Enbrel 25

[alextuna]

Enbrel 25 was prescribed to my mother since her RA was too active. She is 65 years old. I am reading terrifying stories about side effects and am contemplating to tell her to stop taking the drug. What would you suggest?

[helixhelix]

Your mother is an adult, it's her decision not yours. However, for me the pain and damage caused by active disease is far, far worse than the small possibility of side effects of the drugs. What's the point of having a miserable quality of life in a daily basis just in case you might one of the unlucky few who does have problems with the drugs - and most people don't. The best thing you could do for her is be supportive about whatever decision she takes.

[artyone]

Hi how nice of you to care enough to message. I'm a 63 year old who has decided not to take drugs. I explained my reasons to my children and they are ok with it. My doc wanted me on mtx, I don't tolerate drugs at all well in fact steriod in knees put me in hospital. So let mum think it out. She will know which she wants to do. And I believe if you stop the drug cos of feeling ill, body will return to normal.

Bless you for caring

Carol

[magglen]

I have been on Enbrel for eight years and have had no side effects. I was bedridden for three months with RD. I tried Methotrexate and Leflonomide but, according to my consultant, they were not working quickly enough so he put me on Enbrel. Since then I have been well. I am now 79yrs and I walk three miles regularly almost every day as part of my exercise routine. I was scared of going on any medication to start with until my consultant told me that the RD, left alone, would do more damage to my body than any of the medications.

[farm123]

Reading side effects can be very scary but it is only the very minority of people who do get side effects. I assume that your Mum has already had DMARDS to be able to progress to Enbrel and I do believe the side effects of these are much more intrusive than those from Anti-TNF's. Long term I believe there would be more problems from joint damage which is irreversible than from drugs. You are closely monitored. I am 46 and have had problems for 27 years - during this time I have tried many drugs and I spent 8 years on Enbrel until it could not longer control me. It is good you are there to support your Mum but there is no magic wand to decide which drug will work best and what suits one will not suit another. Unfortunately these forums do not show the whole picture as many who are well controlled do not need this support and therefore do not contribute often. Farm

[Hidden]

Biologic drugs just might offer your Mum a really good quality of life. I don't know what you've been reading, but I belong to a few forums and try to teach myself about my disease and its treatment on reputable internet sites and I've seen very few 'horror' stories. As others have said, the DMARDs tend to cause more problems than biologics although, again, they too are more often tolerated very well & of great benefit to many.

The internet is both a godsend and an absolute menace for those of us who suddenly get a diagnosis we want to learn more about, and our relatives too I guess. It's easy to find stories on the 'net about people who sustain life-threatening injuries putting on their knickers or have serious allergic reactions to tea or whatever. But I'm about to put on said undergarments with impunity, then, damn it, I'm going to have a cuppa!

[Footdoc]

Hi there

I have been on Enbrel for six years now. Whilst I may not be in a place I would like to be, I can assure you it's a better one now, than where I was. I still suffer from fatigue big time. Now I've had a wet room in place I can cope very well in the bathroom without relying on my better half. I can perform almost all tasks, except digging. Six years ago I needed my partner to wash and partly dress me, ie: socks and pants. I could not wash my own hair and I needed help to get out of bed. So where I am now is a much better place. I do suffer some side effects, particularly in the early days of taking this drug, but have found they have lessened very much. I am so grateful for the way this drug has helped me. Let your Mum have that chance. Support her, she will need it. Fatigue may be an issue for her as it is with me.

She'll learn her limits and will realise how to plan her days ahead. This site is amazing! You will get a lot of support here, and learn some of our coping mechanisms and when things get tough for your Mum or you as her son, someone here will have had an experience that you are currently having. Good luck to your Mum. I wish her well and you for caring enough.

Footdoc

[Hidden]

You'll always hear of people who have side effects from one or other drug and sometimes the problems have nothing to do with the drugs at all! By the very nature of a drug it's not intrinsic to the body and some bodies may not react well. Most are fine and as has been pointed out, the thousands who benefit will not come onto sites like these. Better not to listen to or read about problems before a drug, which is fully researched and prescribed in your best interests, has been at least tried. RD is a crippling disease and only recently have we moved away from the picture of an RD 'sufferer' of past years. I am a nursing sister and have seen the effects of RD when drugs have been arbitrarily stopped through scary stories of other people's experiences. Everyone is different and your mother may very well benefit from Enbrel. I have and I've been on it a long time. Good luck to your mother and you.

[Beverley-NRAS]

Hi alextuna,

It is lovely that you worry about your mother in this way. As has already been mentioned on this thread, the side effects that you read about are only possible side effects. We speak to many people on the helpline who are on Enbrel and doing very well. It is human nature that when things are going wrong we tend to talk about it and the internet is the ideal posting ground for this. So it is that you will tend to see more bad things when you look. If you are worried and want to contact the helpline to talk about this further, please feel free. I don't know where you are but our helpline number is:

0800 298 7650 Monday - Friday 9.30am - 4.30pm

We would be happy to speak to either you or your mother. It is worth looking at the potential benefits of Enbrel versus the possible damage that may be done by the RA if not adequately controlled and how that would subsequently affect the quality of life in the future for your mother.

Hope all this helps and do get in touch with the helpline if you need to.

