Abatacept concerns

[wishbone]

Some folk here may be familiar with my condition after reading my recent "Desperation boulavard" post, for those who aren't, here's a brief rundown....

I stopped taking all my RA immune suppressing meds back last March. The reason being that I get recurring UTIs, one of which led to me getting septic arthritis in my hip, aka - sepsis at that time...not a very pleasent experience!! I was on enbrel and MTX at the time and my orthopedic consultant said he thought enbrel played a significant part in allowing a UTI bug to get into my bloodstream and causing the sepsis, so advised me not to take it again. Not much said about MTX but I decided to stop taking that as well to cut down on the real risk of me getting sepsis again.

Anyway, as my RA has become seriously painful and debilitating - I can barely walk and am nigh on housebound, I decided that I need to go back on an immune suppressor of some kind, if only to give me at least some relief from this awful disease. My rheumatologist) was very concerned when she saw the state of me as I have deteriorated quite a bit since she last saw me 4 months ago. She suggested that I go on a low dose, 10mg, of MTX and also wants me to start injecting abatacept as my RA is so severe that she doesn't think MTX will help much on its own. I'm already on hydroxy by the way, which seems to be doing next to nothing for me. Obviously I am very reluctant to go on another biologic drug after the enbrel/sepsis episode, but my rheumatologist said they are finding that abatacept has less of a negative affect with infections than other RA meds, which swayed me towards giving it a go, so I agreed to start taking it. However, I'm now having second thoughts. I was asked to phone the rheumy secretary tomorrow to see if my chest x-ray and blood tests are ok so I can start the meds, but had a phone call this morning to make an appointment with the rheumy nurses for next tuesday - seems like they want to get the ball rolling quickly on the abatacept front, presumably showing me how to inject etc. I did tell them that I'm having second thoughts and did not want to waste their time getting things going as I may well decide not to go ahead with it, but they still want to see me in any case if only to talk about my concerns.

So, decision time is fast approaching - to inject, or not to inject, that is the question? If I decide not to start abatacept because of the sepsis risk - antibiotic bug resistance also enters the equation, which at the minute I don't think I will be, even though it could mean a significant improvement with my RA and quality of life, which at the mo is pretty grim. Or just stick with mtx and maybe ask rheumy what they think about increasing the dose from 10 to say 20mg and take it from there. Of course MTX can take some time to start working, so that will mean a fair old wait and a lot more pain, to see how well it works for me, but I'm willing to put up with that.

I would appreciate any thoughts as to what other folk would do in my situation? Even better, is there anyone on abatacept who also suffers with recurring infections?

[Beaches2]

Hi

I'm sorry to hear you have had such a worrying time on the meds. Obviously everyone is different and so I can only tell you how I have been on abatacept. I've been on it for 10 months now, I am doing very well, and have had no side effects and no infections on it despite being around people with all sorts of bugs. Perhaps I have just been fortunate so far? Who knows.

I do know that I too had a wobble before starting on abatacept......I made the mistake of googling all the things that can go wrong! But, I couldn't carry on as I was so I went for it and am very pleased that I did.

Good luck with whatever you decide to do, hope you get some relief soon.

[popsmith1874 in reply to Beaches2]

Hi there I'm at the end of my tether with this disease, I'm on 20 mugs mtx 200 mgs of hydroxy and 500mgs of sulfa I've had this disease since 2014 and now I can't walk without a stick, I've been active all my life and wouldn't wish this disease on my worst enemy. I was at the reumy last month and I tell you now you would get treated better at the vets, I could not believe her when she said to me that I was getting better , I said to her well why is my Corp at 270 then and she couldn't give me a proper reply, I've had to phone my reumy nurse who is great and ask for a steroid inj to tide me over as I'm going to the canaries for a week and need a bit of sun , when I come back if I don't get any progress I'm asking for a second opinion, the primary diagnosis they gave me was seronegative Rd plus I've got oestoarthritis but my back hip ,both knees , ankles and feet are killing me , sorry for ranting on but fellow sufferers on this site are the only ones who understand what we are going through

[Beaches2 in reply to popsmith1874]

Yes it is a truly horrible condition to have to deal with. I was also diagnosed 2 years ago now. I lurched from one steroid inj to another until I started on abatacept and really hope I never go back to being that bad again.

I understand what a concern it is for you but it is true that if you can find something that you can tolerate that works for you, you can get back to a near normal life.

Hope you manage to enjoy your holiday in the sun and to make the right decision for you.

[JuneRose in reply to popsmith1874]

I know how you feel it took 2/3 years of all for rent RA meds I had Allergic reaction to all of the first line treatments until Arava which worked not 100% I could never get pass 10 and 20 every other day and my CRP abd ESR were up and down every month so in the end I was offered Enbrel bologic which has helped a lot. I gave fibro as well so that adds into the mixture. I'm on my third consultant now the first one was private and no good really and the first NHS one was fantastic but retired after a year my present one is really good and listens and does everything possible to make life bearable.

There are 2 really nice RA groups on face book every one is lovely and very positive which is really good,

Message me and I will give you more info on the groups. I really hope you get the help you deserve very soon.

