To biological or not to biologic

[Joeyrabbit]

Looking for opinions. I was diagnosed a little over a year ago with RA. I have been on max dose injectable MTX, doing quite well on it. Minimal side effects and blood work and pain under control. Since it's been over a year, my rheumy had me do repeat x rays on my hands and feet, to compare. X rays do show some additional damage in my right hand, but they cannot say for sure if it is due to the RA, or osteo arthritis, as I have both. My rheumy feels that as it might be due to the RA, it might be time to introduce a biological, to avoid further damage if possible. But if the bone erosion is due to osteo, taking a biological right now will be useless. The choice is mine as to which way to go. Any ideas or suggestions?

[helixhelix]

What a good rheumy to be prioritising you rather than budgets and NICE guidelines! I'm on the traditional meds, and have never quite made the DAS grade for biologics, but am happy to stay with what I have right now as they seem to be controlling things well. When there was a possibility of changing the things that swayed my decision were

a) my age - I'm still under 60 so don't want to use up all the drug options too soon as I might need them later (my doc gives biologics to the over 70's, not all do it seems)

b) my lifestyle - i spend most of my time in a very remote location and spend a lot of time outdoors so always have cuts and grazes, and there is a slightly higher risk of serious infections with biologics than the traditional meds, and the nearest doctor is a long way away, let alone a hospital.

c) I travel a lot and didn't want to be hampered by meds that need refrigeration

And d) there's no guarantee that biologics would work better for me as it's so individual!

So I suggest you do the same sort of think and list pros & cons that suit you.

[Hidden]

What a difficult choice for you when the information you have about erosion is rather sketchy. I agree with Helix - you need to write down pros and cons including your age and location because things are going well for you pain wise with the high dose of MTX so it must be tempting not to rock the boat.

Has your rheumy mentioned adding in other DMARDs as an alternative or has that already been tried?

I haven't yet met the criteria for biologics - which is a good thing of course - although I met a consultant rheumy socially the other day and he told me I should be trying anything and everything to get on one! I'm currently off all RA drugs because of awful side effects - last dose of injectable MTX was three months ago.

No real sign of RA coming back although I have been struggling with severe peripheral neuropathy so not exactly flourishing.

If my RA comes back as it first presented at diagnosis, then I will be offered a biologic - so I am doing my level best to postpone this. If I am told that I do need another immunesupressant drug then I'll go for it though.

Sorry this stuff about me doesn't help you much because it seems you tolerate drugs well. But RA throws up complex decisions quite often I feel. Good luck and let us know what you decide.

[ambita in reply to Hidden]

Hi Twitchytoes, could you please tell me what is peripheral neuropathy? Is it to do with neck, nerves problems? Thanks Ambita

[Hidden in reply to ambita]

Neuropathy is nerve pain and tingling (pins and needles plus), numbness, burning and chill. Your peripheries are hands, arms and feet and legs - could be neck related although I don't have any pain in my neck area presently. Hope this explains.

[ambita in reply to Hidden]

Thank you Twitchtoes!

[lucymead in reply to Hidden]

Thanks from me too . I have had all of those while I was taking Leflumonide which I recently had to stop due to High blood Pressure. I am now on Benepali only and have no more tingles or anything else.

[PJsorefeet]

I can only speak from my experience, I was on max dose mtx, hydroxy and antiinflams was doing ok but had a lot of fatigue and found my tolerance to "over doing it" was non existent.

after 3 weeks on enbrel there was a MARKED improvement. I was able to do more with young kids without 'Paying' for it later. The side effects appear to mainly be theoretical (as i read it anyway).

Id go for it, I found it really hard to get hold of the biologicals so if they are offering it I wouldn't turn them down lightly. You'll prob be able to reduce your mtx dose right down, I did now only on 10mg, i even got rid of my anti inflams and hydroxy too.

Good luck with whatever you decide

[farm123]

Very difficult choice to make as there is probably no right or wrong answer. There is no way to reverse joint damage so anything to reduce or slow the rate of damage is good. From my personal experience the biological have less/no side effects compared to DMARD's. As with DMARD's it is a case of finding one that suits you and will work for you, and your lifestyle - some are self inject, others are infusion. The evidence is that they all work best when taken in conjunction with MTX but this could be at a lower dose than you are currently taking. Farm

[stbernhard]

Hello Joeyrabbit, I can only give my personal view. I was on steroid for a year, 25mg of MTX and sulfasalazine. Now off steroids for 3 years, 15mg MTX injection, 3gr of Sulfasalazine and CIMZIA. The biological has enabled me to get my life back in every respect. I can go for long walks, fatigue is still affecting me, but only minimal. As fas as I am concerned the biological is heaven sent. I would have no hesitation to highly recommend them. Good luck.

[Campaigner in reply to stbernhard]

Hi all,. Must say I find this site most comforting to read.

- thank you all. You are all sooooo knowledgeable and kind to each other.

I am hitting the criteria for biologics and really keen to have them.

I take 20 mgs prednisolone and going up to 20 mgs mtx. Have to wait 8 weeks for appointment. Have flare at the moment and extreme fatigue,. I am reluctant to have infusion of high dose steroids on offer as they may mask swellings and unaffected the decision. Please advise if this is the correct decision?

[Judetheobscure]

The biologic Enbrel has worked brilliantly for me for several years: I also no longer take Naprosyn or Paracetamol. I suppose you would be hedging your bets if you introduced a biologic for if it is RA that is doing the damage anything you can do to control it or slow it down its progress would be beneficial.

