Experiences please

Hiya font of knowledge. So, some of you know my story. I've seen my consultant 3x and I've had my MTX increased to 20mg and started Hydroxychloriquine (sorry can't remember the shortened version!). Because I was self funded I have yet to have any diagnostic imaging on any of my affected joint because I couldn't afford it. My NHS appt is the 17 March and I am wondering what everyone's experiences are of what happens of this "first" appointment or does it depend on the hospital. Childcare is an issue so I would ideally like diagnostic imaging on my most affected joint (both wrists and all fingers and my right knee) to be done the same day and not have to come back. I know ideally one would have imaging done prior to treatment, but that wasn't an option. Initially inwas researching MRI a scans (self funded) but my RA progressed rather rapidly so he made the diagnosis on me alone. My last DAS score was 4.85 and im sero-negative.

NB to all those who commented on my last post, a massive Thankyou. Guess who is looking after my twins for this appointment....😁. Also, for those concerned about my 20 year old cat, I'm afraid we said goodbye to her last night in the comfort of her own sofa, fire on, kids in bed, just me, DH and my wonderful good friend and vet. A peaceful way to go but I will miss her terribly. Especially in those lonely hours in the day when my kids sleep and Im in pain. This household won't be without a cat for long.

9 Replies

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  • Oh and so far I've had no improvement on the me meds...although only been on 20mgs for 3 weeks and hydroxychloroquine for 3 weeks. 2nd Steroid injection of 160mg (last one 5 weeks prior) has worn off..

  • So sorry to hear about your cat, I lost my cats a few years ago. I still miss them, there was always a welcome when I got home. Sounds as if she went in peace.

    As far as your first appointment goes, I think it's heinz varieties, no two units are the same. I was diagnosed by my consultant at my first visit, and started treatment within a week MTX and hydroxychloroquine. Had xrays of hands, and blood tests and chest xray.

    You are taking someone with you, ask them to take brief notes. Take a list of any questions you have, any concerns. Tell it as it is, don't be tempted to gloss over your symptoms, pain, fatigue and everyday difficulties. If you don't understand something, ask! Make sure that you are clear what the next steps are, and what treatment options are available. Most importantly, try to establish whether there is a helpline, in case you need advice. Mine has been a real lifeline at times.

    It is probably a good idea to leave off the pain killers and anti-inflammatories for a few days before the appointment, so that they get a clear idea of your symptoms, they can be masked by medication. Definitely no steroid injections prior to your appointment. It's difficult, but necessary.

    I hope it goes well, good luck!

    And I'm so glad that you have the appropriate babysitter!!!

    Keep us posted! M xx

  • Thankyou. Not taking pain relief prior to appt sounds like a great idea not thought of that before. As I mentioned, I've seen the consultant three times already for diagnosis and meds. No response the last time hence another steroid injection and upping the MXT and adding in Hydroxychloriquine, that appt was 3 weeks ago. Yes, I thought as much re Heinz. I guess if I don't get the imagery done this time, I know my consultant is desperate to know so it'll happen on the return visit. I guess I've waiting this long for my NHS appt! I've started writing my complaint letter about my previous GP too, so that's a positive step too.

  • Hi--- I think you will find that every consultant does things differently chick, depending on the facilities available on site so to speak. I had to go to a different hospital for the scan of my hands --- that was when I received my diagnosis. Like you I am seronegative , think we are sometimes harder to diagnose. It will take some time for meds to kick in--- I started mine- mthx and hydrox on 23 oct and even tho sometimes I "" think""" they aren't working I realise that they are. Sad as I may seem -- and even though I work full time I still have more free time than you as my children are both married- I started a list of what I couldn't do pre diagnosis and compare with what I can do now. Eg-- using spray deodorant one handed, switching electric toothbrush on without pain etc--- I even knelt on the floor the other day to change my grandaughter s nappy, and fastened the baby grow!!! Small milestones which appear gradually. In a few months you too will be noticing small differences xx

  • So sorry about cat. We have had to put three very oap mogs to sleep over the last 5 years and each to time it has been devastating for us. Lost the last 18 year old one last year, but got two huge fat bottomed british shorthair girls before he went, so had something to help us through it.

    Had my first Nhs appt last week. I had two private appts with the same rheumie before then, back in October (because the Nhs referral process took so long). Have to say I expected a lot more from the appt, but as I have Explained in another post, I may have put his nose out of joint. I expected to be introduced to a network of support, like a rheumie nurse, or a rheumie team, or a schedule to have an x Ray or scan of my feet, or another blood test at the hospital. But nothing. He kicked me out within 10 mins and I dont see him again for another three months. and I had set up childcare for at least half a day for my 7 month old baba......

    If I get pain back in the meantime, he's told me to go see my GP.

  • Are you seeing the same consultant with his/her NHS hat on, or will it be a new one? That will probably make a fair bit of a difference.

    Also whether the hospital is well equipped/well resourced or not. I would have thought it would be very unlikely to get advanced diagnostic imaging on the day, ie MRI or CT scan. My experience of hospitals is there's usually a 6 week waiting list. But I didn't get referred for MRI at the start at all, as consultant felt that it was uneccessary as the inflammation in the joints was so obvious (my knees were like footballs and hands were very boggy)

    You might sent off for an x-ray. In my hospital there is a walk in clinic for x-ray so you are given a "chit" and can either go off immediately or come back within the next few days if that helps manage your time and there's a queue. When I was first diagnosed I was sent off for x-rays not as part of the diagnosis, but in order to have a reference point to be able to look at disease progress.

    Presumably if you're already on MTX you have blood taken anyway, so do make sure you have a copy of the most recent results as they may not have got to the consultant. I tend to carry around a copy of all my papers just in case, as several times my files has mysteriously vanished.

    I generally allow 2 hours for my appointments just in case, but my hospital is quite organised so rarely need all of it.

  • Thankyou helix helix, your response is very helpful. Yes, luckily my consultant is on the ball. I was I itally down to see someone else, but my consultant spotted that and requested me! Amazing. But whether ill see him, himself, is another matter, I could we "another member of his team". I'm not backwards in coming forwards and will rest imaging if it's not mentioned. Yes, he did want diagnostic imagery (MRI ideally) for diagnosis but, like you, the inflammation is obvious so he said he didn't need it. Blood test result, good idea. I'll ask my surgery. The hospital is very large and have walk in clinics for X-rays, I did this for my chest X-ray prior to MTX, so that's ok. Love that, it can take 1.5 hours to be seen! I've waited that long to see my endocrinologist for my thyroid! Hmm, even privately Ive awaited 1.5 hours to see him as he's so thorough. Still, you don't mind waiting when he's thorough and good, do you?

  • If its just xrays, then my experience is that you can usually just get them done same day, though you may have to wait if there is a queue in xray department. If its MRI scans, then they require an appointment and waiting lists for those can be quite long. I think its best to wait to have them done in the NHS though, as there can be issues with getting the actual images into the NHS computer system if you have them done at a private radiology centre, and you really need the images in the NHS system in case your rheumatologist changes and the new one wants to review them.

  • So sorry to to hear about your cat ( and you ). Mine has to go in for an op on Friday. Hope you get everything sorted at your appointment.

    Beverley

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