Biologics...scary?

Biologics...scary?

I am going to be put on biologics. Not sure which one yet, depends on the insurance (I live in Canada). I'm really scared guys. I never took Tylenol for a headache before I was diagnosed a year ago. I was quite ill on mtx pills, then tried injections. Same. My current medication, Arava + Vimovo, hasn't really done anything other than five me violent diarrhea. About 8 months ago I started going to the gym again. I wanted my life back. And being 31 and having to use a cane was just not jiving with me. Saw some improvement, but over the last couple months I've been going downhill again. Had a bout with costochodritis that sent me to the hospital in a panic. It feels like a heart attack.

So now I'm kind of back where I started a year ago. Hobbling around, moody, depressed and in pain. I groom dogs, so I kind of need my hands to work and the strength to lift a dog. And though I can sit down to from small dogs, it makes doing a large breed almost impossible.

Any success stories or advice about which biologic you've tried or are on?

Much love guys 😊

24 Replies

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  • I'm doing well on Humira. I think the biologics can be more trouble free than the DMARDs. I know they're strong drugs but they can be very effective and many people find they finally get the disease under control.

    I did not like Arava. I know some get on fine with it, but even though I didn't have any really tangible side effects I just felt out of sorts and was glad to see the back of it.

    You know here in the UK we have to meet fairly stringent criteria to qualify for biologics. Everything I'd heard about what they can achieve made me very keen to try them and I'm so glad I did.

  • Thanks for your reply. I've felt the same on Arava. Had a hard time concentrating and dealing with depression. I really don't feel like myself.

    I have to get a preauthourization letter from my doctor. And apply for extra health coverage. As far as I know, that's all I need to qualify.

  • Yep, at least we don't have to worry about our insurance coverage - believe me, I am grateful for that.

    I so hope you see a significant change for the better on biologics. There's usually a bit of a wait for the drug to take effect though .... but you'll be used to waiting by now!

  • I am indeed used to waiting haha. I've heard Enbrel is the least successful for most people. But it all depends on what they want to try me on first. It will take 4 months for my coverage to start, so my doctor offered me free samples to use until then. I've got a really good team looking after me. Personally and medically, so I'm lucky there.

  • Me too

  • I was also scared of going on the anti TNF medication but my consultant was keen as it is so successful in treating RD. I have been on it eight years. From being bedridden I am now active and most grateful to modern medicine. xx

  • Thanks for sharing. I know the reward will out weigh the side effects. But I'm nervous of being on something do permanent. After a year, I still have a hard time believing I pretty much have an incurable disease.

  • Hope it works for me too. Am waiting for confirmation of funding which is now ok'd and having been bed ridden manyntimes since October cannot wait for my humira to be delivered.

  • For me the biologics have caused far less side effects than DMARDs but of course it is still the case of finding the right one for you and most do appear to work best in combination with a DMARD but not absolutely necessary. I don't think it matters what type of medication you need to have they are all scary at the start. I had 7 years on Enbrel, tried Humira, Rituximab and Toxciluzimab and currently on Abatacept with 200mg hydroxychloroquine (the only DMARD my body appears to tolerate). Farm

  • My doctor wants to try mtx and a biologic. I tried pills and injections for mtx when I was first diagnosed. Most medications make me feel ill though. So I guess I'll just plan injections on a Saturday as I always have Sunday off. Unless I have the infusion ones. Thankfully my boss is very understanding of my condition, and gives me the time off I need for appts and illness.

  • It can be trial and error to find the best time to inject to suit your lifestyle as effects may not be straightaway they can be 12 or 24 hours after. When I started Abatacept I moved 12 hours backwards each week till I found the best time although as time went on the effects were not quite as strong. Farm

  • Hi Chantwizzle 83,

    I am waiting to start on Tocilizumab infusions, I have been in touch with a couple of people on this website who live in Canada as I am considering living in Canada again ( I lived there for about 25 yrs) and my son and family live there. I have been trying to find out which biologics are available over there and if I need to have insurance for a doctor/rheumatologist to prescribe them.

    We are lucky here in the UK as they are provided on the NHS and I have had brilliant care by my Rheumy clinic and staff.

