HealingWell
Search Close Search
☰

Question for those that have stopped using enbrel

Support Forums
>
Rheumatoid Arthritis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/7/2013 11:00 PM (GMT 0)
Hi, I've just registered on the site. I was diagnosed with RA back in my 20's. Im 44 now and have been on Enbrel for the past 12 years. When I began taking Enbrel I noticed an immediate difference by day 2 and I was amazed. It was literally like a fog had been lifted mentally and physically I was at 100% in about 2 weeks on it.

Over the years I have had flares off and on but nothing like what I experienced before going on enbrel. Well, about 3 months ago I began flaring and it just never stopped. I also developed a pretty extreme rash like eczema all over my soles of my feet as well as my palms that the Doctor's are scratching their heads over. I continued on the enbrel until last week when my Rheumy advised me to stop taking it and it has been pretty bad since then. My Rheumy was in an accident (thanks god she is ok) and now I am looking at June before I can get in to see her. I am left with Ibuprofen and pain killers. Not ideal but they certainly help.

I have been battling with fatigue and extreme soreness in my feet and hands to the point that I've taken several days from work and it is hard to walk or even stand for any period longer than a few minutes. I've been depressed, feeling that I am un-productive and fearful because I am my families sole income. I have been fortunate in that I am able to work from home when I am not feeling well but even that has been hard with the waves of fatigue that wash over me.

At any rate I was wondering if anyone else has been on Enbrel and stopped taking it after a prolonged period and if any of the other meds like Humira or Remicade have been effective in treating your RA?

I have been on methotrexate in the past and the side effects were bad enough that I was unable to drive or function due to fatigue.

I try to keep my spirits up and I thank God for the health that I do have. I have been blessed in so many ways I can't count them all but I certainly should try to.

At any rate I hope that all of you have a good day and that we are all able to keep on keeping on. I appreciate having a resource dedicated to us! -Don
Posted 5/8/2013 5:45 AM (GMT 0)
Hi Don,
Welcome to HealingWell. So you are having a lot of pain from your RA. I first started on Remicade then went to Humira was on Humira
for years and now I am on Enbrel this seems to be the best for me.
Does your rheumy doctor have partners that you could see until she gets better.
Posted 5/8/2013 12:25 PM (GMT 0)
Don,
I am so very sorry for you. I had to stop taking enbrel just simply due to the fact after being on it for over a year it was just not pulling down my levels. Fatigue and pain were better but not where they should be. I came off and I am now on Cimzia and it is working much better for me. I will certainly keep you in my prayers and keep us posted on how you do. I too as I mentioned in another post suffer from fatigue. I have been sick and have had to go off of my Cimzia but thankfully last week was able to start back on it so hoping for better days ahead. Thank you for sharing and I hope that your day is brighter and you are able to get back to a somewhat "normal" day for what us arthritis suffers have...lol

Peggy
Posted 5/8/2013 3:50 PM (GMT 0)
Hi Don and Welcome!

I also was dxd. with RA(severe) in my 20's. I've had it for 30 years now. Or I should say, it's had me.

I've been on Humera, Enbrel, Orencia, Actemra and Rituxan plus most of the usual older drugs. Actemra did help 20-30%.

I'm amazed that Enbrel worked for you for 12 years(with occasional flares) and that it made you feel better so quickly. Wonderful to hear.

My experiences on bios haven't been successful. I have been on all the above bios, some for 7 months, others for 1 1/2 years, without feeling any better. While on Enbrel, the nodules near my elbows and the wart on my right hand disappeared and haven't returned. Expensive wart remover. :)

Some of the older drugs did put me in remission for 2 years to 5 years when I was younger.

Concerning your feet. You didn't discribe the rash but the Doctors are scratching their heads? Hopefully, you have not seen a Dermatologist yet but will soon. They are supposed to be experts in skin problems.

I only had a large patch of Eczema on my right arm in my 20's that I used prescribed Hydrocortizone on sparingly for a few weeks. It hasn't retuned.

There are many skin conditions as you know. It is not uncommon for People with one autoimmune disease like RA to develop other autoimmune diseases including skin conditions such as Psoriasis which I may be developing at this time. I have a patch on my cheek and above my right eye but it can appear anywhere on the body including on hands and feet. I haven't been to a Dermatologist yet. There is a Psorasis forum on this site, if you haven't been there. Please keep us updated.

I give you much credit in trying to keep your job going. That is so difficult with RA. I do hope that you have insurance coverage to help out.
Posted 5/8/2013 8:24 PM (GMT 0)
Thanks for the replies everyone. I am feeling better today at least my spirit is up and I was able to make it to work which also helps me feel better.

My Rheumy has a solo practice these days so there is no one else available that she would refer to that given the complexity of most people with auto-immune issues she would be comfortable recommending to another doctor. I am fine with this, I have had this Doctor since I was first diagnosed. In fact she was the only doctor that recognized the symptoms I was displaying and had any idea what was at play. Prior to seeing her I had been tossed around from doc to doc like a hot potato. They had symptoms they could not deny but nobody seemed to know what to do about them or who to send me to. It was a long 3 years before I was properly diagnosed.

