First enbrel injection! reaction or normal?!

paperboats

Dear All

I just had 5 days ago my first enbrel (etanercept) injection and struggling with a severe flare up, tiredness, stiffness, involvement of new joints (shoulders). I feel like shivering in my whole body, having cramps in muscles that I didn't even know that they exist, most probably as reaction to inflammation.

Did anyone else had same reaction, worsening and flare up after the first enbrel or other anti TNF injection?

I 've been diagnosed with inflammatory arthritis since Jan 2010, seronegative with all other antibodies negative, involving almost all joints of my body, symmetric, including cervical and lumbar spine. My doctor says that it must be psoriatic due to the fact that my brother has a typical psoriatic arthropathy (nail and distal join small finger) without psoriasis.

I was for 3 months on sulfasalazine. I had to stop it due to worsening of my arthritis and drug related, severe muscle weakness and stiffness. I was then on methotrexate for about 6 months (up to 20mg/week), also stopped due to lack of benefit. After stopping I realised how many side effects I had, most important the worsening of my arthritis and muscle stiffness.

The following 2 months were maybe the best in my last 18 months. Only on diclofenac 100mg/day, pain ok, a bit of swollen joins, however no solution for the future.

On enbrel now, remarkable and severe flare up just 3 days after the first injection and wondering..

why I am always getting worse after I have started an immuno modulating therapy?!?

thanks!
s

skezier

Hi S

Welcome to the forum and this lot are a good lit and someone will know the answer i am sure.

I am not sure why you feel worse and flare when treated but not when you aren't flower but when do you next see your rumo? I have pa and like you reacted to the sulfa and the mtx was 25 on the tablets but did damage to my stomach so changed to the injections and now on 25 on them as well with little to no result but i can't get funding so I don't know about the anti's.

i do think you need to really get them to find out why your worse when your treated. Might be an idea to keep a diary and just jot down things as if your like me you forget all but your name as soon as you walk through the rumo's door. If you have swelling it can help to take a photo of it as sods law means it will not be swollen the day your seen. It might help get a better diagnosis and maybe a bit more help for you. Nice to meet you and I hope you get a bit more help there. Cris x

frogmorton

Hi S

I too have seroneg arthtitis and a bit of OA thrown in for good measure!

Sorry to say l am not much use to you as i am doing ok still on hydroxy and colchicine.

But l agree with you it can't be right that you feel WORSE on your medication :???:

Hopefully there might be someone on here who has had this experience. I know others have had reactions, but your symptoms are worsening????

If l were you l think l would be looking at getting a second opinion...Cris' idea of keeping a diary is a good one and one l would definitely do if l were you so you can prove what is ahppening and when and for how long objectively.

Please do keep in touch

Love

Toni xx

dreamdaisy

I tried enbrel. It did nothing to control the PA, it did not stop flares etc and greatly amused itself in trying to explode my liver. I felt OPK when that happened, it was the blood tests that picked that up, so please be conscientious about those.

I am currently taking humira, injected meth, 6 sulph tablets a day, a fair amount of pain dullers and oral steroids. Of all of that it's only the oral steroids that make any sort of noticeable difference to me and how I cope with the PA. I love 'em so for that reason I am weaning myself off them. The very idea - taking a drug that helps. Ludicrous.

We are all different in how we react to these meds. I have never had any severe adverse reaction to anything - the sulph initially caused huge bruising and now tinnitus, but that is all. I am in the ninth year of taking that. The meth has been fine, infliximab stopped working (or so I thought, now I wonder), the enbrel did what it did and the humira has been OK, so far. I feel moderately better/brighter for four-six days after taking it, then slide gently back down into global grottiness until the next belt of it. (I take it fortnightly).

I think these things work better if they are given early: in my case I had five years with no treatment, then a further two on sulph and meth, only then was an anti TNF introduced. Far too little, far too late, methinks. I hope the enbrel does begin to get things under control for you, and soon. I think they reckon anywhere between 2 -12 weeks, how long has it been for you? I don't recall reading that bit, but then my concentration ain't what it used to be! I wish you well. DD

frogmorton

Hi

Just calling in to see if you are feeling any better today?

I do hope so, or that you have taken some medical advice maybe?

Love

toni xx

paperboats

hi guys

I really appreciate your supportive comments and help!
Thank you so much toni, you are lovely!

I am feeling really good again, flare up settled down since yesterday.

