Stopping the meds

After 'failing' methotrxate my rheumatologist tefetred me to the biologics clinic. I went for the appointment this week. He basically said theres nothing wrong with me other than being a lazy hypochondriac. So ive decided to stop taking all the meds, lefludamide and Hydroxychloroquin. If im not sick then im not taking these toxic drugs. The dr said i could stay on them 'for now' but ive stopped.

I know the half life is quite long but am i doing any damage by just stopping?

Im basically done with all the trips to the drs and the hospital and his attitude was that im really just a waste of time, so i'll take care of myself now.

Anyone else just stopped all the meds at once?

29 Replies

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  • Prednisalone is the drug that it is damgerous to stop abruptly if you've been on it for a long time at a reasonable dose. As far as I'm aware stopping the others doesn't cause a bad reaction,

    However...... if you do have RA then you could be opening yourself up to permanent joint damage. The doctor you saw was obviously a complete #%^*+, but stopping the drugs will do nothing to him/her but may harm you. I think any doctor who calls a patient a lazy hypochondriac should be reported - so maybe better to take your understandable anger out on a complaint about your treatment not on the drugs?

    Presumably the previous doctors you saw were convinced that you had an Inflammatory disease, otherwise they wouldn't have prescribed these drugs in the first place? I think you should go and discuss with your GP or seek another appointment with the doctor that referred you to the biologics clinic. You have been treated badly, but don't hurt yourself further by doing something that could be a bit rash.

  • Im really confused by what he said, 'you dont have RA but your fibromyalgia is the pain' i have never been diagnosed with fibromyalgia, he also said i have pain because i dont sleep but i dont sleep because of the pain! He basically contradicted everything i thought i knew but i have to wait for his report to come back before i can do anything and the nhs is notoriously slow.

    Im so confused and upset, and my tempestuous side is ,'stop the drugs now!!'

    I need to think clearly and listen to advice from people who have RA or similar,

    Many thanks for your reply

  • I should add, he is referring me elsewhere to 'sort out my sleep problem' and then i'll be 'fine' and 'perhaps you should give up bread, that'll help with your sleep'!!!!

  • I really feel for you. I have had similar experiences over the years including Dr's and nurses and I am sure at lot here will say the same. I wish they could understand the half of what we go through. We shouldn't have to battle for diagnosis and treatment as well.

    Please don't stop your meds because of this idiot.

    I once stopped my metho( Before I started Biologics) because I was being bullied by my manager at work and made to feel a hypochondriac. I convinced myself she was right and it was the drugs making me ill so if I stopped them I would be ok. Few weeks off I flared and it took me 6 months plus to get control back.

    See someone who can look after you as you deserve to be.

    Gentle hugs x

  • I am so angry .how dare they treat you like that .you must insist on seeing another doctor and complain xc

  • Don't do it! As HH says its you who will suffer, think very carefully before making this drastic decision. Wishing you all the very best. Xx

  • Thank you

  • I've come to the conclusion that most(?) of us will have at least one appointment, at some point, that will make us feel like turning our backs on the whole damn struggle.

    Unfortunately the disease isn't going to take the same line so we have to keep plodding on, looking for the best care, the best treatment.

    Did you see a different doctor at the biologics clinic, i.e. not the rheumatologist who referred you there? Just checking, for clarity. If so then there's a clear disconnect between your rheumy who says you have RA and feels you would benefit by biologics, and the doctor you saw at the clinic.

    Why not contact your rheumy? Or the helpline if there is one and if you know it to be staffed by good practitioners. If there's no phone option then a short letter, asap, should do it. The facts seem easy enough to lay out: you are confused, and understandably so. You were referred for treatment for RA but then told that you do not have RA. You were not aware of a diagnosis of fibromyalgia and cannot understand how such a diagnosis was arrived at. You were treated very dismissively.

    I would fire that off right now. Include nothing even remotely incriminating in terms of blaming or anger, just facts. On the face of it this situation is really pretty awful but it might well be resolved & you are probably going to have to be the one to start the ball rolling.

    Grrr! I think I know how you're feeling!

