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Enbrel users--is anyone having odd side effects?

I've been using 50 mgs. of Enbrel weekly for the last 2 years.  It worked a miracle on my RA, but in the last 6 months, I was diagnosed (through a CT scan) with an inflamed colon with significant scarring (had a colonoscopy in '14, and it was normal); An EGD (in Aug. 2015) showed inflammation in my stomach; My pancreatic and liver enzymes have been out of whack since Nov. of 2014; I have chronic pancreatitis, and 3 weeks ago was diagnosed with Mono--despite having no fever or sore throat---but the lymph nodes in my neck, armpits, abdomen and groin were incredibly swollen, but not painful. A week ago, I was diagnosed (through an X-Ray) with COPD.  I'm convinced that there is a correlation between these things and the Enbrel.  Have any other Enbrel users been diagnosed with any of these inflammatory diseases?  My gut feeling is that the Enbrel truly is the cause, but it has worked so well on my joints, I'm hesitant to try anything else.  My Rheumatologist is going to argue with me about my hypothesis, but I know my body.  Can anyone give some insight?
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Avatar universal
Hi Sharon,

So happy you are seeing a new RA Doc.  You sound like you definitely have all your ducks in a row and are ready for your 1st appointment with your new Doctor.  I hope that you will have an excellent outcome and he WILL listen to you.  You are so correct when it comes to YOU nm knowing your own body better than ANYONE ELSE!  

What Tuck says is true, that some Doctor's don't appreciate it when we speak up, but if you do it kindly and nicely hopefully he/she will at least hear you out.  I'm hoping he/she will really hear what you have to say and respect your point of view.  I'm fortunate enough to have a Doctor that does listen and takes everything into consideration.  I hope you will be as fortunate.  :)

I'll be looking forward to your updates. HANG IN THERE and vent ALL YOU WANT!  That's one of the reasons we're here!


Best wishes...........        Sherry    :)
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547368 tn?1440541785
Great News!! No COPD!

I've been the victim of several overzealous radiologist. It's maddening. If they had any clue to what they put we patients through they would be ashamed!

One of those times I was DX with Ovarian Cancer - by a radiologist, on a Friday. I was terrified till I was able to consult my OB/GYN on a Tuesday. I was as angry and I was initially frightened when my physician assured me it was an error a few days later. She did explain that the radiologist had missed an Ovarian Cancer awhile back and that haunted him. It caused him to over DX. When I heard his story/reason I understood a bit better. I still think it's unexceptionable.  

I am so glad you've got this off your plate. I'll look forward to more good news from you!

Take Care,
~Tuck

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Avatar universal
H Sharon.  :)

Yes, sometimes mysterious things can lhappen to some of our posts. LOL!

Tuck and I both will be looking forward to your updates.  Hope you are FINALLY able to get your answers that you deserve to have.  I'm so glad they realized the error in reading your X-ray.  I know that was a relief to you.  One less thing to have to worry about.  It's not something you want, as you know.  

GOOD LUCK and we'll be looking forward to your next update.  Hope your week is also a good one!               ...........      Sherry    :)
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Avatar universal
Hmmm, my reply to you both was somehow deleted.  Anyway, I saw my Nurse Practitioner and I don't have COPD.  The radiologist had read it incorrectly (as I thought was the case).  So, I'm glad I questioned the diagnosis!

I'll let you know what my new Rheumatologist says next week about the Enbrel

Y'all have a great week!
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547368 tn?1440541785
Thanks Sharon for updating me. It sounds like you are the best kind of patient - one who takes responsibility in their care through good education. It's our body and we are our own best health care advocate.

It's been my experience that most physicians don't like to be wrong or take directions from their patients. Crazy huh? They do have years of medical training that we obviously don't have - but no one knows their body better than the patient.

Be assertive and kind - I know you will. I'll look forward to hearing how your appt goes.

Warm Regards,
~Tuck
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Avatar universal
Thank you so much for your concern!  It's nice to have a site where I can 'vent' and get support from folks who 'get' me!

I'm seeing a new RA doc next week, so I'll be taking all of my research.  Luckily, I'm one of those people who likes to know everything about my illnesses and the drugs I use.  Doctors don't really appreciate my knowledge (lol), but I'm the only one who really knows ME.

