Biologic or not to biologic : I got diagnosed in... - NRAS

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Biologic or not to biologic

I got diagnosed in January this year with RA. I've was prescribed MTX but unfortunately after 5 weeks of constant coughing and wheezing an x ray showed up inflammation in my lungs so I was taken off it, I then started another Dmard which caused chronic migraines ( I thought i was going to have a stroke)! So taken off them after 3 weeks. Basically I've been on steroids for 7 weeks now! My consultant is now prescribing me biologics ( etanercept ( Benepali) could anyone give me advice on on their experience with Biologics please? To what extent does it suppress the immune system in comparison to Dmards? I'm worried my immune system is going to be so bad I'll get paranoid about infections! But alas! It's out of my hands. Grateful for advice!

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I'm on week 9 of beneplai with mixed results. But everyone is different. I'd say give it a go. I've had 4 failed DMARDs and a huge fight to have my treatment progress, so if you are being offered biologics, they are certainly worth a go. I found benepali to be a "clean" drug in comparison to the non biologics.

Initially I felt a slow but steady improvement over a number of weeks , then within 2 hours I went from feeling well to being unwell. I've partly recovered, I'm so so now, benepali has improved some of my health issues, but the side effects are creeping in. I'm waiting to see the rheumatology nurse in 2 weeks time.

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I’m exactly the same and about to start on biologicals next week , I feel a little apprehensive but also I’ll try anything that may or definitely will work better , I also would like input on biologicals and if they are better than dmards , they just don’t work for me and I always end up being taken off them , but I have the same thought of how much they suppress your immune system. Pls let me know how you get on with biologicals, all the best x

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In my experience biologics (benepali) is a much cleaner drug than traditiinal DMARDs, I did not feel yeuch with it, nor have the hangover the morning after taking it. Initially I had no side effects at all, clean as a whistle.

But like all drugs it works better for some people than others and can have side effects of which seem to be creeping in with me.

However, I believe them to be worth a try. NRAS have an exellent webinar that you can listen to, on biologics, the infection risk might not be as big as you imagine.

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Thank you Mmrr, you see that s why I post on here ( not much) but because I find solice that I'm not going through this alone x

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Hi jaxine

I have just been taken off Benepali, I have been unwell since last November, and struggled immensely with chronic pain in my fingers, hands, backs off knees, ankles and feet, I have just had ultrasound's carried out by my consultant, I have now been taken off Benepali, which has stopped working for Me, I would have been on it for 3 years in November this year, prior to last November Benepali worked very well for Me, like Mmrr said, we are all different, and react difffirently, don't give in keep going until you find something that works for YOU, try to remain positive if you can, I have also suffered mentally too, as we all do, this is a wonderful forum to be part of, and you never feel alone, and are not alone!!

I hope that you get some relief soon

Best wishes

Pinklamb

X

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Thanks Pinklamb, I've always tried to remain positive, I rarely feel sorry for myself and when asked how I am? My usual response is 'Good Thanks' there no point trying to help a lay person understand the rudiments of RA! When I first posted on here - newly diagnosed - I didn't understand myself the journey I was on. It's only been 4 months for me and I only now do i appreciate that it really does take trial and error, patience, determination and a positive mental mind to get through it. I certainly have my sad, bad days where I feel despondent but then RA also effects you emotionally and mentally. Extreme fatigue doesn't help! But as always I pick my self up have a wise old word with my self and get on with it.

Thanks for your reply, I will continue to remain positive and hope this new drug will work! X

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Yes, only us with RA understand, we are made of tough stuff aren't we

Good luck

X

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Oh you're right there!

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I agree pinklamb! This is my support group as sometimes I feel not even my doctor can relate. It's different when you have ra versus treating it. I think it's hard to relate when you can't feel it. This forum is where I go to find my answers and to cope as I have found no matter how much you try to ignore it ... ra changes you. I am thankful for this forum.

