Feel miserable and alone :(

Hi all, haven't been on for a while but need you. Saw my Rheumy yesterday and needed to talk quite a few issues with him. Unfortunately he was not English and I am not sure he fully understood me. All I kept getting as answers was it is the disease, dahhhh I know that I live with it, most of the time in isolation and people really do not want to know how you are when they ask so have learnt to say I'm ok. But, you all know that anyway. Ok so the methotrexate injections (have changed from tablets) makes my life miserable for 3/4 days a week, brain foggy and won't function, not able to get a job finished, stomach blows up, feel sick, feel low etc etc etc. Asked if I could reduce the dosage a smidge to see if it would make a difference, feel a bit more normal, he just didn't understand. I know you guys don't have the answers just feel a bit alone :(

27 Replies

oldestnewest
  • What a crazy situation. You'd think if the NHS were employing Specialists from overseas they'd ensure they could at least communicate with us. I take it you explained exactly as you've asked here & couldn't get an acceptable response? I inject MTX & at times I get brain fog but unfortunately I think it is the disease as your Rheumy said. You don't say how many folic acid tablets you take but my side effects have lessened since being on 5mg every day except MTX day. Do you have a contact number of a Rheumy nurse you could have a word with? If you do take them 6 days is it possible it's another of your meds that's contraindicating with the MTX?

  • Hi Nomoreheels, thank you for replying, I take 5mg folic acid 6 days a week and also take 400mg hyroxychloroquine daily, then inject twice on a monday with 25mg methotrexate. I do have a nurse specialist but I am the sort of person who finds it difficult to make a fuss when it comes to me ( I fight tooth and nail for the family). You see its the drugs that are making feel awful now not the inflammation!

  • I'm sure you know but that's quite a high dose of MTX. I take it you mean you split the dose of 25mg when you inject? I guess as it's such a high dose the severity of side effects will be increased so really feel for you. It could be that it's not the drug for you & a change is necessary or a simple lowering of the dose. HCQ & MTX didn't work as double therapy for me but MTX as my only DMARD works successfully but surely your Rheumy should have considered if a change in meds was the right way forward. What I'm wondering is if you think he didn't fully understand you how did he determine your DAS score when examining you? Not a good consultation at all & think the best thing you can do is contact your Rheumy nurse tomorrow & fight for you in this instance. You're not making a fuss, far from it, you need help & you didn't get it.

    I would be surprised if you have a negative response if she's worked alongside him & has also experienced difficulty communicating with him.

    Good luck & let us know how you get on if you speak to her.

    just had another thought, reading allanah's reply. My Rheumy always has a Rheumy nurse sit in on the consultation, even though my h comes with me. Was there not a nurse in the room at yours?

  • sorry you are not feeling too good at the moment its so disappointing when you wait for your appointments and come away feeling deflated ,all we need is someone to understand and guide us through these trying conditions. hope you get better support in future.

  • thank you junebee x

  • Hi H, phone the unit and explain what you have said here! You are in pain, didn't understand the doctor and don't feel as though the consultation was useful. Do please call the rhemy nurses and tell them and next appointment ask for an escort, many people do xxx

  • I reckon this is a very good course of action honeybee. It's a great thing being able to share on here, but you know that what you experienced was real and that it was not good enough so if you can please, please give the department a ring. You've expressed yourself clearly and directly and we all get it, so the rheumy nurses will very likely understand too.

  • Hi postle2, I do appreciate everybody's replies and do not feel alone. I will take your advice and ring the rheumy nurse, thank you :)

  • Hi allana, I did not now you could have an escort, my husband tries to come with me but cannot always make it. On this occasion I really wish he had been there. Its just that we take the drugs to help us feel better but am so fed up feeling rubbish. Will ring the rheumy nurse, thank you so much for your support :)

  • It's awful never mind not getting the specialist support you need, give the nurses a ring? Xxxx let us know what they say if you want, often the nurse will go in with you if you ask and just say to her I will look at you if I don't understand, she will automatically clarify then x

  • Firstly I'm sorry your consultation was such a disappointment and I agree with others that this is not how it should be.

    However I should also say that my rheumy speaks the same language as me technically and we come from similar cultures too - but emotionally he's really on a different planet to mine :-(

    But what ever the reason I hate feeling misunderstood and isolated after a consultation and I really sympathise. This has happened to me many times and I always curse myself for expecting too much and investing so much energy preparing - only to feel it has all been a waste of time as he doles out sarcasm and seems to enjoy making me feel small.

