Medical Forum / Diseases and Disorders / Arthritis / November 2005
Enbrel experiences, does it lose it's effectiveness?
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Sunny52 - 14 Nov 2005 18:40 GMT Just wondering if others are experiencing similar problems with Enbrel. I have been on Enbrel for 10 months, and this past weekend I experienced a major flare. This is the first major flare since I started Enbrel. Is it possible it is losing it's effectiveness? I was doing fine with Celebrex added to the mix, but just recently went back on Mtx.
Has anyone else experienced a similar response, and if so, did you switch to another biological drug? Was the response immediate?
I'm waiting for a call from my RD, but I would like to be armed with choices before I make a decision.
Thanks.
Diane - 14 Nov 2005 21:53 GMT hi sunny, please see the response i just posted under the I"M SICK OF IT thread.
diane
Sunny52 - 14 Nov 2005 22:20 GMT Thanks, Diane. I have my answer. I have not experienced this kind of pain in over 20 years. I am still waiting for my RD to call back. I'll write again after I speak with him.
I hope you also find relief real soon. I too am sick of being sick and dealing with this disease. Sleep is something I did before arthur entered my life.
Bonnie
Alix M. Hall - 15 Nov 2005 01:55 GMT I know my enbrel helps because I know what I am like when I have to be off of it for an infection.....that being said--I am not pain free--there is nothing that can mend the damage done with 30+ years of this disease--RA takes its toll--and then you add in the fibro--and etc and so on and so forth---but I have found a balance--with enbrel, pred and mtx and paxil for pain control (don't ask me how but it does help) and the odd assorted cortisone shot and my pool walking and my resting vs. working ratio--I have had meds stop working before--and we just had to try different combos until something does work--sometimes I feel like I am juggling swords or spinning plates and if it gets off balance, oh boy--but I work very hard to keep it on balance--but enbrel the wonder drug that cures all ills---NOT!!
 Signature Love, Alix
"We are all pencils in the hand of God." ~Mother Teresa
Sunny52 - 15 Nov 2005 03:49 GMT Thanks for the insight, Alix.
Bonnie
Harvey R. Stone - 15 Nov 2005 12:03 GMT > Just wondering if others are experiencing similar problems with Enbrel. > I have been on Enbrel for 10 months, and this past weekend I [quoted text clipped - 10 lines] > > Thanks. Hi Sunny, Please look at it this way,,,,,, you are so lucky to of gone 10 months without a flare. It is normal to a small flares while using Enbrel. It is something to talk to your RD about to make sure the doc is informed about what is taking place. I have been using Enbrel for a long time and it is just as good now as it was in the beginning. In fact,,, I have not had a steroid shot or used prednisone in over a year. The last shot was to calm down some rib cartilage in my back. Harv
Charrlygrl1 - 15 Nov 2005 13:23 GMT Sunny, I know exactly how you feel, I truly do. I hope that your RD has some options for you. LOL-please let me know what they are, Charlene
Sunny52 - 15 Nov 2005 20:22 GMT My RD gave me the option of taking prednisone, but I have chosen another course. If this does not work, I will most likely reconsider.
Bonnie
Sunny52 - 15 Nov 2005 20:18 GMT You're right. I have gotten small flares, which I expected, but this was a major flare. Right now I'm choosing heat, rest and pain meds as needed. My RD feels the Mtx (I just increased dosage) needs some time to work it's magic.
Glad to know Enbrel works for you. May it continue to do so.
Bonnie
RoseB - 15 Nov 2005 14:45 GMT I have been off the enbrel because of my sinus infection. I am now on my second course of amoxicillin and clavulinate, and actually think my voice is improving a bit. But I have had a great deal of leg pain and a mini occurence of the evil foot thing that I got regularly while on remicade. I am tempted to take a pred pulse, but part of me wants to wait to see if I can start to improve without it. After the last few years of high dose pred, I don't want to get back on the roller coaster too quickly.
But last night I was in tears, and a few threatened to come out this am. I am just too damn stubborn to give in though so staying home from work is not an option. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB
Please remove "Ima" to reply.
Sunny52 - 15 Nov 2005 20:28 GMT Oh Rose, sorry to hear this. I really hope the infection clears quickly so you can get back on Enbrel. I too was close to tears. I have been averaging 2-3 hours of sleep a night, and the pain seems most intense after the sun goes down.
