Humira not working

[Nantucket]

I started Humira February 2013 it worked for a while but I was also under the influence of a steroid injection. The pain came back late April and it has taken all this time for my rheumy nurse to admit I need another biologic. I can honestly say I have never been in so much pain for the first time it is effecting my knees. Today I am seeing her for a steroid and hopefully she will sort out the drug problem. I put so much faith in Humira after reading so much about it and feel gutted, it just wonder if I will ever get something that works. Sorry for the moan but I am so tired as I can't sleep. Hope everyone is enjoying the sunshine If you have it. xx

[Hidden]

so sorry to hear this.. I HAVENT had the chance of a biologic as of yet and aso rheum is looking for or is at>> other diagnosis. I PASSED DAS score but wasnt "swollen" enough.. I had chosen enbrel over Humira.. though the newer kid on the block Cimza looks promising.. the first thing the rheum nurse said is would you consider anti tnf. infusion.. this is another posibiltiy for you.. I declined this offer as I STILL work albeit part time x

[Case in reply to Hidden]

Hi Summer,

Am intrigued by term anti tnf infusion. Is this different to injection. Please can you give me some more info.

Thanks

[Hidden in reply to Case]

via infusion line ie drip into vein.. day case procedure as outpatient takes about four hours

[Nantucket]

Thanks Summer for your reply, I still work part time also my husband is away this week so I have had to get up extra early to get motivated as the dogs need a walk, but have cheated just managed to hobble round the garden. what made you decide enbrel I had the choice but they recommended Humira - obviously the wrong choice? x

[donnalouisec]

Hey guys,

I too started on humira but unfortunately it didn't do anything for me. I then started enbrel which again failed. The only thing it did for me was gain weight and leave a Nasty itchy rash on my leg. I'm currently having rituximab infusions. I've had my first cycle which it 2 infusions two weeks apart and that was in April.... To date I am still in pain, however not as much as before but like you not sure if its the steroids carrying me through. Time will tell. All I can say is keep your chin up and hopefully we will find something that suits us soon xxx

[Hils]

Hi -I've been on Humira for 15 months now, I had to come off it for a month as I had bronchitis and was put on antibiotics. My DAS score whilst on Humira was 6 and was told by my consultant to stop taking it and she would recommend Tocilizumab for me. I was given a life saving steroid injection (felt like it) and an appt for August. I then got a phone call to say start Humira again as I wouldn't be able to have the infusions of Tocilizumab if I didn't. Soooo have had 2 more Humira injections which I find really painful but feeling rather in limbo. I'm thinking of writing to my consultant for clarification. The steroid injection was brilliant and showed me what normal life could be like! I do hope you get sorted out and find some relief very soon, we need doctors and nurses to treat us like intelligent human beings and not just see us as patients. Best wishes Hilary x

[Nantucket]

How did you feel on Humari? and did you ever try enbrel, I am waiting to hear what the nurse says today, so excited for my steroid injection. I agree they try to fob us of all the time and you have to be firm which isnt easy as you think they know best. I was telling the rheumy nurse it wasnt working but she kept saying give it longer, each week I was worse and worse they must think we are idiots. xx

[janie68]

Hi there, I amalso on Humira. This is my 6th biologic, sohave had some experience of them! My biologic nurse has always told me that in my trust now a CCG which approve the funding I have to have the biologic for at least 6 continous months before making a decision as to whether to continue or move onto something else. It could explain why the nurse is insisting to stay on it longer maybe? Some of these biologic do take at keast 6 months as well, like the Tocilizumab. But, that doesn't help if you are in pain and the bloods show that it isn't working anyway! By the way, Humira isn't doing a lot for me, think it maybe the last. Biologic for me now, great, at 41, I am doomed! Hope you get it allsorted and thank god for steroid injections! LOVE THEM!!

[jeanabelle in reply to janie68]

I really enjoyed reading your txt as I think you and I would be very much alike. In 2 years I have been on Humira, Enbrel, Tocilizamub and next Thursday I start Abatacept. Saw my dr this morning and he reassured me that if the Abatacept doesn't work or I take a reaction there are other biologicals coming online now.......he told me the name but I was just so relieved to know that I hadn't reached the end of the line that I didn't pay any heed to the name. So don't disperse there are more 'diabolicials' for the likes of you and I. So keep your chin up......not over till the fat ladie sings! All the best. X

[Case in reply to janie68]

Just read your message. It's sad that they've not worked for u. I'm about to start, in the back of my mind its been what if they don't work. How I am will be the best I'm going to be etc. hopefully you're carry on having benefit from steroids. The injections don't work for me, but I had a steroid infusion over 3 days which made a huge difference, didn't need another injection for a year after.

Take care.

