Left hospital in tears & got nowhere :(

Hi

I don't know who else to talk too I've just come back from my consultant appointment which I've waited for and go nowhere if anything feel worse.

So saw a young lady think she's a registrar of my consultant explained that got no better if anything worse. She remembers seeing me in December and she said I understand why you don't want to go on methotrexate at my age it's the right thing to do. So she said I'll go and see if my consultant cam offer another drug to try.

After a 15min wait they both came in & he went on to say I have to stop the sulphazadine due to clearly not doing anything & I have to go on methotrexate. I said I don't want too as my husband & I want a baby he said well you have no choice it's that or nothing.

I took my mum along today for support as I have felt previously bullied in these appointments that there's nothing they can do to help.

My mum was asking questions about the other drugs on the market and he said before any other drugs are considered you have to go on methotrexate. He mentioned the cost of these drugs and that's why I can't go on them. He said there's a law about it which I asked to see, he said I could find it online.

By this point I'm crying as I'm so fed up of not getting anywhere, feeling like crap and that I'm feeling bullied into taking this drug. He was so unpersonal and unhelpful it was his way or no way clearly. The registrar was staying quiet which I get as she wouldn't say what she thought in front of him but its so annoying that she said I'm in the right but he's saying the opposite.

Ended up saying I want a second opinion and a referral to another hospital. I left the room sobbing as 13 weeks after a flare up I'm still nowhere to getting better. As leaving a nurse saw us and took us into a side room to ask what was up, we explained and they as 2 of them ended up talking to us that I feel bullied & have no options about getting better or about my future. She told me to make a complaint to PALS which I will be doing but also that there are other drugs out there that people take before and instead of methotrexate.

So home now no further still in pain, now feeling like its time to give up as I can't be bothered anymore to try and get better. I was hoping at my age 27 that I would get the help & treatment I need but nope :(

So after my rant I apologise can anyone tell me have they took another drug after their first try mine being sulphazadine that is not methotrexate?

I've now got to wait to get a referral to another hospital another 6 to 10 week wait I guess :(

What a crap day!

xx

50 Replies

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  • You poor thing, what a horrible experience. I'm pleased that some people were kind to you and suggested some ways forward. Definitely take both the complaint route and the second opinion route.

    Also worth researching into all the available drugs and the NICE guidelines for prescribing them, so that you go along with some information to hand. Also it may be worth looking at your Trust's information about the doctors available to find someone who has an interest in pregnancy and RA if such a person is available.

    Take care.

    Dotty xxx

  • I am in the process of writing a letter to PALs to complain. I'm also on the hunt for more information so when I do see a new consultant I have as much info as I can have. Thanks for your support xx

  • Hey there, I'm so sorry to hear about your horrible hospital appointment! I understand just a little bit how you feel as I've had one appointment (where I got joint injections) with a doctor (not my usual consultant) who clearly hadn't read my file, told me that I was exagerating and that my joints "didn't look so bad". At that point, I had massive fluid built up in both my knees and wasn't able to bend them without pain which made walking or even just sitting down almolst impossible. There was a really lovely nurse in there as well though and when I started to cry she went and got my usual consultant who told the other doctor to drain the fluid and inject the knees. I clearly remember how horrible I felt because that guy didn't seem to care, hadn't read my notes and treated me like some hysterical hypochondriac.

    I'm not sure how much I can help you with the drug choices. As far as I know, Hydroxychloroquine is an option you can try before MTX and you can get poregnant while being on it. Have you tried that one before? I was on it for a while but it didn't do anything for me so I stopped eventually.

    I'm sorry if I can't be of more help but I just wanted to sympathise and tell you I'm thinking of you and wishing you strength to get through this situation!! I'm about the same age as you and I find it really hard to imagine sometimes that this illness and the meds will always be a part of my life.

    Hugs, Christine Xxxxxxx

  • Doesn't it just make you feel worse when they haven't read your file and don't understand grrr. Nurses can be a helpful as I found it's just a shame not all consultants are.

    I mentioned that drug as other people have told me but he said no MTX your only option, he also said no to other drugs. I've only ever taken Sulphazadine.

    Thanks for all your support xx

  • Sorry to hear about you hard time at hospital, I am also being bullied into taking mxt but I suffered bad side effects in the past with it . Before I started Humria, I tried sufa 1st then Hydroxychloroquine and Leflunomide as well as mxt. Also more recently Ciclosporin. I don,t know what the side effects would be though with regard to starting a family as I had already had my children before RA developed but there are other drugs out there. Look on the NRAS website for information on Drmads. Good luck and don,t give in, I have taken my husband with me the last couple of times as I was being bulllied too, I even had the doctor ringing me at home to change my mind.