I saw my General yesterday and he was able to prescribe for me an ointment to treat the skin issue with while I wait to get into the Dermatologist this Monday. He thinks that given my history I am having an immune system "freak out" as he apologetically put it lol.

about 3 months ago (when the Enbrel started to seem like it was working less effectively) I began to get this skin condition on the soles of my feet. It was very localized and nowhere near what it is since last week but I did bring it to their attention then and also was given a salve to apply which initially cleared it up.

In the last year however I have had severe allergic reactions to a few drugs which is curious because I had never had any allergy to any drug before this. I broke out in hives severely while taking Chantix to try and stop smoking and also had a bad one while having an MRI for a sinus problem when given ISOVU 3000 intravenously. That one was real fun.

Thankfully I have a wonderfully supportive loving wife and two daughters that dote over me when I am not feeling well. I have been blessed far beyond my deserving with this family. I count those blessings and give thanks for them and by doing that as well as thanking God for the health that I do have he gets me through when things get tough.

I spoke with my Boss today about this whole thing and he was very accommodating. My fears seem to be unfounded. :) I let the company know I had RA when I started here so it was out in the open to begin with.

I think that depression plays a big part of my battle with RA. I understand the physical aspect of it but the fatigue and then depression are what get me every time. Yesterday I was feeling pretty down especially about the work aspect of things. The last time things were this bad for me I went from the prime of my life and health to unable to walk in a very short time. I had bought my first house and was about to start a family with my wife and our whole world fell apart. I was very fortunate that I was able to go to a trade school, find something sedentary that I had an interest in and apply myself to it as well as possible. Its been a blessing in disguise in many ways.

Again, I appreciate having a place to ramble. I hope that everyone is well and thanks for telling me your experiences. It helps to know that there are others that are trudging the same road. -Don
Posted 5/14/2013 6:13 AM (GMT 0)
I just wanted to update on how things have been going; I have been flared up worse than I can remember in a very long time. I have been taken off of enbrel but I do have ibuprofren and vicadin to take for when things get out of hand. Unfortunately it's been out of hand for about the last 4 days now. My hands are swollen up and I can't close them and my feet hurt badly enough that I can not stand on them for longer than a minute or so. The RA shuffle is in full effect. Fatigue has been unpredictable and overwhelming. I have not been to work since Friday. I made it in but I was exhausted by 2 and running a fever. I can't concentrate.

Over the weekend I spent a lot of time with Family for the Holiday which lifted my spirits. It was great to be able to spend some time honoring my wife and my mother with the love they deserve even if I was not feeling well. On Sunday we went to church and on entering my Pastor recognized right away that things were not right. I don't hide pain very well. Our church elders and congregation prayed for me which touched my heart deeply and lifted my spirit with thanks. I am truly blessed.

This morning my wife suggested I call my Rheumy's nurse and ask if there was anything that my Doctor could prescribe me to help with the flare. (My Rheumy was in an accident and is off her feet and has been out of the office) Low and behold she asked me if I could get into the office today at 1:00 PM. My Doctor was in the office and taking patients. She is hurting and has a surgery scheduled for next week I believe but was seeing patients. I was as ecstatic as I could be in my state and made it in. When the nurse saw me she was upset, she has never seen me this flared up. I was prescribed a round of Prednisone and Amox as well as more pain relief and we ran a round of blood and urine tests.

I have to say that I am so thankful to have been able to get to see my Doctor. As well to be surrounded by people that love and care for me, and to have a God that loves me and listens to our prayers when we are hurting. I have been having a lot of down times these last 3 weeks and have felt hopeless and afraid of what the future will bring and how it will affect my family. I keep lifting my fears and anxiety up to God as well as my thanks for so many blessings and I am awestruck at how things fall into place so easily when I just get out of the way and listen.

I hope all of you hear that voice as well. -Don
Posted 5/21/2013 9:24 PM (GMT 0)
Well, I was able to get into see a Dermatologist today finally. She looked me over and told me I have pustular psoriasis. She told me as well that in some cases Enbrel can actually cause Psoriasis which is great since its used to treat it. I have to admit I was totally baffled when I heard that.

At any rate she is speaking with my Rheumatologist to try and determine if I actually have had psoriatic arthritis all along. I don't believe that is the case and that I tested positive for RA factor in the past but we will see.

She brought up taking Humira for it. I am on Prednisone right now due to this flare up and it has helped but I am in no way out of the woods. I felt pretty good yesterday but today its been fatigue city all day long. Im not exactly excited as well about taking another biologic with all of the stuff that has been going on but Im afraid of whats going to happen after I finish tapering off the Prednisone.

