Thoughts on the Biologics.....

stickywicket

Collywobble, I do see exactly where you're coming from and I'm not sure how I'd feel myself. Except....as you say, there are so many lines we think we won't cross but eventually do and realise they weren't such a big deal after all.

I think a lot depends on circumstances. I personally think I kind of know myself now. I know what I can take, what I can't take, what I'm prepared to let go of, what I'm not prepared to let go of (unless I have to!) I'm also 65, which means I've had a pretty good innings, all told, considering 50 of those years have involved RA. One thing I've learnt in that time is that, just as you feel you're in last chance saloon with meds & ops they bring out something new.

I guess a lot depends on what other medical problems you might have and how likely they are to be affected by (a) arthritis and (b) meds & their side-effects. If it were me I'd do all the research I could to take an informed decision. If I then decided to go for it I'd go 100% and try not to think about potential side effects. if I decided not to go for it - well, it still remains an option if things get too bad.

One thing to bear in mind is that we're not necessarily a representative bunch on here. There may be tons of people out there living happily with these meds - so happily they've never bothered to log on here!

I wish you well, Collywobble.

dreamdaisy

I couldn't wait to try them when I was given the opportunity and I would urge anyone who has the chance to go for them. The fact they haven't done much for me is neither here nor there - perhaps my expectations were too high but having read scorpio's comments (and some others) I know they weren't, I was just too badly affected. They can make a tremendous difference to the quality of one's life, if you are able to find one to suit, and for that reason alone it's worth a shot. You are always carefully monitored so if there are any problems they are picked up quickly and dealt with swiftly. I am about to start my third year of humira and I shall enjoy what it has to offer while it lasts 'cos it is my third and final go. DD

lindalegs

I'd love to advise you Lynn but can't because I've not gone down that road myself ......yet.

If it was me having to make this decision for myself I would find out as much as I could before committing. I wouldn't worry too much about side effects as you will be monitored so closely.

I suppose my underlying fear would be, what happens if the bios don't work?

Sorry, not much help :sad:

barbara12

Hi Lynn
I cant advise on the drugs, has I have OA, but I do know we can build up phobias, and you will never know if you dont try them.
Let us know what you decide and dont forget we are all behind you.

dreamdaisy

I am amazed that the humira has lasted as long as it has but I think that is to do with the fact that this time the biologic has had the meth to support it. I was promised all kinds of things when I began the humira (and stupid me listened, honestly, you think I would know better by now) and surprisingly none of them have come to pass. What has happened is that my ESR and CRP have been under five for nearly two years. That has to be a good thing. I was hoping that that would minimise joint damage but hey-ho, the OA has put paid to that! DD

scattered

I had the same worries and fears when I was told I would be going onto rituximab. At first I flat out said no way. I wouldn't even consider it. It is the only drug on this pharmacopia that I'm actually frightened of. However, as time went on, and it became hugely apparent that I wasn't getting any better (and that I wasn't going to get any better) I made an appt with the rheumy nurse to discuss it again. I start it in 8 weeks. I'm terrified. But I think I'm even more scared of what's happening to my body without it. My mobility is much reduced, I'm so fatigued it's not funny, I can't do the simplest things.

Anti-TNFs and Biologics are scary. I got a good 2.5 years out of Humira. Ok, it only worked well when I took it in conjunction with 2 DMARDs and prenisolone but it worked. It was the first thing, after nearly 2 years of nothing working, that made a small dent in my RA. With the other drugs included it put me into a year long remission. It was wonderful. Unfortunately my RA fought back and it's won. The Humira has failed and I'm moving up a gear.

I think what I'm trying to say is it's all about weighing up what means most to you, and if that can balance out the fear. RA doesn't (usually) kill you, but it can take your life. For me that fear balances out the terror of the rituximab side-effects, of allergic reactions, of wiping out important parts of my immune system, of being given a med in a way that I have no control over. I feel like I have no choice, not if I want to keep living my life.

I hope you make the right decision for you. Remember there is no shame in changing your mind, or in agreeing to do something while still being scared of it. Good luck.