    The Tocilizumab some have described as a wonder drug and starts to work within 2-3

    weeks although it does take 12 weeks to get fully in your system. I am hoping to get started on tocilizumab infusions to start with then on injections in time for me to make

    my annual visit, I do want to visit for longer this year so that I can find out more about living with RD Canada.

    As Apostle2 said here in the UK they do have fairly stringent criteria to qualify even though we don't have to worry about insurance. I started on humira, enbrel and waiting to start tocili. I am unable to take mtx due to the side effects of sickness and diraahea the next day. I actually, blamed it on the folic acid I had to take the next day.

    Enbrel worked really well for me until I had to stop taking it for about 6-8 weeks due to

    another medical issue and when I had been on Enbrel again, approx 12-18 weeks my Rheumy Consultant decided Enbrel had stopped working, which isn't unusual and is the reason I am waiting to start Tocilizumab. Any information regarding biologics and in insurance in Canada would be greatly appreciated.

    When several people call Tocilizumab a wonder drug I can't wait to get started and considering what the alternative could do to my body without these drugs I dread to think no matter how scary they are.

    Good luck with your medications I hope it won't take too long to get them sorted.

    Take care, S

    ps: does the fluctuation in the weather, winter/summer effect how your RD effects how you feel? Being cold and damp here in the UK effects how I feel.

  • I live in Alberta, but I'm originally from Ontario. In Calgary, we can have all 4 seasons in a day. So the weather here definitely effects me.

    I have Alberta Blue Cross to supplement the cost of my medications. I've been speaking with them about getting more coverage for biologics, and they've said I need to send in an application for "non-group" insurance. That can take up to 4months to kick in IF I'm approved. Then I need to get a pre authorisation letter from my rheumatologist (which she's happy to sign). I'm not sure how coverage works in other provinces though. That's just what I'm dealing with here. If I'm approved, I shouldn't have to pay more than $25 for a prescription, including the biologics.

    Hope that helps somewhat.

  • Hi, thank you, that really does help, hopefully, I will only have to pay $25 per prescription or $2 per prescription for regular prescriptions in Ontario, that is after the 3 month registered waiting period, so I have been advised by a friend who use to live in Toronto Canada and also considered returning to reside in Toronto. I lived in Toronto for about 25 years and now I receive my Cdn pensions here, which is why it will only cost me $2 per prescription for regular meds. I have been doing a lot of research to make sure I will be ok on the medical and financial side of things. I did have a chat with another lady who has a private pension and has to wait until that is exhausted as far as claims then she mentioned the name of a gov't (sorry I can't remember the name) who takes over and she will get help paying for her medications. If we had to pay for the biologics here in the UK it would be very expensive. I checked on the NICE website for various information.

    I really do hope I get the OK on my last test which will be on the 30th of this month for TB, my consultant feels it failed, not passing quality assurance due to taking steroids for a long time. Fingers crossed the coming tests will show it is the steroids. I passed a TB test years ago before I started on Humira, that was ok.

    Thank you again, I really do appreciate receiving your response and I do understand that it can be different depending which province you are living in. This is the sort thing I will look into when I come over later this year if all goes well and I get on the Tocilizumab infusions and then injections before I can travel.

    I wish you well with your medications and that they find the one that suits you best. We are all different and what suits one doesn't suit

    another.

    Take care, hope you are enjoying the Easter Hols. x S

  • It just started snowing again in Calgary, so my joints are screaming right now.

    There's a 4 month waiting period here too. But my doctor will give me samples to tide me over until my extended benefits start. Biologics run about $20,000 a year, and my current plan covers up to $10,000. But that's just for regular meds. I'm hoping to get all my paperwork in after the holiday to get the ball rolling.

    My mum lives in Ontario and is on disability for a heart condition. They test her very well. Could you go on disability? Would that help?

  • Hi, I am sorry to hear your joints are screaming, I keep having flare ups and some days I can't get out of bed without a real struggle. I had to retire last August as the manager of a retirement development, the admin side was fine but I also had a physical side to my position which I just couldn't cope with. residents were helping me as they wanted me to stay, which was lovely of them.

    I am sitting in my lounge with the windows open for the first time in ages, warm and sunny which does help you to feel better especially when the sun is on my body. Do you still get low lying snow clouds that my friend told me about years ago.

