Feeling Blue .... anyone else?

Has anyone else experienced such frustration between different clinicians? I have been under rheumatology, dermatology and my GP for 10 years now with vasculitis and sub-cutaneous lupus. My "flare ups" have been getting more and more frequent and my symptoms much worse, hydroxycloroquine no longer works and made me terribly nauseous. My rheumatologist suggested a methatrexate or cytoxin 3 appointments ago, but I didnt want to take it as I was still considering pregnancy. last week I had a terrible, dibilitating recurrence of symptoms, my GP asked the rheumatology team to review me urgently and recommended I start one of the imuno-suppressants as I am now ANA positive (1:160 speckled), have positive inflammation markers and have just been diagnosed with pernicious anaemia and borderline addisons also - but rheumatology have refused and wont see me until July as I was "fine" at my last appointment at the end of December! Has anyone else experienced this kind of thing? I am only 30 and just want to get on with my life :(

10 Replies

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  • I think the difficulty comes when we refuse to do what they tell us. They get terribly God-like in their self-belief, and never having taken these horrid drugs themselves, have no idea what it is like to be us. I suspect you are being "punished" for disobeying orders (to take MTX or Cytoxin (cyclophosphamide in another guise)).

    However, neither of these drugs should be taken lightly - they can help - but in view of their potential to do harm we need time to get our heads around it all.

    I am coming to the opinion that all rheumatologists (and renal consultants and perhaps even dermatologists) should be made to take a course of each drug before they are allowed to prescribe them. Things might change quite quickly then! How the pharmaceutical companies get away with marketing these things, which have such horrid side effects, is beyond me! Yes - they keep the lupus at bay - but they have equally hideous side effects, which themselves can be a cause of morbidity - and thus we are caught between the devil and the deep blue sea.

    Take care,

  • Thank you MaggieS - i agree maybe doctors should be made to take a course of the drugs before prescribing! x

  • Rachy, I really feel 4 u. The best Consultants in the world don't even understand what u're going thru & how u're feeling as although they may KNOW about lupus, they don't HAVE it & I personally find it very frustrating when my Rheumy tell me I'm 'looking pretty good' & that he can't c or feel any problems I'm moaning about. My reply is always "Spend a week in my shoes & THEN tell me I'm doing well".

    We all have enough 2 contend with day 2 day as it is without shoving more medication down our throats that can potentially do more harm than good, especially when they don't always tell us the potential side effects & allow us time 2 take these in2 consideration. They r the Docs so they believe they know best :(

    As some1 with lupus, the way u feel can change day 2 day & a decent Rheumy should know this. I think u should ring them back up & demand that they c u sooner, failing that, go back 2 u're GP & ask him 2 re-refer u as u r having an awful time of it at the moment. Just because THEY r the 1's with the degrees, don't let them fob u off, it's YOUR BODY & it's u're RIGHT & their JOB 2 address u're concerns, listen 2 u, explain things properly & 2 try & treat u & u make sure u bloodywell tell them that x

  • Hi Sher78 - thank you for the reply, it's great to see that people on this site (as a newcomer) really understand how I feel! At my last consultation I was seen by a registrar rather than my usual consultant and after 2 minutes of being in the room he told me that I "looked fine" so he would see me in 6 months!!! I came out and sat in my car and cried. Thank you for the advice, I have booked an appointment to see my GP again on Thursday to try and get re-referred (as a side note my GP wont have received the letter from the hospital as they sent the letter to a GP surgery 20 miles away!!) I will be taking my husband with me to the appointment and I wont be fobbed off - thank you for the support x

  • hello rachy

    doesnt that always happen you finally get to see your rhemey and talk through everything and then you go home and a few days later BANG you start to really hurt and then worry and then you can t see him/her till your next appointment which is months away and in the meantime you go back to gp who is only a gp not nessesary very knowledgable about lupus and it s many other symptoms and that circle begins again,it has happened to me many times.

    i try to deal with the pain until it gets to a point where it has me bed bound or chair bound and i can t go to work (like today) as i have nasty thigh and knee pain/ache which makes walking far quite difficult so i need to rest its so frustratiing.

    i too hate drugs, as my organs are not effected by lupus i can keep my drugs to a minimum. strong painkillers help but hydroxy upset my stomach so i can t take them i react badly to any drugs as i suffer with ibs.

    if im honest i would take anything right now to take the pain away and give me back my active life, i miss being me, somehow i feel i have lost my way and thats what Rhuemy docs just dont understand, the freedom of choice has been taken away and replaced with pain.

    i too have insisted on occasions to be seen earlier as i have felt unwell and i have found that if i call the secretary not the nurse or gp i have got an appointment without any problem that might be a better route. goodluck

  • Hello pinky56 - thanks for the reply. I too took hydroxy for 5 years until it really upset my stomach and I had to stop taking it. Its awful that we have to get to the point where we will try anything just to take the pain/symptoms away, but what I am discovering is that taking meds to solve one problem causes another! You have totally hit the nail on the head - I miss being me, I am only 30 and on my worst days I feel like I am an 80 year old (and probably look like it too!) I am so grateful to have found this site with people who I can really talk too about how I am feeling and understand. Take care x

  • Hi Rachy, I do feel for you and hope you can get an earlier appointment. In the meantime, make sure your GP has everything on record about your current symptoms. Do you keep a 'symptoms diary' ..may be useful too. All good wishes. xxx

  • Hi nightjar - thank you for the reply, I think I will start to keep a symptom diary as this sounds useful. I have a booked an appointment with my GP for Thursday so hopefully I will get somewhere! x

  • i loved maggies answer. my rheumy refused to see me because i asked for anather oipinion and its true they treat chemo drugs like you are eating sweets, the callous behaviour of our so called health proffessionals is unbelievable,,,i feel like i am on a journey with many diversions and pitfalls. since starting meds i am worse than i have ever been in my life. and dont you dae have an opinion or dare ask what they want you to take or you will be left to your own devices forthwith...

    thanks for that post maggie i need that rant hugs t this great team x

  • Hi tintin49 - I know it is terrible the way the patient is treated sometimes - to make matters worse this week I discovered that my GP wasn't receiving letters from the hospital because they were sending it to some random GP surgery 20 miles away! I wouldnt mind but every time I attend an appointment they check the GP details so I know they have the correct ones on file!! I agree - hugs to this fab bunch of people on here xx

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