What would you do?

theresa4

HI all
Some of you may remember how upset I was last month about being taken off the next trial of biologics fopr my RA before I even started. It was due to start tomorrow.

Since then I have realised although my joint pain is very definately post steroid and minimal help from cimzia I dont feel ill!! :?:
What I mean is for the past few years ive felt like i was permanently ill feeling crappy but nothing I could put my finger on and no ENT infection for 5 weeks woohooo.
It seems more than a coincidence that all this coincides with taking biologics and my stopping them.
Dont get me wrong Im dreading the full force of my RA Im already taking pain relief like samrties again, but Im not sure I even want to try any more biologics. They obviously dont agree with me and so far none have worked well enough for me to have faith in them. My GP and I looked back on my notes and he feels im right they do coincide with my regurlar ENT infections although he doesnt say definatively its the biologics as he cant (I agree being scientific myself Im not a controlled experiment )
Does anyone else on biologics feel this way? Im trying to make a decision which I know should be based on me but I like to cover all bases. The downside to this is I will get less care at the hospital if I am on DMARDS (MTX) alone, yearly appointments I think. I am likely to get worse and could end up wheelchair bound. On the other side I could get joint relief but feel constantly ill.
So my question is what would you do?

Hope you are all doing OK
Love Theresa

skezier

Hi Theresa,

This is a difficult one.... they told me I couldn't get funding cus none is just now so I am not on the biologicals. i also have ethics precluding some. But when they first told me I was disappointed....

After reading about how people feel so rough I wonder now if I would like them.....

Its not the same but the mtx makes me feel sick and on occasion be sick. Its 25 and its not working and I wonder do I want it..... Its hard isn't ti?

A lot of people find a biological that suits them and helps them and maybe you could see if a different one helps and makes you feel less ill?

What would I do in your shoes... Theresa till I am in them I don't really know. Leaving a hope you will find something that helps you and doesn't make you feel unwell. Cris xx

julie47

Hi theresa

That is quite a dilema you have there.
I am so sorry but I don't know what to advise you.

Just wanted to say good luck with your decision

Take care
Juliepf x

frogmorton

Gosh Theresa!

What a tricky position you are in - between a rock and a hard place....
l can only say that l wold do what you are doing exactly and talk to everyone and anyone who has a right to an opinion....those who might have tried or need to try biologics in the future and those who love YOU!

Part of me does wonder whether you are coming to a decision......you ahve thought through the consequences of NOT taking the biologic....

Can your decision be reversed if you change your mind?

and how long can you take to think about it?

Love

toni xx

dreamdaisy

Leave the biologicals alone. They are far from all they are cracked up to be (let's face it, they are mostly cracked up by those who don't have to take them) and they don't work for everyone. RA is an unpredictable beast, you don't know (none of us do) how things might progress and you could be pleasantly surprised if they don't worsen. Give your body a chance to recover, you are already feeling the benefit of not being on them, let's see how things pan out, yes? Regarding seeing rheumatologists etc, maybe you could take on a more pro-active role with that and take over some control. They are our servants, remember, we are not theirs. DD

theresa4

HI Julie chris and toni thanks for your replies.

Im very lucky in that where I live its the centre of excellence for rheumatology and Im under the main guy for europe who has with his team secured alot of funding so Ive already had 4 biologic drugs 3 failed 1 half worked then I had an allergic reaction to it. It would be number 5 if I went ahead with another (it might not be my decision they may have decided I cant havre any more :roll: )
Soem of you I know struggle to get your first let alone 2nd ......
I was trying to describe the feeling to my sis in law of feeling like I always had a flu/cold virus run down feeling while on all of these biologics. I dont by any means feel well due to pain and stiffness and sensitivity in my scalp (so bad I couldnt do my hair this morning :sad:) lack of sleep etc etc... you know it I could go on and on....(she thought I meant I felt BETTER!! so I had to explain this).
If its my decision I would ask for a loophole with a view to biologics if it becomes so bad whether I get that i suppose may influence my decision. I think I wouldrather increase my MTX back up (I get ill for 2 days but it helps a bit or it did on 20mgs injections) and have periodic steroid depos. I have a rheumy appointment on June 14th so I suppose its then I need to have thought it all out. Im just hoping someone can go with me as I dread all this on my own. My son said he would but I cant talk about it all in front of him I wouldnt feel comfy. It would help if they read your notes instead of having to retrack everything each time you go explaining to someone new each time. i feel like a record on replay.
Not even sure I want my hubby there anymore as he is finding this all difficult along with his work and money woriies Ive stopped telling him anything I just go to bed when it gets too much and ride it out alone then suffer the accusatory looks for being lazy from everyone. It hurts less than being a whingy pain to everyone with nothing else to talk about.
Anyway I suppose not much more can be done til my appointment next month

Thanks again for the replies
Love Theresa

theresa4

Hey DD
Thanks for your reply must have typed at same time
Im sort of thinking that way anyway Im just scared my pain levels are already bad I just dont feel so muddy. Ive got til next month so lets see what they offer and my counter offer is by then

Theresa
Ps I hope you are ok DD missed alot of posts recently but did notice you were having a hard time yourself last month xx

dreamdaisy

I am still struggling, one way and another. I swear my flaming knees hurt more since I learned that they are somewhat affected by OA - no wonder I wasn't feeling much benefit from humira etc but I guess that drugs dross is affecting the other joint dross somehow. I dunno, I can't tell any more.

