Adalimumab: Had rheumatoid arthritis for years. On... - NRAS

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Adalimumab

Had rheumatoid arthritis for years. On sulfasalazine. Methoject . my nurse has advised i go on to Adalimumab. Im worried about the side effects can people tell me about there experiences

33 Replies

I am on exactly the same combination, I had my first Adalimumab injection last week , the only side effect so far was a headache starting about 2 hours after injecting and lasting 3 days. Hopefully this will improve as my body adjusts. For me I am in so much pain and am unable to do so much that it was worth trying , good luck

I found it easy to inject and hair loss was the only side effect I suffered.

Sadly, for me, it stopped working really quickly. When is was working it was like a wonder drug.

Good luck.

I take hydroxychloroquine and inject methotrexate, and have done for two years. MTX caused some hair loss so I take a supplement called biotin to counteract this. My consultant approved this.

This all had some success but my RA is still not well enough controlled so 4 weeks ago I started Amgevita (adalimumab) fortnightly injections. I was advised it could take 10-12 weeks to be effective but I felt some improvement within 24 hours of my first injection . This improvement wore off towards the end of two weeks, but returned with the next injection. The hospital have advised that the improvement will become more sustained after I’ve had a few injections. I’m feeling very hopeful. Hope it works for you too 👍

Isn’t that wonderful news. 🥳

Yes 😀 I was diagnosed almost 3 years ago and wish I’d pushed for biologics sooner now I’ve felt the results.

meemmeem profile image
meemmeem in reply to CagneysMum

Hi, I am about to start adalimumab next month as hydroxy not bringing inflammation down, could you please let me know if it is still working for you? 😀

CagneysMum profile image
CagneysMum in reply to meemmeem

It’s still working really well for me 👍 Hope it’s successful for you too. 😁

meemmeem profile image
meemmeem in reply to CagneysMum

Thank you, keep safe. 👍😀

If you have had no luck with your previous R.A. medications it really is not a good idea to make the decision whether to take what your rheumatologist advises, based on what others have experienced.

Every single person has a different reaction to each drug. Some good, some not...but those who do well on a drug don’t usually sing it’s praises on here do they? But if drug causes problems they are disappointed & naturally say so.

Can you try to accept your consultant’s advice with the expectation that “at last this drug will work”?

If you read the bad side effects others experience it will put the idea in your head that you will experience them too.

If you try Adilimumab you could be very pleasantly surprised.

bubblyalex profile image
bubblyalex in reply to AgedCrone

I do think it can be very helpful to have other people’s experiences to help prepare and look out for things. For me that works better anyway. I will worry but I will worry much less if I know as much as I can about it.

AgedCrone profile image
AgedCrone in reply to bubblyalex

If you are anxious enough to ask others how a drug works, & A,B&C say how awful it is...human nature tells us that it will affect your attitude to accepting it without worrying.

You should not be looking out for problems....just expect a good outcome,....& you might just get it.

I only ever discuss how a proposed drug will work with my rheumy team & that has served me well over many years.

I’m sure anxiety leads to the failure of many drugs...when I was still looking for “my” drug...I deliberately didn’t look for what others experienced.

Just my way of dealing with my RA....but it has worked well for me...& it might mean many people find a suitable drug sooner, if they aren’t constantly worrying “what iff?”.

Boxerlady profile image
Boxerlady in reply to AgedCrone

I think that it's natural to be concerned about a new medication and it's better to ask for other people's experiences on a forum like this than to consult Google as that way madness lies! Of course, the advice of your medical team is the most important thing but having the reassurance and support of other people going through the same things can be invaluable. When I started a new medication recently I found the experiences folk on here very reassuring; it reinforced the fact that everyone is different but gave me some positive feedback which increased my confidence.

AgedCrone profile image
AgedCrone in reply to Boxerlady

You obviously don’t get over anxious & let that affect your attitude to a drug.

Over the years....from the explanations I have read, some people are convinced from day one a certain drug will not suit them. Either because they have read it hasn’t suited somebody they identify with, or because they have set their mind in wanting a particular drug. ...which their doctor doesn’t think suitable....but they don’t discuss reasons why with their rheumie team ....& understand why it won’t suit them.

