I don't know what to do now? Tarsal Tunnel anyone?

Mat48
Mat48 Member Posts: 1,161
edited 30. May 2014, 13:32 in Living with Arthritis archive
Hi - I'm back on MTX injections and just agreed, after 7 weeks, to go up from 10mg to 12.5mg. I feel lousy - have done since restarting the Meth. The same symptoms that had me quit after 18 months are back with a vengeance - ie a terrible sour taste in my mouth continually that has me eating everything and anything in sight to try and get relief from it.

And the nausea is unreal and has so far lasted two days after injecting. I'm only prescribed 1x5mg Folic three days after MTX. Should I just take more or ask about this? My GPs don't seem to know much about the folic acid intake and just think one a week should be sufficient. Last time I was on MTX I didn't find the FA made much difference to me but I'm sufficiently desperate to try taking more.

My ESR was back up at 62 a few weeks ago so I agreed with my GP to go up a dose of the Methotrexate because if I'm going to suffer side effects then it might as well be for a purpose and he felt that 10mg was too low a dose for my RA. I don't still have any pain or swelling in my hands and wrists and my rheumy told me that I wouldn't qualify for anti-tnfs until I did because this was how he diagnosed me two and a half years ago.

I do have Raynaud's and Sjogrens too but my main problem just now is this weird pain in my ankles and knees. It is not excruciating but just dull and relentless and is in side and back of my left knee and also in my ankles on the inside and up the shins. My podiatrist told me that he thought it might be tarsal tunnel as a result of the RA. He said he thought it was in my nerves rather than my joints and it doesn't feel like RA pain but something unpleasant is going on in the corner at the back of my left knee and my whole leg feels stiff.

I'm also suffering from dizzy spells and heart palpatations when lying down resting which is a bit bizarre. My GP gave me Stemotil to try for a week and I've taken it since Tuesday but I can't say it's making any difference. I have absolutely no energy and I'm starting to panic as I have a lot of travel on my own coming up in less than two week's time.

Does anyone else have this Tarsal Tunnel or have any suggestions re new DMARDs for me? I've tried Sulfasalazine and Hydroxichloraquine and had dramatic skin reactions to both. I had a couple of skin biopsies a few weeks ago and the results have come back equivocal - deposits of ImG but nothing else. I think this means that it's Rosacea that I have but not sure until the dermatologist responds.
If you get lemons, make lemonade

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    You need to speak to your rheumatology department about increasing the FA, they are the ones to advise you. I don't know anything about tarsal tunnel so try the search function on here to see if any one else has been affected by it. As for the anti-TNFs the rule in my neck of the woods is you must have failed on at least three DMARDs before one is given a shot at them - they are very expensive. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • toady
    toady Member Posts: 981
    edited 30. Nov -1, 00:00
    Hi Mat. Really sorry to hear your old troubles with mtx are persisting this time round. :( I can see your thinking in that you may as well be on the higher dose to at least get some benefit for your trouble; it did take me a dog's age to crawl up the stages from 7.5mg to 15, because I put settling at each level at a higher priority than whether it was actually helping, but I accept that also meant a degree of fiddling while Rome was burning. From the sounds of things you & this drug don't really get on and staying at a set dose until you settle may not be that simple.

    Re folic acid, I've been on one every day except mtx day from the off. I can't see the harm in asking for a higher dose, on the grounds extra folic acid is not a huge risk in the scheme of the other things we take. You would have to get a prescription as it's not available over the counter at any sort of a decent dose. Certainly I'd try it.

    Re the not offering you anti-tnfs.. my understanding of moving to those is if/when you have failed 2 dmards, the definition of failing being a) not working but equally b) can't tolerate them. I don't quite understand why your rheumy wants you to have swelling before you qualify.. by saying 10mg is not a high enough dose to control the RA, he is saying it needs getting on top of as it stands now, so that in itself says it is active enough (given your bloods) to need addressing. By whatever appropriate means you would think.

    Sorry I don't have any experience of your other involvements, although I do find that if I am going to get a higher heart rate or missed beats, it is invariably when I am lying down, so that doesn't seem too bizarre, in fact I've always assumed it's a common-ish thing (a quick search brought up this, to be taken with the usual disclaimers; "Palpitations, pounding heartbeat and increased cardiac awareness is quite common when you lie down and, in particular, on your left side. This is due to a positional shift in blood flow between different parts of your body and, in particular, the heart, which makes it start doing this.") I suppose it depends on the severity. I am certainly more aware of it if flaring as I get an increased heart rate anyway.

    Hope you find the dizziness does ease & you can tackle your travelling, all the best in general & sorry you are having a rough time. :( x
  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    Mat48 wrote:
    I'm starting to panic as I have a lot of travel on my own coming up in less than two week's time.

    Stress - the nectar and ambrosia of arthritic joints :roll: I can't help on the meds front, Mat. You've been here before and probably know the choices better than most of us. But I'm sure anything you can cut out of your life to reduce the stress will aid the RA as much as any meds. Maybe try thinking the unthinkable in terms of what changes you can make.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Thanks DD, Toady and SW. I don't think my doctors will mind me taking more FA - it's just that then it flags up at the pharmacy as I'm getting through too much so I have to go and explain and they don't get why taking more would help. I will email the physio who will hopefully ask my rheumy for me and let me know as it's easier if he instructs it.