  • I hate the fact we get bullied into taking drugs, I just don't feel it's right at all. He won't even let me go on Hydroxychloroquine and Leflunomide as he said your only option is MTX, I was hoping to try one of those too.

    I will be looking for more info on medication as no one in the hospital seems to want to offer advice. I will continue to take someone with me too as worried I'll be bullied into taking drugs I don't want.

    Thanks for your support xxx

  • Oh dear that's really horrible for you I'm so sorry. I would be very unwilling to have taken MTX at your age and stage too - some doctors won't let people on this site take this drug if they are of childbearing age - even if they have stressed that they don't want children yet. He is obviously a known bully if the nurses and registrar were quietly sympathetic and one advised you to write to Pals. As others have said there are other drug options for people in your situation - you are more of a priority for anti tnfs surely than those of us who are older and have had families and careers? I advise you to call the NRAS helpline who will be most likely to help and make suggestions to you re alternative drugs that are okay for conceiving on.

    And well done for not just relenting and for at least trying to stick up for yourself. I had a bully of a GP once when I was your age and he was appalling. When I think of some of the things he said and did I still get absolutely furious! Tilda x

  • I felt like he didn't care if I wanted children I just didn't expect the attitude he had for me very disappointing and frustrating. I hadn't thought about calling and I will do now thanks so much for telling me Tilda xx

  • I am so saddened to hear the poor treatment you have had i really am. You are right to go to pals and speak to them about your compaints and stress that you don't how they made you feel. You shouldn't go to the hospital to get treated like that. Speak to your gp and ask them what they can give until you see your next consultant as i am sure your gp will be able to help.

    As has been said there are a lot of options out there for you. Certainly look up on the internet and nras. YOu can ring the lovely ladies at nras they are very good and they will very helpful.

    I hope this is of some use to you. Take care and i hope you soon get some results.xxx

  • I will certainty ensure they know how he made me feel it still upsets me now a few days on. I will be ringing and lets hope I get somewhere soon xx

  • So sorry your appointment has left you so stressed and upset. I am new to everything so cannot talk about medications at all. However, you really must complain to Pals....some, not all, doctors seem to have little idea at all how to deal with patients in their care and some really don't give patients credit for their own knowledge about their own bodies and symptoms. Nras helpline would be useful to you I have no doubt. Meantime, don't give up on yourself dear lady. Gentle hugs to you.

    Take care now.

  • Thanks for your support xx

  • What a horrible experience! Doctors like that don't deserve their jobs.... As well as complaining to the hospital PALS (contact details should be on the hospitals's website) I would also go to your GP and ask to be referred elsewhere. You need to trust your consultant, and this one is obviously not good for you.

    There are other drugs you can try, that are often used to start with and aren't the expensive "biologics". NRAS has good information you can look at (www.nras.org.uk), but if you want to get pregnant then your options are more limited as Leflunomide is the same as methotrexate in that you can't take it before/ during pregnancy. Some like hydroxychloroquine are possible, tho not as effective as methotrexate. Unfortunately the newer biologic drugs are very expensive so the NHS only allows these to be prescribed to people who have tried and failed on the things like methotrexate. If you want to look at these regulations then google "NICE guidelines for rheumatoid arthritis". But good luck, and don't give up trying to find a drug that works for you.

    Polly

  • Unfortunately it was a horrible experience and not one I want to happen again. I have already been to GP as I wasn't happy with the my care and this just confirmed it. I have a referral letter it's just deciding where to go now.

    I will certainly be going to view those guidelines thanks for that Polly much appreciated it.

    xx

  • Sorry to hear that you have not had a very good experience with your medical team at the hospital. Whilst I agree that you should make a complaint against the bullying tactics used, can I play devil advocate here for a while and give you some areas to think about.

    First and foremost - Preganancy, Are you and your husband in the process of trying for a baby or planning to do within the next 18 months?

    Demards - Two of which are Sulzaphine and MTX, I know of one other Leflunomide, These three I have taken but I believe there are others as well. These drugs are less expensive

    Ant-tnf or Biologics another name for the ant-tnf, these drugs are expensive.

