Giving up !

Need to have a rant :(

Went to have bloods taken, phlebotomist didn't bother to wash or gel her hands hence i declined the test!. Saw the consultant said i didn't feel there had been any improvement since starting on methotrexate and quinnine,( the only thing that did help was the steroid injection which sadly only lasted a month). was told the pain i am getting was muscular and wouldn't improve.

Have decided it's not worth the vomiting exhaustion and hair loss if i'm not going to feel better, so have stopped treatment.

34 Replies

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  • Please don't stop treatment

    Discuss with him changing it but don't stop as RA can do damage internally to your organs

    Reconsider it. I did this a while ago and the rhummy persuaded me to change my mind. So glad He did I know you feel angry and alone , but try to get through this

    Good luck

    David

  • So sorry to hear of your bad experiences. I am in a similar situation and have not been offered any alternative treatments. Fortunately I have few side effects with mtx injections so i am carrying on with them only. You could ask for a second opinion regarding your treatment and i would definitely complain to PALS about the phlebotomist. J xXx

  • So sorry you are going through this. There have been a few times I have felt like chucking it in. How long have you been on MTX? Can you talk to your Dr and ask what alternatives there are to MTX that you can take. Please talk to them, see what alternatives there are or ways to minimise the side effects. It is so frustrating being your own advocate all the time, but if we don;t there is no one else to stand up for us. Stick with it , I know too well it is so hard when you feel it is a waste of time and the side effects are so bad and ask those questions.

  • That's bad about the phlebotomist. What on earth did he or she say to explain I can't imagine as this is obviously not good practice! Do please complain about it, for the sake of everyone else in the hospital who may not be as conscientious as you.

    But without a recent blood test I guess it's hard to know whether the meds are having any effect or not, although have the results been heading in the right way since you started on the drugs? Because if they have then it does suggest that you need to stay on some form of treatment, even if not the one you've been given at the moment. How long have you been taking the drugs for, as also the side effects can change over time. My first couple of months were awful, but then everything calmed down and it's been fine. However, if you've been on them a while it doesn't seem right that the consultant wasn't prepared to discuss alternatives if you are having such bad side effects - vomiting is something they should have taken seriously.

    It's obviously your choice as to whether or not you accept the treatment offered. But do try to have another go at talking to your consultant about how you feel about these drugs, and whether they would offer some alternatives. As you probably well know, uncontrolled RA can be very serious. You also need to understand why the consultant thinks the pain is muscular rather than related to inflammation in the joints - did they explain at all? As leaves you in a bit of a quandry I imagine as to what to do about pain management.

  • Trust me i did speak to someone about the phlebotomist !, hopefully the practice will improve, Have had a phone call from the Rheum nurse at 08.30 and have agreed to meet with her at lunchtime, so will see what she has to say. i have written down a few questions. just hate the way this b****y disease is taking over every aspect of my life.

  • Hi

    Please don't stop your treatment as the others have said to.

    I used to get very upset and confused with it all in the early days and most of the usual drugs caused bad reactions, take someone with you who can if need be, to talk for you or just support you it makes a huge difference.

    Go back and talk to Rheumy nurses or the consultant again. You don't have to put up with the side effects there are lots of different drugs, believe me I've tried most of them, I have now been settled on one for years and it's working.

    With the odd flare but now a days it's usually me over doing it that starts them off!

    Please don't give up, set up another appointment take a friend and a few tissues if you're anything like me, and thrash it out until you get the right treatment for you.

    Good luck

    Alison

  • I'm not too sure what you want us to say. My first reaction was no, don't stop treatment but then maybe I was different, I was happy to take anything that would take the hurt away, because the pain relief & the anti inflammatory my GP gave me weren't doing it that was for sure. Once I had my 'proper' meds the symptoms eased greatly but gave me other problems, side effects. But, I knew I had to take them, my Consultant explained why & when they became too much & couldn't be eased by taking another tablet we talked about changing them & when my results were less good were changed again. But that's me not you & my bloods & body in time gave a picture of my meds working.

    Have you thought "what would I advise my patient"? Reversed the roles & listened to your, the nurses experience. Maybe she'd say "ok, you've not tolerated these meds so let's try different ones", but I don't think the caring side of her, knowing how bad things could be without meds would say "give up".