    Re the anti-tnfs - I agree with you Toady but because they are so expensive I won't meet the criteria unless I have proven synovial swelling and feet aren't included in the DAS they use to measure my disease activity score. I don't show swelling apart from in my knuckles and fingers and presently these are fine and have been for quite a while - apart from some ulnar drift that only I and the podiatrist seem to notice!

    I saw a rheumy professor for a second opinion and he said that inflammatory markers (ESR and CRP) are fact of autoimmunity not of active RA and that the MTX and other DMARDs are for the RA/ arthropathy not for my secondary Raynauds and Sjogrens. He did say that Azothioprine might be worth trying but was concerned it wouldn't be enough for the RA. I've got a batch of Metojects to use up and am travelling to Paris for the EULAR congress where I'm speaking about telemedicine in less than a few weeks. I will be in the right place for any flare ups I guess but I am presently just worried about fatigue and feeling this ill.

    After this I have my son's graduation in a month's time and other training plus the culmination of a big art commission that has gone horribly off course to complete over the summer. So I can't easily cut down on work/ volunteering at this stage DD - it just ain't possible. I'm terribly lazy around the home though as husband will confirm :roll: - all I seem to do is sleep and eat mints in effort to get rid of the vile taste that MTX brings.
    Mat xx
    If you get lemons, make lemonade
  • toady
    toady Member Posts: 981
    edited 30. Nov -1, 00:00
    Mat48 wrote:
    Re the anti-tnfs - I agree with you Toady but because they are so expensive I won't meet the criteria unless I have proven synovial swelling and feet aren't included in the DAS they use to measure my disease activity score. I don't show swelling apart from in my knuckles and fingers and presently these are fine and have been for quite a while - apart from some ulnar drift that only I and the podiatrist seem to notice!

    I saw a rheumy professor for a second opinion and he said that inflammatory markers (ESR and CRP) are fact of autoimmunity not of active RA and that the MTX and other DMARDs are for the RA/ arthropathy not for my secondary Raynauds and Sjogrens. He did say that Azothioprine might be worth trying but was concerned it wouldn't be enough for the RA.

    Hmm well that's all a little weaselly isn't it, 'your markers are not in themselves solely indicative of active RA but we are treating you with dmards for.. active RA'. But I see what you are saying viz DAS scores etc.

    As far as 'can't easily cut down on' work etc.. you only have to think how far it would get you trying that if in a plaster cast.. or some such.. and you find that can't doesn't always wash. Unfortunately. We have all tried it. :(
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Thanks Toady - yes weasely is the right word I feel. I don't get the ESR thing at all. Either I have inflammation or I don't - if it's not in the joints then it must be somewhere surely? And it got down to 17 while I was taking Hydroxy but I had an allergic reaction that made this med unsustainable for me :cry: . I admit I'm feeling very low about being stuck on MTX again. Rheumy wrote in his letter to GP "she is agreeable to restart Methotrexate". Agreeable - what a joke?! :roll:

    I know I've tried and failed three DMARDs now but apparently that's not enough. Everytime I come off one or move down to a low dose my ESR soars again and I feel lousy. I thought perhaps it was Lupus or primary Sjogrens but have had a second opinion from a very experienced connective tissue specialist and he said in his opinion it's RA with add-ons.

    Re the heart palps - both my parents died of heart failure both at the age of 73. My aunt and uncle have both got angina and another uncle has chronic heart disease which brought on premature Alztheimer's - grandparents also had heart problems on both sides apparently (they all died young). So I do fret a little about my heart jumping about at night and the giddiness as these were the symptoms my mum suffered before she suddenly died from undiagnosed Angina.

    I did tell my GP the heart stuff was probably psychosomatic because of work related stress and she seemed to believe me :oops: I will tell her why I'm worrying when I see her again next week re the dizziness drug.

    If my leg was in a cast I'd be absolutely fine to travel - wouldn't give it a second thought and would actually relish the challenge. Fatigue, nausea and dizziness are another matter entirely. I have to go as they have already paid for my exorbitant airfares and anyway I've been looking forward to going for months and months and prepared a powerpoint. My thinking is that I'm not going to take MTX that week and save myself the hassle of flying with it. I can't miss my son's graduation either. Next year I'll be a lot more careful about what I take on though and that's a promise. Re work - with three sons at uni from next year we need the money simple as that. Mat x
    If you get lemons, make lemonade
  • toady
    toady Member Posts: 981
    edited 30. Nov -1, 00:00
    Well I was thinking more of a full body cast, iron lung, coma, you name it. :wink: I would be able to physically travel despite dodgy joints etc, were it not for the fatigue, therefore for me too, fatigue is as un-get-round-able as any of the above. I just thought I'd go for a more literal restrictive analogy.