    To get your local PCT to fund the anti-tnf you have had to fail on at least three of the demards before your rhumy team are allowed to put you forward to receive a biologic. I know this because this was what I have gone through recently.

    Returning to the question of pregnancy, if you are not going to try for a baby within the next 18 months, do you not want to try the route suggested by the team but laying the time down for when you have to come off the drugs in readiness to prepare your body for carrying a baby. It will help you to have relief of your RA and a better quality of life at the moment, plus proving what you can or cannot have on the Demards, (we don't all agree on which are best for us) to help your team after you have had a baby to decide which would be the best course of treatment then. When you have had your baby you will be so tired that you don't want to be in pain through RA as well.

    If you are plainning a baby within the next 18 months then maybe it may not be a good idea to take these meds, but I am not medically trained. I do know that there are others here that are going through pregnancy and I truly hope that they contact you here or through private message. Why don't you type pregnancy in to the search field and see what comes up and speak to them and see what they have gone through to help you reach your decision.

    I hope you don't take this message as patronising as I don't mean that, I just thought you may need some other areas to help you. Either way I just wish you all the best and I hope that your future visits are better than what you have had today. Take care and keep us posted. xxx

  • Thanks for your post, we've been married a year and wanted to start a family this year, but I know I have to get better first to be able to deal with pregnancy and a child. However I also worry if we leave it much longer will I continue to get worse as I've been gradually worsening over the last few years having had RA for 9.5yrs.

    I asked to try Leflunomide but said I can't take this until I've tried MTX so stuck.

    Hoping to get a second opinion from another consultant fingers crossed I get somewhere soon thanks xx

  • I do agree with Georje here although I'm confused because of people on here saying that consultants won't let them take MTX or Leflunomide if the are of child bearing age. If the anti tnfs were worry free then I think that people if your age and stage should qualify without having to go through the DMARD hurdles the rest of us have to first but a) it doesn't work like that and b) they are also an unknown quantity re conception and pregnancy so I think Georje's point is right - you need to decide when you want to plan a child, bearing in mind that not all pregnancies provide remission for RA and ideally you want to have the disease better controlled prior to conceiving. But either way it is completely wrong that this doctor didn't talk this through with you and help you get a clearer idea of your options. I do think a letter to PALS is completely in order and wish you much luck whatever you decide. Steroids and Hydroxichloraquine are both options that you might consider if you are trying to conceive now. Tilda xx

  • Tilda I agree and I wish that was the way but looks like from my current consultant I have to try MTX before I can take any other drugs whatever they cost :(

    Thanks for your advice xx

  • Definitely make a complaint to PALS, but also try and get PALS to help you find out what your options really are. I can't imagine, with the big list of DMARDs available, that you really have to take MTX. You were definitely bullied there, and that shouldn't happen.

    Also definitely get your GP to organise a second opinion at another hospital. You have a right to that, and before you make such a big decision (to put off childbearing) you should make sure you are given all the options.

    If you feel like it, also try and read up on the NICE criteria for anti-tnfs to make sure for yourself that you know what you would need to do to qualify for them.

  • Thanks for the advice I will be reading up lots and yes I'm organizing a 2nd opinion and to move hospitals now xx

  • I am so sorry about the way you have been treated I think it is disgusting If you could find a good consultant or one recomended I think it works in most areas freedom of choice I forget what it is called fully you can pick to go and see them at a private hospital but on the NHS thats what I did for my keyhole surgery I will try and check what it is called fully tomorrow when I am not doped up you get the full private treatment but your GP might know it would be worth asking them but I will get back when I find out full details its a shame you are not in my area as my consultant is great it is easier to get to him than my GP and he is very busy covering at least 4 hospitals

    lizz

  • I actually found this consultant via going private to get diagnosed and he was brilliant then but think he's too old or he doesn't care anymore.

    Finding a good consultant is my mission now one who understands being younger with RA and wants children :)

    Thanks Lizz xx

  • If i hadnt checked your location i would swear you have the same consultant as me......a useless one!!

    Ive tried mtx and leflunomide and now on hydroxy.

    I would definately agree with a letter to Pals. I do feel for you especially being so young and wanting children.

    Take care & i hope you get some help soon.

    Jo

    Xxxxx

  • he he crap isn't it Jo, they shouldn't be able to treat people like they do :(

    Wanting children is something my husband & I really want but it's worrying me now that I won't get the chance grrr to RA.

    xxx

  • This is horrible and I'm sorry you had to go through it. You say that you've asked to go to another hospital, I'd suggest you find out if there are doctors with a good reputation nearby. It's possible to do this discreetly on this forum and people can always message you with details. Good luck, I want to hear how you get on...