I'll keep you posted!

Thanks again---
Sharon
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Avatar universal
Thanks for your concern, Tuck!  I've done so much research on my drug---I HAVE to---doctors sure don't seem to know about side effects (lol).

I see a new RA doc next week and I'll be taking all of my research.  The evidence is overwhelming that Enbrel is the culprit.  I've had 4 chest X-Rays for shortness of breath (which is more from exhaustion than anything else)---Nov. '14, Feb., Mar., June and the one last week.  All have been 'grossly normal' until the one that 'diagnosed' the COPD.  The only time COPD shows on an X-Ray is when it's in an advanced stage...so I'm wondering about the radiologist's ability to diagnose.

Luckily, I keep great records, so I'm hoping that once the doc see ALL the data ( from my PCP and gastroenterologist) someone can figure things out.

Thanks again, and I'll keep you posted!
Sharon
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547368 tn?1440541785
Hello and Welcome to our Arthritis Community. I'm glad you found us but sorry to hear about your recent medical changes. You must be very concerned and my heart goes out to you.

I don't take Enbrel - but I do know ppl that have taken the drug. One young wife lost her husband to an inflammatory bowel disease - she insists he became worse when Enbrel was ordered and that it was responsible for ending his life. I can't say that is a certain fact - however the widow would otherwise.  

Enbrel can cause serious side effects. Your Rheumatologist should not argue with your concerns - if he/she is educated about Enbrel - which I am certain they must be.

Enbrel is an immunosuppressant, it can leave the body more susceptible to serious diseases. We know that our body needs it's defense system intact to fight off infections and other disease. Enbrel's action disrupts our body's natural defense system - which is why it helps reduce the symptoms of autoimmune disease conditions.

Enbrel has been linked to serious side effects - for an example - In 2008 the FDA required the manufacturer to strengthen the warning on the label to inform patients about the risk of contracting a fungal infection while using the drug. FDA is slow with their warnings and requires an overabundance of proof to require drug manufactures to change their warning labels - or even discontinue the manufacturing of the drug.

Enbrel may not have actually caused your new medical conditions - but it could have made the climate right for developing them. I can't and won't tell you to discontinue the use of Enbrel - that must be between you and your physician. I can say that I would have a long discussion and voice my strong concerns.

Our physicians are not Gods. Our body is ours - and we've only got one. In the end it's up to use to decide on treatments, medications and so forth. Our physicians should be our guide but it's our choice.

I don't mean to frighten Enbrel users. For many ppl Enbrel is a wonderful medication that causes no serious side effects and brings great benefits. There are many testimonies that support it's effectiveness. However with any drug, (even Aspirin) that doesn't apply to 100% of the ppl.  No one should discontinue any medication without first consulting their physician.

I am hopeful your Rheumatologist will listen to your concerns and address them. Life is often about weighting our choices with pros with the cons - and again this is your life so weight well.

Please let us know how you are doing. I'll watch with interest for your updates and input. I wish you the very best.

Take Care,
~Tuck
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Avatar universal
Hi actress. :)

First, let me tell you how glad I am that you've found our Arthritis Community here on MH ( MedHelp ).

I'm so VERY sorry with what you are experiencing.  I've never taken Enbrel since I have Osteoarthritis and not Rheumatoid but in going to the Enbrel.com website and reading the side effects, I would be extremely concerned about the side effects that you are experiencing.  From everything I've read it doesn't seem out of the realm of possibility that at least some of your problems that you have.  You should get hold of your Doctor immediately and go and see him and talk with him.  See what he says and if he doesn't have answers for you if it were me I'd consider consulting other Doctor's.  You need to check with your gastroenterologi the and find out what you need to do as well as any other you need to address your numerous problems.  I'm so very sorry for everything you are experiencing.  I know how difficult this must be for you when this medicine helps your Rheumatoid symptoms so well.  

PLEASE let us know what you find out from your Doctor's.  I'm very concerned for you.  There my be others along later.that have personal knowledge of Enbrel but I HOPE you will take the time to check out the Enbrel site:  enbrel.com.

I'm thinking of you and will be looking for your updates. Best wishes......  Sherry   :)



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