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I just replied to one of your posts riddles! I have had full bloods done yesterday, next step is a call from the nurse to go through my medical history ( takes an hour) then a nurse will come to my house with my injections and show me the proceedure. So in the mean time 4 more weeks of steroids, I hate carrying around my swollen moon face😔😔😔 I'll let you know how it goes.

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Make an appointment & talk to your rheumatology nurse.

Everybody has a very different reaction to each & every Dmard, & we can only tell you our own experiences, none of which will apply to you.

For instance Mtx was not for you......but I spent 7 years on it very successfully.

With this disease there are so many things going on....including your health before you were diagnosed.

Your Rheumy nurse will have your complete medical history,& will explain how every symptom you get is not necessarily caused by your RA meds.

I'm sure we have all gone running to our doctor declaring X,Y,Z is causing our latest symptom........only to find it's not.

You are in fact very fortunate to have a rheumatologist who will consider Biologics so soon after diagnosis.......as you read more on here you will see some people wait months if not years to be offered them.

So have that talk with your Rheumy nurse, relax & keep an open mind on the drugs you are prescribed. Rule No 1 is to expect it to work....the more you fret over it the more likely you are to feel unwell....but from anxiety not the drug.

Most of us get settled on a drug that really suits us, so please look forward to your biologic working for you.

Good Luck!

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Hi, yes I totally agree with you! I myself was shocked that I got offered biologics so soon after diagnosis! I saw my consultant yesterday and was expecting to be put on another Dmard, but due my lungs becoming severely inflamed - a consequence of Mtx- she doesnt feel happy prescribing any more Dmards. I will take your advice regarding a positive outlook to biologics. I understand that biologics are very expensive compared to Dmards so I feel very happy that im being well looked after. My only concern was regarding surpressing my immune system further compared to Dmards however I'm sure I'll be good . Thank you for your reply

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Tbh...if you had a cough & a cold every month in the winter prior to taking Biologics you probably still will!

I have been on Rituximab since 2016 & have had one minor chest infection ..the only one ever.....& a few sinus problems ...but I have had sinus problems all my life. I also had Flu for the first time ever...but maybe it was my turn to prove the Flu vaccine didn't work that year?

If you keep well hydrated & try to keep away from those with the snuffles, you'll probably be no more likely to get infections than you are now!

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Yes that reminds me I will defo get the flue vaccine. My grandchildren unfortunately are always picking up infections/ viruses and it's going to be hard keeping away, but i think I'm going to have to think about me! I very rarely catch anything I've always had a strong immune system!

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Once again...talk to your rehumy team about any vaccines.

On the whole the Flu vaccine is fine as it is non live, but if you go on to something like Rituximab, you do have to have it at least one month before your infusion is due, or wait until three months after.

So keep on top of dates.

But if like me you never caught anything before Biologics, you will probably be OK.

TBH, don't seem to have had any more colds or caught any more bugs since I started on Dmards years ago & Biologics haven't been any different.

Just be sensible is my motto!

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Thanks for the advice I certainly will.

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I was on DMARDS, successfully for around 8 years, but then they stopped working as well so was offered biologics. I’ve been on Enbrel now for 10months, and I wish I had been offered them sooner. I was fine on DMARDs, and generally in remission so it’s hard to describe the difference. But on Enbrel I feel normal! Haven’t taken a pain killer for months now, and anti-inflammatories only for my osteoarthritis.

I was worried about infections too, but I have had nothing since I started. Despite snotty grand children crawling all over me, travelling on public transport and planes, living with someone who had a foul cold, and eating lovely gooey unpasteurised cheeses..... I am sensible and wash my hands a lot, carry hand gel and try not to hug sick people. But my worries have now vanished.

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Wow! Thank you so much Helixhelix, great to hear how well you're getting on with Enbrel, so reassuring to hear from you. I also have 3 grandchildren whereupon often they get some grotty infection! I'll have to refrain from snotty kisses😂😂

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Morning helixhelix

I am pleased 😌 to hear that you are doing well on Enbrel!!

