Biologics: What is your experience with them?

General Medications
1

Hello everyone,

I am soon to be embarking on a new journey with Biologics medicines. I have been on many medications and non-medicinal treatments over the course of my illness as I've had PsA for over 15 years now! Yikes!

I would like to hear what everyone has to say about Biologics, the different kinds, their experiences with them working/not working, to what extent, side effects short and long term, comparisons to other treatments/medicines, etc.

I have read lots about Biologics online, but I like getting my info straight from the horses mouth so please share.

Thank you! :)

2

I've been on one or another biologic for 11 yrs. I have had no serious infections or hospitalizations from them, no cancer, nothing. I get maybe one extra cold a year. I started at age 29 when my second child was 12 months old and I am 40 now. Some of them worked great and put me in remission. But then stopped working after a year or two. For me, biologics work better than anything else. I've had PsA since age 10, and have tried pretty much every other med and diet / alternative treatment out there. Biologics work better than that for me.

Some people do not respond well, and some people not at all. It's a matter of getting on the medication merry-go-round and seeing what works.

3

I have been on all the biologics except Remicade which I will probably go on in January, for the past five years. I have had PsA for at least 30years or perhaps since birth. The biologics work well for me for awhile and then slowwly they stop working for me. I may be developing antibodies to them. I also take mtx with some effect. In reading past posts on this site you will see a lot of information on the use and side effects of these drugs. The cancer rate in biologics seems to be so small as to be insignificant. I do not ever have to not take either drug as my doctor told me not to take it if I have a significan t fever. So far that has not happened. My colds last a little longer but I have been getting less of them not more I believe as I am no longer working and my kids are grown. I do use antibacterial gels when out and about and wash my hands frequently and keep them away from my face until I have washed my hands well. I also wash down surfaces at home if my husband gets a cold, so far this has not helped! Welcome to this site! You will find lots of good information and a wealth of options to choose from!

4

I've been on Enbrel for about 13 months now. I'm incredibly happy with it. My PsA is in complete remission and I've had no side effects. I don't do anything special to keep from getting sick and during these 13 months I've had one very normal cold and nothing else. I love the stuff. I wish I could golf so Enbrel would pay me to say this, they sure do make enough money from it! But for me it works and it works well.

5

I’ve been on remicade for about 15 months now and it has been very effective for the most part but for the last couple of months the pain in my knees, elbows and now my hands has returned. It could just be a flare up. But I’ve developed a rash also and since I’m new here I’m unaware of wether or not that’s normal for this?

6

I started Enbrel 10 weeks ago. It was helping so much and it is still helping a lot. As a person that gets lots of sinus infections and URI I was concerened with taking this med. I have had one URI and my primary doc said to keep taking the Enbrel while on the antibotics. I am now starting with another sinus iinfection and feel lousy. But I do feel better than before starting the Enbrel. I also HATE shots so if I feel like it is worth the shot it must be helping.

7

You can get Enbrel in dry form with no preservatives.

8

fairmaid, was the Enbrel helping you in the four weeks you were taking it?

When Enbrel first came out it was in dry form. I think it's very easy to re-constitute, you get a vial with a single dose in it and you put in distilled water up to the fill line, or something like that. I believe that it only comes that way in 25mg increments so would have to do it twice.

I get the pre-filled syringe, and I get a slight reaction, but it's not enough to make me want to bother with powder. But I did go to 2x25 per week instead of 1x50. Spacing it out keeps the amount in my body more level and it means if I get sick I can get it out of my system faster.

9

Hi,

Yes i remember some of it , from getting Enbrel in 2000. It was a kit, we had to mix. The water was already in the tube for us.

I injected twice a week then, 25 mg....That was for RA...And when i got diagnosed with PSA also, from the peelings...i was given 50mg, twice a week, but that was 3 yrs ago....and that is supposed to be for 3 months only, for PSA, then a smaller dose.

I always got huge bruises injecting on thigh, so when i did Humira ( even wkly), or Enbrel, always injected on side of my stomach, and didn't bruise much. But some ppl, do have a raction, need Benadryl, or discontinue med

.I did have a reaction to Remicade, funny, not the first one, maybe the 6th one. They stopped it, and gave me IV steroids and benadryl ....and resumed infusion. So now every Remicade i get the same protocol

I'm getting another opinion on 12/19...Remicade really helped the peelings, pustular, they went away, most of it...But it does wear off for me, too soon,. I get it every 6 weeks.The only other thing would help is prednisone

I'm off diabetes meds now, lower readings off prednisone...so i am going to tough it out, somehow

Good timing, i see new rheummy on the 19th, and get infusion on the 20th ( won't tell staff yet if i stay with new doc)

and rheummy will see the inflammation i get before next Remicade

10

LOL, Debi

My eye surgeon has PSA. Before i got diagnosed with PSA, i had RA...and always wondered about the differance...Well, now i know!..

It was in 2001, i had both cataracts out, not from prednisone...Born with them!...and didn't know till i got on plaquenil, and needed more eye exams..It was my miracle surgery, only need glasses to read now, from a 20/400 preswcription

but anyway....an eye surgeon, doing laser surgery etc, with PSA?...he darn better be on a biologic...We always talk about them, he is on humira now

I will find out when i see him in January or so, which biologic he is on now. He might have skin involvemnent, he always has long sleeves on, and turtleneck, maybe...i can't be nosy and ask him....LOL

11

I looked at Simponi's drug study. It doesn't look bad but whereas Enbrel looks pretty tame to me, there's a few side effects reported for Simponi that scare me. For instance less than 1% of the people in the Simponi arm of the study got sepsis or septic shock. I think I would want to know the how much less than 1%, like was it one out of the 1600 people in that arm of the study, or was it 13 of them? Was the septic shock likely caused by the Simponi or were there other circumstances?

It's probably nothing, but a 0.5% chance of getting something major per year can add up over 10-20 years!

Perhaps I'm being naive, but I saw nothing like this for Enbrel. All of the really bad stuff was in the one in several thousand range or even rarer.

12

I'm not trying to say Simponi is bad, or to stop taking it. I'm just saying what impression I got from the information. I had thought one TNF blocker would be like another. Maybe they are and maybe what I'm seeing is a fluke or I'm misinterpreting it.