Regards

Beverley (NRAS Helpline)

[francherry]

Hello, I've been on Enbrel 25mg twice weekly for 6 months and it has already reduced the inflammation in my hands and stabilised my bone erosions. Being on this medication has more benefits than the risks of leaving active rheumatoid disease untreated. I have erosive RD and was told quite bluntly by my GP that if I continued avoiding medication (I had a 7 month hiatus) that my joints would crumble if I kept going without medication. This was a wake-up call and made me realise that active RA/RD would not go away by itself. It's also important to remember that as rheumatoid is a systemic disease, it can affect the lungs, heart and eyes for example as well as the joints (not in all cases). I have a lung condition associated with RD and I feel that being on Enbrel protects me from not just further joint damage but also serious problems with my organs. I feel incredibly lucky to have access to this medication. As helixhelix says it is your mother's decision. It is good to seek out information but as has also been said already, people are less likely to post positive stories when they are doing well on medication as they are getting on with their lives. I would suggest that your mum talks to her rheumatologist about any concerns she may have. All the best.

[JaneAllen]

You should not be the one making the decision to stop without her consulting her doctor. Enbrel has been around for many years and is a safe drug. Normal blood tests will pick up any problems.

All these RA drugs seem to bring with them a "fear" factor that should not be the basis of a decision. The damage from no or less effective treatment will be far worse.

[hatshepsut]

I realise that you are worried about your mum, but it really is her decision to take the enbrel. What she needs from you is as much support as you can give.

I am 67, and have three daughters. On occasion they have voiced concern about the meds I am on now, and have been in the past. However, they have learnt that I know far more than they do about this disease, despite their research on the Internet, and that it's my body, and I make my own decisions!

Please don't try to undermine your mother's resolve, but let her know that you care, and will support her decisions. M x

[nomoreheels]

Hiya alextuna. Whilst I think it perfectly understandable you've your mum's best interests at heart this really isn't your decision to make. It's human nature the older we get the more the roles reverse & there becomes a time when we start being the ones looking out for them. Having said that unless your mum has cognitive issues & is unable to make her own choices I think it's worth concentrating on the possible benefits of enbrel rather than side effects which have to be listed & which she may not experience or feel she may be able to manage for the benefit she receives.

Please respect the her Rheumy's decision to prescribe this drug. He has her interests in mind offering her enbrel. You do state her RD is "too active" which would indicate he wishes to dampen down the condition before her immune system attacks her joints even more & is attempting to help by prescribing a medication that costs the NHS £89.38 net per 25ml dose & we all know the budget constraints the medical professionals have to adhere to at present. I would have thought if there was a less expensive but equally efficient alternative he could have treated her with it. Unfortunately none of the drugs necessary to help control this chronic disease are without possible side effects, that is the case in many possibly debilitating diseases, but they are in the main very efficient at doing so. I'm guessing your mum would like some respite from the pain she's experiencing at the moment, so I'm finding it difficult understanding why you would wish to intervene & question this & not weigh side effects against the benefit she could receive.

It is the nature of the more reputable sites such as this that generally people who are struggling or questioning their problems are the ones having need for them so an imbalance occurs & we mostly see negative questions rather than positive results of meds. Normally the good side of drugs are only mentioned when updating a query or in response to a question such as yours.

Etanercept was granted a license to be used in controlling Rheumatoid diseases having gone through exhaustive testing before being released to the market so the way I would approach this in your position would be to let your mum make her own choice &, if she is any way unsure, to talk through any fears she may have with her Rheumy.

I admire your consideration though do feel you energy would be best focussed on helping your mum & not influencing her about the drug which may best control her & give her more independence.

I hope this tome helps give another perspective!

[Hidden]

Trouble is, RA doesn't 'just' impact on joints, though goodness knows that's bad enough, but it's more insidious than that. Inflammatory arthritis can affect pretty much the whole body, especially if untreated. I have PsA, which is similar to RA and there have been some concerns that it may be affecting my liver and my heart. Looks like I'm okay, but don't underestimate how much damage this disease can do.

I accept the need to take drugs that seem quite strong when you're first facing the prospect of them, because not only are they usually far less problematic than you might think but also because the DISEASE is the thing that is really, really bad for the whole body.

[alextuna]

Dear All.

Thank you so much for taking the time and send me detailed answers for my question. I did not go into too much detail in my initial post and i regret it now, cause it seems like i am the one that decides if my mother should take this drug or not. On the contrary, I had to go to 2 different appts with my mom to her doctor as she was afraid to take the drug ( mainly because she is afraid of needles and also because of the side effects). Along with her doctor, I persuaded her to try it, thinking it was her best choice but I was doing some research online and came across some user reviews on webmd that talks about patients getting breast cancer, lung cancer, neurological diseases, becoming blind all because of the side effects. Here is the link: webmd.com/drugs/drugreview-...

So this is the whole story but after reading your comments I feel much better about her decision and my role in it. Thank you again !

[nomoreheels in reply to alextuna]

Hindsight is a wonderful thing isn't it?! Sorry, I didn't realise you were in the US & if I may suggest WebMD isn't the most reliable source of information of those out there accessible to the general public. If you feel you wish to investigate drugs from a medical/personal realistic perspective I would suggest using the proper healthcare sites such as this or in the US the ACR, ASHP or PubMed sites.

You may find this article interesting reading healthland.time.com/2011/02...

You don't say whether your mum is feeling any benefit or changes in any way yet but I hope she does if she decides to continue with enbrel.

[hatshepsut]

Do hope all goes well with your mum! So glad to hear that you are giving her so much support, even if she doesn't say so, I know how important it must be for her! Sorry about the cross purposes! Do let us know how she gets on. M x