Hello

Said I would update you on visit to consultant so here it is.

He's decided to put me back on 15mg injections of MTX only. He's raised my folic acid from one a week to seven, did ask about taking it on MTX day and was told it doesn't make any difference. Was told to keep taking the steroids. Wasn't very happy with the consultation at all. I am sure that he thinks that I am some sort of neurotic woman. My mistake was to say that I have a fertile imagination, should of said a deep thinker or something along them lines.

Examples

I've been having pains in my chest since end of May last year. Long, long story so I won't bore you all with the details. When I saw him last September he said it was muscular. I then googled costochondritis after reading about it on here, I have had/got all the symptoms. Two GP's that I have seen think that it's this. The second time I say him Jan this year, he said it wasn't costo...... because my last chest x ray didn't show any inflammation, I quickly told him that I didn't think that x rays showed inflammation, which he agreed and after giving me a long description of what it was told me that he would be able to see the inflammation just by looking at me. He then said it was costo....... pain syndrome. I mentioned it to him again last week, telling him I was piggy in the middle, GP's telling me one thing, him telling me another, when I was the one in pain. He then said it was stress related. So according to him I've been stressed for a whole year! I think not!!!! He did say that he would write to my GP about it. I know that if it was anything nasty by now something would of happened, but I just want to know what it is.

I have had off and on stiffness in my jaw, that was what made me first go to the GP when all my RA symptoms started. I could think of things that may of caused the pain in my shoulder, knee, neck, fingers etc. but when I couldn't open my mouth one day I realised that things were getting a little silly. I've had this problem on and off since being diagnosed, learnt to live with it. I often get really bad and I mean bad pains around the jaw area when I put food in my mouth. Sometimes a lump appears on the jaw line that is very tender to touch. The lump can be there for a few days. The weekend before I saw him I awoke on the Sunday with a very tender swelling on the right of my jaw, just under my ear. I could hardly open my mouth, it did wear off a few hours later, but the same thing happened the following morning, Tuesday the swelling had gone down and by the time I saw him it had gone completely. Also, nearly everytime I eat I get a cracking sound in that area, doesn't hurt but it's annoying. So I decided to tell him, he thinks it's stress and nothing to do with RA. It's very rare to get RA in your jaw apparently. It just happened that a few days later I had a dental appointment, told the dentist everything, he examined my jaw, told me that he didn't think there was any damage, thought that it may be a muscle spasm that's stopping me from opening my mouth (can accept that), the pain that I get when I eat is down to my saliva glands and he is going to refer me to the hospital to see a consultant in the (don't know how you spell this) Maxifolxxxxxx the people that deal with teeth and faces department.

I've been having problems sleeping for a long time. Sometimes I go to bed and can't sleep, sometimes I go to sleep and keep waking up and just can't get back to sleep. I've put all of this down to taking SLZ, told him but he say's that's stress related and nothing to do with the drug. I've since looked at the sided affects and it does say sleep disruption.

I'm getting to the point that I feel that I won't feel comfortable talking to him about anything without him thinking.... Here she goes again, imagination running riot.

I'm a little worried that once they get the dose of MTX that my liver can tollerate and then they start to introduce SLZ my liver won't be able to cope with it and I will be back to square one again. Before the raised ALT I was taking 6 SLZ and 20mg MTX and my RA was under control. Plus the fact that while I am taking steroids how will they know that the drugs are controlling my RA when steroids will be reducing my inflammation and working wonders with the pain. I have just started reducing my steroids (under advice from specialist nurse) to try to avoid this problem.

So there you are, the second chapter in my tale of woe.

Paula x

Julia and Jackie thank you taking the time to reply.

Julia it was lovely meeting you and Karen has commented on what a lovely lady you are. I don't think you got my phone number but Lorna did, so do try to get it so we can phone each other. I'm sure I gave my landline number to her, I'm on pay as you go with my mobile, but we get free landline calls so I can call you for free!!!

Jackie, I had to laugh at your comment about him being a fishmonger. From what I know he is the head consultant in the department, but I was talking to a lady in clinic last week and she see's a lady consultant and said how nice she is, so if something like this happens again I will see about changing to her. At the moment I am phoning the specialist nurses after blood test results to check them, you can understand why, so I think next time I am going to make a comment about being disappointed with my consultant and if the nurse ask why I will tell her. I'm seeing him again in a few weeks time and if I am feeling brave I may even tell him.

