcitnib was my favourite drug it worked instantly. Then the covid vaccine seemed to affect its effectiveness and with each jab its effectiveness lessened. I was also re diagnosed with AS/PSA. I’m going to push for another JAK.

Adilamumab caused loss of muscle power in my arms and legs plus nerve pain . I got this with another TNF so this family of drugs are a no for me. I now have tinnitus.

How’s your back ?

Mmrr profile image
Mmrr in reply to J1707-

Toficinitib worked reasonably well for me until my 3rd Covid vaccine (pfizer) then the efficacy dropped off too.I'm now 6 weeks into Filgotinib difficult to make a call on it, as my lymphocyte count has dropped to very low levels. My rheumatologist has stopped leflunomide twice now to let them recover...more bloods tomorrow.

I've had comments via my GPs pharmacist and the nurse practitioner in hospital who were liaising with rheumatology that he doesn't think it is the Filgotinib causing the crashing of lymphocytes, rather something else is going on. Neither asked what the something else might be. I'm not sure why he is targeting stopping leflunomide.

I'll contact rheumatology myself in a few weeks time once the Filgotinib has had a good run.

I've had some success from the spinal blocks, not a total waste of time and effort, but my mobility hasn't increased much as the left sacroiliac joint is still very outchy sore. The pain did disappear for almost 24 hrs post blocks, so no doubt that sacroiliac joints are involved...RA or OA who knows ? But they are involved.

I've only been saying this for 2 years this month 😳

Monkeysmum profile image
Monkeysmum

Lovely to hear from you J, but wish it was with better news for you. It really is a hard slog trying to find a med that both works and doesn’t mess us up in other ways. I hope your Rheumy team can come up with a plan G and fast. Thanks for the reminder re the skin cancer issue too, being of Irish decent I have the same type of skin as you (love the Stilton description!) so am pretty cautious about this issue myself. I’m so pleased that you persisted and got appropriate treatment despite the initial dismissal by your GP. Sending a big hug your way, keep us posted re your next med 🤗🤞

J1707- profile image
J1707- in reply to Monkeysmum

Some people love Stilton 😁xx

Monkeysmum profile image
Monkeysmum in reply to J1707-

Can’t stand it myself! 😂

Gnarli profile image
Gnarli

Oh bother it all. Thank goodness you persisted and are getting these 'crusty growths' treated. Luckily Himself was referred straight away and the offending growth removed in short order. Yes, our parents were of similar mind little to no protection in the sun which for a strawberry blonde and a blonde was bad news. Always fussy with my teeth I still lost five to abcesses. Himself didn't even have a toothbrush growing up! I hope the next drug is the miracle you need.

J1707- profile image
J1707- in reply to Gnarli

my hubby had never been to the dentist or had a tooth brush when I met him ( he was 19) . His mother was Irish they didn’t believe in oral hygiene. Now he is obsessed with oral hygiene. Teeth has been always been my obsession too use to badger the children not one have a filing and my oldest is 33

Seatgeorge profile image
Seatgeorge

Just had a read up on the drug, seems very similar to methotrexate immune suppressent, if you tell the doc your intolerant to the drug I'm sure they will change it, it takes time to get the tight combo good luck

Luludean profile image
Luludean in reply to Seatgeorge

It takes ages to get replies from rheumatology helpline! When you do the nurse is fiercly defending of the drugs you have been prescribed . GP’s don’t challenge consultants and will not discuss biologics ie adilamabub, benapali . I’m due tostart Methoyrexate tomorrow but am on three heart drugs ! Any advice please?

J1707- profile image
J1707- in reply to Luludean

I use methotrexate and doing ok. I can’t have anything above 15 mg as I turn into Rip van Winkle. I inject which I find better than the tablets. Lots of water helps. I will try anything if it doesn’t work then I will try the next one. I want to live not just exist .

Luludean profile image
Luludean in reply to J1707-

Hi Seatgeorge, Of course I want to live too, but biologics made me ill . Sulfasalizine was mistakenly prescribed (clashed with Digoxin ), luckily my gp pharmacist phoned telling me I couldn’t take it. So I am wary of rheumy drugs clashing with Heart drugs. One department does not talk to another. Problem is , with immune suppressents you are more likely to get infections . Infections are not good for those with heart disease.

