Biologic drugs

Hi - hoping to find some more information from those of you who are further down this journey please

I Now know that I’m being offered Ereli - the biosimilar for Enbrel.

Various blood tests to complete and all seemed as straightforward as RA can be - then was told of the side effect of ‘possible increased risk of developing MS’. That’s a big one for me as my brother has it so I already am at more risk than most (I guess potentially we all are as it’s auto immune). I’ve asked but have not yet had an answer to how much that risk is increased by taking the drug. Has anyone done any research or know anything?

I know if it will impact me is a question that can’t be answered because who knows what side effects I would get but want to know as much info as I can

Thanks

[AgedCrone]

Who told you about the MS connection? If it was just "somebody" ignore it.

If it was your rheumatologist say what you have heard, & ask him to explain - tell him about the close family connection to MS...& that you are wary of taking it. He will know your history, but not your brothers' unless you tell him.

Most RA drugs have contra indications if you have, or have had, another condition ....so there is bound to be an alternative you can take.

I'm sure you will find an alternative if you really don't want to take it.

If you have a rheumatology nurse give her a ring, the nurses are usually much better at researching & explaining than the rheumies.

[Hidden in reply to AgedCrone]

Thanks - it was the rheum nurse that told me and in fairness she has referred it back to the consultant for an opinion. I’m just Pondering and looking for info to compare and consider. I have got myself to the place that MS drugs have also improved in the 20 years my brother has had it so even if I get it, it doesn’t mean the results for me will be the same as for him.

[AgedCrone in reply to Hidden]

No but it would always be at the back of your mind if you just went ahead without getting it straight in your head wouldn't it?

Your rheumatologist may look into the type of MS your brother has, or he may just chose another Biologic that has no connection to MS.

i've had cancer& when my rheumy put me on Biologics there were only two I could be offered. I chose Retuximab as it seemed the least intrusive ...just an infusion 4 times a year...so I thought,.....but of course I hadn't considered the pre infusion consults & blood tests, so really I need to be around for 6 consecutive weeks, twice a year, & as I like to pop off abroad to see friends I've kinda shot myself in the foot.

I did look at the possible side effects , but I had tried so many Dmards over the years I was ready to take a chance...I reckoned I had to find a drug that worked well eventually!

On the plus side it has worked really well since 2016....so I'm not complaining.

Keep us informed about what choices you are given & how it's working.

[dwsurquhart]

The side effects with any of these drugs are quite astonishing. I am on Tocilizumab and the side effects list is huge. Can increase potential for certain types of cancers, can cause heart attack and strokes, can cause what ever the manufacturer can think of. Some of these I feel are listed so if you were to get any of these other diseases you cannot and sue for compensation.

As with any drug you have to weigh the pros and cons. Pro, will make you feel better and hopefully cause the RA to go into remission etc etc.

Cons: May cause cancer, may cause MS, may cause your hair to fall out and your nose to turn purple or what ever.

The question you need to ask yourself, are you willing to try something to make yourself feel better and be more productive in your daily life or just be scared of the medication?

I was in the same boat a few years ago when I was diagnosed with RA which has since changed 4 times to something else but uses the same medications to control systemic inflammation.

I weighed the pro: I can be around to play with and enjoy time my young son or the con: be crippled up and not able to play and enjoy time with my son because I have zero energy.

I chose to take the drug, and now my son and I do all sorts of things together. We enjoy each other's company now.

So take some of the side effects and monitor yourself, if something does not feel right, get ahold of your rheumatologist and tell them how you are feeling.

It is your body and only you know how you feel. If you feel like a pile of something, do not hold back. Tell them to change the drug. You and your doctor should form a relationship regarding your care, not just have the doctor tell you what is right. They do not always know and sometimes cannot admit that.

Be your best advocate and do some research and become informed about your condition and ask pertinent and pointed questions regarding your disease and treatment.

Your doctor will like that as it takes some of their work away and the they can focus more on YOU!

Cheers and apologies for the long rant.

Scott in Vancouver Canada

[Hidden in reply to dwsurquhart]

Thanks - like you I’m starting to focus on the positives it will give me