appointment with the rheumatologist

had appointment today but not with my usual rheumatologist. he asks me if the entanercept has worked. so i told him no. he asks if the methotrexate has worked i said no the only thing that has helped up to now is steroids. so he looks at his computer and looks at me as if im lying and tells me its not possible as my recent blood tests are showing that my condition is inactive. so i say to him how is that possible if im still feeling all this pain still looking at me like im lying he replies i don't know. so now im confused for a moment until he shows me the computer which is showing my last results of blood tests which is when i was last on steroids. so i say to him is it possible that the steroids could be giving low results as they were the only thing that had been working ? he then tells me yes it could be. so why the hell couldn't you as a specialist know that they could be wrong results instead of looking at me like im here lying. looks like im going to be calling my usual rheumatologist to complain not happy that im sitting there clearly in pain to be looked down upon as a lyre when in fact you should know your job and about the drugs and results they can give. now had methotrexate dosage put up along with more steroids and have to have more tests as he still never believed me until i showed him how swollen my legs are and made me laugh inside when he said your ankles look abnormal??????. well you don't say maybe it could have something to do with my condition and the fact they are swollen and giving off lots of pain bloody dim wit

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  • Oh I'm so with you on this type of treatment.....have had exactly the same in the past and the battles I had to fight to be recognised and believed so that I could move on with my treatment....frustrating is a major understatement!!!!

    Definitely get back with your usual rheumy if you can....and don't let them push you around and make you accept what they say....only we know what we go through!!

    Good luck and let us know how you are getting on. Big hugs xxx

  • i still see my normal rheumatologist but he was not in today so had to see another but will be complaining about his actions today not happy with the way he was trying to imply i was lying i could see it in his face almost grinning when i said nothing is working yet until i mentioned about the possibility of the steroids causing the low readings i mean that's his job to know not mine. and yes your right only we know what were feeling

  • Hi

    The other thing I found out at my last Rheummy appt is that in 10-15% of RA cases inflammation doesn't show in the blood results, my ESR and CRP are always normal yet the last 2 times My DAS has been >5.1 as joints so swollen and painful, I now qualify for biologics. Those blood results are only a third of the picture, they should really know better........sorry you had such a dullard today xx

  • my esr and crp are usually high and steroids do work for the pain and that's what makes me think its the steroids that gave a low reading because as soon as i stopped them the pains just all came back along with the swelling. but what you have just said is something i never knew will have to mention that to my specialist to. already on the biological but not done a thing so far

  • Do you mind if I ask which biologic you are on? I'm on Cimzia and it's not working....it's only the steroids holding the RA at bay.

  • im on entanercept pre filled.

  • Can you tell me what DAS means mine was 8 last time I went , I have no idea what it means..I should "buck up" really shouldn't I? Maryx

  • DAS score is how much pain your feeling in your joints i think im not 100% sure as im new to all this myself x

  • Thank you..I think you are probably right. Maryx

  • Its the Disease Activity Score used for rheumatoid arthritis. They generally use it to see how active your disease is and how it changes with different treatments.

  • ahhh that makes sense as you have to fill that form out on every appointment :) thanks for that reply

  • Thank you...mine must be bloody high at the moment!!!! Maryx

  • mine is got lots of swelling in the legs from hips to toes at the moment and all the joints keep going stiff and really hurts they think i now have gout on top of the ankylosing spondylitis just great whats gonna come next :( x

  • Oh honey, I don't know what to say...you poor thing but your "known by name" does tell me you have a sense of humour! I really hope you get some respite soon. My GP gave me one a night Zopiclon to help me sleep have you ever thought of asking for something like that? I must say they are my life line at the moment I don't know what I.d do without them..also consultant put me on amatriptyline 25mg a night to help with the pain and the muscle spasms and cramp...Godknows what I.d be like without that help plus the tramadol and occasional morphinen....blimey I'm a walking chemist!!!! Maryx