I am really wondering how I could have such a "different" type and more severe flare up after my first anti TNF injection as it is uncommon and nobody else in the community forums reported a reaction like that. I am thinking if the flare up was indirectly connected to the more effective immuno modulatory action of Enbrel and something else like an infection, without obvious signs, could cause the flare. It is indeed remarkable that I had a significant worsening of my arthritis with involvement of several new joints and axial spine after 4 months on methotrexate, when it starts to work, and everything was completely gone 2 weeks after I stopped it.

I suggested to my rheumatologist to check the serology for opportunistic infections like HSV I, VZV, CMV, EBV, HPV and maybe shigella, salmonella and yersinia since antibodies for last one were positive in the past.

He feels it is not necessary to do that. I should have my 2nd enbrel injection today. If the same happens then we would switch to another anti TNF.

I am scared..
x

skezier

Hi S,

Good to see you again and glad your feeling a bit better. Sometimes the anti's seem to make people feel rough for a min after they have them and with luck thats what you have and it will settle for you and be ok?

It might and I hope it will. Sometimes all we have to cling on to is hopes..... thats what this lot are so good at, if you lose yours they lend you some of theirs.

Easy for me to say but try not to feel too scared cus it might still work for you.

What sounds encouraging is you rumo seems to be really looking at you and well just hang in there and hopefully the other things have gone now. I think we all react differently and with a bit of luck your 'side effects' will ease off as your body adjusts and responds to the enbrel.

There have been folks who have had reactions and some have found their symptoms get a bit worse after some of the anti's its just they don't come in too often but just hang in there and try not to get scared flower as worry does us no good at all. ((( ))) and a bucket of strength and hopes. Cris x

paperboats

you are all so wonderful!
thank you
just had my 2nd injection!

frogmorton

Hi paperboats :shock:

Oh bless you l would be terified too, but you are right to have had the injection.

I hope you have NO reaction at all (bad) and lots of positive results instead this time.

Have you ever wondered if the Docs don't always like 'informed' people such as yourself??? You probably asked questions they themselves hadn't even thought of!!! ( compliment!!)

Love and hugs and hope

Toni xxx

skezier

Hi S,

You hang in there and with luck this one will be so much better for you and it will start to work. Leaving you an anti scared draft and a ((( ))) Cris x

crush

I am in the U.S. but this is the first thing I found when doing a search on anyone feeling worse after taking Enbrel and I am so relieved to see I am not alone! I just took my first Enbrel injection this past Sunday and I am definitely feeling worse.

Let me give a bit of background:
Was diagnosed with and treated for RA for 7 years before Dr. decided I had fibromyalgia. It has been about 10 years since and in addition to the fibro, I also have what they believe to be reactive or inflammatory arthritis. In the last year, the pain in my spine and hands has been incredibly severe and the Dr thinks there could possible be some OA. I have been on all of the meds including lyrica, cymbalta, NSAIDS, anti-inflammatory, muscle relaxants, pain meds. I was functioning much better for several years until about a year ago when Darvocet was taken from the market and the spinal and hand pain got so severe. Dr. recently had me do a 10 day period of prednisone and it really helped, so she wanted to try Enbrel.

So, I had the first injection this past Sunday and I wanted to imagine I'm crazy but seriously I feel worse. All of my muscle pain is increased and I'm feeling it in more places than before. I basically feel miserable. Fatigue is worse...etc...etc. Some of my other "associated" conditions like irritable bowel, costochondritis (sp) feel a tad worse too. I also have something that suppposedly isn't related to the A or fibro called granulomatous rosacea, which I haven't had a flare of in atleast a year and that has suddenly gotten way worse.

So, I am wondering if anyone else has experienced this and if so, did you feel better with time? Do I give the enbrel additional chances or do I ask the Dr. to try something else?

I just dont know what to do. Any advice would be greatly appreciated.

Thanks!!

Christen

dreamdaisy

These are very powerful meds and they can indeed make one feel worse rather than better. I am reaching the end three weeks without the humira and meth (I had an infection that required penicillin treatment) and I cannot believe just how well I am feeling. It's lovely.

I don't have side effects as such from the H&M, but I do feel as though I am swimming through treacle all the time. This past few days I have actually had some energy, for the first time in years. I too have OA (nothing helps that) the H&M is for the psoriatic arthritis.

Arthritis is a tough disease to 'treat' and as such it needs tough meds. Stick with it, Christen, be conscientious about the monitoring, that is SOOOOOO important, and I hope the intial worsening soon ends and you begin to feel better. Paperboats has not come back since then, hopefully because it's working for them. Take care and keep in touch: the health systems may be different but the ill-health ain't! I wish you well. DD