[Pands]

Interesting that your Rheumy can't tell for sure if the damage is erosions (RA) or degenerative (OA). They do look different on X-rays. However if might be that the changes are minimal so hard to differentiate at this point?

All I can add is that I do have a great deal of RA erosive damage to many of my joints due to uncontrolled disease activity and this has stopped after being on Humira for 7 years. However I also have a lot of degenerative damage now due to the erosions and this is what causes my pain and distorted joints . I still have to take painkillers and anti-inflamms etc due to this pain- not inflammatory pain. You don't want the damage if you can at all help it. ( I am 43 now ).

[NeonkittyUK]

I had to try biologics due to the fact nothing else was working and more joint damage was being done. My ESR was very high, only lowered by steroid injections so the RA needed to be brought under control. Tried Enbrel and Humira but not much luck on those so now on Rituximab which brought down my CRP under 5 in three months. Nothing has ever done that so fast. Can feel lots of benefits but also feel it may be creeping back in so have to ascertain (just had blood tests) to see if it is still working for me, or I need my next infusion yet. Your blood results will show what inflammation is present and if a biologic could help bring that under control. The Anti TNF's did not work for me but do work remarkably well for so many. We are all different!

I am like Pands ... lots of erosion and damage .. a lot is manageable but some is sadly not and will need replacement eventually. As long as Rituximab is doing its work I should not get any further damage but the wear and tear stuff is already done from years ago . . quite early on in my RA and some last year. Rituximab has stopped that totally seized feeling and given me back a lot of movement although I am still tired and have a lot of morning stiffness and some mobility madness as the RA affected one knee and ankle badly. So, the same from me as what all other biologic takers have said ... do go for it if offered, if it is RA flaring again/your current med not controlling the RA ... as it can make such a difference. Just to be able to sit without that insane flashing pain like electric shocks going through me is fantastic. Anti-TNF's are well tolerated by most and work for many, many people!

Also Helix is right ... write down your concerns .. the pros and cons .. you will meet with the rheumy/biologics nurse to discuss it all if you want go/are eligible to go ahead, but often writing it down does help. I did a lot of research (it's my nature!) and to be honest that can confuse. The hospital can tell you what you want to know. There are also excellent NRAS guides to all the meds on their pages. Often we can focus on the negative things and be put off all the benefits. Here there are plenty of people who would encourage you to go for a biologic .. including me! I was scared myself about 18 months ago and the lovely people at NRAS and our own Forum friends here helped me feel assured. It is only natural to feel apprehensive about a new med. Good luck.

[Wyaatch in reply to NeonkittyUK]

What is an NRA? Thx. Hi

[helixhelix in reply to Wyaatch]

National rheumatoid arthritis society. nras.org.uk

[Campaigner in reply to NeonkittyUK]

How reassuring.

[Joeyrabbit]

Thank you all, excellent advice. I am still going back and forth, but a lot to think about. And yes, I do think I have a very thoughtful and progressive Rheumatologist!

[justjoy54]

Hi well my nurse has just rang to say she is on her way to show me how to give my self humira injectionss scarey!!!! Ive been given this after methotrexate tabs and hydraoxycloaquine have not been totally successful. I turnex 60 on monday and I have Ps Arth and Ost Arth. They say they are giving it because im so young and want to help prevent the damage as it slows down the cells that are attacking our own bodies therefore the joint damage will be better protected. You know none of us will be 'cured' from this disease as once it has attacked you its progressive BUT they are doing marvellous work with research and development and donations towards are always greatfully received. Good luck to you and hope you are sble to find your way with decision making xx

[Shy535]

Hi, that is a tough decision, glad you have a supportive doc. I was on mtx, plaq, high dose prednisone, and it wasn't enough, so doc took me off mtx and introduced Humira and sulfasalazine, I wasn't crazy about the self-injections, but wanted relief. I tried Humira for about a year, but it didn't work for me. I'm now on Actemra, once monthly infusion and all of the above minus the Humira and I've had some relief...but I'm just at the tail end of a flare, so we will see. Anyway, that's been my experience this far with biologics. Good luck to you and hope you find the right combination.

[francherry]

Hello, have you been offered an ultrasound on your right hand? It would give more and different detail to an X-ray so worth asking for one if it isn't offered automatically. My rheumatologist monitors the bone erosions in my hands by doing ultrasound scans, and a particular one in June last year was the prompt for starting me on biologics aged 35. (Also, I had previously 'failed' 3 DMARDs so had to try something else anyway). I think that it would be good to find out for certain (if possible) if the damage is due to rheumatoid rather than osteo arthritis, especially as you said that you are doing well on MTX. It is a difficult choice but I think if they could do this one more test to give greater certainty on the cause of the damage it would be easier to make the decision. Good luck.

[Wyaatch]

Joeyrabbit-does the doctor mean that biologics don't help with osteo? Only RA? How can you tell if cartilage loss( my case) is due to osteo or RA? Thx.

Wyaatch

[Joeyrabbit in reply to Wyaatch]

Bio logics do not help with osteoarthritis. In my case, I decided not to go ahead with the biological as I suspected the damage was osteo related. No further damage has been seen to this point. It is a tough call telling the difference from osteo damage and rheumatoid damage. I guess as I have had osteo problems longer, I was more instinctually aware of the difference. But it is taking a chance either way. Had there been continuing damage as time progressed, I would have tried the biological.