biologics side effects

[LucyZuma]

I have RA for at least 8 years. Been on 4 biologics. I was having about a flare a year. I’m done with the side effects. Psoriasis on my legs not wide spread but invoked 3 visits to dermatologist. Then bloody phlegm in the morning occasionally and finally low blood cell counts . I want to stop all biologics. I do take hydroxychloroquine. Am I being unreasonable?

[Brushwork]

Hi,

Well it’s your choice, but maybe have a good conversation with you Rheumatologist first. Perhaps you could try a different one. I had 3 before I found the one that gave me a ‘good’ outcome.

For me the difference between taking the biologics and not is simply a matter of very active and progressing disease or controlling it. DMARDs either didn’t work or were intolerable for me.

[LucyZuma in reply to Brushwork]

Yeah I know you’re right. Thanks

[virtualreality]

It's not at all unreasonable to want to live without the difficult and persistent side effects you're getting. I agree with Brushwork that it would make sense, if it's possible, to discuss this with your rheumatologist first though because there might be other options - other conventional DMARDs unless you've already tried them all, biologics with a different mechanism of action to the four you've had, JAK inhibitors. I think it would be entirely fair to ask if any of those routes could be considered for you, because stopping without a replacement could leave the disease process uncontrolled (and it sounds like you already have flares regularly as it is). I really hope you get the support you need to identify a more manageable treatment plan that leaves you with a better overall quality of life.

[LucyZuma in reply to virtualreality]

Thank you

[Scottishlad]

You need to be aware that the problems you are having may not be associated with your biologic therapy. There's a strong association between psoriasis and RA for example. The treatments are often very similar. Stopping the biologic may increase your problems.

I would certainly have a proper discussion with your rheumatology team before stopping.

[LucyZuma in reply to Scottishlad]

Yes I have appt in 2 months. Thanks

[sylvi]

I stopped biologicals due to keep having infections. xxx

[LucyZuma in reply to sylvi]

How’s your swelling and pain?

[sylvi in reply to LucyZuma]

Well my fingers are swollen a lot and by the end of the day they are sore. xxxx

[MistyDay]

All medication have side effects. It is not unreasonable to consider stopping them . Biologicals are powerful, and some side effects are harmful. Before being given a biological I refused to continue with methotrexate as I could not tolerate the side effects, and a friend had serious problems with sulphazalazine .The inflammation of RA can damage all organs. RA meds are designed to reduce the bad effects of RA, and doctors try to find the medication that reduces your RA with the minimum of side effects. It is a fine balance which can change over time. Both the patient and consultant should work together over this. You need to be honest with your consultant and say the side effects are becoming too much for you. Ask what else can you try. Good luck.

[LucyZuma in reply to MistyDay]

Thank you. I also had to stop methotrexate due to affecting my liver.

[Chester1975]

Sorry to hear your troubles. I too have psoriasis and RA. I’m on Yflyma injections, but also have to control what I eat and really increase the probiotics in my diet to help with the Psoraisis. I’m wheat, gluten and lactose free and eat a lot of sauerkraut and kimchi which are full of pre biotics. I rarely eat meat and have a wholesome pescatarian diet. I also drink pure celery juice for a whole day once a month to give my body a good cleanse. It really helps. Xx

[LucyZuma in reply to Chester1975]

Thanks my brother says the same thing about diet. He stays away from wheat and gluten. No bread and pasta

[Chester1975 in reply to LucyZuma]

Sourdough bread is ok. It’s full of pro biotic and if frozen and then used it reduces the glycemic index. Pro biotics is key. I can only eat one brand of pasta and it’s the blue and white de cecco one and weirdly I can tolerate that once every now and then as it’s ingredients are far superior than any others. Xx

[oldtimer2]

I'm sorry to hear you're having such a rotten time. I would say, though, don't throw biologics out of the window, but have a careful look at the types available on the NRAS website and all the types of treatment. Different biologics, as you know, target different parts of your immune system and you might benefit from one that targets a different part of the system. On the other hand, if you can get things under control on DMARDs, your rheumatologist will be very pleased - they are a lot cheaper!

[LucyZuma in reply to oldtimer2]

Yeah I have been on a number of pills and injections. I just feel like an experiment sometimes. I have a good dr but I’m always going to the office every 3 months It’s like I’m on a merry go round.

[AgedCrone]

Do speak to your rheumy team…but on the whole stopping RA meds is not a good plan.

Calmly explain how you feel & ask his/her opinion. ..& what different drugs you can be offered.

Although Biologic drugs have helped a lot of people..hundreds if not thousands do just as well on just DMards.

[LucyZuma in reply to AgedCrone]

Thanks for your reply

[Sebastian247]

I think your frustration is totally understandable. I have in the past paused medication due to side effects. Talking through things with rheumatology would be my advice. I know it can be a trial making contact and getting an appointment as well as being heard and taken seriously.

But in the long term I'm sure you're better off receiving treatment rather than not.

Don't give up. Seb

[LucyZuma in reply to Sebastian247]

Thank you. I’m wrestling with it

[medway-lady]

I had skin issues with Abatercept but not Etanercept but you say you’ve had 4 biologics and around here we are limited to 3 so if the skin issues are related to the medication then you could try arguing the case for another try or a JAK if your in the age range it’s used for. I suggest bearing in mind that RA is systematic so not only about your joints, swelling and pain. So please discuss this with your consultant and also read up on the NRAS website all the information on drugs. It might help inform you when discussing the issues further.

[LucyZuma]

I’m still taking hydroxychloroquine. I’m just exasperated. Humira stopped working after a couple of years I had swollen stiff fingers. Next on to enbrel I took only for 3 months a my ankles and wrist were really bad. The next 2 I tried I wasn’t on long. My blood counts red and white are both below normal and dr wants me to continue with Kavzara. Maybe I just need to get real and take my medicine but I’m so afraid of the side effects

[AgedCrone in reply to LucyZuma]

Believe me the side effects of no meds can really outweigh the side effects some RA meds produce.

Just ask somebody who had a relative years ago who didn’t have the choice of meds available to us these days…the visible joint problems were not the worst problems frequently experienced back then .

So soldier on & don’t give up on a drug too soon…many put up for a year until the much need relief arrives.

[medway-lady in reply to LucyZuma]

Fear breeds fear so i would suggest take it and see. And no Dr Google. I had blood clots related to RA and side effects are not so bad when death could be considered for RA as a potential risk.

[wilbertjellyfish]

If you're symptoms were well controlled on the hydroxy then it would be ok but I suspect there was a reason to start on biologics and it's likely that if you stopped your RA could get worse. It's always important to have frank and honest discussions with all your medical team for the best outcomes