Enbrel

[smittygirl]

Anyone taking Enbrel?   Got my first shipment today and want to wait for the weekend to inject in case of any side affects.   Any feedback would be greatly appreciated.   Thanks


Smittygirl

[blumax1]

Can you describe your "nodules" on skin??

Re RA, only thing I can add now is 2 close friends who have tried most of the really heavyweight meds for years - have been on Enbrel for a year or more and obtaining very good relief.  Luck to all.

[njw753]

Hi ladies,
Well, this is a first for me.  I'm having a flare.  I woke up one morning and couldnt get my wedding ring on.  It happened over night.  My hands have been bothering me quite a bit along with my lower back.

So, doc has upped the methotrexate, so we'll see how I do in the coming weeks.

nancy

[sheraf61]

I have been suffering from RA for 10 years that i know of for sure.  Tried several drugs, meth., plaquenil, etc..  A year ago i went on the Enbrel, and also still taking the arava, i also have found i am feeling like a new person.  I went from needing a lift chair or help getting up and down too being able to do almost anything. But with the Enbrel it took a while for it to start working.  Now i can tell when it is time for the next injection.  I am not pain free, but i am far better then i was.  I also have the throat issue.  I choke on alot of things, because my throat doesn't allow much to go down. Never really thought it could be a side affect from the enbrel, but willing to live with that over the pain.  With my RA i also have got nodules from head to toe, have any of you got the same thing?  I have 23 in my lungs alone, having surgery to remove a few off my arm on the 19th of sept. One more thing i would like to tell you about the enbrel, I have only had one severe flareup where couldn't do anything, not even walk dress etc.. steroids and morphine cleared that up fast.  I have enjoyed reading all your stories so keep in touch and i wish you all well.  Sheryl

[njw753]

Hi ladies,
It's been awhile....how are y'all doing?
Nancy

[msfergy]

Well sounds like I am gonna keep trying it, what is ketoprofen? I have done 7 shots so maybe it does tak time. My Bone Scan does show  RA in my spine so this enbrel would still be good for that even if I don't have the AS, I am still confused as in how my Doc diagnosed me with that, my bloodtest show no inflamation but there is inflamation in the bonescan also in the Sac Joints, he is comparing me to another patient of his so maybe he is doing the right thing, i am just scared it might be Lupus but he said noooooo I dont look like a Lupus patient but you don't have to have visible signs but however if it was lupus wouldn't the bloodtest show inflamation? Grrrrrr Fergy is going crazy! KIP Ladies I need yer help here.

[smittygirl]

MIRACLE!!!!    Had my 9th shot Sunday and started taking the ketoprofen again with it.  I have had 5 straight days of no pain, no stiffness for the first time in 4 years!   I am sooooo happy!   The doc wanted to switch me to Remicade but I am sticking with the Enbrel.   Fergy, so sorry you are still going through so much,  Nancy, how is life treating you?  Thanks so much for thinking of us.  I start my dream job next week and can't wait.  Taking my bike to the shop today to get it tuned up, going to try and start riding again.    

[msfergy]

Well went back to Ortho today, said my bonescan shows a fracture on the joint my right hip goes in so he sent me down for a MRI of both hips and now i go back next wed., he said this is rare for the joint to be fractured not the hip so i dunno what they will do.

[njw753]

Hey ladies,
Time for an update.  How are you all doing?
Nancy

[msfergy]

Hope a injection works, so far no luck on my lower back and about to beg for surgery.

[njw753]

Fergy,
I'm no doctor, but from you have going on, the neural surgeon sounds like the type of doctor to go to.  I too, had herniated disks and had an epidural which took care of them.

Wow, you sure have alot of stuff going on.  I really feel for you.  Fibromyalgia will also make you feel tired.  I wish I had better advice for you.

Please keep us posted on how you are doing.
Nancy

[msfergy]

I have DDD,Facet Joint Disease an minimal Spinal stenosis plus some degeneration on the SI Joint All that is in the Lower back, my C Spine MRI showed Herniated Disc from L3 to L5 and said something about minimal nerve inpigment, I have a apt next week with the Lumbar surgeon and the week after that with the neural surgeon so maybe they can help me out here. My biggest issues are pain that radiates down the right leg chronic for a year now and my neck always feels swollen but strange the front also does plus my hands go numb when the are a certain way and my legs also if I sit close to the floor a certain way may I have both, and the pain doc told me last week I have fibromyalgia and nothing is wrong with my back and said he looked at my MRI films well I dont think a radioligist would put all that on there for no reason and he said he doesnt think I have AS either so I am just LOST. I have been really tired since I started that enbrel, have you?

[smittygirl]

Nancy is right on the $ when it comes to ortho  advice.  AS as I'm sure you already know is an auto immune disease so a rheumatologist is exactly who you should be seeing for that.  Now it is entirely possible that you have something else going on with your back other than the AS.    Nancy I have checked out the AS forum, just need to spend more time on it. I did join the ASA and have received some great literature from them, thanks for the info you gave me a few weeks ago about it.    It is a beautiful day here on the Island and the pup and I just came back from a nice long walk on the beach and now it's "couch" time!  I did get another shipment of the Enbrel yesterday and will continue to take it until I can get the Humira.   Fergy it just so happens my new job is managing an orthopedic surgeons office, I start June 2 so keep me posted on your situation ok, I'll see what I can find out for you from my doc.    When u are up to it tell me what exactly is going on with your back and why u think it is not related to the AS.  Nancy, so happy for you that the Enbrel works.  It' s always great to hear from you.  Be well and enjoy the day.  