Bonnie
Squirrely - 17 Nov 2005 03:01 GMT Rose,
Sweetie, I am so sorry to hear this, I feel for you. My heart goes out to you. I wish things were different for you and that you would improve and stay improved.
I wish I were there to hold you and hug you and comfort you.
 Signature Love and hugs to all Good thoughts coming your way too.
Squirrely Jo
>I have been off the enbrel because of my sinus infection. I am now on > my second course of amoxicillin and clavulinate, and actually think my [quoted text clipped - 13 lines] > > Please remove "Ima" to reply. Kelly - 17 Nov 2005 03:45 GMT Rose, Sorry to hear this - I would encourage you to get one of those personal vaporizers or whatever they are - the small vicks ones. Must admit it was helping the sinus garbage. Worth a try.
I sure wish they could figure out what that evil foot thing is. the sooner it goes away the better.
Hugs, Kelly
>I have been off the enbrel because of my sinus infection. I am now on > my second course of amoxicillin and clavulinate, and actually think my [quoted text clipped - 13 lines] > > Please remove "Ima" to reply. RoseB - 17 Nov 2005 05:54 GMT >I sure wish they could figure out what that evil foot thing is. the sooner >it goes away the better. I have not had this since last March when I stopped remicade. This time it did not develop the way it has in the past, but I did have a lot od pain and inflammation around the tendons and so on. Otherwise, it just feels like a bad flare only the significant pain is not the joints but rather the connective tissue around them. Anyway enough about me.
My mom called tonight and said that she had seen her doc this morning, and that her BP had gone very low as a result of her BP meds and the fact that she had been changing meds. She complained of weakness and dizziness. I did not know what to tell her so told her maybe having something salty would help bring up the BP and otherwise she would just have to wait it out, About a half hour later my sister called, and said we' d better go over and see. To make a long story short- she passed out when we were there- I called 911, she was taken to hospital and now is on her way to Kamloops the closest city where she will have a pacemaker installed. Her BP was 80/40 and her pulse was averaging between 30 and 40 bpm after the medication. They had to bring in the advanced life support ambulance from Kamloops because they can not transport anyone with LOC in a regular ambulance. My oldest sister came as well too although she is barely walking because she still have infection following the THR.
Middle sister will drive over to Kamloops in the morning. Basically nothing we can do tonight and the road is not that good.
So I am not too worried about myself.
We are wondering why her doc let Mom go back home on her scooter this morning if her BP was so low.
Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB
Please remove "Ima" to reply.
Alix M. Hall - 17 Nov 2005 13:54 GMT Rose--gentle hugs and prayers also prayers for your mother and your family caring for her--(sigh--how the plate overflows--sigh again) {{{{{Rose}}}}}
 Signature Love, Alix
"We are all pencils in the hand of God." ~Mother Teresa
RoseB - 17 Nov 2005 14:33 GMT >Rose--gentle hugs and prayers also prayers for your mother and your family >caring for her--(sigh--how the plate overflows--sigh again) {{{{{Rose}}}}} Thanks, Alix.
Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB
Please remove "Ima" to reply.
Kelly - 17 Nov 2005 17:11 GMT Damn! Good thing you and your sister were there. you take care Rose - too many things happening.
Will check the newsgroup tonight to see what is happening.
Kelly
>>I sure wish they could figure out what that evil foot thing is. the >>sooner [quoted text clipped - 35 lines] > > Please remove "Ima" to reply. shenmei9@aol.com - 17 Nov 2005 19:31 GMT prayers for your mom, you and family-
m
Gwen Love - 18 Nov 2005 00:47 GMT Rose, so sorry to hear of your mother's problems now. Surely hope the pacemaker will make a big difference. Also hope your sister's hip soon heals and that your evil foot thing will just disappear for good. Gwen
>>I sure wish they could figure out what that evil foot thing is. the >>sooner [quoted text clipped - 35 lines] > > Please remove "Ima" to reply. shenmei9@aol.com - 15 Nov 2005 17:06 GMT Sunny, Just a thought...
I used to love winter here in California when it rains but post-arthritis, I hated the winter. I would always get much worse in the winter. then I started the biologics beginning with humira. I had a slight flare even on humira in November of my first year. Last year had a flare that started in November (I do not flare usually). I bought a SAD light, used it a week, flare went away. I then started finding a number of small studies using light therapy with autoimmune diseases.
