Confused as to my next move (RA)

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toady
toady Member Posts: 2,279
edited 5. Oct 2015, 11:31 in Living with Arthritis archive
Hi all.

Having recently had a new rheumy, and a few developments, have reached a point where I don't know which way my RA is going so am after any opinions/experiences that chime in with my current situation.

Briefly (I hope) -

I've been doing well on Enbrel & MTX for 3 years, though less so recently/this year, general deterioration. When I last saw my old rheumy at the end of 2014, I had slightly raised ESR + CRP, my joints were warming & swelling here & there, & it looked like a case of 'your meds are wearing off'. I was given a steroid jab to see if I settled, & if I didn't, rheumy was already talking of probable change of meds.

Took forever to get a follow-up appt this year, but in July saw a new bod. Was expecting the same assessment as before, but the problem is, my bloods have settled, so according to new doc, I am not systemically inflammatory.

Have had fairly sudden weight loss, muscle loss, hair loss, skin problems, gut problems, all the things that accompanied my very-inflammatory stage, but with limited actual joint involvement, & good bloods. (Doc says the odd steroid jab I've had wouldn't be enough to keep things damped down if I was really going to 'set off' again badly.)

So.. in a nutshell, doc has handed the choice of do I change anti-TNF over to me, as they feel v reluctant to take me off something that's doing so well for my joints/bloods, to swap for something that may not even work. My joints are bothering me minimally, but the weight loss and gut problems certainly are. :( I am not eating or sleeping well, which is far worse than the odd dodgy joint.

When I was last poorly, I didn't know how much my gut involvement was down to RA, but as things settled once I got my inflammation under control, it seemed a safe bet they were connected? I was prepared for things to flare up again if I did - but not to have severe digestion problems without a severe flare-up. Rheumy/GP want to investigate the weight loss etc as a separate thing, but my feeling is, any other possible cause of gut problems would not have settled completely in the meantime. Ie coeliac, IBD, IBS, are not things that would go away because my RA was better. I can see myself going down the route of gut investigations and it being a blind alley.

Question is, do I jump voluntarily off a passably working med just to see if my gut clears up? It's not a dilemma I expected to have. I expected to face a fait accompli and be told a change was inevitable. :(

Also, I know we have all had experience of the 'bloods aren't the whole story' thing, but is rheumy right to tell me that it's impossible to be very systemically inflammatory but your bloods to be fab?

Any similar experiences gratefully received. Thanks for reading. :)

Comments

  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
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    Hello Toady. I'm sorry to hear about all your nasty symptoms although good to hear the joint pain is not severe. However the other symptoms are equally distressing.

    It is strange that everything else has kicked off but your bloods are good but maybe rheummy needs to investigate them separately. Having the RA under control is important and you do not want to upset the apple cart and go into a full-blown flare by stopping the enbrel.

    However I have cut out the injections for weeks/months at a time to see if I notice any difference (with breathing). I thought I could manage a small break but continue to have them ready in the fridge when needed again.

    I have a similar problem but with my lungs. Should I come of Humira for good when it does such a great job at keeping the inflammation and pain at bay? My rheummy thinks it should be a last resort.

    I hope you start to feel better soon,

    Elizabeth xxx
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Hi Toady, I don't know if I can be of much help but my bloodwork (I have PsA) has been wonderfully normal in the past four or five months even though I have huge painful knobs on my elbows and they are obviously hot, and very painful. I have never really had overly high inflammatory markers even when I've been very obviously inflamed and quite sick.

    I have a mysterious gut problem with weight loss too and have had all the pertinent investigations that said I was normal. Fortunately, the gut issue settled when I was eight months to a year in on MTX treatment. Just have the awful MTX nausea now but at least that is predictable. (((()))) to you for having the decision handed to you by doctor. My rhuem does this with me too and I'm not sure it's so great as I never know what is best at all.

    I think anything like sudden weightloss, even though a person is eating, needs investigating as you have no way of knowing for sure if it's related to your RA or not this time.

    I am sorry to hear you are not feeling well. You have my empathy.xx
  • frogmorton
    frogmorton Member Posts: 29,638
    edited 30. Nov -1, 00:00
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    Dear Toady

    You have already received some excellent advice from the others, but please can I also add a heartfelt plea to take them up on the gut investigations?

    Loosing weight like that can be a worrying symptom :?