    I don't know about disability benefits, I could always check into it. I don't think they consider it as a disability here unless you are in a wheelchair, not sure. They have what I think they call PPI which you have to be assessed for but I don't think I would qualify as I can dress myself etc and do most things for myself.

    When I come over, my sone hires a scooter for me when we go to the malls or to the zoo which my twin grand-daughters love me to go with them and would be too much for me to walk around. RA /RD effects my feet, legs, shoulders, hands/wrists and knees. I never know what part of my body will be attacked on any given day. It is wonderful when I have a good day, not pain free but with pain that I can cope with and I try to make the most of those days.

    I am hoping to get the biologics and feel like I have my life back and get around better without the use of a stick which is also to protect my back and to help me walk straight as I also have a prolapsed disc which I had another (3rd) MRI for yesterday as I have epidurals approx every 6 mths which really do help, the one I had last January the specialist said he thought the bulge had shrunk when making the injection with the use of an x-ray machine. I am hoping the MRI I had yesterday will confirm that.

    I am also on warfarin as I have had 2 DVT's which they say isn't caused by my long haul flights to Canada each year, but also they don't know what is the cause.

    Anyway, I thank you again for your information, it has been very helpful and I will use when I finally get over there. I am waiting for my son and family to come on skype with the 5 hour difference. I really do miss my family and hope everything will go to plan.

    Take care, S x

  • I know in the states RA is considered a disability. I follow a few people on Instagram who are on it. I hope you can find some relief.

  • I had OHIP when I lived there which you no doubt know about also living in Ontario covered most medical except dentist which is private. I also paid into HSF which is Hospital Saturday Fund and they covered partial dentist costs plus my husband worked for a union company before starting his own business and they covered the balance.

    I hope you also find some relief with the meds your GP is giving to you until your claim comes through. I don't know of a GP here that would do that. All the best, enjoy the rest of the Easter hols. xS

  • I'm in BC and on provincial disability, and Fair Pharmacare means whatever I need is covered (good thing, too!). My doctor has to get a special approval for more expensive meds, but that usually comes through within a week. I'm glad you have a good team, mine is pretty awesome, too. I'm still on mtx, and not really seeing much improvement except in my energy levels a couple days after the injection. I just came off a prednisone taper and I miss being mostly painless already. *sigh* let me know how it goes!

    -Bat

  • I've never been on prednisone. So many people I know gained weight on it. Not something I need more of at the mo lol.

    Thanks for your input!

  • I've been on biologics for over 12 years - first Enbrel for 10 years and now rituximab. As someone else replied the biologics seem to have less side effects - I'm not sure I've really noticed any. I only moved from Enbrel when it seemed to stop working. Hopefully you will have as good an experience. Take care

  • I have been on biologics for the last 14/15 years - first Enbrel for 10 years and now rituximab. No noticeable side effects. Only moved when Enbrel no longer working for me. Hope you have as much success as I. Take care

  • Hello, all the same biopics offered in other countries are also offered in Canada. I have not heard from anyone that Enbrel has the highest failure rate, in fact I have heard it works really good for many people. All the biopics fail for some people. Enbrel is one of the more widely prescribed so that may account for someone saying the failure rate is higher.

    I'm in Canada. Started in Humira but was allergic to it, starting Enbrel.

    I find doctors usual ally prescrib the easiest to administer first, then if those fail move into the hospital visit infusions, but this could just be the way my Rheumy does things. I'm Canada there are very stringent criteria you need to meet to get onto a Biologic, it's the same as in any other country, the high costs of these Meds requires that.

    I wish you good luck starting your biologic. Yes, it's a ten to twelve week wait for Trillium to be approved for each individual biologic, so if you fail on one, you have to reapply for a different one. That's where I am right now, as my private insurance is maxed out.

  • After ten or more years of highly active RA I have also been funded for HUMIRA. Am so excited, taking sulphasazine on its own at the moment due to MTX affecting my skin so badly. Have heard that the biologics are life changing. Have been on steroids for 4 months now and have had the munchies and put on 1 and half stone!!!!!!

    Look like a hamster and and easter egg all rolled into one.

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