Poppyg1rl

Hi Lynn,
I do understand you're fears, Humira was my first anti TNF and I reacted rather badly to it :???: it's taken six weeks of no methotrexate,Sulfasalazine and high doses (40mg and above) of prednisolone daily to sort out the damage to my lung.
BUT, in 4 wks time, 8th July I go back to see my Rheumy with the intent of starting Golimumab a new anti TNF.
Am I worried? Yep you betcha! but I'm more worried that if we don't do something now to stop this disease I'm going to lose more and more of my body to this blasted ilness, ive already lost my index finger and thumb on left hand, they resemble a claw, despite weekly hand therapy with a physio and I sleep with a splint. My knee and elbow have been aspirated and I'm using a walking stick, all in the space of 15 months, I'm 39.
I'll do whatever I have to in order to function and regain some of my mobility and if that means taking anti TNF's and running the risk of reacting so be it.
BUT that's me, we're all different, if I think too much about it I could easily talk myself out of it I've always been a kind of 'jump in with your eyes closed' kind of girl and that's the only way I can get through it.
I sympathise with your predicament Lynn, it's not an easy decision to make, talk your fears through with your Rheumy or nurse, failing that, the helplines are good pm me if you ever want to chat
Much love and hugs xxx

dreamdaisy

No, you don't need to get a grip, it seems to me you have a pretty sound one already. These drugs are hugely scary if one thinks about it, so I find myself once again thanking my good fortune in not ever really ever having good health, that means that I am so used to taking scary meds I don't ever think twice. I have guinea-pigged one or two for asthma and would cheerfully do so again for arthritis. You are the sensible one, to be asking questions and weighing up the possible consequences. Don't let that stop you gaining benefit tho, however small. Life is far too short to ignore the possibilities of the benefit to, and improvement in, one's condition. DD

salamander

Hi Lynn! Of course I was nervous about starting anti-tnfs but the improvement in the pain (though I still have it, it is early days for me) is really worth it. I have been able to get on with some things in my life and now worry they might take me off them due to infections I get. Hopefully, I will be able to stay on them, can't imagine life without them.

You are right to weigh things up, I did and decided that I would rather have a short time of good quality of life than longer without. My decision but yours might be different.

Best of luck.
Sal

woodbon

Hello, the first reply I wrote has gone into the either! What I wanted to say is this, its your choice, don't be rushed into it, but don't write it off eather. Discuss it with as many people as possible and remember, a lot of people who are having trouble come to this forum looking for help. Others are taking it and living busy lives.
I don't have a right to an opinion really, as I have OA.
Good luck with your thoughts! I hope whatever you do works well for you. Love Sue xxx

dreamdaisy

I was wide awake in bed last night, my brain spinning and reeling and whirling like it does from time to time (and no, the relaxation and breathing didn't help so I went with the flow! ) wondering about my life and why trying to live it has become so difficult. It was, quite honestly, one of those nights where I found myself wishing that the asthma had finished me off ( it came close to it on two occasions and very, very close on one but it lost its nerve). I then found myself longing to go back to 1997-2002 when it was only the one knee that hurt. I thought life was tough then - stupid stupid girl, on reflection those were the halcyon days of this dross and I would give anything to go back to them. Dream on, Daisy.

My life has its good parts still, I know that, but these are steadily being eroded by the PA and OA combo - but that is what I have to deal with, no-one else. It's up to me to make my life work for me as much as I can - though truth be told I resent every single bloody moment of having to do so. I was used to the idea that doctors mended you - I suffered from apalling eczema then along came Betnovate C. Skin mended. I suffered from dreadful asthma then along came Intal and Intal Co and de-sensitising jabs. Breathing mended. Now I have arthritis and along comes - nothing. I swallow and inject and try to get on with things but all there is pain and pain and more pain, then just to make change more pain with a lovely dollop of tiredness on top. I was used to doctors mending me but now, as far as I am concerned, they have failed me, and millions like me - BUT -

These meds can and do work. That is the little ray of light that one has to keep walking (stumbling, tottering, crawling, reeling, wheeling) towards. But they can only work if you try them. I lost my fear of meds when I was a child - I guess I had my mum to do the worrying then but I have no idea if she ever did. You will have gathered over the time that you have known me that I am (usually) a positive and up-beat person, I am one of life's Tiggers (who has the occasional Eyeore moment) and that is a definite boon. Eyeore won last night, but Tigger is making a determined comeback. Hard luck everyone! DD could be bouncing!

stickywicket

collywobble wrote:

I'd love to be able to take all this in my stride, without the angst it causes.

Collywobble, I think it's very sensible to do all the research well before push comes to shove. Everyone's reactions will be a bit different because we're all different in different circumstances. Now, at my advanced age I wouldn't worry as much as I would have done when the kids were little. Then, I worried about having 2 new knees but worried more about not having them.