Oh by the way, I was on enbrel last year and this year, rather than humira. So started a flare about a week ago, pulled out the light and am now not flaring. Something to think about.
When I get time, I'll try to find some of those studies. Had them in a folder but don't have that computer so I'll have to look for them again.
M
Sunny52 - 15 Nov 2005 20:29 GMT Hmmmmm.... You may have something there. Bonnie
Charrlygrl1 - 15 Nov 2005 21:03 GMT Sunny, I wanted to see how long you have been back on the MTX and at what dosage. My story is as follows: took a long time to get diagnosed-wrists started bothering me around Jan 03. In April 03 started seeing an RD, started DMARDS, NSAIDS. I was on MTX at that time, but taken off of it after 2.5 months as it seemed to be doing nothing. Went that whole route for quite a while. In June of 04, started the Enbrel. Some improvement, not much. Fired two RDs, started seeing my new one May 05. In May my new RD started me on MTX again. I slowly worked my way up to 8 pills per week. At first, at the 20mg/wk dosage I was feeling some relief...especially in my feet(the balls and heels both were bothering me badly). I take the MTX on Weds night, and Thursday morn my feet were much better. After about 3-4 weeks at that MTX dosage, my feet/ankles/hands/shoulders/wrists/knees/hips would start hurting around Sunday night. (I take Enbrel on Saturday). I am wondering if anyone else's MTX seems to wear off early. I don't know if the Enbrel is working for me at all. I am almost too afraid to discontinue it for fear of how my body will react. Like you, my pain also ramps up at night. I thought perhaps that it was because I am working during the day, and I am distracted? But my ankles swell pretty good at night, and the left one turns bright red and gets very hot. My wrists ramp up at night as well...which seems weird since I am typing all day...but at night every little movement makes me gasp or cry out. I wake up all night long if I try to sleep without my braces. I tend to curl up my hands/wrists oddly at night. Anyway, what has been your experience with the MTX? Does your RD feel that the Enbrel may be losing it's oomph? I would be interested to hear how you make out. I didn't mean to hijack your thread...just thought the symptoms and the meds seemed very similiar to mine. \~/ Here's to both of us, may we find a solution soon, Charlene
Harvey R. Stone - 16 Nov 2005 02:19 GMT > Sunny, > I wanted to see how long you have been back on the MTX and at what [quoted text clipped - 14 lines] > around Sunday night. (I take Enbrel on Saturday). > I am wondering if anyone else's MTX seems to wear off early. You and your RD should work together while watching your bloodtests to get the amount of Methx you take up enough to last all week. Another thought might be to add Arava to the Methx you take. Some people have been able to lower the amount of Methx taken each week after Arava has kicked in and it can be taken in two different sizes. Its all about what it takes to control your immune system while keeping your liver happy. If I were taking Arava and Methx again,,, Milk Thistle would be taken also because I could not get above 20 mg by shot without my liver enaymes beginning to move up. Harv
I don't
> know if the Enbrel is working for me at all. I am almost too afraid to > discontinue it for fear of how my body will react. [quoted text clipped - 12 lines] > \~/ Here's to both of us, may we find a solution soon, > Charlene Charlene,,,, Please make a copy of your own post and hand it to your RD. Harv
Sunny52 - 16 Nov 2005 14:34 GMT Hi Charlene,
No, you did not hijack my thread. We all learn from one another by sharing experiences.
I have been on and off Mtx for over 20 years. I started taking it before it was FDA approved for treatment of RA. The first time it was like a miracle drug and worked almost immediately. I took it for approx. 5 years and had to go off of it because my LFT's were abnormal. I have been on a maximum dosage of 20mg (8 pills) to 7.5mg. The best outcome was when I started Mtx. injectables (1999), but when it became unavailable last year I switched back to pills.
Over the years I have been on and off Mtx depending on blood test results. I have been taking Celebrex for years now and always supplemented X-tra strength Tylenol for pain. Until last week Tylenol was enough to take care of the pain.
When I started Enbrel 10 months ago it worked almost immediately. I was taking 20mg Mtx., but I gradually started tapering the Mtx. until I went off of it two months ago (my decision). I thought the Enbrel was doing a fine job, so I didn't need the Mtx. (against dr's advice). About one and half weeks ago I started noticing swelling in my hands, feet, ankles, and my shoulders were sore. My shoulders were the first joints to become affected by RA, and the pain felt just as intense as it did over 20 years ago. Most of this appeared at night, so I thought it was due to activity. I decided to start the Mtx. again, but it was too late. The flare started with a vengeance less than a week ago, and the pain was so intense I felt sick (first time since RA appeared in 1983).