  • Thank you Twitchytoes, it would be different, I am sure, if our consultants suffered with RA. I feel it was a tick box situation without any understanding. Anyway lesson learned, try and toughen up (even more). Than you goodness we have each other on the site ;0)

  • Just to agree with the previous posts. This is obviously unacceptable, you have the right to a meaningful consultation with a constructive outcome.

    Do you have a good relationship with your gp? Many years ago, I had a similar tick box consultation for a different illness, and came away very distressed. I went to see my gp and told him exactly what had happened. He made a few phone calls, and I was able to see someone else reasonably soon

    I know that's not always possible, and I do have an exceptionally good gp, but it may be worth trying!

    I do hope you can find some way round this situation, this wretched disease is bad enough, without having to fight for decent treatment!

    Best wishes. M x

  • I was going to say the same. You can change the consultant / ask to see someone else. Maybe do a bit of searching for the other drs in your hospital. Not a good situation

  • Hello cathie, I did have a nice consultant, you felt he knew his stuff and what was best for you, he is now reducing his hours and I suspect only receiving private patients :( I am at the Royal Mineral Hospital for Rheumatoid Diseases so did think it was going to be the best since sliced bread! x

  • Is that in Bath? If so my mother went there in the 1950s and they gave her spa treatments, gold injections and rest plasters! She was there for a couple of months.

  • Yes it is. It is a beautiful hospital.

  • My mum used to skive and go to a patisserie across the road. She also found a hairdressers while she was at it!

  • Not sure the patisserie is there anymore, will have a good look when I am there next. Hospital was built in 1739..amazing!

  • Thank you hatshpsut , I am at the docs next week for blood test so will chat with them then. It is so nice to have all you lovely people out there, it makes such a difference :) x

  • Hi I just wanted to say I know exactly what you mean by those side effects. In fact when I was on the mtx inj I ended up stopping it when I knew my review was due and telling the rheumy I couldn't tolerate it any longer. There's only so many times I could put up with being told that I should have less side effects because the injection was kinder on your system than tablets. Taking meds should be an agreement between you and the rheumy and if you're not happy then something has to change. I was also wondering if you took a stomach protector? When I was on hydroxy it made my stomach so sore and bloated I couldn't do up my clothes. I hope you get some results from speaking to the rheumy nurse. Good luck x

  • Hi Giggle, I do not take a stomach protector, maybe I should if there is something that is herbal as I don't think I could take anymore drugs.

    Thank your reply :) x

  • I felt that I really had to insist that I couldn't cope with the side effects of MTX at that high dose.

    I said that life was not worth living (as I felt at the time).

    Please don't give up - there are other medications out there. It is laziness, or lack of knowledge, on the part of the doctor not to explore the options with you. If you saw the registrar, then write to the consultant (as I did) and say that it was not a satisfactory consultation and you want to see him/her for a decision.

  • Hello oldtimer, I do actually dread mondays coming round. I will find out who I saw as I am not sure if he was a registrar or consultant I do know I do not want to see him again!

    Thanks for your support :)

  • I'd lay odds on it was a Registrar honeybee. Thought that when I read your post but as you referred to him as your Rheumy I thought it was a new one you had. I've now seen your reply to Cathie so would think he's either training up or may be a Specialist Registrar. I had a right to do with an SpR at my last but one appointment where he took me off etoricoxib & steriods because he felt I was controlled. Well a few weeks later I certainly wasn't! Registrars are required to be guided by their Specialist & if they're unsure of anything should refer their immediate superior. Mine didn't & perhaps that's what's happened with you. My Rheumy wasn't happy at all that her Registrar did as he did without referring to her for advice. Needless to say after the necessary checks my meds were reinstated & my RD is back to where it was. I would strongly recommend you find out who it was because if I hadn't questioned why he was taking me off meds & thought to jot down his name my Rheumy wouldn't have been able to question his decision directly.

    Hope you get somewhere & back on the right track.

  • Thanks I will let you know when I have found out :)

  • I'm glad your not feeling so alone now honeybee13.

    No one wants to have such drug side effects that are just as bad (but different) as the full on disease.

    Trying to live life in a brain fog is not acceptable. I hope you get the answers and also get some relief.

You may also like...