    Probably you are right and it is connected to the RA - plenty of gut issues are autoimmune aren't they?

    BUT better safe than sorry

    Love

    Toni xxx
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    Me too.

    Firstly, from all I've read on here, I'd be reluctant to come off a med that's working when we have no certainty that others will work.

    Secondly, the other symptoms need investigating. I hope they amount to nothing and, having endured several digestive tract procedures that showed no problems (twice :roll: ), I understand your reluctance but better safe than sorry.

    At the end of it you still have the option to change RA meds.whereas, if you go for that initially, you could be ignoring something important that has nothing to do with the RA.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    toady I knew you must have been suffering..not being around..what a rotten time you are having..I wish I could give you some advise but it wouldn't be any good..but I really do wish you well, and so many on here have had lower reading on the inflammations ..but still suffering and not being believed...so I hope they will offer some help very soon...x
    Love
    Barbara
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    What a dilemma, I don't envy you. I know there are some on here with auto-immune arthritis plus gut troubles so I think, although it may not be pleasant, it is worth investigating because any sudden weight loss is not good. If the meds are doing OK for the joints then that is a positive but, if this is a different issue, then it might need an additional treatment. Please let us know how you get on. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • toady
    toady Member Posts: 2,279
    edited 30. Nov -1, 00:00
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    Thanks all for the input.

    I understand where you are all coming from with concern over gut issues, however my gut (ha ha) feeling is that, it is a part of my inflammatory 'package' returning - just in an unpredictable order.

    My expectation was that when an RA med would tail off, it would be a matter of joints & bloods would tell me. I have only ever been either bad bloods + bad joints, or both good. However there is no reason why, being me, I'm going to be that predictable.

    My gut problems are v along the lines of what I had before, & as I had hair loss, muscle loss, tiredness, all the same things, at the same time, & certainly some joint problems, then it's not a 'sudden weight loss with no reason' thing. If it were very much in isolation I would certainly treat it as such. From the way I feel, I would expect my bloods to be up & point to inflammation; the fact they are not, is not the end of the story imo.

    I was investigated gut-wise before up to a point but, as with Boomer13's experience, found I cleared up once my meds kicked in, so I think it's highly unlikely it's not an inflammatory thing. (No pain, no funny symptoms, nothing alarming.). For some reason it seems as if my gut is protesting ahead of my joints, but I do feel pretty much like my old flare-y self, tired, 'blah' etc, just with less to show for it.

    Thing is, this new Dr seems to want to take all my symptoms separately, as some do. Hair loss? could be mtx/my age. Warm fluid-y knee? Let's drain & inject that by itself (lasted about a week/10 days, as predicted). Tiredness? Let's look at vitamin D levels & thyroid. You all know the sort of thing.

    Barbara, what you say about folks with good bloods (& having their Dr take too much notice of that) is what I'm trying to judge here. The first thing my previous rheumy said to me is that they see people with good bloods who feel awful, & ones with bad who yet feel ok. I wasn't one of those, I was nice & clearcut, but maybe being 'half' controlled by a drug as it were is bound to be different to my experience when on nothing, in the early days.

    I am trying to get a rheumy appt now anyway & will see what they say in the light of my knee not settling & so on. I know it's a dicey move to switch meds but the crux of this is, I had one very good year on Enbrel, 1 not quite so good/few flares, and now 1 really not good, and that says declining effectiveness pretty loudly to me. Evidently it did to my old rheumy as well, I wish I knew what they had in mind. Of course, worst timing to switch & lose the continuity. :(
  • frogmorton
    frogmorton Member Posts: 29,638
    edited 30. Nov -1, 00:00
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    Toady I am much reassured that you have the 'gut issue' in hand.

    Did your old rheumy retire???

    Did he leave anything in your notes? any clue as to what he was thinking of because I think if you knew that you wouldn't hesitate to change meds.

    Toni xxx
  • toady
    toady Member Posts: 2,279
    edited 30. Nov -1, 00:00
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    Thanks frog. I wouldn't say it's in hands as such but I will be pursuing all angles with rheumy, just hopefully as a job lot & not piecemeal.

    When I last saw my old Dr (moved on), their tone was don't panic at your bloods (20-odd esr & CRP of 2, nothing like what I've been known to have, but up on my consistent low scores since starting anti-TNF.) I didn't feel that well by then but to be honest hadn't really thought much of it as it had been gradual.