This was particularly prevalent when Biologics were first introduced for RA.

Santori profile image
Santori in reply to AgedCrone

Drug outcomes based on patient anxiety, haven't been widely studied.

The placebo effect has, the positive expectation that the little pill will help you has the desired effect. It doesn't mean the pill has done anything. It's the belief doing the work.

You suggest its unwise to ask others experiences, on that reasoning why would the OP adopt your attitude?

AgedCrone profile image
AgedCrone in reply to Santori

No reason at all....But we are not talking placebo here....but serious RA drugs.

Patients who take a leap of faith & give the meds their doctor recommends a chance, & don’t try to second guess him because x drug worked for someone else....seem to have a better outcome.

I have no proof of that, but check back on some of those who are still struggling.

We each have a choice.....we just need to make it with all the necessary information.

Santori profile image
Santori in reply to AgedCrone

I think you've contradicted yourself. You now say ''make it with all the necessary information''. Whilst previously you discouraged seeking patient opinions.

Forgive me if I'm misunderstood, but isn't patient experience vital information to consider?

AgedCrone profile image
AgedCrone in reply to Santori

Yes....you misunderstood

Santori profile image
Santori in reply to AgedCrone

If I have then do clarify what you do mean.

I am being prepared to start this too. I don’t know the answer but I have been ok enough on Sulf and Methoject so far so hopeful that it will be the same on Adalimumab.

AgedCrone profile image
AgedCrone in reply to bubblyalex

If you approach every drug your rheumy thinks is suitable for you with that attitude you can’t go far wrong.

But to worry so much you become over anxious is surely not going to help anyone successfully find a suitable drug?

Much better to have a discussion with your rheumy nurse...she will have heard every reason under the sun why to start/stop a drug,& will know how to alleviate any doubts.

Boxerlady profile image
Boxerlady in reply to AgedCrone

Yes but not all of us are blessed with such a strong mental constitution! I found that when the rheumy nurses talked me through all the possible side effects (without me asking) it was quite worrying so it was was nice to come on here and get some reports of people not actually getting them 😊

AgedCrone profile image
AgedCrone in reply to Boxerlady

But so many people scare themselves silly & could miss out on a drug that would work for them!

I've never had it but felt worried about Etanercept, more because of the injections aspect even though I've used Fragamin it seemed a huge step to take no longer just swallow a pill with my cup of tea but if it had side effects I could not stop taking it. Anyway after much overthinking I did it, and it didn't hurt in fact it was a bit of an anticlimax as in my head I had overcome a huge fear of needles. It did cause a bit of very mild nausea and I still think I can taste it but it has worked. I hope you find that this new medication works for you too.

Nobody should hesitatate to ask for the experience of others when deciding on anew treatment. This forum is full of people that have been there....as opposed to the best of experts. I have found many useful tips through that process.

I haven't tried Adilumab, but have tried 5 biologics. I'm presently on Abatacept, and it's working reasonably well. Get as much inf as possible, but please don't be too scared to try it.....you will be well monitored. Good luck!!

My daughter too is now struggling after 10 years of Enbrel only, it has now worn off and rheumy has added weekly 10mg Methotrexate tablets to try and tick start Enbrel again? She noticed an improvement after 4 weeks, but may have to increase to get a better improvement? But she is planning to ask her Rheumy about trying another Biologic, but does not know what to suggest. She's thinking of Simponi, but the Rheumy had before suggested Humira! She just does not know what to do, she just wants to have the same affect as Enbrel had for her for 10 years! Any advice from experiences guys?

Don’t you think a doctor who has studied rheumatology for years,& knows your daughter’s clinical history might be the right person for your daughter to ask for advice as to which drug she should try ?

It really isn’t as simple as choosing a drug that has helped somebody else. Just look how many people succeed on one drug, but others get no help from it at all.

Rheumatologist’s really do use their experience & knowledge of their patient to choose the drug they think will help each individual one.

Santori profile image
Santori in reply to AgedCrone

That's a generalisation. How many Rheumatologists just happen to find the right drug, also pays the best bonus? How many are so rushed between NHS/Private clinics they miss important details? Who don't grasp the contraindications for patients on other drugs for other illnesses?

