What are they not telling me?

Julia2960
Julia2960 Member Posts: 14
edited 2. Dec 2016, 05:43 in Living with Arthritis archive
I saw the pain clinic last week,when she saw the condition is was in she sent me for blood tests and x-ray,anyhow fast forward to yesterday she rang me to say the blood tests had come back and they were showing very high levels of inflammation, and that she was ringing my doctors and faxing the results through, she said I don't want to frighten you but it's serious, i asked her straight out in her opinion what I had, r.a.lupus,as you can imagine all sorts of things are running through my head,she replied by saying,I'm not a doctor just a physiotherapist, ,a hour later my doctors receptionist rang,my own doctor was not on duty but a locomotive could see me,she precribed steroids,to take 12,5mg tablets in the morning, the lady from the pain clinic rang me later in the day,to check how I had gone on,and also she had rang my rheumatologist to bring my appointment forward,now I'm so worried,i have been in pain for 6 months now,what's gong on?can therefore be anything worse than,r.a or lupus?

Comments

  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    Hi Julia , dont know a huge amount about Lupus but sounds like your RA is playing up

    shame you dont know what your CRP / ESR results are as it would tell you alot more & I would ask for them from your surgery , mine went mad a couple of years ago & my CRP went from 30 to over 300 & endded up in hospital where they thought it was an infection & RA would not cause a figure over 50 so had to be a infection

    in some ways it would have been better to give you a steriod injection but you have to trust your medical team & 12.5mg is not high & should not do any damage , just hope you are felling better soon
  • frogmorton
    frogmorton Member Posts: 27,475
    edited 30. Nov -1, 00:00
    Julia I'm with Trepolpen too. It sounds as though your RA is seriously misbehaving.

    Not surprised you are suffering.

    Those inflammatory markers are ,however, a relative thing. Depends where your levels are normally. I am very pleased your rheumatology apt is being brought forward. That is where you should get answers.

    I hope you start to feel a little better soon with the steroids in the meantime.

    Sending ((()))

    Toni xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    The people who should be telling you what is going on are those who know what the figures etc. mean. A physio who works in a pain clinic is not a rheumatologist, in my opinion she has shown a serious error of judgement. In my early days some of the GPs in my surgery were always asking me to redo blood tests because they didn't like the figures whereas my hospital was perfectly happy with what they were showing; their understanding of PsA was negligible, their knowledge of the meds and how they work less.

    I suspect your RA is playing up so ensure you get plenty of rest, keep well-hydrated and take your pain relief to help ease things as much as possible. I hope that the locum has not interfered too much, how much would they know about RA etc.? Next week contact your rheumatology unit, explain your worries and ask if they can shed any light. DD
  • Julia2960
    Julia2960 Member Posts: 14
    edited 30. Nov -1, 00:00
    Just reading my post I think I typed it wrong,it was meant to be 12 tablets in one go at 5mg which is 60mg,anyway this is the second day,it am feeling much better,it can't describe how ill I have felt for 6 months,two ing and frying from doctor to rheumatologist to pain clinic,finally I felt like the lady from the physio actually believes me,I have have injections in my knees,but it only worked for a few weeks,I've had indometacin, lycia, amitriptyline, nothing was working,today I actually feel like there's light at the end of the tunnel,i will be asking questions at the doctors next week,
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    Julia , have they given you a plan for the steriods , 60mg gonna make you fell better but you cant stay on that level for long , because of the side effects but atleast will buy them time to sort a plan for your medication ie: biologics like Tocilizumab or rituximab

    hope they can help you
  • Julia2960
    Julia2960 Member Posts: 14
    edited 30. Nov -1, 00:00
    I've only been given steroids to last a few days till I see my own doctor on Tuesday, all I know is ,I feel much better today,I can open the door without screeching out in pain,I can walk down the stairs on my own legs,i can open a bottle of milk,the list is endless,for months I have spent my days not knowing where it's all going to end,the stinging pain in my wrists made life unbearable,and my neck was sore and stiff,I couldn't even bear to be hugged,so if I am taken off steroids,i don't think I could cope going back to all the pain I had,it wasn't just the pain,every day felt like I was getting the flu,i feel I have been thrown a lifeline,my pain has reduced to 95% ,that will do me,at least for the time being,
  • Julia2960
    Julia2960 Member Posts: 14
    edited 30. Nov -1, 00:00
    I will let you know how I go on,this morning I actually got round to putting my clothes away in the wardrobe, i know that sound silly but for me it was quite an achievement, i couldn't manage to open my wardrobe the last few weeks,they slide and the pain was unbearable,I'm sure many of you can relate to this,feeling happy, :D
  • Julia2960
    Julia2960 Member Posts: 14
    edited 30. Nov -1, 00:00
    I said I would let you know how my appointment went,so here goes,the doctor said I have a temporal arthritis, the blood tests results were,a raised ESR of 45,raised CRP of 64 and a raised plasma viscosity of 1.73, he said to stay on steroids for a few months,I've also got an appointment on Thursday with the eye clinic,apparently this condition could effect my eyes,i don't know much about these readings yet,the doctor explained that it's like your blood getting very warm from all the inflammation, and it can form clots,leading to a stroke,
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    My mother's neighbour had temporal arteritis and she was sorted after a few months on steroids. The dose was high (as it needed to be) so life was not that comfortable for her whilst on them but they solved the problem. Good luck, I hope they help and you will probably find that the arthritis 'feels' better too - now that's a result! DD
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    What a good thing it has been picked up quickly before complications set in, and treatment can start to deal with it. An acquaintance of mine had this but her GP dithered and delayed(despite her having textbook symptoms) which made things worse than they need have been.
  • Julia2960
    Julia2960 Member Posts: 14
    edited 30. Nov -1, 00:00
    The physio lady rang again this morning to see if I was OK, can't believe how good she's been,I'm really glad she knows her stuff,thanks for all the links,and support,I'm don't wish this on anybody,but I'm glad there's others who can relate to me,and all my complaints,thks everyone ,I'll let you know how things progress,
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi, we're a week or so on now, how are things going? DD
  • barbara12
    barbara12 Member Posts: 21,257
    edited 30. Nov -1, 00:00
    Hello Julia so sorry I missed this...but glad to hear your Physio picked up on everything ..temporal arthritis has to be dealt with straight away the sooner the better , so fingers crossed you will get there with the steroids..please let us now how things are form time to time..

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