  • Yes I'm trying to find out doctors names from people in other hospitals now I currently have 2 and want to get details of another so I will try the private messaging good suggestion thanks xx

  • Oh yes and thank goodness for kind nurses

  • i feel for you yes been their done that some of them cant be bothered

  • Yep not good enough is it.

  • I feel so sorry about your treatment. If you look on the NHS website it tells you how to complain, PALS is first line but you can also make an official complaint to the Chief executive of the trust who has to answer you and if in this letter you specifically bullet point, why is this the best treatment for someone trying to get pregnant and also what alternative treatments could I have, they should answer you.

    If you r not able or indeed want to take dmards whilst you r trying then I think you have to balance further deterioration of your own joint and body health depending on how active your inflammation is. I say this as my family have severe joint restrictions as they hadn't invented treatments then versus your worries around prenatal care. But you then should get good pain relief too and it doesn't sound as though your is adequate.

    You can telephone midwifery departments and maybe they can give you advice I am sure others have made this decision or maybe your GP could send you to talk to a obstetrician about preconception care, I know they are delighted to do this rather than have pregnancy problems and it would give you peace of mind to have the facts?

    I know when I was trying for my first baby I was so upset and emotional a lot of the time as I had ten years and ivf to get him, and I was constantly dieting, taking the best food and everything I was told to conceive and would have hated having RA in the mix and to make decisions that you are making. Hold tight to your hubby, share your thoughts and get lots of advice not just a useless Rheumies!! Don't forget the Nras helpline are brilliant for listening when u need them. . Lots of luck and let us know what you decide, hugs Axx

  • OK I may try that too A thanks as the treatment I got I don't want anyone else to receive but also I would actually like to try and get better sometime soon.

    I've had RA for 9.5yrs and it's been pretty much in control however I know it is gradually getting worse but I've had my first big flare up for years and no one seems to want to help. What I'm worrying about is it a flare up or is this just me now as it's not settled in 13 weeks, but I'm still on same meds so who knows.

    Hadn't thought of speaking to midwifey departments to ask for advice thanks may just do that.

    I want to get better of course as I don't want to be ill when pregnant or with a baby but I'm worried will I continue to get worse if so maybe I have to do this now.

    Thanks for your advice & support A xx

  • You can taken hydroxy, and possibly gold injections during pregnancy if closely supervised they are however not licensed for use in pregnancy this applies to most drugs in pregnancy, the decision is between you and your consultant, you could always get a 2nd opinion you will not be eligible for anti tnf at this stage and eligibilty means you have to have tried and failed on at least two other dmards one of which must be methotrexate.

    You also have to get your self well enough for a baby.. getting pregnant on methotrexate is unfortunately a Very Big No.. .

  • I asked him about both of those drugs he said I can't go on hydroxy until i've taken MTX it's the law and gold injections haven't been used for 15yrs.

    I'm leaving my current consultant as I will not be spoken too like he did so I'm off to find a new one grrr not what I wanted to do but can't go back to him now, felt bullied.

    Thanks Summer xx

  • I USED gold until this january!¬¬ it is still used

  • That's what I thought from reading on here.

  • Hi am new to this site but what i will say is it's great , everyone has a great knowledge of RA, and the drugs used, helpful groups etc, What i will also say is i have complained to pals and the chief exsecutive of the hosp though they were sympathetic to me but of not much help !! What i did do was ask never to see the bulling scarastic consultant ever again but to see a different consultant at the same clinic, hosp and have never looked back !!! maybe that's something else you could think about and a lot quicker than waiting for another hosp. (sorry for the spelling errors was never may strong point)

    Ppl have given me links to sites and i have down loaded and read , so now feel very armed with info for my next appiontment.

    From reading every ones comments on site alone just gives me strength to carry on each day.

    I too feel am young with this RA (45) lol but not as young as you and am not planning anymore children as 3 is enough.

    I am going through the process for TNF drug which i believe has excellent results reading all the research documentation . but the condition is you must have tried MTX sadly !!

    I was sorry to hear you are going through a rough time as i only know to well how that feels. and as recently as last week was beginning to lose the will to carry on but have been thrown a life line.