Now that I am writing this I know I brought this on myself, but I thought the honeymoon with Enbrel would last forever. My RD does not feel the Enbrel has stopped working, but feels I rebounded because I stopped taking the Mtx. I don't think he's very happy with me right now.
I have always been anxious about taking Mtx. because of it's toxicity, I get mouth sores, and it makes me quite sick for 1-2 days after I take it. I have tried every trick (and OTC's) to try to get rid of the nausea and mouth sores, but nothing seems to help. I now notice how quickly I jumped to blame this on Enbrel. I guess I thought Enbrel alone could give me the relief I need. <Sigh>
The pain is now slightly less intense. I am still taking Celebrex, using heat, rest and a pain med. Standing in a hot shower with the water on my shoulders also helps, but I can't stay in the shower all day. lol This coming weekend I'll take my next dosage of Enbrel and Mtx. Perhaps next week will be better.
I have always refused to take steriods in the past, but I may have to reconsider.
Thanks for sharing your story. I pray you find your magic treatment and get the relief you need!
Yes, may we find a solution for all of us who suffer from this horrendous disease! Bonnie
Diane - 16 Nov 2005 15:24 GMT sunny, the flare is almost certainly from stopping the ,tx. i take arava with remicade (and i also did with enbrel). i, too, thought the enbrel or remicade would be enough because i was doing so well. i halved the dose of arava (with my doc's blessing) and in a few weeks, i felt as tho i was right back where i'd started. it's very discouraging when we realize we are still so sick--that it's only the meds keeping the symptoms at bay.
i had problems with nausea etc from mtx and switched to arava. could you discuss that option with your doc? maybe you could tolerate it better.
diane
Sunny52 - 16 Nov 2005 16:17 GMT Diane, I have already tried Arava and had to stop it after a short course due to my elevated LFT's. I stopped it for a month, and went back on it (dr's advice), but one month later the results were the same. That is when he suggested Enbrel. He did say that Enbrel is usually taken in combination with Mtx, but not always. I really thought I could "get away with" taking just Enbrel. I have learned my lesson.... I hope! Bonnie
Charrlygrl1 - 16 Nov 2005 18:52 GMT Sunny, One quick suggestion (and thanks so much for replying!), My Rd prescribed me leucovorin. It is a folic acid derivative taken 8-12 hours after the MTX. It helps fight the more serious side effects of MTX (in my case hair loss and mouth sores). It definitely has eliminated the mouth sores completely for me, and it also has slowed down the hair loss by quite a bit. I can tell because this week I forgot to take it (I keep the pills near the coffee maker so I will be sure to take it in the AM the day after the MTX, and last week, I went out for coffee-therefore forgot the damn pills!), and when I washed my hair on Saturday my hair actually clogged up the drain in my shower completely. I was totally freaking out. I hope that you and your RD can come up with something to make things a little better for you. I totally understand how you can't stay in the shower....LOL, if I could, I would too! Thanks again, Char One other thing... I have read from people elsewhere that when they stopped taking the MTX and then restarted it at a later time it was not as effective as it was the first time. I wonder why that is? So anyway, maybe you could ask your doc re: the leucovorin? It has really helped me.
Sunny52 - 16 Nov 2005 22:10 GMT Thanks, Char. My RD said he would call in a script for 10mg Leucovorin, but did not (I checked last night). I will call tomorrow and gently remind him.
I really hope the Mtx. is effective, in fact, I counting on it!
Bonnie
Alix M. Hall - 17 Nov 2005 13:58 GMT Sometimes the combo of Enbrel and MTX gives the best result--that is what some studies have shown--Right now I am on enbrel, MTX and pred--low dose pred because I have been on it forever and can't get off--sigh--but all in all it is better than before enbrel--I might add that every time I try to be my own doc and go against his suggestion, I have regretted it--I just hate taking all this stuff--but.....
 Signature Love, Alix
"We are all pencils in the hand of God." ~Mother Teresa
Squirrely - 17 Nov 2005 03:05 GMT Sunny and Charlene,
I just wanted to let you know I was thinking of you both. Sending lots of hugs your way and healing vibes also. I hope you both find something that really works well for you.
 Signature Love and hugs to all Good thoughts coming your way too.