    I understand your concerns re your palpitations etc so yes, you will feel happier mentioning it again.

    As far as 'agreeable' goes, oh yes, that's always a good one. I once took offence at a dr's report I saw containing the terms 'admits' and 'denies', and had no idea these are commonly used until quite recently, years later. Strange, strange terminology. :roll:
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Thanks - sorry I'm such a literal soul Toady - I knew what you meant really and it is good to know that I'm not alone with the horrible fatigue thing :D

    I can't even say that I wouldn't wish this fatigue on my worst enemy because I do actually wish it on this particular rheumy God of mine who writes "challenging" in every letter about me. And although my man GP attempted to calm me down about this latest one - where he wrote "I think she is still quite keen on pursuing the notion of anti-tnf therapy but recognises that she would not meet the criteria. I think she rather thought that she might stay off medication for long enough such that her joints would flare to the extent she would qualify but I really do not think this is a good strategy". Idiot man - I was asking him if that is what he was suggesting I do???! And then in the same letter he wrote "M complains of fatigue but remains very active including in a number of health related areas.." ie she must be either exaggerating or doing too much. I wonder if he would talk about a high powered professional person with RA in this way? He has no concept of this fatigue of ours and probably imagines I regularly clean my house and cook meals and generally pull my weight on the domestic front. And by artist he probably thinks I paint pretty pictures in a lovely wafty studio when time allows - rather than trying to complete a complex public art project spread across two NHS locations and finally collect the dosh I'm owed!

    And I know it is clinical speak as my GP says in his defense - so he's covering himself like a good lawyer would. But the other two specialists I've seen more recently wrote very coherent and un-patronising letters that I found helpful and illuminating. They didn't describe me as challenging or make insinuations about me or seem threatened by my "expert patient" status. Sorry I'm ranting - it's just been one of those long, long weeks. I emailed the physio person who runs the rheumy service here and asked her to ask my very own rheumy what he suggests I do with regard Folic Acid. I got an auto "on annual leave" response :roll: Hey ho. Mat x
    If you get lemons, make lemonade
  • toady
    toady Member Posts: 981
    edited 30. Nov -1, 00:00
    Oh, you rant away, do. That letter.. ugh. ugh_zps7284f209.gifugh_zps7284f209.gif

    'Complains of fatigue but remains very active..' (cringe) they do not get it. I used to think they didn't get it because I hadn't explained in 6-foot high detail, so I gave up turning up clean & well-dressed & assuming they know that is a front, and resorted to clean & well-dressed BUT with a rather ego-denting description of how long it took me to get that way, how rarely I am washed dressed & presentable at home.. still don't get it. Last visit I harped on a bit more about how I would have expected to have more energy now my inflammation is better controlled. As I left, I was asked if I was going home now or on somewhere.. round the shops.. if only!! speechless.. you have my sympathy with your twit. :roll: especially because as you say, your other specialists manage without that sort of tone.
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Oh hell's teeth so its not just me that engenders this patronising rubbish then?! But unfortunately the second opinion chap is just that and won't be my consultant in future - I'm stuck with his colleague. Which is a shame because not only did I think him wonderful but also he has written learned articles on Rheumatoid Fatigue.

    He did tell me never to feel a fraud with my strange RA and said that he was really pleased that I'm working as a volunteer, because with my presentation of RA I'm ideally placed to raise awareness of fatigue and the more systemic symptoms that come with autoimmunity in RA. Just got to find the energy to get out of bed and do it now :lol: xx
    If you get lemons, make lemonade
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    PS just read my motto at the bottom of my comments and thought to myself "well what can I make with a constant taste that's reminiscent of rancid milk mixed with the rust from a sewage pipe I wonder?" :roll: :lol: :roll:
    If you get lemons, make lemonade
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Some type of repellant, Mat, for people to use in dire, emergency situations like mace or pepper spray :D (I do realise your perception of the taste is likely worse than how your breath actually smells, but if we could package and aerosolise the perceived taste....I think you may have something useful.

    PS, Don't forget I mentioned this first when you make your first million 8)
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    The thing is Anna that it doesn't make my breath smell apparently and my dentist tells me there's no sign of poor digestion or anything wrong with my oral hygeine. So my GP tells me this means it must be neurological - which sort of fits with my other symptoms I feel? I certainly do brush my teeth constantly while I'm on MTX - my poor gums had forgotten what hard work it is to belong to a woman with such stuff going on!

    Pepper spray - yiuck - I want something minty and fragrant. I did get given a synthetic saliva spray when I asked about it in Boots last time I took this wretched drug. The chap said that he had suffered something similar when having chemo and this lemon flavoured spray was the best he could come up with. Oh well he did say he lived on mint humbugs too but his teeth weren't much to write home about I have to say!

    Also I'd just recovered my sense of smell and taste but both are gone again now. It is described as an extremely rare side effect of MTX on the sheet but the rheumy professor thought it would be a side effect with me. Maybe I should go into business offering to test drugs out for the most disgusting side effects and if I don't have them then they are guaranteed safe?

    Mat x
    If you get lemons, make lemonade