I'm a big believer in getting as much info/sorting out as much as possible before crises arrive then, as/when/if they do just going with the flow.

Whatever happens I'm pretty sure you'll make the decision that's right for you.

stickywicket

Come on now, Collywobble, say after me - 'I shall not google. Googling can seriously damage my health.' Repeat it 10 times or until it's sunk in.

I did wonder if you might get 'better' results if you actually started a thread asking 'Have you refused biologics?' (or somesuch.) Just a thought.

ironic

Hi Lynn,
Fingers crossed that the increase in the mtx works for you and the decision of Biologic meds will be academic for the foreseeable.
Of course you are worried and yes it is a great leap of faith as it does seem to be the last defence to us newish ones. So we naturally want to keep “IT” in reserve. I cling on to the fact that research is ongoing and hopefully by the time I have to confront the elephant in the room there will be alternatives to try first. So shove over and make room in that lovely sand pit for a little one. Saying that there are others that have been unable to tolerate them and alternatives have been found which surprised me. Sometimes simple combinations of the first defence meds have worked. OK it could be wishful thinking but there is nothing wrong about that.
At the moment I have been given the option of increasing my mtx at my own pace which is good for me as I need that breathing space. It took me months to agree to taking Hydrox and I did have reasonable results from that but it was only when things got to signs of damage that I went back and hence the mtx. So if you want to join me in the mtx increase stakes, then I am coming up on the inside rail down at the left hand of your screen. I’d put ear muffs on though as there is a lot of burping and OMG utterances going on for two days after the tab swallowing!! Now where did I put those spare blinkers???

Hey maybe 15 or 17.5 will be the magic number for both of us. Just a nudge is all that we need, yes?
Lv, I x

salamander

I disagree with the non-googlers! I google like crazy and it really helped me make an informed decision. Mind you, having a nursing background probably helps a little bit but I think it is good to find out as much as you can. I always want to know the worst and the best case scenarios, recognising that most people fall somewhere in-between.

Lynn, nice to be in touch again. With you well with your decision but for me, it became obvious what to do.
xx

dopeykit

Hello,

I thought I would add my tuppence worth

I am on max MTX, sulfasalzine and Humira for PA. The Humira is honestly the least troublesome of all of the medications. It doesn't make me sick, hasn't messed my blood counts up like starting on MTX did and is really easy to administer. Plus, I only have to do it once every 2 weeks.

I was desperate to get on to it so I didn't really think about it that much and my consultant and rheummy nurse have been wonderful so that has made it all easier for me. They did also say that there are some amazing drugs being developed at the moment and doing really well in trial stage so it's nice to know there are still some options in reserve. For me it was a case of further operations or taking the anti-tnf. I'm quite young and we want to start a family so I was weighing up taking it and hopefully improving or knowing for sure that I would get worse and maybe lose the ability to run around after nippers. I'm quite gung-ho about drugs though - partly working in health and partly just wanting to kick the PA's butt!

It hasn't been a miracle drug for me but it's better than the alternative. Definitely talk it over with as many people as you can - it is a very personal decision but I'm glad I started on it.

Hope that's a bit helpful

Kit

tkachev

I'd tried so many meds which seemed to work at first but the pain would return full blown within weeks. I had massive problems accepting MTX and it was quite a while before I actually took them after being prescribed. It was the 'hair loss' that worried me. A nurse helped me through that as she was kind and helpful. None of this 'don't be so silly' stuff.

By the time I got to Biologics I was exhausted by everything. I had no hopes or fears. What could be worse than the pain I was in, the struggle to look after my children and home, the loss of a proper relationship with my partner.

I just thought nothing of it and was mightily surprised when the first injection brought me such relief.Now I look forward to taking the injection(apart from the chest infection but even that is better than the pain).

My real issue was the THR. I could not bear to think about it.Eventually it had to happen .I was tearful and fearful and very angry that it had come to this. But that turned out to be a blessing too.

Elizabeth

stickywicket

dopeykit wrote:

They did also say that there are some amazing drugs being developed at the moment and doing really well in trial stage so it's nice to know there are still some options in reserve.

I do think that's an important point, Dopeykit. I'd be considerably richer if I'd had a tenner for every time I thought I was in Last Chance Meds Saloon only to discover when the current one stopped working that the inventers were ahead of me.