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  • Maturecheese
    Maturecheese Member Posts: 126
    edited 30. Nov -1, 00:00
    Bloods are a mystery as I'm still learning to decipher them. Bear in mind they are 2 weeks old but some are lower and some are higher. The worrying thing for me is my crp levels, 138 last time and I'll bet they are just as high this time. Obviously we can tell when we are inflamed. Night time is a nightmare esp in my chest/ribs front and back and legs from groin to knees. Last night I literally had to work up to getting out of bed at 3.20 ish to visit the loo as I knew it was going to hurt. I rang the helpline and left a message hinting at why don't they give me a full body MRI and get to the bottom of what could be an infection causing this. Chances are they say forget it and i'll have to put up with this till the next appointment in May, that is when they send it.

    I wouldn't say I'm a Hypochondriac more just a worrier esp as what I've seen with family members. The trouble with the NHS is you have to bang down doors before they will take any notice. When I was a young man I had an expanding lump on the back of my head which they (the GP's) basically ignored for months until I went to the hospital of my own accord and they operated the same day. Luckily it wasn't anything sinister. That's what we have to deal with around here.
  • trepolpen
    trepolpen Member Posts: 500
    edited 30. Nov -1, 00:00
    your level of CRP are not good , most RA suffers with high CRP is 20 to 30 & was told anything above 50 was not RA , a few years ago I was sent to hospital & CRP was 240 , other things can cause this to be high like infections & trauma , after they done a few opps on my hip it was 340 & settled down to just over 100 & now back to normal

    just think you need something along side Methotrexate , most of us take a second Dmard like leflunomide , sulfasalazine , or hydroxychloroquine and maybe one of the new biologics as well

    just think you got every right to make a fuss , go see your GP or Consultant
  • Maturecheese
    Maturecheese Member Posts: 126
    edited 30. Nov -1, 00:00
    trepolpen It would be nice if they would concentrate on finding the source of the likely infection hence my wanting an MRI but try convincing them, impossible. EDIT Incidentally,, did they find the source of your infection? Seeing my consultant before they are ready to see me is impossible and seeing a GP that will actually listen is nearly impossible such is the over subscription of our GP surgery.
  • trepolpen
    trepolpen Member Posts: 500
    edited 30. Nov -1, 00:00
    Incidentally,, did they find the source of your infection? Seeing my consultant before they are ready to see me is impossible and seeing a GP that will actually listen is nearly impossible such is the over subscription of our GP surgery.

    Sort of no , they washed out my hip 3 times , up under & open up my hip but they never found anything , my GP refered to it as a septic hip but they endded putting me on 60mg steriods & 4 years later still need high steriods & my hip is now totaly knackered & needs replacing

    Steriods are not the answers but you need to know what is going on
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    Right. Take this with a pinch of salt. Several, in fact. I'm on holiday and on a 7" tablet, neither of which are conducive to reading through back posts or typing new ones. So I'll skip the reading and just go by what I can barely remember.......

    We've had people on here before now who have initially been thought to have RA but who have subsequently turned out to have Lyme Disease. Not that they're mutually exclusive :roll:

    You could put the term in our search engine and some former threads will come up, Also try:

    http://lymediseaseuk.com/faq/ (It has, if you scroll down, a questionnaire which might help.) Also NHS has a page on it.

    This will probably be of no use but....no stone unturned etc etc.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    That is definitely worth a try, MC, I remember one lady on here who, as it turned out, had Lyme's rather than an auto-immune, the symptoms of both are so similar . . . . . nothing ventured, nothing gained etc. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Maturecheese
    Maturecheese Member Posts: 126
    edited 30. Nov -1, 00:00
    trepolpen Sorry to hear that regarding your hip but if you're still here 4 years later whatever was causing it wasn't deadly, thankfully.

    Re Lyme Disease I already thought of that and had them test me and it came back negative. We used to walk our Ferrets (i Know) and they would often come back with ticks and I had an odd rash on my chest about 6 years ago which baffled my GP but it went and as I said the blood test was negative.

    I'm concerned about my night sweats for the last 3 weeks or more and weight loss, I'm still just over 12 stone but when I used to go to the gym and weight train sometimes, I got up to 13.4 not much heavier I know as we used to do crossfit stuff as well so I wasn't trying to bulk up, my weight before that was around 12 9. Lost a lot of muscle so maybe that's it. So to summarise
    Night sweats,fatigue,bit of weight loss, high crp not getting any better re pain 7 weeks into meth. You can guess what I'm thinking. Got the doctor (GP) ringing later so hopefully I can get something done like an MRI but I doubt it.