Warm regards,
Sue

[njw753]

Oh Sue and msfergy,
I feel so bad for you both.  I had hoped the Enbrel would help. It has helped me so much.  

Have you checked out the Ankylosing Spondylitis Association forums?  I think you might find some good support there.

http://forums.spondylitis.org/ubbthreads.php?ubb=cfrm

I wish I had some advice for you both.

Sue, good luck on the new job!

MsFergy,  be cautious about an orthepedic.  I don't think they are as versed in AS as a rheumatologist.  

Take care ladies.
Nancy

[msfergy]

My pain is the same and I do beleive it is my spine issues, sorry to hear about your case. I have been very tired since Enbrel so this week I am not doing it because I just don't think thats what I need.

[smittygirl]

Sorry I haven't been around, starting a new job soon and have been really stressed.  I have been on the Enbrel 8 weeks now and it has not helped one bit.  They want me to try the Remicade now which I did not realize was the infusion med, thought it was the same as the Humira which is injectable like the Enbrel.   I have had it with this doctor anyway and need to call someone new next week.  Now my fingers are turning white and numb which sounds like Raynaud's to me, yet another auto immune disease!    How is the pain factor for the two of you lately?   Thanks so much for thinking of me.

Sue

[msfergy]

So far I cannot tell a difference but I can tell you I have been very tired and drained every since I started them, also I stopped taking my steroid about a week and half ago to so maybe that is why I feel that way so this morning I decided to take a steroid and maybe I will try that every other day also you know reading about AS I really dont think that is my case, I beleive my problem is all my back so I am going back to the orthapedic next week.

[njw753]

Hi,
Just checking in to see how everyone is doing.  Are the shots working?  

Nancy

[msfergy]

Friday was my third injection and I been feeling strange feelings down my spine like inflamation is trying to release or something, have any of you expierenced that? Been using some ice on it some also to help, also my injection sights are red. I still feel crushed like my head and neck I cant hardley explain that but my hands feel better.

[msfergy]

No rashes or redness but I have had that in the past, I know I am uneasy about being on it but I feel like it is my last resort as there are no nsaids working for me, I think I am going to request a allergy shot to see if I am having a reaction to the steroids, I have had every symptom of lupus though but this stuff is so confusing everything sounds alike.

[smittygirl]

NO!!!    I researched the heck out of it before I agreed to take it.  Some studies showed that some patients developed symptoms of Lupus from it.  It can also bring on MS which is something I am also being tested for. My neuro felt the risk out weighed the benefits, since I have such severe ReA.    It is used to treat RA, psoriatic arthritis, juvenile RA and Ankoylosing Spondylitis.   So if you think you have Lupus I would not take it.  Do you have any redness in your face or rashes anywhere on your body?

[msfergy]

Well I am on the Cortef Steroid because my adrenal glands went insuff. and they said I have to take them the rest of my life to replace the steroid hormone, I was very ill in the beginning and running a very low BP that went on for 6 months before the adrenal gland was diagnosed, 7 trips to the ER for it, after that I was put on them steroids and 2 weeks later the leg pain came on and I have just blowed up ever since and not to mention the 40 lbs I have gained. Tomorrow I think I am gonna call them again and request a allergy shot and also I wonder if it is Lupus that I really have as I had a episode 14 yrs ago that came and went in 2 weeks and the ER back then thought it was Lupus but I never followed up on it because I had no insur., I may have been in remission all these yrs and also Lupus causes reactions to meds and high antibodies which I have had in the past, my recors showed antibodies in the 2 thousands in 2006/2007 not sure where they are now. Also are you suppose to be on Enbrel if you have Lupus?

[smittygirl]

Yes it does sound like an allergic reaction.   Prednisone makes your bones brittle, if I was 70 or older it wouldnt matter, but being 50 I could not be on them long term.  I also gained weight from them which really made me feel horrible, I was a runner and triathlete before all this happened.   Based on what you told me I would tell your doctor you no longer want to be on them, it sounds like they are not helping you at all anyway.  When I was first dx I did take an anti inflammatory called Ketoprophen aka Oruvail, that reduced the swelling and pain very well for me.  I took 200 mg a day.  Can't hurt and it may just help you.   If u want to be off a medication tell your doc, you know your body better than anyone.  When I told my first rheumy that the methotrexate made me depressed and even suicidal ( sooooo not me, always happy) he made me feel like I was crazy.  Dropped him and a doc at the Mayo Clinic and now my neuro doc said it is certainly a side effect for some people.  Dont let him push you around, remember he works for you.  Sorry if this was too long.  Stay in touch with me, I work for some really great doctors and may be able to help you with some answers etc...

Sue

[msfergy]

How long were you on the steroids and why couldnt you be on them long term? I been on them a yr next month and they are actually for my adrenal gland, I have had more inflamation and pain since I been on them and sometimes I wonder if that is the reason for all this and I feel like I am allergic to them and I keep trying to tell the Doc, It just feels like my throat is swelling and tounge and throat wanting to close, doesnt that sound like a allergic reaction? It does to me.

[smittygirl]

4 years, NSAID's dont help me at all, have tried every drug they make.  Steroids did help but I hated the way they made me feel and look, plus I couldn't stay on them long term.  Methotrexate made me very depressed.   So I'm really praying the Enbrel works for me.  I have a appt with the rheumy tomorrow evening.  I have had a sore throat for the last  3 days though, no other symptoms like it's a cold or something just hurts when I swallow.  I have no allergies at all.   I will see what the doc has to say about it and let you know.    I walked for an hour last night with the pup and felt great, today I felt like I was 90.....  go figure..