I am going back onto Enbrel, after nearly 3 years been on Benepali, which has stopped working for me, had no choice in the matter at the time!! It was the nhs that switched us, it worked well for me, and am hoping that it will again!! I have had my injection Delivery today, and will be injecting this weekend 🤣 I have never been so looking forward to injecting myself,

X

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Hi jaxine, been on it for about 7 months, best yet for me: far less fatigue & side effects/nausea (MTX & Hydroxychloroquine didn’t suit me). I was scared of biologics too but no infections since on it 🤞& i’m not quite a total recluse 😊It took about 3 months to really kick in, though seemed to stop a flare in it’s tracks 2 weeks in, joints aches a bit after injection at first but stopped now, 4 months for fatigue to lessen. You can only try I guess, no one can force you to be on something: for me it was a relief after a year of dmards but we’re all different. Good luck 😉 x

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Hi, I think as Agecronie expressed it really is also about having a good healthy mindset, I've been guilty of worrying far too much about the forseable when given a new drug. But I'm in a positive mindset thanks to everyones replies. It's been a great comfort. Thank you.

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Oh yes, I forgot that it took a while to kick in! I was just at the point of giving up when it started working, but some people get results in a day!

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I've been prescribed 4 more weeks of steroids as the tendons on my wrists have swollen up! I so wanted to come off the steroids I'm only on a low dose (20 mg), but my face and neck have really swollen up and I m getting no realese anyway. But yes I will keep it mind thst it may take longer than expected to kick in. Thank you.

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Well, maybe, but really had genuine lousy side effects on others, and didn’t help as much with disease. The drop in fatigue is a huge bonus. I’m with helix, first one I’ve felt normal on, hope it continues. You can only try it i guess, all the best x

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Woukd be great to have some relief from the fatigue that's for sure. Thank you I'm it will work!

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Honestly I think I've had fewer infections and illnesses since starting Benepali than I did before.

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Me too! I did have a cold a couple of months ago, but I wasn’t ‘dying’ like some of my friends were that had some nasty viruses.

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Great to hear that Cwendyn!

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Whaleroad that's brilliant to hear! Thank you.

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I was diagnosed in Jan too. I was on MTX and that, along with eating tons of fruits and veggies took a ton of swelling from my joints. Because x-rays showed joint damage and I still had pain and swelling in 40% of my hand joints, she prescribed enbrel (etanercept). I’ve been on it for around 6 weeks and am seeing the last of the swelling go down in my joints (I was a 12 for inflammation in bloodwork when normal was under 3). I’m still taking MTX too - and that knocks me out the morning after. No side effects from enbrel injections except a reaction at the site a week after on one injection. I’m not in much pain, but do want to prevent further joint damage, so willing to keep up the meds. One thing the nurse told me is I’d I’m fighting an infection, I should skip that injection because enbrel lowers my immune system. I didn’t hear that from the dr or the first nurse, but since you had the lung infections - do ask about that. Best to you!

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Hi, yes thats good advice, I skipped Dmards when I had a chest infection, so it seems like common sence to apply the same logic. It's great that you've been getting on so well with injections. Great to hear from you.

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I resisted biologics for a while because I didn't fancy injecting but I had to relent after a bad flare. I now inject Humira with the injector pen once a fortnight and I haven't looked back

No symptoms from the very first injection. I have gone back to part-time work as an airport shuttle bus driver and have to face lots of coughs and sneezes..... i have not had so much as a sniffle in 12 months. Try it out and i hope you have similar success.

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Wow! Loved your reply, it really is comforting to read that you've got your life back. If any one is going to catch infections it's you! Gives me solice reading how well you are on injections. Thank you Ghus.