[Matilda7]

I don't think I can give much helpful advice but I do feel for you. The side effects of all these drugs can be so devastating.

It's a question of weighing up the pros and cons and hopefully the nurses will be able to help you with that? I wouldn't worry about wasting their time, they are being paid to help you! And it certainly sounds as if you need help with this decision, which is a very difficult one.

Do you keep an eye on your white cell count? That would be one way to tell if you are at risk of an infection if it drops very low. The more MTX you take the more likely it also is to suppress your immune system. You could always stop the abatacept if your white cells drop too low, and hope that it has helped meanwhile.......

[Hidden in reply to Matilda7]

Hi Matilda

I think you hit the nail on the head mentioning the monitoring for signs of infection like wbc counts etc.... i gather that the routine bloodwork is done monthly but in a high risk case like our friend, probably every two weeks would be advisable.

cheers, Doreen

[wishbone in reply to Hidden]

That's interesting Doreen, I could be in for a uphill battle trying to have my bloods monitored twice per month though, at least with my GP, although I would think the decision here is in rheumies hands not my GP's. After I had sepsis I asked my GP if I could have regular urine tests as I can have a UTI without any obvious symptoms, think I requested once a month. My GP's response was a bemused look followed by a definite no no. She wasn't even willing for me to have a regular simple dip-test let alone send it to the lab, which is now routine practice for me, and they were very late getting round to doing that in my opinion for reasons best known to themselves. I don't think my after care by my GP, especially since having sepsis, has been up to much at all. As mentioned in one of my posts - yesterday's blood test was my first for I'd say, at least 6 months.

O bviously I will be having regular blood tests from now on as I'm back on MTX, which I believe include a WBC count. As I recall this should be every two weeks for the first couple of months, then one per month, but I will ask rheumy about keeping them going on a fortnightly basis. Will also ask them about regular urine tests, which I don't think are unreasonable requests given my condition, especially now I've started immune suppressing meds again.

edit...regarding blood tests - my wife just reminded me that I had one when I started taking hydroxy 4 months ago. I also had one around the same time when I went to out of hours about a stubborn skin infection on my back. Different thing to regular monitoring that you are talking about, but just thought I'd mention it. My regular blood monitoring ceased when I stopped taking MTX at the time I had sepsis.

[wishbone in reply to Hidden]

Doreen, and anyone else who reads this.....

To elaborate a little on my above post...do you think it would be unreasonable of me to ask for regular fortnightly blood tests, and regular urine tests - perhaps monthly, as a proviso to starting abatacept? Think I may well feel more comfortable about taking abatacept if they agree to this degree of monitoring.

Oh, and do you know if an infection would show up in my WBC before I get any UTI symptoms, which as I've previously mentioned are not always obvious.

[Hidden in reply to wishbone]

Everything you are saying is logical. With the emphasis on 'self management' we have to have input into the plan for care and to prevent major complications of these extremely toxic drugs that we are using to combat the autoimmune disorders. Good work Wishbone- keep it up.

I believe that the simple dipstick urine test and monitoring yourself very carefully for the early signs of UTI are the most important. The blood tests (including the complete blood count) gives another level of monitoring to detect complications from the medications.

I think all of these are necessary in your case.

Hoping that you can get someone on board with you in your case management.... You get an A+ for the self management contribution!

All the best. Doreen

[wishbone in reply to Hidden]

Thanks for the A+ rating Doreen, not bad for someone who's had his head firmly stuck in the sand regarding his diseases until joining this forum a year or so ago...not the best way to deal with my health issues that's for sure. So thanks to all the good folk on this forum for their help, understanding and knowledge that I've received since joining.

Will go ahead with the close monitoring request. Maybe I'm getting a bit paranoid, but I would prefer to push for a monthly lab test for my urine as I think it is important for me to have the type of bug ID'd so the appropriate antibiotic best suited to kill it can be administered ASAP. The type of e.coli bug most commonly found in my UTIs has become resistant to two types of antibiotic that used to kill it... trimethoprim was one, can't remember the other. That said, I probably would settle for just having dip-test if I had to. Are you saying that it might be possible for me to self dip-test? Can't see why not - would save NHS costs as

well.

[farm123]

Like any drug each of us responds differently. I had 7 years on Enbrel and found that any cold soon affected the sinuses but I never had any serious infections. After numerous other drugs over a 2.5 year period which never worked I started Abatacept which took a long time to work and an interruption last March for a TKR it does appear to be helping now. I have not had an infection and during a cold last month I did not encounter any infection issues. Having said that my WBC and neutrophil count have been running very low although this week my GP rang this morning as he was shocked at the level and thought I must have stopped or missed a dose as they were above normal range for the first time in probably 6 months. It used to wipe me out the following afternoon after injection for the first few months but that has improved now. Abatacept together with 200mg hydroxy and a left TKR has been life changing for me. This biological acts on different cells to Enbrel which might make a difference regarding infections. Farm

[wishbone]

Thanks for the replies.

If I wasn't for these recurring UTIs caused by a chronic bladder condition then I would start abatacept in a heart beat, and probably would not suffered with the complications that enbrel appears to have caused.