  • As my Mum would say, don't cut off your nose to spite your face. I really wouldn't just stop your meds, it's you who'll be in pain not him, once you've stopped reeling from being treated this way you'll realise, I hope anyway. Really, although the Biologics Nurse was so brutal your Rheumy referred you for a reason & that reason wasn't to be talked to like that. How very dare he! I would certainly request an emergency appointment, report back to your Rheumy & tell him word for word what you were 'rediagnosed' with & the opinion of the nurse & leave it there. You're not sick, you have a chronic disease. Meantime, please don't just stop your meds, you leave yourself open for the disease to do it's worst.

  • Sadly it was a 'consultant' that i saw, this level if dr should know better!!

    I have decided to email my RA nurses as suggested and see what they say

    Thank you for your thoughts

  • That makes his comments even more concerning, that he disagrees with a fellow Rheumatology Specialist's diagnosis & his recommendation that you have come to the end of what he can prescribe & considers you now have need to be assessed for anti-TNF's/Biologics in order to attempt to bring you under control. I would like to be a fly on the wall when your Rheumy's made aware of his hateful comments & the conversation which ensues.

    I hope now you've slept on it you have a clearer idea of the next step & taken from your responses here that it was a knee jerk reaction stopping your meds. Even if they're not doing an awful lot for you they'll be more help than nothing at all until you can see someone who has a humane approach to patients.

    Please keep posting & updating us. x

  • I agree with all of the above , please do not suddenly stop all your drugs , do get in contact with your rheumatologist and discuss all that was said . You would not be on the drugs you are on if you didn't need them .

  • Im drafting an email in my head, will send later to my RA nurses, my (typical) reaction has calmed a bit now! Im angry and confused still and considering a complaint but i need proper answers too

    Thank you

  • The right thing to do is take a deep breathe and not do things when you are angry . Take a day or two and then write the email . I hope you get some answers and an apology, best wishes xxx

  • Take a breath. Write everything that was said down.and the way it was said .talk to your GP.who will back you.and he will find out whats going on as he was the origional one who referred you.i really don.t understand.we go through so many stages .see so many people .then to be treated like this .my words are unprintable. I.m so angry. ring for a complaints form to be sent to you.don.t be fobbed off they don.t like complaints..and don.t leave anything out .keep calm .stress is no good ..don.t do anything drastic.hugs kathy.x

  • Keeo copies of everything you send .take names of people you talk to .hugs kathy xx

  • Before stopping the medications, I would seek a second opinion. Then I would report the doctor who said you were a lazy hypochondriac. NO one needs to be disrespected like that.

    You have been taking toxic meds for a reason. If it is discovered that you don't have RA, then that is a good thing. .....but if you have RA and you stop the meds you are in for a lot of pain and possible deformities...So write that letter as no one deserves to be disrespected. Shame on that doctor.

    All the best to you

    Sue

  • If you can manage to find yourself a functional healthy doctor and Chinese medicine doctor then they should be able to help wean you off the drugs in a safe manor. I know it can be dangerous just coming off meds, you need to wean yourself off them. Good luck with everything.

  • As always there is a wealth of compassion and sage advice here. You're definitely not alone and I completely get the wanting to stop everything and get off this merry go round of drugs, therapies, pain and symptoms. It's like working on a painting that you never finish. You have to take it off the wall and rework it every once in a while. Sometimes you're constantly working on it and sometimes you can go months and maybe years with a treatment plan that works great until one day for no good reason it no longer is effective and you find yourself back to square one. Autoimmune diseases are dynamic, unique for every individual and require time and patience to manage. Unfortunately pain tends to make us not so patient or willing to work the puzzle.

    The only thing I know to counter all of this is to be good to yourself while you sort all of this out. Figure out those little things that make you feel good or help you to feel better and do them. For some people it's a special pet to cuddle and a reason to get out of bed. Some people have an especially soft shirt or piece of clothing they like because it doesn't drive their skin crazy. Massage and acupuncture work for some. Aromatherapy works for others. A latte from a favorite coffee shop with a compassionate friend or relative. Anything to make this journey more comfortable and tolerable.