    Has your Rheumy told you you're not going to get better? If so that's very uncaring, even unprofessional of him & just not true. It won't go away but you can be controlled, it just takes some juggling of meds in the early days & you are newly diagnosed so please don't give up.

    You have the advantage of the good people here when things get on top of you or you need some advice. Unfortunately as I wasn't here in the UK in my early months of the disease & at that time because of how the site was back then I didn't have that benefit so do use that huge bonus & pop on when you're unsure of something or need some support if you decide it's worthwhile persevering trying to get your disease under control. x

  • I am so sorry that you are going through such a bad time at the moment. I am glad that you are meeting with the Rhuemy nurse, take a few deep breaths and tell her how you feel about your treatment and medication. She seems like a sound person to trust as she contacted you quickly.

    You don't say how long you have been on methotrexate or how much folic acid you are taking. Upping your dosage of folic acid to daily except methotrexate day can help with side effects and hair loss. If methotrexate is not for you then there are other drugs which your body may respond to without such problems.

    This b......t disease can really harm us without treatment and unfortunately all of the drugs prescribed to control severe RA can have side effects; but do not give up hope there will be a drug or combination of drugs that work for you. It takes time and patience to find these. It can seem like a constant battle which can reduce us to anger or tears and coming across folk like your phlebotomist can push us to the limit. That's the great thing about this site, there's lots of support when you need it most.

    Hope your meeting goes well with the nurse today, let us know how you get on.

    Mall

  • SSorry I'm not an ignorant woman but what is a Phlebotomist? As it is something to do with the taking of bloods (I'm assuming) is it a nurse? I've just never heard the name before.

    Hope you get your meds sorted out soon. From my experience I have found that my Rheumy team have been right on every occasion, I can only speak for myself though. Don't make any decissions while in 'ranting form'.........take a breath and then talk again. All the very best. J

  • A Phlebotomist is a care worker qualified to take blood samples Jean. We have one employed part-time in our Practice & I used to have mine taken by her until I needed closer attention so a Practice Nurse takes mine now because they can monitor my other things like cholesterol, vitamin D etc.

    Wise reply to Anne999 by the way.

    Hope you're ok today? x

  • They are the people who take blood, usually in blood clinics in hospitals. If you have your blood taken at your GPs, then it's usually a practice nurse who takes it. However, in hospitals they have teams of phlebotomists who are not trained nurses, but assistants. All they do is take blood so don't need the long training of a nurse. Not a job I'd like as in my hospital there are often 100 people in the queue, so it's never ending.

  • As I thought then.......Practice nurse not a good enough title then! I'm in ranting mood myself......this whole thing about giving people outrages titles......remember "enviormental cleansinng providers'?........bin men in my day!

    Rant over, don't know whats wrong with me today. At least the 'summer' is officially over so now people can stop complaining about it, but will they....like hell they will......personally I find the Autumn of the year so much more beautiful and rearly disappoints......if weather bothers you it just means your not dressed appropriately! There now rant definetly over......... XXXXXXXXXXXXXXXXXXXXXXXXXXXX

  • People who take blood have always had the title of Phlebotomist Jean but maybe you've not come across it before. A Practice Nurse is much higher qualified though of course part of their remit is taking blood.

    Rant away if it's one of those days Jean. I think the title Healthcare Assistant is daft, they were always called Auxilliary nurses, & are given too much responsibility in my opinion. x

  • We don't have phlebotomists in Canada. We go to blood labs where there are about 4 technicians to do people's bloodwork. Maybe they call themselves phlebs, but I'd never heard that word before either :)

    Glad it's not related to lobotomies :)

  • Maybe you've not heard them called it before Karen, the technicians were likely Phlebotomists ehow.com/how-does_4779768_b...

    & maybe if it was related to lobotomies all the ones who've taken my blood over the years would have found at least a little brain! :P

  • It always been a nurse who did my bloods even in the hospital......Heels I don't know whats going on with me today.......I took the dogs to thhe park in the pouring rain today just to see if it would lift my mood. MMeet loads of other doggie people out doing the same as me buut maybe not for the same reason!!! I came home dod some irioning and now I'm stretched on the sofa and feeling much calmer......sorry if I offended anyone, wasn't intentional, just a bad day. Steroids are wworking well still but I will only be on them until Octobwr and thed then it will be Gold Injections or Ciclosporin. I asked on here if anyoone had heard of Ciclosporin but got no feed back. So I can't really commplain as I'm doing fairly well at present......hope you are too darlin. XXXX

  • Jean, even on your worst day you couldn't offend anyone so no more talking daft. I'm pleased ironing eased your mood, does the opposite for me & I end up with my feet & ankles even more swollen. I was going to use some of my PIP to have someone do it for me but just not got round to it so my h, who shouldn't be doing it either with his floating sternum, does it when I lie down in an afternoon. I'm not too bad generally thanks, nothing really to complain about for once!

