What next?

I saw my rheumatologist on Friday. I've now failed 3 DMARD s ( Sulfasalazine, Hydroxychloroquine , and MTX although technically that failed me as it's causing a real problem with hair loss)! The rheumatologist has two suggestions, I can try Humira or I can stop taking everything apart from pain relief and know that I will always have some pain. The second choice fills me with despair. I've been in pain for half of my life (severe pain for much of that time). He said that the spondylitis doesn't usually cause terrible joint deformity so this is a viable option. I don't really know how he can say this as he has never actually even looked at my joints and I've never had scans or X-rays of any joints except my feet and I don't think that he's even looked at them as they were done abroad. Everything has been done on bloodtests. I told him that the thought of continuing in pain is really depressing as I have problems with many pain medications and can't take them so I know what my life will become. I can't face that, I've been there, done that, no thank you! So that leaves Humira and all the side effects, risks that may entail. I've been reading up on it and it may/may not help with my inflammatory bowel disease, so that's another question. So will need close supervision from gastroenterologist. I'm not asking for advice, just want to know your thoughts as I'm in a quandary. I thought I was okay and had decided that I would try Humira but today I just feel a bit tearful and in two minds. How stupid is that? Does anyone know what the criteria is for anti TNF and spondy? Sorry to be such a misery but although my husband is brilliant sometimes he isn't as sympathetic as he could be. He seems to think that everything should be black and white and that I shouldn't dither and should just make my mind up! Clemmie

13 Replies

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  • You don't want to be in pain forever. I'm just about to start my third biologic, don't research the side effects too much or take too much notice of them, you will be monitored while you are on them. You wouldn't be recommended for them if the rheumy didn't think they would benefit you. Pain and inflammation can be at least as bad for you if not worse than the side effects of treatment. Good luck! XX

  • Thanks, Dogrose, I know that I shouldn't read so much but as an ex nurse, I can't stop myself! And no, I don't want to be in pain forever. You've hit the nail on the head. Clemmie x

  • Hi Clemmie,

    As we both have the same type, if you look up NICE then they highly recommend Enbrel for ours, this is the one that I am on and it does help my IBS-D as well. Having said that at my choices stage for anti-tnf it was either Humira or Enbrel, we decided on Humira. But the hospital changed this at the funding stage to Enbrel as they thought it would be better.

    Maybe yours might do the same either way you could ask for their thoughts on this.

    And yes it does cause deformities in our hands and feet, that's why we are rushed on them sooner rather than later. And the pain. goes from 10 to 0-2, I call it my lifeline now, more so since I had to come off it through a chest infection and realised how much the drug was working.

    Just my thoughts for what they are, Clemmie, as you know am not a medical person. Good Luck with your thinking. xx

  • Thanks Georje, the rheumatologist only said Humira, no mention of Enbrel at all. He mentioned one of the others (memory is terrible at the moment) but said that was not good with colitis. I think the problem is that at the moment I am not in terrible pain, it's just there, nagging in the background. But I know how bad it can become and I don't think that I can face that any more. Also, I see the rheumatologist here privately and the insurance won't pay for biologics so I would have to be referred on the NHS and that will cause problems with appointments etc. So he's going to email the doctor in Saudi his recommendations and we will see if I can get it there. So I'm still thinking, but it helps to know someone who has gone through this. Thanks again. Clemmie x

  • I'm of absolutely no help regarding the decision you're needing to make Clemmie but can send you my hope that if you do decide on Humira it's the one that helps. Continual pain is so wearing & little doubt that's also part of the reason you're tearful. It's a facer & you know too well where it could lead & wouldn't wish you go down that path so maybe it could be the better option? Having been offered it maybe give it a try. Weighing up the options in your position I would as I don't think the other one you've been offered would be better of the two with having intolerances to pain meds. Only you know if you can continue as you are but think you know the answer really &, like I have done, need a little reassurance it is the right one.

    I had a quick search just how Humira could affect your colitis (knowing little about either) & found that is also used for the condition. Don't know if in your searches you've come across this?https://www.humira.com/ulcerative-colitis/consider-humira-for-UC-treatment

    Whichever decision you come to you know you always have us to run anything by, or just turn to. We understand things aren't always black & white!!! x

  • Thanks Nomoreheels, you are saying what I'm thinking! And I know that is the right way ahead. I've got a few more weeks before I go back to the desert and have to make any decisions. So will keep thinking and will probably change my mind a dozen times but will let you all know what I decide but really there is no decision as I don't want any more pain. I will look at the link you posted. Clemmie x

  • Hi Clemmie. I do completely understand why you are feeling tearful. It always feels like Hobson'a choice when we have these decisions to make somehow.