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I was on DMRADs which didn't work and caused horrible side effects so my rheumy put me on Remsima (Infliximab biosimilar) and it basically stopped the progression of the disease. I moved countries recently and the U.S. insurance doesn't cover it so they switched me to Humira. And I must say it worked wonders. In some ways even better than Remsima. I still have pain but it is very manageable- I can even run on the treadmill a little!.. as far as colds and infections ... yes you do get them more frequently. I have to have antibiotics always on hand because I can't wait to go to the doctor and get a prescription- it can take days and often it's a matter of hours whether it gets serious or not. Keep a colloidal silver spray handy to use as soon as your throat gets itchy, some turmeric can be a good addition to your diet; avoid drastic changes of temperatures, never leave the house without a scarf; run like hell if you see someone cough or sneeze. And do try to squeeze some exercise into your routine - it makes you stronger!

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Hi, great idea about keeping antibiotics at home in the event you need them! Scarf s a great idea, could be a tad hot in the Summer! but there is silk. Problem is I've got grandchildren running climbing all over me, who always seem to go down with something! I'll get a mask! Thank you

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I know hat you mean about it being hot in summer - I am in Arizona now.... so I am terrified of the drastic temp changes between air conditioned places and the street. It is not the temperatures themselves that are bad but them swinging back and forth in a matter of seconds.

Mask is a very good idea. Used it when I had to be in closed spaces with a lot of people. Might not be to aesthetic but your health is way more important than what others might think

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I’ve been on Benepali since last November. I took Pred for over two years as nothing else worked. Took three attempts to get off Pred though!

Benepali worked for me within a few weeks and gave me my life back. I haven’t had any infections, did have a cold but nothing more, no temperature or anything so all good.

The nurse that visited me with the first batch was incredibly encouraging. She has RA and is on Benepali. She works full time and goes hill walking as she did pre RA. Her first symptoms put her in a wheelchair so it’s a dramatic change for her.

Expect it to work and you won’t end up worrying about every little twinge etc...

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Wow what a remarkable journey your nurse has been on. From wheelchair bound to climbing! Just incredible isn't it when you find the right medication for RA and get your life back. At the beginning of our RA journey it's bleak! I googled far too much nonscence, however some sites informative, some down right terrifying. I experienced a plethora of emotions from standing tall, positive and with the attitude ' I will not be defeated' to the other darker side where I felt hopeless and in a state of gloom and despondency. As everyone states on this site, having the ability to message here without prejudice and freedom of speech has been my savoir. There is nothing more isolating and lonely than being on your own with RA!

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Having been on Benepali for nearly 2 years I can only sing its praises. Yes it does suppress your immune system. I have been careful if I’ve known people have had something nasty but certainly haven’t been a germaphobe. I worked in a hospital with all sorts of infection and managed to stay healthy with good hand hygiene.

When I have caught a cold, I’ve come off the injection for a week and allowed my immune system to gain some strength. I think it does take a little longer to shake things off but I make sure I do everything to help myself get better.

Like yourself, I have had an unpleasant journey with the medication, at times feeling like a lab rat, so although there are some negatives to Benepali they are outweighed by the positives.

I found it worked really quickly and my last blood test revealed that my disease level was under control.

Good luck with it, it’s worth trying 😊

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Thank you sharpsally, great to read your message! Its seems everyone has and is continuing to have great results from this form of medication. I count myself lucky that I've been offered it so quickly into my diagnosis. I am now extremely relaxed to start the injections thanks to yours and everyone's positive feedback. Thank you so much.

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Hi Jaxine, it took 10 years of Mxt and other various Dmards until I began biologics nearly 3 years ago. Was on one for 2 years Cimzia but that appeared to stop working, now in another and feeling great, first time of having pain free wrists for 18 months, I would definitely recommend you try, particularly if you are suffering. Good luck

Caroline

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The positive feedback just gets stronger and stronger! Can't believe you were on Dmards for so long before being offered biologics. You truly deserved to get the break you needed. Thank you so much for replying it means alot.