I know that this is my third and final anti TNF and as they ain't never done that much I am not that fussed about them any more. I know that for some they have had their lives returned to them, and that must be lovely, but I don't think about that. Better health and good results have always been for others and I don't intend to buck that trend! I am instead continuing to deprive myself of the only meds that do help, that makes perfect sense to me, and I am working on coming to terms with it all. It's tiring, an emotional as well as physical drain, and I am frustrated as I am sure I could do a helluva lot better than I am. :roll: Never mind, it will pass, all things do.

You do what feels right for you - **** everyone else. They ain't living with it - docs love the theory, we are the poor saps dealing with the reality. Good luck. DD

barbara12

Hi Theresa
Sorry I cant help with your question, but I just want to wish you well with whatever you decide.
Love
Barbara x

tillytop

Hello Theresa

I have recently faced what I think is a similar dilemma in terms of whether or not to try another biologic. Although I haven't had as many as you (have just started my 3rd) I had such a rough time with Humira (my second anti-tnf) that, although I was offered a third one, I was just too frightened to try and I too was trying to weigh up the pros and cons and to convince myself I didn't really need it. It's a hell of a decision isn't it? In the end what I did, with the full support of the rheumatologist, was to spend 6 months back on just meth, propped up by pred, to see how things would be and if I would manage. And, by the end of the 6 months, it was clear that meth wasn't going to cut the mustard, even when taken with not insignificant doses of pred and, suddenly, the idea of another biologic didn't seem so bad. I have just started on Rituximab and am due my second infusion next week.

Although it has been a really hard 6 months for me, and, with hindsight, I probably should have gone onto Rituximab straight away, at least I know exactly what my RA is doing and that I have made the right choice.

I was worried that, by taking a break, I would have lost the chance to go back onto biologics - specially given the cost implications and I know I was lucky that that wasn't the case. I don't know if Rituximab is one of the ones you have tried before Theresa, so apologies if I am telling you something you already know, but apparently Rituximab works in a completely different way to the others. Also I was told at the hospital last week that new NICE guidance for RA states that, if you fail on one anti-tnf, you should now go straight onto Rituximab, rather than having to try the other anti-tnf's first.

Not sure if any of this was helpful Theresa, but I am thinking of you.

Love Tilly xxx

theresa4

Hi Tilly
I cant go on rituximab as its contra indicated for sero neg RA, and the new one they were going to put me on was Toccillizumab but that is contraindicated for people with diverticulosis and although Ive not been diagnosed (nor tested for it) 3 of my family have so they are wary about that now as well as its suggest a possible bowel weakness in my family as the condition itself is not hereditary.

Thanks for your reply it does make me feel a little more positive about discussing a holiday from biologics with my rheumy.

My GP in the meantime has put me on a new pain killer buprenorphine under tongue tablets. Hes hoping they will not make me as sleepy as the dihydrocodeine but be effective in lessening the pain. He pointed out that it wnt takje away the pain just lessen it. Think hes in DD's corner.

And DD thankyou youre right it does have to be my decision I just wish they would treat me like a woman nearing 40 with a brain instaed of a child or a hypochondriac.
"youre RA is looking like the non damaging one only minimal damage" (does that mean my pain should be less and I should be grateful??? because its not)
"maybe you could take up a bit of excercise that might help" (why because Im fat I cant be doing anythng I just sit munching food and Ive never been slim well at least not since arthur moved in anyway!!!!) I was so active before the last thing I want to do is have this lifestyle surely they dont think its a choice! and I dont eat crap as my food intolerances dont allow it.
The newest one "it looks like fibromyagia" no S*** sherlock I have that too but only diagnosed for the past 18 months the reason the joints wasnt too bad is because Id had a steroid a few weeks prior duuuh! read my notes! obviously he knows without bothering to read them. He was so proud of his diagnosis.

Ok so that rant was not something I was considering must be thinking of writing a book

Love to all
Theresa x

madwestie

Theresa, I haven;t got to the Biologics stage yet i am still managing on 25mg Mtx injections and 4 depo's a year, but i had to post as i do sympathise with your rant why do they always tell us we need to excercise more and lose weight as if we choose to sit around all day doing nothing except eating of course.
I got the same thing from my rheumy last time it really annoyed and upset me we use up so much will power just getting through the pain of each day and then someone says well you just need to loose weight and if you excercised more i am so mad i could spit(probably in the eye of the next person who says it i think)

It is a really difficult decision for you to make and i will send you some extra support to help you make the best one for you and remember what ever you decide it was the right decision for you at the time looking back on decision with hindsight is all very well but if we had that we would all be lottery millionaire....you can only use the facts you have to hand now.

Tracey