I really don't want to change hospitals, it is just a two minute drive away and after having a chat with one of the specialist nurse and being told that once you meet the criteria for anti tnf you get it, no going to the PCT, unlike the other two nearest hospitals who have a budget and think I am better off where I am.

I forgot to mention in my previous post about another comment he made ...............

Several weeks ago I posted about bone nodules appearing. I was at the time horrified by the ones that had appeared on my elbows, I am use to them now so they don't seem so bad, they are like little bulbous round things that just appeared from nowhere, we all know our bodies and these hard bumps had suddenly appeared. I had an appointment with my GP about something else and I showed them to him and he told be that they were bone nodules. I also showed them to the specialist nurse when she gave me my steroid prescription and she agreed with what my GP had said......................Well, the consultant doesn't, according to him, these hard lumps, which when you tap and sound just like if I was tapping my knee bone are...............wait for it.................FAT. Yes, you've read that right, it's fat dispersal, it happens when you get older, I felt like lifting up my T Shirt, showing in my flabby midriff and saying Doctor, this is fat, you should go to Spec Savers.

I have stated reducing my steroids, halving the dose on alternate days, this is done on the advice of my specialist nurse, she agreed with everything I said about steroids masking the control of the RA and what problems this may create in the future about finding the correct dose of drugs. Up to know I am coping with it, when I ring for my next blood test result I will ask what she advises to do next.

Bye for now

Paula x

Hi Paula,

Just wanted to say that the jaw thing is not in your head, yes I was told its the RA. I get it regularly just as you describe and the last time it went on for about 4 months, varying degrees of being able to eat, yawn, talk and snog! I just hate it when they make you think its all in your head. Do they think we're just a bunch of fantasists making it up for a laugh, if I'm complaining about something its because I have cause to!

And yes its amazing how quickly we get used to something not being too bad. I made a similar comment about my hand the other day and the person I was talking to said yes well maybe not too bad but still very different to your other hand, hardly normal, gotta laugh!

Between us we could write a book of stupid comments made by consultants, it would be the funniest thing and maybe raise a few quid for NRAS?

Good luck Paula, hope things get more sorted for you soon.

Sara
x

Thank you once again for your replies. I've read your advice about changing consultant and if I had read what I've put I think I would be saying the same.

I have been a bit quiet but I decided to wait until I'd had my second blood test results and spoken to the nurse about it all before I posted this update.

I don't think I told you but my first blood test result ALT 23, but that was done the week after my first MTX 15mg injection, I did say to the nurse at the time that we should wait until the following week, at least then I would of had two lots in my system but it fell on deaf ears.

Well, I had my second blood test done a few days ago, decided that I would talk to the specialist nurse about my consultation. Put a few notes down on some paper about what I wanted to say and took the plunge and spoke about it.

My ALT had risen to 40, I know it's still within the range of being OK, but that is with just three lots of MTX, no other RA drugs. Will just have to wait and see what happens. When that was over I started to ask her if my consultant would appreciate negative feed back from his patients regarding their consultations. She asked me why and I told her how disappointed I was after seeing him and it was really bugging me. Told her everything that happened and how everything was put down to stress and I thought that was an insult to my intelligence trying to palm me of with it's all stress related. Did tell her that I should of worded that I'd got a fertile imagination quote differently, should of said, deep thinker or forward thinking....then adding that was why I'd asked about reducing my steroids, because I could see the problems ahead that would occur if I was still taking them when they were trying to find the right dose of RA drugs for me. Told her I felt that in future I would not feel at ease talking to him about anything that was worrying me, that I thought could be RA related. I know how complex this illness is and it can affect lots of other things than just our joints.

Luckily she was the nurse who gave me the prescription for my steroids, the one who felt my elbows and said that they were bone nodules. I told her that the consultant had said that it was fat, to which she replied that yes, you can get fat pads when you get older, but mine aren't they are bone nodules. She was very surprised when I told her that the consultant had indeed felt them and not just looked at them to get to his diagnosis. (You know if I bang my knee bone and then bang these lumps the noise is the same. tapping on bone). Anyway after I'd said what I wanted to say the first thing she said was.....''Do you want to change your consultant?'' Bit surprised about that, would of thought she might of been a bit defensive towards the consultant. I asked her if he was the 'Head Consultant', because I always thought that he was, but no, he's just been there the longest, told me that all of the consultants are much the same. If I did want to change consultant this would have to be one by referral from my GP.

I decided that I would see him again and tell him how I feel just to see what he says. She then said.....this surprised me, 'If I wasn't happy after seeing him, she would advise me to change to another consultant'.......reading in between the lines she agrees with everything I've said, don't you think?