I was very reluctant to start taking enbrel and pondered about it for weeks. My gut feeling was not to start taking it, just wish I'd stuck to it. I haven't had a UTI for 4 months since I've stopped all my meds, would probably have had two during that time when I was taking them...think that says something. I was going to ask rheumy about starting on just 5mg of MTX and maybe doubling up on my hydroxy to 400mg, but that idea went out the window as soon as she saw me. She said that we would have to work together and it would be like walking through a minefield...it's a matter of trying different meds and see what happens!....talk about being between a rock and a hard place!!...I really don't know what to do for the best. Apparently I'm a rare and difficult case to treat.

Yesterday was my first blood test for ages, which I presume is ok if the abatacept nurses want to get things going - guess that's something to be thankful for.

Sorry for the negativity, but between it all!...........

edit...my wife just come in with my MTX from the local pharmacy, will start taking it tomorrow, thursday being the day that I used to take it on Another thing that really gets to me is my dear wife having to do so much to help me, including struggling doing jobs around the house that I should be doing. Can't be helped I know, but it's so frustrating. She is an absolute angel and I haven't heard so much as a tut coming from her. Like to think I would be the same if the rolls were reversed..can't be 100% sure on that one though.

[farm123 in reply to wishbone]

It is very hard and frustrating to have to accept help from your partner and/or children. Like you I am not sure that I would be the same if roles were reversed but I suppose once you were in that position there would be no question of not doing it. Farm

[lornaisobel]

I am on abatacept and have been for about a year and also metex 25mg and I don't have infections - no colds this winter ( fingers crossed) They told me that different biologics work on different parts of immune system so what they say about abatacept sounds right. I was on Humeria before and got infections but for a short time I felt wonderful and then it just seemed to stop working ??? All these drugs do tend to work differently on different people ??????????? Like you I question everything they tell me to take and if I don't like the sounds of the side effects I wont take them - I go on line and look at tons of information on drugs and side effects and if Im still worried I phone the RA helpline - they are soooo kind supportive and know lots about drugs and they have time to talk to you.

I know people who have taken Humeria for years and think its wonderful and I know others who wont touch it.

Your nurses / consultants sound as though they care about you and want to sort you out asap - I suppose its all about balance quality of life and risks involved. Get as much information and then make a decision - Good luck xx

I feel quite good on abatacept not excellent but just ok xx

ps I haven't seen my consultant for over a year - he rolls his eyes when he sees me !!

I only see the nurse who is wonderful and supports me when I refuse to take drugs 'he ' has recommended.

Take care XX

[nomoreheels]

I've no words of wisdom for you Wishy, just bucket loads of sympathy for where you are & the difficult decision you've to come to.

Everything's crossed as far as MTX goes, hopefully once it kicks in you'll be given some relief, let's face it anything's better than b^gger all! If it just gets you moving a little easier that will be some sort of improvement, however little.

Your wife must indeed be an angel, it's difficult not only seeing your loved one in such a horrible place but to carry the load without so much as a moan, it's not easy. I know it probably seems a world away but once you're back on the right track you'll have to work out something special for the two of you, maybe a little break somewhere where she can be spoiled for a bit. x (that's for your wife!)

[wishbone]

Thanks for the advice and kind words everyone, much appreciated.

Wish I could reply to you all individually but I'm a one finger typist and would be up most of the night if I did. Don't think my index finger would take the strain of it all either.

All our four children have left the nest - the last one departing just a couple of weeks ago, so at least they don't have to see how I am, at least on a day to day basis. That said, I know it must still be awful for them to see me in this state when they visit, along with my wife who has to deal with my bad days, which is almost every day now. Perhaps I should take more account of this when deciding whether to go on abatacept. My son just popped in to see us. He works in the pharmacy of our local hospital, which is where I attend all my rheumy appointments. When I told him about going on abatacept, he said that they have a lot to do with the drug and will try to glean some more info on it. Not sure there's much more to add to what my rheumatologist has said plus what I've heard here, but we shall see. Regarding my rheumatologist and the nurses. I couldn't agree more with what lornaisobel says in her post that they sound like they care for me. Think I'm fortunate to have such a good team looking after me.

After what's been said here plus taking a couple of other things into account, I think I've swayed a little towards starting abatacept, but will wait and see what the nurses have to say on tuesday before coming to a decision. Enbrel worked wonders for me 'til things went skeewiff. I'll be surprised if abatacept will be that good if I go on it, but I'll be grateful if it gives me some relief. As heelsy says, if it just gets me moving a little easier then that will be something.

Thanks again all

[jayne17]

I have been on Abatacept for approx 2 years with no recurring infections, it seems safer than MTX to me. I have been on other biologics and there was only one that caused me to have recurring infection and that was Toxilumab, so I had to come off it. The other biologics I have tried just stopped being effective for me, but Abatacept has lasted longer than most.

[wishbone in reply to jayne17]

That's positive news, thanks Jayne.

Some way off I know, but if I decide to go on abatacept and it appears to work for me, then I will ask rheumy about dropping MTX and see how I get with just abatacept.