    Maybe nobody on gold or cyclosporine was around when you asked for help, I hope your steroids continue to do their very best until you start whichever is decided on. x

  • Your a dote do you know that? XX

  • A dote???!!! ;)

  • A star, a wee darlin, a luv......just a really, really nice woman. You'll get used to my Irish ways eventually. X

  • Aw thanks Jean. Now I understand what it means I can return the complement & say you are too. x :)

  • Jean you could try on Vasculitis UK's HealthUnlocked regarding Ciclosporin - or failing that community the Lupus UK or Raynauds & Scleroderma communities. But I think it's most often used for Vasculitis so worth joining and asking there about this drug and people's experiences of it? Twitchy x

  • Thanks Twitchy, I'll have a look at that. The leaflet didn't really tell me a great deal about the drug but I have found out that it given to transplant patients as part of their anti-rejection regime. I think this is the treatment I'm going to choose as it only require weekly blood at my health centre. Hope your well luv. XX

  • Hey I'm fine Jeana (ma belle) - just settling into our new temporary home. And focusing on "temporary" thank goodness! X

  • Hi Jean, This link will take you to the Arthritis Research UK website, directly to the section about Ciclosporin. Hope it helps. x

    arthritisresearchuk.org/art...

  • Aren't 't you very good, thanks so much, I'll have a look now. X

  • Steroid injection is unlikely to affect muscle pain - and you would not have got it (the injection, I mean) if the consultant thought that you did NOT have inflammation.

    There are lots of alternative treatments - if you have inflammatory arthritis, it is worth trying to find one that not only helps but doesn't cause too many side effects.

    It sounds as if you have one of those consultations where communication did not flow well! Perhaps write a list before your next one and be persistent in going through all your questions and problems to feel more satisfied. And reflect back what you think he said too - what you heard as "only muscular" may have been "also muscular" pain, because of the way it was said? I often find that when I say "So what you are saying is...." a horrified look comes over the consultant's face and he explains all over again!

    Best of luck with finding better treatment.

  • Surely the phlebotomist should have had gloves on? They always do at my hospital. That's not good practice.

  • I agree that gloves and proper hygiene should have been in place, but it just occurs to me how much our standards have changed. When I got my braces (orthodontics) when I was 12, my orthodontist didn't wear gloves (nobody did) and he was missing a thumbnail! Clearly, it made a lasting impression. :) My family dentist now says he feels naked without a pair of gloves. But it makes me wonder if these glove wearers are still as attentive to handwashing or if they rely more on the gloves to protect themselves, and their patients...

  • Saw the nurse, she was extremely helpful, started methotrexate injections, slight nausea but no vomiting :)

  • Oh good. I really do become concerned when people consider not taking their meds. Sometimes a little understanding from their medical professionals is helpful but there's nothing quite like the experience of others to help you make an informed decision. Did you think to ask about the quantity of folic acid you're taking, or an antiemetic? I suppose it would be advisable to see how you go but I hope you do as well on the injections as I do. :)

  • Already prescribed anti-emetic whilst on the tablets and take folic acid 5mg 5 days a week :)

  • Ah, well let's hope changing to injections reduces or rids you of your side effects but do try to not focus on it. I'm convinced it can be psychosomatic sometimes, I've experienced it before so I'll have it again sort of thing. I had it when I changed my bisphosphonate until I concentrated on it not happening but unfortunately I got a different side effect & eventually stopped it, not for want of trying & persevering though! If you do still have problems do remember there are others to try. Maybe even ask if the one extra folic acid a week or if you could give folinic acid a try. Try to be positive & hopefully you'll do as well as me injections.

  • Feel free to rant!!! I think it is ok to cus as well.....just please don't give up. There are drugs that can help you. Don't let RA win.

    Take care

    Sue

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