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biologics

oliviagodfreyxx profile image
19 Replies

hi all! long time no post! i hope you’re all keeping well!

i recently finished my antibiotics for my latent tuberculosis. whilst on these antibiotics i was stopped from starting new biologics. my methotrexate was doing more harm than good and i wasnt getting on very well with it, therefore my rheumy suggested i start biologics after my antibiotics.

whilst on my antibiotics my pain was bearable, however now i’ve finished them i’ve noticed that my pain has flared up again and i’ve been in a bad flare for almost two weeks. in my knees, fingers, wrists, shoulders/arms etc. im reluctant to start biologics as i’ve not really been on anything other than hydroxychloroquine for my arthritis since last year and even that isn’t really helping now. i’m reluctant as it’s a new med and i REALLY really really do not want to gain weight. i know everyone’s different but it’s such a big fear of mine as i have such a lack of confidence etc. the biologic suggested for me was Etanercept. has anyone had any experience with this drug or had and weight gain/bad side effects etc. obviously i won’t know until i try but i wanted to hear other peoples opinions or maybe another biologic that has worked for them. thankyou!

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oliviagodfreyxx
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19 Replies
helixhelix profile image
helixhelix

I am on this and have not gained an ounce! All it’s done is completely controlled my RA, and put be back in remission.

It has a very short half life, so if you don’t get on with it it will be out of your body in days. The only downside from my perspective is that the injection is a bit “ ouchy” for a couple of seconds. But even that is better now.

oliviagodfreyxx profile image
oliviagodfreyxx in reply to helixhelix

thankyou very much x

Hezekiah profile image
Hezekiah

Etanercept comes under various names, including Enbrel which my son takes, and Erelzi which is a biosimilar. Do you know which variant they are offering you?

"It's unlikely that taking Enbrel will cause you to gain weight. Weight gain was not a side effect seen in clinical trials. However, weight gain may be caused by congestive heart failure, which is a possible serious side effect of Enbrel."

"No, Enbrel shouldn't cause weight gain or weight loss. These side effects weren't reported in studies of Enbrel. However, unexplained weight changes can sometimes be a symptom of more serious side effects."

It is easy to find leaflets about Enbrel by searching on the internet

medicines.org.uk/emc/files/...

accessdata.fda.gov/drugsatf...

These detail potential side effects.

Of course, it's the usual story. Some people may have the side effects, but many more won't, and reading about therm can be worrying. Causing you unnecessary worry sometimes. Better to read, and absorb, but stay mentally very positive and don't give in to fear. After all, many folks are benefiting from this expensive treatment, and feel very fortunate to be allowed to have it, Some may even feel that it brings about such a good result that it is almost as if they are in remission from their RD, apart from the weekly injection.

I hope others on the forum will also offer words of positive encouragement to you on this.

oliviagodfreyxx profile image
oliviagodfreyxx in reply to Hezekiah

thankyou i will definitely look into it! i’m not sure what variant they are offering me but it will be a question to ask x

Yes I am on it (benepali) no it hasn't made me gain weight x

oliviagodfreyxx profile image
oliviagodfreyxx in reply to Marionfromhappydays

thank you x

Jackie1947 profile image
Jackie1947

I've just had Mantoux test, negative, awaiting blood result 🤞 I tried antiobitics x 2 for latent TB a few years ago now but set me off on a phychotic episode. Very frightening.

Jackie1947 profile image
Jackie1947 in reply to Jackie1947

Update. Mantoux test negative so we're bloods.

KittyJ profile image
KittyJ

Hi Olivia, I’ve been on Etanercept for 3 years and I have not put on any weight, in fact I’ve been able to finally lose some weight because my mobility/activity level has improved so much since being on it. It’s not one of the newest biologics. Fingers crossed for you, give it a try and let us know how you go.

oliviagodfreyxx profile image
oliviagodfreyxx in reply to KittyJ

that gives me hope! i’ve not been able to go to the gym due to pain so fingers crossed this drug will allow me to! i will :) x

AgedCrone profile image
AgedCrone

Don’t hesitate…I have been on a Biologic since 2016…best med I have been on since diagnosis in 1999!Don’t dwell on what happens to others who have a bad experience on any drug….what happens to others is not going to happen to you…..we all start from a different place…so we all have different reactions.

Good luck with the Etanercept…your Rheumatologist will have suggested this Biologic …..that from his experience will help you…but as we all know…..RA is not an obedient disease….let’s just hope it’s on its best behaviour for you.

oliviagodfreyxx profile image
oliviagodfreyxx in reply to AgedCrone

thankyou very much x

Pixieouchy profile image
Pixieouchy

Hi I’ve been tested for latent tb blood test and the one they put in your arm and go back 4 days later to measure the result I was 5 so it was border line .My blood test (I had many)just to make sure we'll they were positive and negotiate Dr said I could be the medication I was on (mtx )that gave the miss reading of the tests .Long story short I decided to take RINVOQ just 1 pill a day cause my hands can't do injections (another long story ) .I been on it 4mths now ....it's great no side effects AND no pain .You just have to try something it may just work for you.I was hesitant but I am glad I tried something .I was pretty sure I didn't have LTB cause Iam a home person and don't travel.

Because I hesitated my hands got damaged .😟and mtx just wasn't strong enough with side effects .Best of luck .

oliviagodfreyxx profile image
oliviagodfreyxx in reply to Pixieouchy

thankyou very much x

Feank profile image
Feank

Hi, I've been on benepali for 9 months now and feel great! Methotrexate gone...my head is no longer full of cottonwood and I'm back to feeling energised with less pain and no weight gain! It stings a bit when injected but the gain is well worth the pain! Good luck.

oliviagodfreyxx profile image
oliviagodfreyxx in reply to Feank

thankyou very much x

Otto11 profile image
Otto11

I was on Etanercept first Biologic for me 18 years ago. Unfortunately it didn’t work well enough but no side effects or weight gain. I was swapped onto Adalimumab Humira which is similar & was on that for 12 years with no weight gain. Good luck x

oliviagodfreyxx profile image
oliviagodfreyxx in reply to Otto11

thankyou very much xx

Mmrr profile image
Mmrr

I began my weight loss journey when I came off MTX and started benepali. I've also read that some of the newer biologics are in clinical trials as possible weight loss meds, but I can't find the link.

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