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I was on Enbrel, and Humira but they didn’t work now after nearly 3 years I'm on Benepali it works well and I do have a slight cough from time to time and a bit of reflux and some irritation of the skin site but nothing more then that .I can live with these as long as the pain is gone

Hope you do well😊

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Hi I’m on Benepaly it’s the side drug they use instead of enbrel

To be honest I’ve had no side effected except fatigue but it hasn’t done a lot for me I’m struggling with painful stiff knees and my shoulder aren’t good

Because of my painful knees I can’t walk very well or any distance

Anyway my consultant has asked me to start Methotrexate next week by injection which is how I take Benepaly and I’m abut worried because I tried the Methotrexate in tablet form 6 months ago and it made me feel awful after the first does I’m wondering if the injection will be better I certainly need something else I’m fed up with having very little comfort or mobility

The worst thing is my hands they are awful pain and stiffness and fingers that can’t grip so we will see the Methotrexate does anything

So good luck

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Can’t really help on the biologics side of things but can definitely tell you of my experience with having no immune system whatsoever that is never going to return. You’d think that I would get every infection under the sun but this has not been the case and it was knocked out over 6 years ago. I’m on baricitinib now which is pretty new for me and I’m taking low dose penicillin v with it too and low dose steroids which I will be stopping soon. I totally understand your concerns with lowered immune system but I think that it can be managed I am a little careful of being with lots of people particularly in the winter but as long as I avoid anyone mainly family and friends coming over with a virus or infection I’ve been fine so far. I always blow my nose and wash my hands thoroughly when I’ve been out in public but I try not to be too restrictive because of it. My RA keeps me at home more often than infection does. Hope it helps and the new treatment works for you without the awful time you’ve had so far.

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I'm so sorry to hear that your RA seems so debilitating! having experienced the dreadful flare in Jan ( but not since) I can totally understand your pain, however I have to be honest my RA seems to be under control! I do believe there Are different variants of this condition if I was to make an analogy of RA I woukd say now mine is a mere cold yours is flue! So thank you so much for replying it's so kind of you. X

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Hey it’s not so bad things are getting better now slowly but surely. Pain isn’t as awful as it was don’t know how I’ve coped. New consultant with new ideas who’s looking after me makes all the difference. I will get there fingers crossed. We live to fight on with a slight grimace behind the smile 😊

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Hello Jaxine, I have been on biologics for about twelve years, and Dmards for thirty years.

I think in that time i have had about three colds. I was also in hospital for ten days at one time with pheumonitis bought on by methotrexate and had to take 30 mg of prednisolone a day for a full year, then it took three more years on lower dose prednisolone to get my lungs back. I wasn't allowed to visit my dear mother in the nursing home for six weeks in case of infection.

However, I haven't had infections (touch wood), hope I don't now that I've said it! Its about being sensible, trying to stay away as much as possible from people with colds coughs etc. and yes sometimes having to miss things if I'm not feeling the best rather than risk catching something. Eating well, sleeping well etc.

I think you sound like you are doing great, well prepared, and I hope if you do decide on biologics that your infection risk is zero. Wishing you Good Luck.

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Omg! as I mentioned in my message I also had exackly the same as you inflamation in my lungs a consequence of MTX after 5 weeks of taking i and i was also prescribed pred I've had another x ray since which shows my lungs are clear, however my breathing is still rather laboured so I'm still taking pred. I'm looking forward to going on injections now. Thank you for your message and I wish you also good health

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I’m on benepali for ankylosing spondylitis, and it helps tremendously with my spinal and pelvic symptoms, but I still need mtx for the peripheral symptoms. I worked as a nurse and found working on the front line through winter I picked up infections easily. However retired due to ill health last year, and had no problems this winter. I have no side effects from it. MTX apparently also helps prevent your body developing antibodies to the benepali, so another reason why I take it

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It really does seem that this medication works so well for so many people and with little or no side effects. My concern was addressing the the extent it could suppress the immune system, and even with that it seems to be positive. I really wasnt expecting such a huge amount of positive feedback. Good to hear from you.

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