DMARDS & Biologic

[Piglet007]

Good morning to all. It's been a while since i posted, but i am active every day reading with you all, its very helpful. So, as a reminder, I was diagnosed last June, and put on triple therapy, pred, injections direct into my shoulders many times. by December i was so unwell with pain, no relief etc they pushed me forward for biologic that was given late December. Within 2 to 3 weeks i was feeling better, my pain was much less, my mood was so much better, I felt like life was going to be better. I'm never going to be me again, but i can enjoy the day now, i still have a few bad days, still have a lot of fatigue, brain is mush but the pain is better and we all know the difference it can make not to be in such debilitating pain, I'm now generally stiff and a bit cumbersome lol. I have a face-to-face with rheumy next week and wanted to hear anyone's thoughts on my questions. Ive been asking to get off some of these dmards, as i just feel they did nothing for me for 7 months and i only really ever felt different once i got the biologic. They have constantly said over this past 6 months that they feel i need all dmards, and bio, as i tested very positively for anticcp (+340) and have what they term as an aggressive RA and they think if my inners (kdneys etc) are coping then they are reluctant to take me off two of the dmards. I understand they say they MTX works well with the bio, and im happy to continue injecting that, although at times i have had to come off it due to low white blood count and neutrophils. They took me down from 25mg to 15mg, and even at 15mg, at times ive had runnish results. Is anyone out there on all DMARDS and a biological. Im sick of taking these pills as I feel they are not the success to my feeling better? thanks in advance for any help.

[Hidden]

Hi piglet this flippin disease is a difficult one . I’m on MTX and baricitnib. The MTX and a biologic is preferable it helps your body to accept the biologic so my nurse said and the biologic will work better. A lot of people take triple therapy and you say your disease is aggressive. If it’s working and your rheumatologist is happy I would not rock the boat . Reducing meds other than side effects usually happens when you’ve reached remission.

I would ask them what the long term plan is if things continue as it is or if things improve. Hope this helps.

[KittyJ]

It’s still very early days for you Piglet. Don’t be in a rush to start reducing your meds. None of us like taking them but sometimes it’s what has to be done. I wouldn’t want to risk flaring by coming off meds too soon. You don’t want to go back to the beginning again 😔

Your rheumy will have a plan for you but it may be a longer term plan than you’d like. But it’s important not to rush things. Dmards with biologics are a common med to take and the combination you are on might be the best for you at the present time. What makes you feel they are not the success to you feeling better?

[Piglet007 in reply to KittyJ]

Thanks Kitty

i think it's because i genuinely only felt relief after having the bio..... it can't possibly be such a coincidence that my pain was less after the bio and think that suddenly the dmards were working? I guess I just wanted to know if it was common that many of us take more than 1 bio and 1 dmard?

[KittyJ in reply to Piglet007]

I wouldn't think it's suddenly the dmards are working but more that the combination of them and the biologic is working better. I've taken three dmards before until one caused problems but took two and a biologic also. What matters is what works for you and that could be one, two or three at the moment. Many take a combination of meds, depending on what works for them. It's different for everyone. To be honest if you've found the combination that works for you within a year that's good going 🙂 You never know, in the future you may be able to reduce one or more. Fingers crossed for you.

[Deeb1764]

To me it’s a bit like pacing you think you feel great so rush out and do everything and then the next 3days your body kicks back. Maybe look at a long term plan to reduce but maybe early days for the moment x

[medway-lady]

I take AZA and use Benapali and it's just something I don't think about anymore. The RA is under control and so I'd say yes it does make me fed up too but the alternative is much worse.

[helixhelix]

If you’ve been on the biologic for 6 months I think it’s reasonable to ask your rheumy about a very, very slow reduction in your other drugs. I did try to drop drugs for ages with no success, but since I moved to a biologic things have been better so trying again. Although now only on biologic and MTX, I dropped all the other DMARDs after it seemed that the biologic was working.

I am tapering MTX at the moment and am dropping a single dose every 6 months - so super slow (basically because I see my rheumy every 6 months).

[charisma]

Hi P

I was diagnosed with ‘Strongly Anti-CCP RA.

I have noticed that different methods of aggressively treating RA exist; some recommendations are for one DMARD at high dose. Others say two DMARDs, still others say three.

Personally, I am grateful that I was started off on only one as it quickly became clear that I was experiencing a reaction to it. Three weeks off, blood work back to ‘normal’ and started on HCQ with MTX. Reached remission but it was short lived and MTX had unacceptable side effects.

On to Leflunomide … dreadful dry skin and mouth but it worked! That too was very short lived. On to Prednisolone till got approval for Amgevita (biosimilar of Humira). That made no difference whatsoever.

Fast forward to drug infusions.. takes 16-24 weeks to kick in. Gave four weeks of relief though not pain free by any means. Second round worked much faster. A couple of months of feeling about 90% relief.

And so it goes on…

So if you are in drug induced remission, it might be just the biologic (it is thought it works best along with MTX but I had no difference with both together so am on just Rituximab) or it could be DMARD and biologic combo.

I might be changed to another drug soon as the third round of RTX worked well for a couple of months (had pneumonia within two weeks of that too) but symptoms of active RA returned just as I was clear of the pneumonia. Wrote to Rheumatologist recently, as I do between appointments; it’s in writing, is official and has to be responded to.

If that helps, good. Hope you might be able to discuss what is really the best course of action in your case.

[bienassis]

Hello piglet,

I recently started (14 months ago) on Infliximab (biologic) following a nasty flare after many years taking just MTX. The combination of a DMARD and a biologic is very common and supported by many doctors. My side effects from the biologic are back pain and some joint pain - never present when I was taking the MTX alone.

The advice I've been getting is that as long as the biologic controls flares I should continue with it, and the MTX, of course. The pain is partly relieved by paracetamol and just trying to keep moving (back pain is muscular). My RD is also described as aggressive, but that's because I've had it so long ( 54 years) and much damage has been done.

According to my rheumatology nurse, the flares over the years (no flare lasting more than a few days) have caused the damage. I wonder why you need so many DMARDs. The biologic will be stopping your immune system doing the damage - you say you are benefitting from it, so perhaps you could discuss with your rheumy cutting down the DMARDs - dosage, at least. I was told that the dose of MTX can be reduced once I reach a satisfactory level of control. Currently I have 10mg of MTX weekly by injection - the goal is 5mg!! My bloods are very good.

Good luck with your consultation, and try to get all your points over to the doctor.

[KittyJ]

In what way will they do piglet good Daniel? Do you have RA? All your posting is telling people to take supplements 🤔