    There's also not enough that can be said for having a great medical team. It took me more than a decade to get to the point I am now where I can honestly say I am being managed well in all aspects of my healthcare. We all deserve this and I honestly hope and pray everyone can one day say the same.

    So in short please don't abruptly stop the prednisone without consulting a physician. When taking prednisone for a long time our adrenal glands stop making the hormone our bodys need and suddenly being without prednisone can be very painful in addition to making you feel very sick.

    I truly wish you all the best and hope you feel better soon ~

  • I can totally understand how it made you feel, but I wouldn't recommend stopping your meds. I was told twenty years ago by a locum at the Rheumatology Clinic that if I walked more I could fix my RA, when I left tbe room I welled up, I've never forgot it and she was totally wrong as trying to walk more just increased my pain.

    Have you ever seen this consultant before?

  • No although he started off saying ' i know you, we've met before' but i dont know him and ive never been to that clinic before, i dont even know his name

  • Very hard to express an opinion not really knowing your situation. How are you after " failing" on mtx? When were you diagnosed with RA? What do your inflammation markers tell you? Do you have painful swollen joints? Have the two meds you mentioned that you are still on, made a difference? What facts was the doc rely on when making his assumption that you did not have Ra?

  • Also, if indeed you do have fibromyalgia (and as you probably know that is not uncommon alongside RA and other forms of inflammatory arthritis) then that is not something to be dismissed either and certainly does not constitute hypochondria, far from it! It's a serious and difficult condition that requires careful thought and careful treatment.

  • You start by saying your Rheumatologist referred you to the biologics clinic. Why would he do that if you DON'T have RA?? You must have had a diagnosis of inflammatory arthritis at the start, surely? I'm confused as to who it actually was that said to you"basically a lazy hypochondriac" ? Someone at the bio clinic? Anyway as all the others have said, you're the only one who can get the answers - do you, or do you not, actually have RA? That's for your Rheumatologist to address. Ask for another appointment with him, OR, ask to be referred to a different Rheumatologist for a second opinion. But don't just stop all your medication without at least talking to your GP. Good luck in sorting out all of this!

  • So sorry to read this and so bluming cross! Report this hypocrite to the BMA no messing about. Report to hospital.

    Your rhumetologist clearly doesn't think "your a LAZY hypochondriac"- as they wouldn't have refferd you in the first place? Further, have you notified them via their secretary, so they don't reffer anyone else to this vicious narcicist?

    NEVER NEVER just stop meds- you could really send yourself into immediate medical crisis and how is that going to help you? Your family? It's like saying that piece of filth has won- don't give that creature the satisfaction.

    You fight back instead. You will feel better for getting a 'second' oppion' for a start.

    Disgusted.

    Hx

  • Please don't get down I have had very much similar to you. With no medication for so long and struggling to keep it under control I have ended up on biological medication. You can always move to another GP who will care about you

    My story of a doctor was. After going to my go for nearly 3 years and having had Carole tunnel surgery in both hands, I was sat down by my GP and told you do it have RD, he then promptly sent me to pain management. They talked to me told me I must get off pain killers. My husband had enough of me crying and off we went to a private doctor, 2 minutes into my diagnosis he said Mrs Bolton you have RD and it's pretty well developed.

    I could not wait to make my appointment to the GP. I told him I have RA as diagnosed by a specialist and also informed he that he had tried to get me off pain killers and that he had let me down. I received a written apology and with that left and moved to another surgery.

  • That's the whole of the point in not stopping meds,it's very dangerous. Good for you,you had the courage of your conviction to see this through. Yes lesson 101, if in doubt Get A SECOND OPINION FROM ELSEWHERE.X

  • Not a good idea. As the ra will attack your joints while you are not taking the meds. Go back to your original rheumatology Dr or even your go and tell them what this awful person has said. Who ever diagnosed Ra originally isnt going to be happy with him. Good luck but dont let this awful person stop you taking meds you may need.

  • Haven't had the courage but after 6 months on sulfaSSZ [ a milder DMARD} at 2000 mg per day and foul taste etc have dropt to 1000 per dayand feel better. havnt told them yet tho

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