    It is hard but I think if I were you I'd go for the Humira. I don't really know about this idea that PsA doesn't cause erosions or deformities as RA can do. I have three friends with PsA and two of them have OA that is secondary to their PsA and in their cases they have suffered with mobility issues a lot because of this secondary OA.

    So it may well be the case that PsA doesn't directly cause deformities in the way that RA can but I know that they were both put on anti- tnfs quite fast because the criteria is a bit different and the DMARDs supposedly don't work as well as Biologics do for PsA.

    So far my RD has been non-erosive although my rheumy pointed out I've spent much of the past three years on DMARDs and steroids. But like yourself I've tried and failed three DMARDs now so if/when my RA flares up again as clear synovial swelling I was told by my rheumy that I would meet the criteria for Biologics. I'm very much hoping this doesn't happen of course.

    He didn't say which biologic though although he mentioned that I might want to try Leflunomide prior to this if the RA doesn't sufficiently flare to meet the criteria. So on this basis I've decided to take the plunge and stay drug free for as long as possible.

    If my skin were to flare up badly with eczema or Rosacea however - as it is already doing a little - and if the pain of this small fibre neuropathy continued to wake me in the night or progress even further I might be very tempted to try Leflunomide next because Methotrexate did help with these things too and I find these a hard mix to deal with.

    What I'm saying is that for me it's a risk I'm prepared to take for now but I don't have Colitis or PsA. Good luck with your decision. Twitchyx

  • Hi Twitchy, I'm of the same opinion as you, that the risks are worth taking if there is a chance that Humira might be my "wonder drug". I will probably go for that when if I'm offered it when I go back to Saudi. I will just keep changing my mind until then but know that in the end that will probably be my decision! Clemmie x

  • Hi, sorry you are in this position, it's so difficult when you need to make this sort of decision. I am now on humira, 9 weeks in, having failed with rituximab and enbrel. The possible side effects are grim, but not as terrifying as those for rituximab!

    I feel that you have to weigh up these possibilities against the proven effects of uncontrolled RD. For me it was a no-brainer, the thought of enduring the pain with no effective relief, and the possibility of more joint damage, meant that I really didn't have any choice at all!

    As for the humira, the jury is still out, but I live in hope!

    Good luck with your decision. M x

  • Just picking up on the point re. PsA and erosion / other forms of damage. I have PsA and secondary osteoarthritis. Recently there's been some concern that PsA might be affecting my liver too, though so far so good. PsA certainly can cause joint damage, I know that for sure. I'm less sure about some of the differences between PsA and RA as there's so much overlap but my impression is that PsA can be sneakier, that's just my view though, garnered from many discussions on PsA sites. By sneakier I mean that it can lie low, for example many people with PsA (and some I've heard about with RA) rarely show elevated ESR or CRP despite other kinds of evidence of active disease.

    I realise what you actually said was that your rheumy reckons that spondylitis doesn't cause terrible joint damage. I just don't know about that, but it's the word 'terrible' that jumps out at me, any degree of joint damage in the spine is to be avoided I'd have thought.

    I started Humira last week. I've been researching and weighing up the biologics option for some time. I now feel that they are probably the safest drugs available. Again, that's a lay-person's view of course, not a medical opinion and no drugs are going to be risk-free or side-effect free for everyone.

    Whatever you decide, good luck with it all.

  • I am so grateful to you all for your input. I'm one of those who doesn't have an elevated ESR or CRP, except I did have an extremely elevated CRP in April but was particularly unwell with colitis at that time. But that doesn't mean I'm not in pain and I already have damage in my spine ( I had surgery in 1998 on 2 vertebrae). And the thought of more pain is so daunting for me. I was beginning to think that perhaps I was making too much of a fuss and maybe I should just go down the pain relief route. But having all your input has reinforced the fact that my concerns for my future are valid and I will definitely be pushing for more treatment. Thank you all. Clemmie x

  • Bit late to this one, but one of the other things that is no doubt in your mind is the longer term stuff. I get the feeling that you're still youthful (ie under 60 in my definition, middle age is 60-85 and then after that you're getting old). Well my experience is that ageing brings with it all sorts of added pains, aches, etc etc so trying to get as fit as you can before it all hits is important as sadly it's a one way street. And if you're in pain and with even a tiny bit of damage even if it's not "terrible", then that's adding more burdens. So grab stuff you can now, and you can always stop if you don't feel the benefits pan out.

  • "Youthful", Helixhelix you've made my day! I'm 50 so if 60 is middle aged then I'm definitely youthful. Thanks, Clemmie x

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