    It was a 'don't panic there are other things we can try' rather than don't panic I'm sure you'll settle on your own. They hoped a steroid jab would kick me back on track but I suspect they thought it unlikely & were thinking toward MAB type therapy (I think), I'm not sure why not further anti-TNF, but I had no idea they were leaving so expected to pick up next time on that.

    New Dr went into various angles, in saying that us sero-negatives are 'difficult' :roll: and that certain infusion treatments are known not to work for sero-negs, all news to me. Old Dr was also considering upping the mtx a squeak further but in fact new Dr has let me cut it down, as I was feeling the effects more, possibly through being underweight. So it's been a total change of approach - there must be something in my notes as you say, but it was probably dependent on my bloods continuing to creep up. As they've gone down again (lingering steroid influence?) it's scotched that. I'm was more or less hoping they would go up, to back me up!

    To be honest 5 years ish is all they are expecting of the Enbrel anyway, and whatever I do, staying as I am is not an option as I'm not functioning so it's a bit of a Hobson's choice. I'd got my head around probably having to change meds, & expected Dr to be all for it, so the whole thing has thrown me really.
  • applerose
    applerose Member Posts: 3,621
    edited 30. Nov -1, 00:00
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    Sorry you're having problems Toady. I can't be much help but the others have given good advice. My bloods have been normal for a couple of years now but bumps and swelling, stiffness and fatigue have been getting worse. Hope you get some answers soon.
    Christine
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Toady, I can so relate to the whole body not feeling well, compared to a couple of joints being painful. It's horrible!

    Take care of yourself.
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    I think you know what you want to do, toady, and I hope it works for you but I do think it's reasonable and sensible for the doc to take your symptoms separately at first. The alternative can be the equivalent of taking a sledgehammer to crack or nut. Worse – it might delay necessary treatment if the real problem is a gut matter.

    To me it makes sense that, if you have gut problems you will lose weight but why do they keep you awake at night? I assume you've tried Gaviscon and a sensible GORD diet.

    One other point - the one time I recall good tests / awful knees was when the OA had set in. Prior to that I didn't know I had OA. I thought all the pain was RA.

    I hope I'm not complicating matters. I'm just concerned about the gut issues. I think it's all too easy for us to blame arthritis for everything. I'll shut up now :lol:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dachshund
    dachshund Member Posts: 9,023
    edited 30. Nov -1, 00:00
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    Hello Toady
    i'm sorry you have so many problems would it be possible to talk to your rheumy and ask him to explain it all in English so as you now you are doing the right thing.
    sorry I have not got ra but it can be worrying when you don't know what to do. good luck
    joan xx
    take care
    joan xx
  • toady
    toady Member Posts: 2,279
    edited 30. Nov -1, 00:00
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    Thank you sticky, thank you dachshund.

    Whether I 'know what I want to do' is a moot point sticky (changing mind several times a day as we speak) :lol: but as my wrist has joined in the fray now I sense others will follow, I feel generally grotty, and bloods notwithstanding, I think it's pretty much a done deal that inflammation is behind my things. Now it's a question of getting an appointment (when I was under control I could get routine appts like clockwork :roll: staff problems now mean I'm having to fight them for every single one). I don't have knee pain, just the old familiar swelling & heat, so I doubt OA is a factor. Gut-wise, Gaviscon et al don't do a lot for me, & my diet is holier than thou at the minute; it's just not an acid thing (no heartburn etc) I just think my 'innards' react to whatever is going on & cease bothering to digest anything properly. The night episodes are basically bloating/gas &c (excuse tmi) but again I don't have 'indigestion' or IBS classic symptoms. As I said, it's all very along the lines of what I've had before, & I did all kinds of dietary jiggery-pokery then & it came down to fix the inflammation/gut fixed itself.

    The more hindsight I apply, the more I'm sure that Enbrel's optimum effectiveness wore off pretty early & it's been slowly downhill since - despite assurances that that's not what was happening. Lesson one, trust your own judgment.

    Joan; to be fair the rheumy was very good & thorough considering they were new and had to catch up on all my past history. They explained things well, but we just disagree on how important the blood results are to the whole picture. By the time I go back I feel my joints will probably speak for themselves. Thanks for your good wishes. :)
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Hi toady;

    The changing of mind twenty times a day does go along with it all, doesn't it? For what it's worth, I always have the feeling that inflammatory problems are at work in me long before my joints act up. Just literally a gut feeling.