[Ozzy]

When I was on Humira I felt better in less than two weeks, the tiredness had lessened and by the end of the first month the improvement was fantasist. I only came off it after 18 months because I caught a bug which meant it did not work so well and my das score went up again. I was than put on to rituximab infusions in March. I went to see the nurse this morning as it has now been three months but I don't feel any improvement as yet and the drug company said that it can take up to 27 weeks, not sure how I can wait that long as I am now so tired all the time as I keep waking up with the pain. I felt that I now have to wait for at least six months before being allowed to try anything else.I did not even get a steroid injection yet again, oh well back to see rhummy the end of August.

[Nantucket in reply to Ozzy]

When I went today she said if the humira doesn't work she named the drug that you are on, it just sounds so scary to go to hospital and have it done. I hope it works for you it is awful waiting to see if things are going to work your life is passing by 6 months at a time you put so much confidence in a new drug, take car xx

[Ozzy in reply to Nantucket]

The infusions themselves are nothing to worry about once the needle is in you spent the rest of the day being spoiled with hot cups of tea, lunch and watching tv or reading. The first one I went in at 8 and was done by 3.30pm the second two weeks later was quicker. The hard part is like most of the drugs, waiting six months plus to see if you are going to get any benefit. The anti CCP test is another test for inflammation like the RF test, I am negative for RF and low for the anti CCP. I have sero negitive RA. Good luck if you go on the rituximab, I hope that it works for you as there are some people at my hospital who only need one set of infusions a year!

[Condessa2001]

HI, I am a newbie here (have been reading the blogs for a while but not commenting). I was diagnosed in 2004 and have been on various DMARDS, none of which helped as my joints were still very inflammed and the only thing that calmed them were the steroid injections. Since December I have been injecting Humira (terrifying stuff for someone with a major needle phobia) and apart from two flare-ups I have to admit that I do feel better. To be fair, I was in terrible agony prior to starting the Humira and did have a steroid jab to relieve the pain once I had met the qualifying criteria for Humira last October. I really don['t want to feel that awful again. I also take leflunomide with the Humira. I think what works for one, doesn't help another, but I do hope that you find one that does the trick for you.

Love this website.

[Nantucket]

I have been for my magic steroid jab and she want s me to stay on humira for another couple of months as it is only five months since I started it. I then have to see the consultant and see what happens. One thing that surprised me she said had I ever had a blood test for anti ccp, I hadn't a clue what she was talking about, just wondered if anyone knows what it is, she took my blood anyway. Hope this jab kicks in this is worst flair since starting with this horrible illness. Xx

[chuckg in reply to Nantucket]

I have been on Humira for about 12 years. Approximately 6 months ago I started having pain and swelling in my hands and wrists, knees, elbows, etc. My incompetent (IMHO) doc, a new one since we moved to RI told me to stay on Humira and see him in 6 months. I located another RA doc who did extensive blood tests and told me I had active Lymes disease (I have had Lymes 3 times and Babeosis once, last September. I did not feel that this was good information and my PCP and another doc agreed with my take on this matter. Regardless of this info my new RA doc wanted me to take a full course of doxycyclin, which I did with no change. 2 months go by, she puts me on Prednisone to get the swelling and concomitant pain reduced. I was on a decreasing dosage for 3 weeks, just came off it 2 days ago and had my Humira shot yesterday. Hands and wrists are swollen and I am in overall pain, prednisone did help while I was on it but do not want to be on it forever… anyone have this problem with Humira? What is next alternative? BTW just not comfortable with my RA doc who either does not listen to me and thinks she has all the answers while I continually suffer…

[Wyaatch in reply to chuckg]

Hmm Did you know there’s a whole group of Lyme patients and doctors that don’t believe Lyme can be corrected with just a short dose of antibiotics? When you say 3 times...has the Lyme been tested and was gone? To my knowledge—there’s a test for Lyme but you develop antibodies so it’s hard to test if it’s gone. There’s Lyme resources online. The warnings for biologics say don’t take with an infection—and I’ve always wondered if Lyme is an infection but the medical establishment believes it can be treated in 10 days with antibiotics and it’s gone...my RA doc said my Lyme must be gone—-however..I don’t think so. ..the registered Lyme docs in the US talk about chronic Lyme that’s best treated soon after the tick bite—-it’s common for many not to be able to overcome Lyme—I’m hesitant about biologics as I believe I have both Lyme and co infections like babesia and RA. I’m trying to find a functional medicine doc or integrative as I tried treating Lyme for 10 years and felt better than I do now by my RA mobility went down so now I’m chasing RA treatment but found they are very narrow. I need someone with a broader outlook on both diseases—-I fear the RA training has been limited to drugs with little concern for individual bodies.

[Hidden]

different drugs suit different people. i simply chose enbrel.. over humira as humira can cause drug induced lupus in some people reversible).I havent had either drug IN THE END!.Rheum is considering differential diagnosis of lupus?? I Had a positive ANA blood test.