Her Rheumy also respects her opinions too and respects her suggestions and then he suggests. Therefore she just does not want to go to Rheumy not having an opinion!

I have absolutely no idea.

But what do you mean by “pays the best bonus“?

What I do know, is a good relationship between doctor& patient is more likely to bring about a better outcome for the patient.

No professional likes a patient/client/ customer coming in supposedly asking her/him for their expertise, only to be met by...”but I want X cos I know somebody who takes it & he/she is fine”.

Everyone newly diagnosed with R.A. needs to trust their doctor .....information provided by others with the disease should be taken with caution, until they have that good relationship cemented.

That has worked for me for 20+ years....

Santori profile image
Santori in reply to AgedCrone

I thought it self explanatory.

You seem to infer that psychology is a factor in the biologic effect of a drug. No amount of positivity on my part will alleviate adverse side effects.

Do you have any statistics for the number of patients claiming they want a drug because someone they know takes it and is fine? Any moderately intelligent person wouldn't do that. They may ask to explore options, which is reasonable. Any ''expert'' who doesn't like that is more aptly a dictator. It is often those who aren't true experts who bully and dictate to hide their lack of knowledge.

In most fields it is the best experts who have the most doubts and uncertainty about their knowledge.

I tend to think information provided by a doctor needs to be taken with caution until their methods have been fully tested.

I would add that most Rheums have purely academic knowledge. Which is insufficient when dealing with drugs. A side effect that seems minor on paper can have debilitating consequences for the person experiencing them.

After having arthritis for over 30+ years I have found that as with many conditions , patients get to know their condition very well. They get to know the different types of drugs used and are generally aware of new drugs coming on the market. Although consultants have specialised in their chosen subject and are up to date and can can guide you to the best treatment, personally I would like to be informed not only about the drugs I am taking but also side effects. Whether this is from other people’s experiences or from information I have read I feel that when seeing my consultant I can then ask questions about the drugs rather than going in blind. I have always been of the mindset of taking control of my RA. As others have said the different drugs work for different people but try and not be scared but well informed. By knowing that someone has had whether it is a headache or whatever as a side effect due to the drug being taken at least you know this might happen but it’s not unusual and inform your RA nurse or consultant. You will be monitored carefully over a period of time when you are first introduced to the new drug and I’m sure the RA nurse will tell you to rig her if you are worried. Good luck with your new treatment.

I never read the PIL as if I read I'll get a headache I usually do. In my view its a good idea to look up the NICE or NRAS information or NHS website for side effects if anyone is worried about any medication they are offered. I learnt my lesson after getting side effects from MTX so was changed to LEF. The LEF information was really scary so I put taking it until no choice as my hands had gotten so bad my fingers would not bend but it changed my life; in 12 weeks I went from tired, swollen and painful hands and shoulders to bright, normal and no pain at all. Side effects were minimal for a couple of weeks but then the world got suddenly filled with colour. I stress this is just my experience and I have to run all medications via the Renal Pharmacy at my specialist hospital and they have the final say on my medications down to low kidney function. I also think about risk, is the risk to my joints higher if I don't take this particular treatment and I'd add not all symptoms are visible as I had PE's and an unprovoked DVT in 2014 linked to RA so its vital to keep it under as much control as possible. My RA team are lovely always ring back and I know always helpful. The doctors are super and one in particular found my AKI caused by a medication and got me admitted to the A&E same day. Extraordinary commitment he came to see me every day for 14 days as did a nurse and I cannot express how grateful I am to the NHS. So I think ask for any personnel experiences but temper it with a good dose of realism and statistics so if 10% of people get a headache then 90% don't.

I take a bucket load of stuff but have in the past moved meds. around or halve the dose and take twice a day to relieve side effects but always asked if it was ok, its always been fine and to be totally honest its usually antibiotics which cause me more problems. One in particular comes with an anti naseua pill as it has to be taken but nothing stays down with it.

Hi how long did it take before it was not working? I was on Benepali for 22 weeks and after 9 the pain crept in. Then on 20th Oct I started Idacio a biosimilar to Adalimumab. I get headaches and nausea for 4-5 days and the pain in joints is awful. I am taking it fortnightly but so far not enjoying it. Any advice?

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