I'm seeing the consultant a week on Friday to see what to do next regarding my medication and my husbands told me to say nothing and then afterwards see about changing to another one. I do want to see my GP about it all, to see what he thinks, but I don't like wasting an appointment just to talk, when someone ill can't see him, then I think.........I am ill..... I'm sure he gets people going to see him with next to nothing wrong with them when a visit to the chemist would of done. I am in a bit of a dilemma what to do at the moment.

Forgot to mention......I asked her why I hadn't been told about the high result in February, I did ask the consultant this, but I think he's been on the same course that MP's go on.....How To Avoid Answering A Direct Question'.....he just said it was still within the safety parameters and then quickly changed the subject and that was that. She really couldn't answer it, it was up to the consultant to check, did say that if he wasn't there a junior doctor would of done it, she said it had to of been down to human error. Either it wasn't checked or misread. I think myself that because the previous three months the reading was 57, then the particular month in question it was 157, it just got looked at quickly and the 1 got missed so 157 became 57. I know everyone makes mistakes, but a bit worrying when it's the medical profession.

Well that's about it all for the moment I think. Steroid reduction going well, I am now down to 5mg everyday for two weeks, then one 5mg every other day for two weeks (can take anti inflammatory in between steroid days) paracetamol's when required and then if all goes to plan stop them all together. Fingers crossedxxxx

Will keep you posted.

Paula x

Hi Paula,

I agree your care has not been good at all and you would benefit from a change of consultant.
I have been having dreadful problems with my rheumy dept for years now,can't really go into it all and keep politically correct as the forum demands! The consultant and rheumy nurses left and when we finally got a new consultant she only stayed a few months!
After many problems with lack of care and poorly trained nurses not doing their jobs I had a meeting with the manager of the rheumatology department. She has managed to get me transferred to consultant at a different hospital in the same health authority without me having to be re-referred by my GP, so maybe this is an option for you?

Love Doreen xx

Paula

RA is a dreadful disease, then if you don't get the right support and care things are even worse.

I think the biggest thing I have picked up from your posts is that you are worrying about offending people and causing problems. The medical profession are paid a very good wage to give you the best care possible. If you are not happy then you have the right to change and choose who you would like to be looked after by.

I am going to be blunt ........... stop giving people the benefit of the doubt and look after number one and don't keep delaying on doing something about it. You are only a number to them and they will not lie awake at night worrying that you are no longer their patient.

The steroid problem is tricky. I hate having steroids but at the moment they are keeping me mobile and out of the severe pain bracket. Like everything else in life, you have to weigh up the good against the bad. You have had such a rotten time lately that if I were you, I would continue on with them whilst your Daughter and Grandchildren are visiting. You will need all the strength you can muster. You may be alright for the first few weeks after stopping them, but the RA may start causing you problems big time and then where will you be. There is plenty of time ahead of you to try and cut them down with the winter months coming up.

I hope you don't mind me saying what I have said, but you really do deserve better and unfortunately you are the only one in charge.

Take care

Jackie
xx

Go Girl!!!!!!

Jackie
xx

Julia

Sorry to read that you have had 'family matters' to deal with, really hope things will be over for you in soon, please don't try to get too stressed, it will only aggravate your RA. I've come to realise that 'what ever will be will be' and no matter how much I worry about things the outcome will be the same.

I think I should be alright once I've stopped taking steroids, will be able then to start taking Bruffen Retard (slow releasing anti inflammatory), can top up on paracetamol if I want to. Not so worried about it now, if I have problems, well I will cross that bridge when I come to it.

I have found out that one of the consultants at my hospital is now a professor. He is attached to Nottingham University, he's a honorary consultant at my hospital, (not really sure what the honorary bit means) his name is Professor David Walsh, he may be my number one choice if I do decide to change my consultant. Did see a lady the other day that I know who's got the same consultant as me...........she not very happy either.

I'm defiantly going to say something when I see my consultant next Friday. I always take a list in with me of things I want to talk about. Going to tell him straight away that I need to talk about my last consultation with him. Not sure yet how to word it, don't want to use too strong a description of how I feel about everything being put down to stress......think I may say something along the lines that I was very disappointed with the outcome of the consultation and his answers to my questions. Not unless you or anyone else could advise on a better way to say.

On a lighter note......I have bought some new deodorant....soft and gentle aromatherapy stress less, so if he's right and it is all stress, by the time Friday comes, with me squirting myself with it everymorning I will be cured of all my recent problems

Take Care

Paula x