Benepali

Maturecheese
Maturecheese Member Posts: 130
edited 5. Jan 2020, 10:38 in Living with arthritis
Hi all, I started my Benepali 50mg 10 weeks ago and it's done some good BUT I am still getting fatigue. Should I be getting this if my inflammation levels are low, which they must be by now as my levels were down to 25 before I started it Could the methatrexate and sulphasalazine with Benepali be causing it?

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I have always had fatigue with whatever combo of meds made up the regimen. It's the disease, can also be a side-effect of the meds as can increased joint pain. Life is just a bowl of rancid cherries. DD
  • stickywicket
    stickywicket Member Posts: 26,708
    edited 30. Nov -1, 00:00
    It's true. The disease causes fatigue but the meds can too. I sometimes have a 'post-meth' day.

    However, don't assume your disease is now in check. What do yor bloods show? If you don't know it's worth an ask.
  • Maturecheese
    Maturecheese Member Posts: 130
    edited 30. Nov -1, 00:00
    Thanks both for the replies. I thought as much re the fatigue and the disease and as for my bloods, i might get to see a consultant to ask in 3 or 4 months if I'm lucky. Apparently they are now running 3 months behind and as for bloods you would think they would take my inflammation levels at the same time but no they don't. But enough whinging, at least the Benapali is doing some good at the moment.
  • stickywicket
    stickywicket Member Posts: 26,708
    edited 30. Nov -1, 00:00
    Do you get a report on your bloods, MC? There seems to be different ways of doing it but, both here in Scotland, and previously when I lived in England, my bloods have been done at my GP's surgery and the results filled in for me in a booklet which I keep. Oddly, my inflammation levels are not recorded though maybe they are routinely done as at last week's appointment, my rheumatologist said my levels were high and had been for 12 months.

    I wonder if your GP could either access yours or do the test anyway.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I have two blood forms testing for different things: it could be a medmin (medical administration) oversight that your ESR levels etc have been omitted. Never presume or assume that NHS clerks/nurses/docs accurately complete paperwork.

    I used to have a booklet for the meth but once I started the DIY version that went out the window. If my GP writes to me three weeks after a test regarding a result that does not match their expectations I don't rush to do a repeat but if rheumatology do then I do because they ring rather than write. DD
  • Maturecheese
    Maturecheese Member Posts: 130
    edited 30. Nov -1, 00:00
    I used to have a booklet that they filled in with the last blood results but they told me they no longer do that. In other words they think I should just leave then to it and not bother knowing how my bloods are going, this is Wales mind you.

    I believe I questioned the consultant months ago as to why they don't take CRP tests when they do routine bloods and I got some half hearted answer I can't remember. It's no good asking the blood nurse as she hasn't the authority to do it.

    Incidentally, changing the subject a little, when I injected my Benepali today it actually hurt so I'm not sure if I was a little low down the thigh and stuck it into muscle. I use the pen type auto thingy whereby you put downward pressure on it and wait for the two clicks. It is the eleventh time I have done it now and the first time it's hurt. I'll be a bit wary next week.
  • stickywicket
    stickywicket Member Posts: 26,708
    edited 30. Nov -1, 00:00
    I think the 'blood test booklets' are maybe falling out of use. When I got my first one I think hospitals and GP surgeries weren't in computer access to each other. I always do check mine but whenever there's been a problem, my surgery has been onto it before I've taken my booklet in for updating.

    As for CRP. I wonder if they're not routinely done, or sent to the GP anyway, because the GP has no authority to change anything. I was surprised when recently told mine had been high for 12 months.

    As for the hurty jab, I don't inject but I know others have said they can sometimes sting a little. I don't know if tere's a reason for it ie bits to avoid. I believe the stomach has fewer nerve endings, if it's nerves. If it's a muscle I guess it'd help to check that all muscles are relaxed.
  • Maturecheese
    Maturecheese Member Posts: 130
    edited 30. Nov -1, 00:00
    I phoned the GP's and got them to write me out a blood test for crp which I'll pick up on Monday and take to the hospital to be done. I should get the results by the end of next week so at least I'll know if that's why Im still fatigued.
  • Maturecheese
    Maturecheese Member Posts: 130
    edited 30. Nov -1, 00:00
    Turns out my CRP is 5 which is ok so I guess my tiredness must be due to other things, sleep patterns and meds perhaps. What this does mean is that the Benepali is working which is good but also means I might just catch the bug (looks like flu) my wife has kindly brought home from work :). I have had the flu jab so lets hope it's the right strain.

    Oh I meant to add that I have developed what looks like psoriasis on my elbow so the consultant may have to change his diagnosis back to his original thoughts on my next visit. It could be psoriatic arthritis now instead of seronegative RA.
  • stickywicket
    stickywicket Member Posts: 26,708
    edited 30. Nov -1, 00:00
    I guess it's good that the benepali is working even if it doesn't feel like it is.

    There are a lot of bugs aróund right now and Christmas is a tme when everyone exchanges them. I hope you escape. (And me.)

    Frankly, even if the diagnosis changes, I doubt anything else will.
  • Maturecheese
    Maturecheese Member Posts: 130
    edited 30. Nov -1, 00:00
    A pleasure being able to talk to people that understand. Merry Christmas to you all.
  • stickywicket
    stickywicket Member Posts: 26,708
    edited 30. Nov -1, 00:00
    And to you, too, MC

    Now, what will be your mature cheese of choice this Christmas? I've ordered my stilton but, If I could bring Scotland to Dorset, it would be Blue Vinny. Wonderful!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    My label was changed from a vague fluff of words to PsA but nothing else did. PsA inflames the entheses, it's in all my fingers and toes and both elbows: that is where it should have started but didn't. :roll:

    I think tiredness is part-and-parcel of the condition and has nothing to do with sleep patterns or quality of sleep. I've been tired since 1997 and, co-incidentally, been in pain since then (which the meds in themselves have never reduced) so I reckon that's why. My damaged body is working harder to achieve less and I can now throw ageing into the mix too. The auto-immune types are very different in what they do to the whole body compared to OA which remains localised in its effects. Of the two (aren't I lucky to have the choice?) I prefer the OA because it can be managed more easily. I knowwhen it will worsen, I know that resting will ease matters somewhat, I know if I eat too many pickles it will aggravate it, it's easy. The other is far more sly, calculating and unpredictable.

    Our Christmas cheese includes a cheddar so strong it has salt crystals within, some of my favourite squeaky cheeses (Jarlsberg, Emmental), Stilton and the essential Dairy Lea (for The Spouse).

    Steer clear of Mrs MC until she's better :wink:

    Season's Greetings to you both. DD

    t79122
  • Maturecheese
    Maturecheese Member Posts: 130
    edited 30. Nov -1, 00:00
    Sorry if it seems like i've ignored replies but I haven't been on this site til today. I hope everybody had a nice Christmas and are feeling well.

    The rash on my elbow has gone now so it more than likely wasn't psoriasis, phew! I'm just waiting for an appointment now to see if I can ditch the sulfasalazine now that i've been on Etanercept (Benepali) for 12 weeks and it appears to be working. I'm hoping they'll cut the methotrexate down as well.

    Oak smoked cheese for me :)

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