    I do hope you are able to arm yourself with all this info and get it sorted good luck, X

  • Hi Sarah,

    Unfortunately the other consultant where I go I've heard is just as bad so I've got to the point in having to move hospitals. Luckily my GP is helping after seeing him and has already in the process of referring me to a different hospital. If I've waited 13 weeks to try & get better I'm sure I can wait a little longer for good help & advice.

    Yes I feel like that too, it's so good to come on here and speak to people who are going through similar things as it's hard for others to understand.

    Yes the anti tnf does sound brill as all the people i've spoken to have said it's helped but as you've said you have to have been on MTX for at least 6 months my consultant told me before any other drugs are tried so I'm screwed.

    Yes losing the will to live is a constant at the mo but I will keep going to get the help I need somehow.

    Thanks for your support Sarah xx

  • sorry to hear that , lets hope the new hosp/ consultant will help. At least the sun was shinning for today anyway. hope you feel better soon as its a constant battle everyday. Take care. x

  • Yeah just got to wait to April/May for an appointment so got to put up with it :) xx

  • Hi Pinkjen

    I am so sorry to hear of your awful experiences with your consultant. Of course it isn't easy balancing trying to get pregnant with trying to get your RA under control, but from what you've said it sounds like the consultant is very much focusing on getting the RA under control and is completely unsympathetic to your natural desire to start a family. You have already received a lot of useful comments on here, and I don't want to repeat what everyone has said, but I can give you some links for more information to read, which may be useful to you.

    Firstly, if you are considering seeing a different consultant, either for a 2nd opinion or to change consultants all together (usually this would be at a different hospital), the following NHS web page explains how you go about this:

    nhs.uk/chq/Pages/910.aspx?C...

    Secondly, in terms of getting a better understanding of which drugs are safe to take during pregnancy, this article on our website may help:

    nras.org.uk/about_rheumatoi...

    The NICE guidelines have been mentioned a lot with regards to the 'more expensive drugs'. These drugs are called 'biologics' and as people have said, you do need to have tried MTX before you can start on these drugs (your disease would also need to be deemed 'active' enough for you to meet the other part of the criteria). The following link takes you to a summary of these guidelines (see page 4):

    nice.org.uk/nicemedia/live/...

    Lastly, we have a nice case study about an RA patient's journey to becoming a mother, which may be nice for you to read:

    nras.org.uk/about_rheumatoi...

    I hope this information helps. As others have said, you are always welcome to call our helpline. We are available Mon-Fri 9.30-4.30 on 0800 298 7650.

    Kind regards

    Victoria

    (NRAS Helpline)

  • Thanks for the links Victoria that's really nice of you I will have a read xx

  • thinking about it again, one of the criteria for being allowed to try the biologics is that you have tried at least 2 of the traditional DMARDS including Methotrexate UNLESS contraindicated. Well since methotrexate is contraindicated in pregnancy I think you could argue quite forcefully that that should also apply to people trying to conceive......maybe say that it is against your principles to use contraception so you need drugs that are safe in pregnancy? But as others have said, think about this carefully as the biologics are too new to have much of a track record in pregnancy. Px

  • I think there must be another drug I can take excluding MTX to sort myself out and try to get better so we can try for a baby. We'll get there somehow thanks xx

  • I was on hydroxy before mtxate so i dint know what hes talking about

    Xx

  • I was hoping I could try that but said couldn't had to go on mtx :(

  • I was hoping I could try that but said couldn't had to go on mtx :(

  • I was hoping I could try that but said couldn't had to go on mtx :(

  • Methotrexate is completely contraindicated for those who wish to get pregnant. Maybe that isn't an issue for you, but since it does concern this person and there are other drugs she could try then my personal opinion is that the consultant should have tried to accommodate her wishes, and certainly not treated her concerns with disdain. The era when doctors could behave like mini-dictators has long gone, and there are too many instances of bad medical practice to have blind faith in the medical establishment anymore. You've obviously been lucky in your experiences, but have empathy for those who haven't had similar experiences to you.

  • Thinking of you pinkjen, positive thoughts and gentle hug .

  • hi Pinkjen

    I have only just read your post, I am so sorry what you are going through. My first rheumy tried to bully me into taking methotrexate 14 years ago, aged 30, I just didn't want to take it. It's so important to have a good relationship with your specialist, you are doing the right thing changing. Azathioprine is safe to take during pregnancy, don't know why this has not been offered to you. Hope you can find a way forward.

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