    Feel better soon
  • toady
    toady Member Posts: 2,279
    edited 30. Nov -1, 00:00
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    Thank you for that, (and for that matter thanks for even giving a monkey's about me frankly :wink: , as I have been so absent & neither use nor ornament to anyone else. part of that is down to feeling unwell, but to be honest part of it is that when I get to a certain point I feel I have to go off & do some very non-arthritis-y things, just to balance up, as I know you will understand.)

    Anyway my quick update is: the powers that be kindly helped shoehorn me into a very short notice appt, and given my now warm & slightly chunky wrist, & slightly warm elbows, enough weight to my 'I'm failing on Enbrel' feeling meant that this time rheumy cut much more quickly to the idea of switching meds & bypassing the let's investigate everything else first approach. Bloods notwithstanding. So after a clinic appt in a few wks I'll probably be switching anti-tnf. How well that will work is a total unknown ofc but my feeling is that, 5 years is about the mean for Enbrel they tell me, so it's not a matter of ditching a med that could continue working indefinitely - sooner or later I would be off it anyway, as I've had getting on for 4 years, so que sera.

    Many thanks again for listening (& I will be cutting over to your own thread Boomer with a couple of points to add).

    xxxx
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    I hope the new one works well for you, toady. Good luck.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • toady
    toady Member Posts: 2,279
    edited 30. Nov -1, 00:00
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    A belated thanks stickywicket :) and a postscript, my bloods have finally started to catch up with the rest of me (as found out at my appt yesterday) and even though I was already pencilled in for a meds switch on the basis of increasingly toasty joints & all the rest, that put the final seal on things.

    So I am 'happy' that a) my symptoms have come out & declared themselves, removing some of the doubt over what is what, and b) as I was indeed inflammatory even though Dr had doubts, therefore I Was Right :mrgreen: (always a bonus :wink: ).

    So it's humira for me as of as soon as HAH sort it, and have been interested to read over on Boomer13's thread that people find it takes a while to work, so I won't panic too soon if I don't get the overnight results I had with Enbrel.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I am pleased that you are able to switch so quickly and I hope the humira does what it says on the tin, so to speak. Mine does something (together with the methotrexate) and that something is lovely blood tests - hurrah! Good luck, I hope it helps and sooner rather than later. DD

    PS A tip from an old hand: remove the pen from the fridge around twenty minutes or so before injecting: warmer jolllop is more pleasant to inject than stone cold. I use the word 'pleasant' in its loosest connotation.
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 29,638
    edited 30. Nov -1, 00:00
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    Hello Toady

    I am relieved (oddly ;) ) that your bloods and the warming joints have proven that your concerns were correct ( :) of course you were right - it's your body!).

    Lets home HAH crack on with your delivery and you can start ASAP.

    A plan at last!

    Take care

    Toni xxx
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
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    I have had great success with Humira after a bit of a mess with Enbrel. It was explained to me that the reason it took a while for me to get the full benefit was because my body was a bit confused having started enbrel and then stopped it. It meant my body had to adjust to it all so at first I didn't feel it was getting me through the two weeks between jabs. That did sort itself out and I honestly don't think I could be better now. I'm not saying it's all roses but it's good enough. I hope you get a fast delivery and swift results (((())))
    Hey little fighter, things will get brighter
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    That sounds much better. I do hope it works for you. Please keep us updated, toady.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
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    Hi, my next rheumy appointment is next month, and I'm probably going to be travelling in the opposite direction to you, toady : from Humira to enbrel. I've been on humira for seven years, and once I'd started it, it worked very quickly for me.


    It's interesting what you say about feeling unwell before your joints 'kick off,' as I'd never really taken that into consideration. I've not been feeling great for a while, though I have had two specific infections in quick succession, pulling me down. At the moment it's the sheer fatigue getting me down, so it's probably fair to assume humira has run its course, even though my joints are not too bad right now, though I do keep flaring in various places.

    I hope the switch works for you - for six of my seven years on humira I took it on its own - MTX very problematic for me - until hydroxychloroquine was added.
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Hi toady;

    I'm so glad you get to start Humina soon. I hope it kicks in equally fast. Let us know how you make out with it.

    Anna