Hi everyone, can anyone offer any words or comfort or advice please?I was told at the beginning that this would change my life.
A few weeks back I visited rheumatology and I said that I was dissatisfied with the drug, they told me to give it longer.
I feel so down.
I managed 8 weeks. Muscle and joint pain horrendous plus loss of power in legs and arms . I also got burning/ tingling in hands/feet and tongue ( nerve pain) . Tinnitus is another side effect for me . I’ve just stopped it as I know it won’t improve as this happened to me with entanercept and is the same family of drugs I it tried for 6 months .
13 weeks is plenty of time for your drug to have at least given you some improvement if not yet the full monte. It’s such a let down when you pin so much on something changing the drag and grind of RA and it doesn’t actually do anything but give you side effects and make you miserable.
I have recently given up on Tocilizumab (sub cut) as not only did it give me loose stools and indigestion throughout the 12 weeks I gave it a go, it just didn’t make any difference to my RA pain or swollen joints so my rheumatologist said there was no point in going on with something which clearly wasn’t doing the job. I am going back to a JAK inhibitor (had Baricitinib prior to the Toc but it stopped working when I had Covid last Feb) so am now waiting for Filgotinib to join my band of merry meds….😄
There’s loads of different biologics out there and it’s your body. Best of luck and hope you get the right one very soon as when you do it can change your life.
Thank you to both of you. I'm going to call them tomorrow. I forgot to say that I'm on the drug due to having Ankylosing Spondylitis. It felt like it worked at first (for the first few injections). Now I'm thinking that it could have been a placebo effect? Could it have been possible to have worked temporarily?
Possible that it had some effect but not enough to make any difference. The Tocilizumab I had did relieve the pain up to a point while I was on it - and I am very painful now I’m on nothing but Pred to tide me over before the Filgotinib - but the efficacy of the biologic was nowhere near what it should have been with nowhere near the results it should have shown. Bit like having a dim light in the hall before you realise there are brighter ones you could have bought!
Thank you for the reply. The thing is my pain almost all went at one point, but just lasted a few weeks.Sorry you're suffering too.
I`ve had Ankylosing Spondylitis for 10 years and last year I was offered a biologic (she didn`t know which one to put me on) even though my Rheumy hadn`t even sent me for a recent MRI scan so it could be compared with a MRI scan done 5 years previous to see if there was any further damage to my spine so I had to advise her to send me for an MRI scan so she could physically see if there was any further spinal damage. Had the MRI done then when she looked at the 2 scans which were 5 years apart she concluded there was no further damage to my spine and I was right to refuse the biologic.
I have done loads of research especially using articles from peer reviewed medical journals that any person can access, it`s not just for doctors, and I found out that the biologic drugs are not very effective overall for AS patients. This medical article says only 30-40% of AS patients found improvement on a biologic.
cochrane.org/CD005468/MUSKE...
Another article I found said that biologics do not have a significant reduction in spinal fusion and ossification and that biologics are usually more effective in males under the age of 40 who have had short disease duration, without enthesitis, good functional status and have a high C-reactive protein level.
ncbi.nlm.nih.gov/pmc/articl...
It`s up to you what you do as it`s your health but many AS patients don`t find biologics help them even after trying different ones as the science proves it.
I manage my AS with daily light exercise like swimming, cycling, walking, physio exercises and taking daily vitamins and minerals like krill, fish oil, D3, B, C, magnesium, zinc, etc and being careful what I eat by being on an anti inflammatory diet avoiding crap and eating foods that reduce inflammation. It works for me but you must find what`s best for you.
Thank you for your message and info. I'm glad you've found relief. It's something I need to consider. It's just so sad to think that I won't be able to have the odd treat every now and then. I'm going to speak to rheumatology urgently.
I can agree with this personally. I've found zero benefits from any of the drugs I've taken, other than steroid shots for severe flare ups. The side effects experienced have been horrendous from other drugs...and I've tried a few! Perhaps I've just been really unlucky!
I think you have given it long enough. Go back.
I am also getting more pain from Imraldi than I had before. This morning I have got up and can hardly move my legs so a about to start a stretch and relaxation workout. Been on it since end October and got the same feedback as you - try it for a bit longer. I have a review next week and am at the point where I am considering going med free (also on sulfasalazine and methotrexate) and trying some alternative therapy - any suggestions greatly appreciated.
I find warming it up to body temperature (sticking it down my bra) for 30 minutes takes the sting out of it.
It took 5 months to work for me. Now I wouldn't be without it. It's changed my disease from severe to moderate activity.
Sorry for the long post!
After many years on another biologic, Etanercept , it stopped working and I was changed over to Adalimubab. My joint pain had already increased in the gap between the Etanercept stopping working and starting the Adalimubab. I felt really fed up because of what I could no longer do - the Etanercept really had changed my life to the good! My rheumatologist reviewed me after three months, enough time for the new biologic to start working, saw the state of my joints, said there wasn’t any evidence of Adalimubab working so put me on a JAK inhibitor, Baricitinib. That was in February and it started working almost straight away.
Hi, I'm on adalimumab for the last 3 years. I seem to remember that I got relief after my 3rd to 4th injection which is around 8 weeks. I hope that it will start working for you soon.
Thank you to everyone for the replies ,its much appreciated.
Today I've had a much better day. Don't feel depressed or rough. Pain still moderate though. I'm calling them this week. X
I'm so sorry. I understand your frustration. I had absolutely no benefits from this drug, but suffered awful side effects. Blisters all round my mouth. Gave up after about 3 months of fatigue and side effects.
So sorry to hear this. What are you on now?
Nothing other than steroid shots about twice a year.
Feeling a lot of social pressure!
Explaining pain and fatigue to colleagues
Pain and extreme fatigue
I have lots of questions this week!
Feeling fatigued or in a cant be bothered mood?