Seatgeorge profile image
Seatgeorge in reply to Luludean

I know how you feel, my consultant is excellent I told her from the start I know my body if the dosage is too high or causing problems I want it changed, the RA nurse is quite good if you have a problem, I did tell one nurse if you had RA you might be a bit more bloody sympathetic, she then changed her tune, good luck.

stbernhard profile image
stbernhard

Oh my, what a good thing you didn't take the GP's dismissive opinion. Heal quickly. Hopefully the next medication will get your RA under control without side effects.

J1707- profile image
J1707- in reply to stbernhard

Thanks S

Ailsa-NRAS profile image
Ailsa-NRASPartner

Hi J

I've had treatment for Actinic Keratosis on my face due sun damage - I was diagnosed 43 years ago and no-one told me that steroids/DMARDs increased risk of sun damage and to wear high factor skin protection daily. Like you in the 70s/80s I would sun bathe on holiday. We all should be wearing min. factor 30 but more like 40 or 50 even in winter if outside. However, also wanted to say I've had 9 switches and tried most things - I'm back on Humira for third time as it seems to be the only thing that works for me, but hang in there, there is likely to be an option that will work for you. What are they going to try you on next?

Ailsa - NRAS Nat. Patient Champion

J1707- profile image
J1707- in reply to Ailsa-NRAS

Thank you for the encouraging reply. Yes factor 50 hats long sleeved and shade is my go to especially after I started my medication. This information wasn’t given to me I researched it myself on diagnosis. I do feel there is a gap on the information we are given on diagnosis. I was led to believe the medication would mean I could lead my life as normal but as so many of us realise this isn’t the case. I don’t know what medication is next as I now been diagnosed with Ankylosing Spondolarthritis . Baricitnib worked wonders until I had the first covid vaccine and it didn’t work as well. Each covid vaccine meant Baricitinib lost effectiveness. I’m going to ask for another JAK. I shan’t give up I want my life back ,

Deeb1764 profile image
Deeb1764 in reply to J1707-

I still wryly laugh at my first consult that day taking MTX and 13 weeks later, I should have my life back…… …………..

Ailsa-NRAS profile image
Ailsa-NRASPartner

No don't give up - you sound like you have a good fighting spirit - just what we guys need! If you have AxSpA, do also get in touch with NASS (National Axial Spondyloarthropathy Society, they provide great resources too and also have a national network of physios working with people with AxSpA in hydrotherapy pools. Good luck.

J1707- profile image
J1707- in reply to Ailsa-NRAS

Thank you

priss58 profile image
priss58

I'm so sorry to hear this. Fair celtic skin here as well. Never one to sit in the sun, but my daughter did despite me telling her not to. She regrets it now, especially since she had a skin lump removed recently which thankfully was not serious but is keeping an eye on another one. She had to go private in the end. I wish you a good outcome and hope you get a helpful drug soon. X

Blodynhaul profile image
Blodynhaul

Hi J1707,

Very sorry indeed to hear your situation. Blooming bad luck with the growths, but thank goodness they're being dealt with now. Does make you wonder with some GPs not 'erring' on the side of making sure of things.

Feel very sorry for you with Adalimumab not suiting you with horrid side effects. It didn't work at all for me either 18 months ago (produced antibodies against it), but glad to say Filgotinib (FIL), Jak-inhibitor, is working very well for me keeping the RA inflammation & pain/agony at bay - been on it a year, previous to that the RA was at its very worst out of control. The trouble is some very difficult chronic effects I have since, not sure how much is due to the FIL or other things...! Hopefully something can work for you. Meanwhile, good luck, hope you write again with better news :) X

Pippy25 profile image
Pippy25

Apologies I have only just seen your post. As you say not the kind of start to 2023 you had hoped for but let's hope that now you are being seen by a specialist that things get moving for you and that you get the appropriate treatment you require. My mum and her sister had a form of skin cancer, which came in varying sized patches sometimes looking like moles but also would sometimes crust over. My mum had quite a few removed, but on the last occasion was issued a particular cream to be applied and a dressing put over. This was done over a few weeks and the thing disappeared. Keeping my fingers crossed for you J, take care xx

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