    Edit, I did have a chest,abdomen and pelvis CT scan in Nov last year to look for signs of infection and none were found but that was nearly 5 months ago so I don't know if that should ease my worrying.

    Edit 2 Surgery just rang, receptionist tell me doctor too busy make an appointment next week. That means the ringing at 8 in the morning lottery which mostly doesn't work, if you are not through by 8:05 you wont get anywhere.
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    Muscle is bulkier than fat so muscle loss can cause weight loss. So can RA. Some people don't respond much at first or, indeed, at all. I've mever hqd night sweats with RA but it's a recognised symptom. It can be a tough waiting game.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Maturecheese
    Maturecheese Member Posts: 126
    edited 30. Nov -1, 00:00
    Not long after my last post i had a phone call from Rheumatology saying they had tried to get hold of me last week re the high crp and the consultant had given me an appointment. They reckon they left messages on my land line but there were none and I checked it was working properly. They must have rang the wrong number. Anyway they will try to arrange an appointment this week coming but I need to get hold of them and make sure they have my telephone number.

    Obviously with my recent weight loss, night sweats and lack of response to meth I am more that a little concerned they are barking up the wrong tree. If they are, giving me Meth was daft as it lowers the immune system.
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    Mistakes happen. It's good that they persevered in getting hold of you but do ensure they have the correct landline number.

    I think the likelihood is that, with such high CRP levels, the rheumatologist will want to give iit a good clout with more than just meth. But meth is the normal starting med so an obvious choice. Nothing yet to indicate it might not be arthritis.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    The high CRP is an indicator of something auto-immune going on and it could well be that meth alone is not enough to make a difference. Many on here take two or more medications to control matters, that is not unusual: just taking one is, for the forum at least. I often wonder if those who are doing OK on meth, or lef or sulph, assume the rest of us are the same so haven't bothered looking for a forum. Why would they? :roll: It's left to those who are not doing that well in comparison to encourage and support.

    I began with one med, nothing happened, so that was increased to two, then three before a sustained change came about. Auto-immune conditions are far from straightforward to deal with, they manifest uniquely: we might share labels but how and where we are affected is as individual as us. I regard my OA as the honest disease whereas my PsA is crafty, sly and underhand. From when it began to my accurate diagnosis took nine years. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Maturecheese
    Maturecheese Member Posts: 126
    edited 30. Nov -1, 00:00
    Thanks all. I guess you can see what's worrying me is, it the big C and they have it wrong? I wasn't losing weight apart from the natural loss from not working out any more and now I am and looking a bit gaunt and until 3-4 weeks ago I never had the night sweats, now I get them every night, literally dripping. When you take those two things into account and the steady decline for the last 16 months it looks dodgy. I'm not going to take Mondays dose of Meth or any more until I've had a chance to run all this by the Consultant, hopefully next week. Hopefully progress will be made one way or the other.
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    For a start, 'the big C' is nowhere near as big as it was some years back. I can't even remember the year I had it but it was about 25 years ago.

    However, I'm now wondering if you're drinking enough to compensate for the sweats. Dehydration can cause high CRP levels and I think ( though I'm not sure on this) it can even cause sweats so a vicious circle.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Maturecheese
    Maturecheese Member Posts: 126
    edited 30. Nov -1, 00:00
    cheers sticky glad to hear you beat that one I do get dry as hell at night but that's probably the codeine as I used to get it before the sweats. Anyway off to bed now to sweat :) hopefully this week will bring answers.
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    I hope so too but, in the meantime, leep drinking plenty of the boring stuff.. As my old Mum used to say, if it does you no good it'll do you no harm.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Maturecheese
    Maturecheese Member Posts: 126
    edited 30. Nov -1, 00:00
    Well I finally got to see the GP and then the Rheumey the next day, talk about buses. Gp says x ray fine and gave me a bunch of bloods because I'm worried about night sweats and weight loss. She said to show them to the Rheumey the next day in case he wants to change or add to it and that is what I did. The Rheumey seemed less bothered by my symptoms but said He would arrange for Gastro to see me and mention a Bone scan to his superior to see if he agreed although he didn't think it was a good idea due to the down sides to that procedure. He has put me back on steroids for a month, tapering again (20,15,10,5)and raised my meth to 20 mg a week. I can't understand why he hasn't stopped the meth and put me on antibiotics to try to stop the infection that is causing the inflammation. he did mention it but didn't do it. He has also said he'll see me in a month. Incidentally he also looked at my shoulder x ray and wasn't bothered by it so I assume it just shows OA damage like my knees even though he can see it's inflamed. So I guess I should stop worrying if I can and wait for any further developments.
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    I think he's been thorough and that is good.