  • i do its the only thing that helps keep me sane lol. i have amatriptyline and diazapam for sleep and have codien morphine patches as well as tramadol. also on embrel biological and also methatrexate but none are working up to now. and the narcotics don't always help me to sleep so i use cannabis from time to time i know its not legal but atleast it don't mess with my insides and is really good for promoting sleep and is really a natural herb that grows naturally without man manipulation like all the others im on think its about time they made it legal though cant understand why its not it helps so much people with different medical problems. i feel the same walking chemist lol im on 12 meds at the moment and have to carry them everywhere i go as my kids like to mess about with all my stuff and cant afford for them to get hold of them to dangerous. also been looking into food and apparently some of the stuff we eat can effect arthritis dont know how true it is but happy to try anything right now. x

  • Blimey you are or a lot. I was on gababentin. I put on soooo much weight also I started to have fits so came off it...I haven't had a fit for a long while now but still can't drive. You sound far worse than I, I'm sorry you are having such a rough time. I tried weed once and hated it, I was sick, also I've given up smoking (and drinking) life is a barrel of laughs isn't it. I hate it too when I go anywhere I have to take me meds with me..people can hear me coming. I really hope you are sorted out soon, I really do..sending you a smile pass it on. Take care. Maryx

  • thanks guys xx

  • So not good this type of care. What i would say the longer i have this disease the more it seems to me that we have to be very proactive in our care. Since i started to get myself more involved i have found that rheumy and i get on better. He seems to be as pleased with my progress as me !! So i really hope you get the care you should have xxx

  • I wouldn't be the first person on this forum to say that good blood results don't necessarily mean no active disease. If it's not too much effort for you, could you maintain a symptoms diary? I have been doing this over the last few weeks because I'm suffering from a little bit of depression and my analyst wanted to plot my mood against pain. So I've been creating this natty little Excel spreadsheet that plots mood and pain on a graph.

    It was great for my conversations with the analyst and, when I had a recent rheumatology consort with a new person, I took it along with me to show them, because on the day, sod's law, my physical symptoms were low, as were my blood test results. It made a huge difference to the discussion we had, doctors like to see evidence so if you can manage to keep a pain diary (or symptoms diary) it may help you too? It worked for me.

  • i did for a few weeks but got fed up with pretty much writing the same stuff over and over again. but you could be on to something there might be worth me starting again and taking it with me to my appointments especially if i end up seeing the same person again. thanks for the advice

  • If you have access to Excel of Open Office, and can PM me you eMail address I could send you a copy of my spreadsheet if you want. The graphs really make it speak out. I plot mood and pain but you can edit it to plot say pain and fatigue or pain and inflammation

  • yes i do have access will send email to you now that would be great thanks again :)

  • Done!

  • just had a look and perfect will start on that right away thank you very much for your help :)

  • Hi Get......that so called rhummy, was probably an underling, of your good rheumatologist.........I have been exactly same as you, in agony but blood tests show inactive.......yet I'm in pain, but thank god I've known the same rheumy since 2002, when admitted to Hosp as emergency, been with hi. From the start, so he knows how bad this rotten disease has taken hold of my stupid body,........COMPLAIN.......good on you ok..........there are many many old people and the ' Newbies' to this Insidious Disease that wouldn't think anything do that stooped rheumatoid you saw, and won't ask the correct questions, they take their word........hope all goes well for you soon ok x

    PB.......hi there again, I have gone thru the rotten depression due to the pain and feeling my body is failing me......I use to say " I look a Picture of health" to friends and family, but as the years have worn on, I look worn out! and now with age too! I look and feel terrible........sometimes I can't even bother to wash, it's such a mental effort to have a shower! then dry myself.......my hubby use to help, but I don't want him Doing that, makes me feel like an elderly person! and I'm not elderly ..............you take care of ya self ok.....wish I could take that all away from you.....x

  • Oh bless you...if it's any help I too can't even be bothered to wash sometimes. Sometimes I just lay on the bed all day...I do wonder if I have a little depression as well through the pain. I'm not interested in anything lately and I loath the person I'm turning into...maryx

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