Anyone out there been on tocilimab or abatacept, after being on embrol for about 8 years , ( wonder drug for me ) my consultant decided it would work better with methotrexate, something I had been on many times but found I could not tolerate very well, sickness , fatigue and generally feeling YUK. So in her wisdom, she doubled my methotrexate dose to 15 mg per week as well as the embrol, which put me in hospital with bi lateral pnemonitis. In for 8 days, thought I was dying. After taking me off all meds whilst waiting to see respiratory consultant, this has been since early July, she has put me on predisnone, decreasing dose. Am in agony. Just had letter from resp consultant naming methotrexate as cause of lung problems, maybe on its own or in conjunction with embrol, so he has advised that I do not go back on any of these drugs. He has suggested abatacept, or tocilimab( don't know if I have spelled that correctly) brain freeze today, so much pain! Embrol worked immediately for me, I just home one of these drugs will too. Any comments or advise greatly appreciated. Had RA for 30 years, so no stranger to this condition.
Hi Carole, I have tried both Tocilicept mab and Abatacept. Toc worked well for me for about 18 months and I was really quite well, then is just stopped working. I went onto subcutaneous injections with it and whether it was that that changed I dont really know. Abatacept was also great for about a year, then I changed to subcut... well I should know better right... it wasnt so effective and I had cold sores all the tie and some fatigue. Now I am back on Abatacept but infusions monthly... I have major fatigue at the moment, almost think it is just too much for me. Last month I had it at 6 week interval and I was good for the last 3 weeks of that. I am going to see whether I can have mine 6 weekly or reduce the dose. Either or was a good drug though, worth a try. Sad that it is trial and error until we get some genetic testing or assay to tell us whether a particular drug will work on our particular RA.... its just a lottery Im afraid. Hope it works for you All the best to you
Theresa
Hi Carole, were your symptoms not being controlled for your Rheumy to increase your methotrexate? If it's not broke why mend it! I too have had problems with Methotrexate including fibrosis and pneumonitis / chest infection and under the care of a Respiratory consultant. I was on 10mgs. and Etanercept. I was also treated with prednisolone while these were stopped. I eventually restarted the Etanercept with a decreasing steroid regime. The Etanercept made a big difference but 'missed' the methotrexate. Things are not too bad but the joints become more painful with every decrease then seem to settle. I've agreed with the Rheumy and my GP to reduce the steroids as slowly and gradually as necessary. I'm also taking bone protection. I'm just a bit concerned now in case my Rheumy wants to swap mine. Are you possibly reducing your steroids too quickly? Hope you get some relief soon. Carol x
Definitely need more research. I know it is but it shouldn't just be down to trial and error. I'm pinning my hopes on the futuristic biomedical device but I may be in for a long wait! LOL
Best wishes to you both. Carol
Thank you treezsh for your comments, I am a little afraid at present as not sure what or if I have damage to my lungs, but if I had my way, I would go back on embrol, It worked so well for me. Will know Tuesday what the outcome will be, as have to see rheum consultant. I have to say I do not have much faith in her, had her only 2 years after long time consultant retired. He was marvellous, and would always fit me in for joint injections when I was having major flares. Took me 5 weeks last year, to even get to see my new consultant, all the time in pain. At present I have large ruptured bakers cyst affecting my knee, calf, leg. So painful, had it for almost 5 weeks, and have asked to see doc, but no joy. Anyway, thank you once again for your comments. Take care
hi carol, my rheumatoid consultant increased my methotrexate even though I had said it made me sick, when I checked back through my medical notes( I paid for these after my DLA was taken off me, and I was refused PiP) it clearly stated that I could not tolerate high doses of methotrexate, obviously she did not read my notes. I have had this consultant about 2 years, as I have said in my reply to treezsh, I was on 15mgs methotrexate and the etanercept. I am still on 15mg prednisolone, should be decreasing, but flaring badly so have continued on this dose. This has side effects of me not being able to sleep. I either cannot get off to sleep, lying awake till 3-4 in the morning, or I wake at about 2.30-3 and am wide awake. Also stomach problems, acid. Was given omeprazole but that gave me stomach cramps and running to loo, sickness. This has now been changed to lanzaparole. So am keen to get on to biological, and hope it works. Thanks for your comments, take care
Hi Carole, I on a biological Benepali works great no side effects, not been on the ones you said, on methotrexate for a week sometime back ended up in A and E terrible gut problems.
Hi Carole
What you went thru sounds terrible So sorry that the rheum decided to add MTX. The studies have shown that the biologic and the MTX work well together and perhaps would prevent the biologic from all of a sudden no longer working. But sadly not in your case
Hopefully one of the 2 drugs you mentioned will work well for you. It's awful that's it's trial and error on these drugs. I was on Humira and had awful side effects so was leary to start Cimzia as it is in the same class of TNF blockers according to my doctor. But it's working
Luckily my husband still works or I would not be able to afford it but we have employee insurance and also Cimzia company pays the cost for a certain period
Next year we will have to go on Medicare (I live in US) and then the drug cost skyrockets to something unaffordable. So one day at a time
I wish you the best on your ned medication and I hope it works as well as embral did
Hi Martin, glad you have found something that works for you. Not surprised about the methotrexate, but it does work for lots of people, hope you stay well
Thanks Carole, hope you get things sorted.
Hi everyone.
my name is Amy. I’m 40 and I have never used a site like this before so it’s all abit new for me. I am really hoping for some feedback from people in a similar situation.
I was diagnosed with RA CCP positive antibody 6 years ago and medicated on Hydroxychlorine. my RA has gotten worse and I often have steroid injections. for the last 8 months ivd been on 15mg of methotrexate or which I hate, cant tolerate well and am seeing effects of hair thinning and the usual sickness. my consultant has just told me that I need biological medication and I am really unsure and worried. any advise? thank you.