    I've probably missed something but what is it that you feel requires antibiotics? I think I read somewhere of antibios being used to treat autoimmune forms of arthritis but I don't think it's usual.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Maturecheese
    Maturecheese Member Posts: 126
    edited 30. Nov -1, 00:00
    stickywicket, Re antibiotics To treat the elusive infection that is causing the inflammation in my body. Apparently though he has decided to just up the Methotrexate and give me another 4 week tapering steroid course and see me again in 4 weeks. As a senior Reg I have to assume he knows what he's doing. Sorry about my negativity, but I always assume the worst, can't change a lifetime habit. :)
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    Please don't apologise for being honest.

    I'm a bit jet-lagged right now but I think what seems to be happening is that the rheumatologist is fairly confident that your symptoms are simply those of an autoimmune arthritis which has not yet been clobbered sufficiently. You yourself seem to think there must be more to it than that.

    I can understand your fear that you might have something nastier than arthritis but, believe me, arthritis can be a very nasty, devious disease and we all react to it, and to the meds, slightly differently. Hence the further steroids and increase in meth. Meth is the usual starter med but many of us end up on two or three.

    There's no point in just giving antibiotics unless it's known what they are for. Different types of infection require different types of antibios. So, even if you did have something other than, or in addition to, arthritis, they'd have to know what before treating it.

    I hope the increased meth, further steroids and, hopefully, increased hydration will soon prove helpful. Forgive me for banging on about the hydration thing but many people simply don't drink enough and, when our livers and kidneys are having to deal with meds too, it becomes more important than ever even if they seem to be coping well.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • trepolpen
    trepolpen Member Posts: 500
    edited 30. Nov -1, 00:00
    I just think of where I was 4 years ago with a high CRP & given 60mg steriods & still on high level , you dont want to stay on high levels but a maintance dose would not do long term damage , but you want to know what is doing this , increasing meth is normal but you want answers

    I have been left with avascular necrosis in my hip , & it need replacing , know they dont have all the answers & hope the meth + steriods help & maybe they will add another DMARD or biologic , we on here cant tell what to do or what to take , as for meth I was on it for 18 years & is a good drug for RA , just hope you feel better soon
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    It's not unusual for docs to recommend we carry on with the immuno-suppressant meds whilst we take anti-bios, as with all things medical it's a matter of the personal opinion who is treating us (and who usually don't have to live as we do, they deal with theory whilst we confront reality).

    The humira I take supposedly increases my risk of contracting cancer by 25% which doesn't bother me in the slightest. It seems that every year the kinds of cancers that can be successfully dealt with increase in number: that has yet to happen with arthritis. Our disease is not dangerous or potentially life-ending, it's dull and life-wrecking. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    The humira I take supposedly increases my risk of contracting cancer by 25%



    :? I think the 25% might have lost a decimal point or two. All the research I've found indicates that, with all DMARDS and biologics, there is a very slight increase in the incidence of cancer but the emphasis is on the very slight.

    “Overall cancer incidence and mortality risk are similar to the general population in IBD, and slightly increased for RA and psoriasis.”
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3765952/

    I'd just like to point out that my breast cancer happened several years before I started on meth and hydroxy and, despite my taking them for 18 years or so, has never recurred.

    I'd also like to point out that my disagreeing with DD is exceptionally rare :D
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    Sorry, it was a typo: I wasn't on my usual keyboard. :oops: Thank you for pointing out my error, Sticky, I appreciate it. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Maturecheese
    Maturecheese Member Posts: 126
    edited 30. Nov -1, 00:00
    Thanks sticky I'll definitely have to try to drink more water. This wasn't a problem when I used to go to the gym but now I'm not drinking anywhere near enough. I drink a lot of tea if that helps :) . As for my other worries, I'll just be a lot happier if and when they investigate my tummy area.
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    This is a common problem, I suspect that as we age our thirst receptors become less active and it becomes easier to confuse thirst for hunger. Neither of my parents drank anywhere near enough liquid but Ma was slightly better at it than Pa. I drink a huge amount of tea but always have a glass of water to hand: water is absorbed faster and is a good thing to try first if one has a headache. We wouldn't dream of trying to run our cars without fuel and oil but happily do that to our bodies: daft, innit? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
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