Squirrely Jo
> Sunny, > I wanted to see how long you have been back on the MTX and at what [quoted text clipped - 30 lines] > \~/ Here's to both of us, may we find a solution soon, > Charlene Sunny52 - 18 Nov 2005 13:21 GMT Thanks, Jo! How are you doing?
Thoughts and prayers coming your way also.
Bonnie
Squirrely - 18 Nov 2005 15:58 GMT Your welcome Bonnie. I have been missing you when you don't post much.
As to your question. I am going to try to make it short. I am not doing good at all. I had virus/flu that lasted for months now. Get better for a day or two and it comes back. Dehydration problems still an issue. Now don't even know if we can make next months rent. Woke up this morning with a swollen mouth. I think I have an infected tooth. No money. So that is life. Jim is working but not enough hours and enough pay.
I bet you are really glad you asked. Not! ;-(
 Signature Love and hugs to all Good thoughts coming your way too.
Squirrely Jo
> Thanks, Jo! How are you doing? > > Thoughts and prayers coming your way also. > > Bonnie Sunny52 - 18 Nov 2005 17:55 GMT Oh, Jo, I am really sorry to hear about these latest problems. If it's not one thing, it's another. Right?!
I think of you often, and hope things will get better for you. I still have the card you sent me last year!
And, I am really glad I asked, I care.
Bonnie
Squirrely - 18 Nov 2005 20:44 GMT Thank you Bonnie,
Can you email me, I cleared out all addies one day and lost your email addy from that. I was worried I was sending a virus. But found out later I wasn't. ;-)
I feel so terrible. I have a feeling I am going to have to get to a dentist to take care of this but with no money I don't know how the heck we are going to do that.
 Signature Love and hugs to all Good thoughts coming your way too.
Squirrely Jo
> Oh, Jo, I am really sorry to hear about these latest problems. If it's > not one thing, it's another. Right?! [quoted text clipped - 5 lines] > > Bonnie Mary Z - 17 Nov 2005 04:11 GMT >I am wondering if anyone else's MTX seems to wear off early. I don't >know if the Enbrel is working for me at all. I am almost too afraid to >discontinue it for fear of how my body will react. That used to happen to me so my RD upped the dose I have been as high as 38 mgs of mtx. Note that some new drugs will likely be available next year and they look good for folks who are not responding well to anti-tnf. Orencia (abatacept) should be out soon it was approved by the FDA advisory panel and they are just waiting for the final full approval. Should be out early in 06. Rituxan is also fairly close there was an October 31 announcement that FDA would give the drug piriority review which means a decision in 6 months. It is also a good one for Anti-tnf non responders, so don't lose hope there are several more in the pipeline some very soon! I failed many until Remicade put arthur to sleep.
This is from Yahoo news:
NEW YORK (AP) -- Biotech companies Biogen Idec Inc. and Genentech Inc. said Monday that the Food and Drug Administration will a grant priority review for their drug Rituxan to treat rheumatoid arthritis, while shares of Biogen got an added lift from an analyst upgrade on an anticipated drug reintroduction. Shares of Biogen rose $2, or 5.2 percent, to $40.49 in afternoon trading on the Nasdaq. Shares plummeted from a 52-week high of $70 in February after the company pulled the rheumatoid arthritis and multiple sclerosis treatment Tysabri from the market over fears of a rare brain disease, eventually hitting a 52-week low in June of $33.18. Biogen marketed Tysabri along with Elan Corp. Biogen shares are down 39 percent so far this year.
The FDA's priority decision on Rituxan means the agency will make a decision about the rheumatoid arthritis indication within six months instead of the standard ten months. This follows on an announcement last week that Rituxan received priority review to treat cancer of the immune system. Biogen and Genentech are seeking approval to treat patients with rheumatoid arthritis, an inflammatory disorder, who have not responded to other therapy.
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Squirrely - 17 Nov 2005 03:03 GMT M,
thanks for sharing that.
I have sads and autoimmune issues. I am going to try the light therapy since you mentioned it. Thanks. Didn't know you would help others saying that did you. But you are.
 Signature Love and hugs to all Good thoughts coming your way too.
Squirrely Jo
> Sunny, > Just a thought... [quoted text clipped - 17 lines] > > M Charrlygrl1 - 17 Nov 2005 13:53 GMT Thanks Mary! It's hard to keep your hopes up sometimes, but what other choice do we have? Char
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