I swear the fun never ends. I have been pretty much an emotional basket case the last couple weeks as well and that hasn't helped. Sometimes its just hard to feel positive with things like this.
Posted 10/8/2014 8:36 PM (GMT 0)
You are not alone!
I was diagnosed with AS (Ankylosing Spondylitis) about 6 years ago. But had AS for many years before that. After trying Enbrel, I had the same reaction as you. At first, it was a life changer! Enbrel had fixed everything! I felt that I had finally found the medicine that worked. After about a year, I developed a type of psoriasis/excema on my soles and palms. Tiny blisters and very dry skin. It was only on my hands and feet. It was horrible! The doctor's were stumped! They had never heard of Enbrel giving someone psoriasis/excema. I went to 2 different Derm's. One took a biopsy, and the other took a scraping. 1 derm said it was pustular psoriasis, and the other said Atopic Dermatitis. I also saw an Allergy dr. And she believes it Dermatitis herpetiformis. After trying many steroid creams, lotions, steroid injections in my feet(hurt like hell), steroid shots in my butt, and months of photo therapy. I feel like I am left to figure this out on my own. Cause nothing helped.

My Rheumatologist had me switch to Humira. Although it did still work for the AS, it did nothing for the psoriasis/excema. So they switched me back to Enbrel. about 6months later, I still have the psoriasis/excema. But was starting to get some type of cystic acne all over my back. Doctors tried more stuff, creams, antibiotics, and they didn't help either. It was a scary feeling seeing that your doctors don't know how to help. And start referring you elsewhere.
I tried to stop the bio shots altogether. But after about 3 weeks. I remembered what the pain used to feel like. I felt horrible! So I cracked and went back on Enbrel. I just felt like these were the sacrifices I had to make, in order to feel better. I am at the point where I think I am going to stop all medicine. And try the starch free diet. I keep hearing about people doing this with much success. I am desperate at this point where I need to do something. And every time I look up whatever disease I have for the month. It always points back to food. So I think that's where I am headed. I don't know what else to do!
Posted 10/10/2014 6:59 PM (GMT 0)
Hi John, I did that too! It helped somewhat for me but I flared up so badly that I couldnt function at all and went back on Enbrel again and then after having it do more of the same was switched to Humira and then Orencia and Methotrexate which is what I am taking now. I should add that after going off of Enbrel that eventually my psoriatic reaction finally tapered off but it took months. I have no had it happen since.

Both certainly help with my RA and on the positive side I dont get the pustular psoriasis thing happening on my hands and feet anymore. I started going to a naturalpathic Doctor recently as well and that has helped with some of the other problems I have like anemia and very low testosterone on top of it all! It is certainly not the idea choice having to take the biologics but it certainly beats the alternative at least for me. I can relate to the acne problems. They put me on T injections and now my entire back and chest are covered in scar tissue from the reaction I had to it. I am now finally starting to recover from that after months of pain and not being able to sleep.

If you do decide to try the no meds route for a while really take care of your diet and try to get to a naturalpath or someone who has experience treating these things using alternative means. I wish you the best, I had some really tough months doing that so I hope that it goes better for you than it did for me.
Posted 10/15/2014 6:01 PM (GMT 0)
Was on Enbrel auto-injection and feal better after only three treatments. Had to stop because of site injection infections and now have to have Remicade infusions, my 2nd one will be on Oct 23rd. Really wish I could have stayed on the Enbrel because it was working.
Posted 10/22/2014 11:21 PM (GMT 0)

mgabe said...
Was on Enbrel auto-injection and feal better after only three treatments. Had to stop because of site injection infections and now have to have Remicade infusions, my 2nd one will be on Oct 23rd. Really wish I could have stayed on the Enbrel because it was working.

We just went to the doctors to confirm if the flaring pain on my wrist is a RA or osteoarthritis. Doctor mentioned to try NSAIDs meds or Enbrel once confirmed its RA if the pain persist. My doctor advised of the side effect of enbrel since it lowers your immune system and some develops psoriasis and some became prone to infection - the same effect as corticosteroid meds. I'm kinda worried of the side effects doctor advise me to watch out for my diet and to take Omega 3 Supplement as an alternative anti inflammatory. These Omega 3 Supplement seemed to keep the pain at bay..

Post Edited (cmarquez) : 10/22/2014 5:27:52 PM (GMT-6)

Posted 10/26/2014 8:06 PM (GMT 0)
Please be very careful with NSAID's. After 20 years of taking them I ended up with ulcers and not only can I not tolerate them but my stomach is very sensitive to many foods now. Doctors love to prescribe them and they certainly work but there is a cost associated with them that you may end up paying later like I did.

Another aspect of this as well is that they upset the balance of healthy bacteria in the gut which may actually exasperate our issues with RA. There is a lot of study recently into the possible link of bacterial problems and auto immune disease.

Omega 3's are certainly a help as well as alternatives like acupuncture can also be a big help to some with dealing with pain from RA and other auto immune disease.

When I was in the emergency room because I thought I was having a heart attack (but really was suffering from an ulcer) the ER nurse told me that if you are having to take NSAID's on a regular basis for pain you would be much better served to talk to your specialist regarding pain meds (there are non narcotic pain meds that work for some) or getting a referral to a pain clinic.
✚ New Topic ✚ Reply