Afraid might have to start biologics

HI!

I take plaquenil, prednisone and sulfasalazine for RA.

Was on MTX with bad side effects so was switched to sulfa.

Rheumy said that if no segnificant chance in 3 months we will start on biologics.

My inflamation numbers are still high.

No change.

My Rheumy apointment is in 2 weeks.

Ive realy been hyping myself up about the biologics....

Self injecting, side effects...:(

How scary is it realy??

8 Replies

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  • Don't be scared! Many, me included most definitely, would say that biologics are the gold standard treatment.

    Of course, as with any drug, there's a chance that they will not work, or won't work well enough, or will give you some side effects. However reports on forums of side effects from biologics are few and far between and almost negligible compared to accounts of side effects from traditional DMARDs.

    Self-injecting is very easy, I can do it while watching TV, cooking, walking the dog and probably while Tango dancing though I've not tried that. If you go for the syringe the needle is very thin and personally I don't feel a thing. I originally opted for the syringe because the injection stung a little and controlling the speed of the injection prevented that. However, Humira now has an added ingredient which prevents stinging, the other biologics may be the same. And if you decide on the auto injector then it's extremely quick.

    It's worth knowing that this is a subcutaneous injection, under the skin into the fat. Which is a far cry from blood tests which go into a vein. Some people get a bit of a reaction at the injection site but usually it's no big deal. Again I have never had that and after nearly 3 years of injecting there is absolutely no sign in terms of scarring.

    But all these things aside (and chances are you won't give the process any thought after a couple of shots), the most important thing to focus on is that biologics often work extremely well. Wishing you a really great result if you do start this treatment.

  • I too was terrified with the idea of injecting myself each week and delayed going onto Biologics for two years.

    When I did start on the Embrel I got help from my wife injecting until I got used to handling needles. My phobia is now no more and I would really not like to rely on Non Biologics now.

    I hope the Rheumy Nurse calms your fears as/when you are eligible to go onto a Biologic treatment.

  • Going onto biologics gave me my life back. To be (mostly) pain free was heaven! Won't lie, I'm not totally back to my old self and it hasnt totally taken away my pain, but I'm chalk and cheese better than I was before I started them. The injections are so simple too! I was really worried about the side affects (I don't get any side effects) and injecting myself too before I started, but so glad I'm on them now. Would hate to be without them now to be honest!

    It's a big decision, but hopefully other people's stories and experience of biologics will give you the courage to go for it!

  • I'm with Postle2

    I ran across a really great way to look at taking any medication. I can't remember where I read it or who wrote it and wish I did. It's well said and worth a thought

    "Medications — all medications — have two types of effects. The beneficial ones that successfully treat the disease for which they're prescribed. They also have the potential for other effects that are not related to treating that disease. If you look of any medication, you will see a list of side effects divided into categories such as Common, Less Common, and Rare. If you look closely at that last category, you’ll be tempted to go stick your head in the sand for a couple of years."

    My experience is that a Biologic has given me my life back. There are many different variations of this disease which varies from mild to severe to aggressive to a bit more slow going. There are erosive forms of RA and non erosive ones. The point is if you were given the suggestion to try one and you trust your doctor then there is a good chance that this will help you more than what your current treatment is doing.

    Also, in my opinion, long term prednisone use is far more detrimental than a Biologic.

    At the moment, I get more side effects from a high dose of MTX than the Biologic. I didn't have any trouble with self injection either.

    We live in a great time to have gotten this stinking disease. If you google anything be sure to look at the date of whatever you're reading as it's likely before the use of Biologics and also before they changed their treatment stategy from 'low and slow' to 'aggressive and fast'.

    There are people going into remission now that years ago would have never been thought possible! Biologics are a big part of making that happen.

    It's not always fast to feel the full benefit but it's definitely worth giving it a try.

    I wish you the best with whatever direction your treatment goes and the strength to take the bull by the horns if need be!

  • Hi, as others have said, biologics can make a huge difference. When I was first diagnosed I was horrified to read that people had to inject themselves each week, I felt sorry for them but assumed that wouldn't happen to me, dmards would work and I'd be fine......well I wasn't, and by that time I was relieved to be offered biologics. I was scared about self injecting, the nurse comes round to teach you how to do it, my hands were shaking and I had to Practice on a piece of foam 3 or 4 times with a dud pen before I plucked up the courage!

    Seems funny now, because it's so very easy to do. Takes a few seconds and nowadays I much prefer it to swallowing all those mtx tablets.

    I tried enbrel first, that's a pen type. The only side effect was itchy red areas where I'd injected. It didn't work so after 6 months moved onto abatacept which is a syringe.....it freaked me out a bit that I could actually see the needle, but honestly it's a piece of cake 😊 no side effects at all and it works.....yeah.

  • Couldn't agree more with all that's been said. If they work for you, I think you'll feel reborn!

  • Don't be afraid. Most these biologics are pen injection. You just take top off push into thigh or chunk of pinched stomach and hold firm against til sound of pop.all done.might slight rash but soon gone.you get used to them and I always looked forward to day I did next injection as hoped that one would be the one that started kicking in to help me. They didn't in my case

    I know of one that is really needle injection.

    Only draw back is if you struggle with your hands.they don't make things easy

    I had nurse who came out to show me how to do first one so sure you will too.

    Good luck

  • Biologics made a huge different to me also once the 'right' one was found - been using various ones since 2003. Generally many people find there are far less side effects than the DMARD's but you need to learn to read your body and be aware that issues can escalate differently to a 'normal' person but I have had no issues. Keep one of the leaflets that come with the injection pack in your bag as many other non-rheumy doctors (or dentist) have no idea of the meds just in case and also the drug names are not easy to spell and they can then look them up. The result of the drug is well worth the few seconds discomfort injecting. As with the DMARD you may not find the right one first time and they can take up to 12 weeks to work fully.

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