Having a flare up

felicityh
felicityh Member Posts: 25
edited 7. Jan 2020, 15:10 in Living with arthritis
I have psoriatic arthritis (diagnosed nearly 4 years ago). I have been on methotrexate for a year and a half and sulfasalazine since early September. I am in a flare up that started in late July. My doctors haven't been too good recently and I'm a bit stuck on what to do. I saw them last in September and they arranged for an MRI of my knee and an ultrasound of my hand. I saw my nurse in November and was told both scans showed active inflammation. I've been referred to physio for my knee but I still haven't seen my doctor again and don't have an appointment until June. My nurse said she'll try to get me a sooner appointment as I obviously need to see a doctor. I've phoned several times to talk about this and still nothing seems to be happening. I have been on the sulfasalazine for about 3 months now and haven't noticed any difference at all to any of my joints. I had an intra muscular steroid injection when I started the sulfasalazine to bring my symptoms under control until the sulfasalazine kicked in but that has worn off and I'm starting to think sulfasalazine won't work for me and that I need a different medication. I'm feeling really frustrated by all of this and feel like I'm being completely ignored by my doctors and don't know what else to do really! I've been phoning the department, I saw a rheumatologist privately who agreed I had inflamed joints and wrote to my NHS doctor, my dermatologist has written to them recommending I start adalimumab but still nothing! I also went to A&E because my knee pain got unbearable and I thought maybe as a last resort they could help. My GP is also being useless too so I feel completely helpless. Does anyone have any advice or ideas as I feel like I'm completely reaching the end of my tether! xx

Comments

  • BettyMac
    BettyMac Member Posts: 170
    edited 30. Nov -1, 00:00
    Hi felicityh

    I'm sorry to hear you're having such a miserable time of it just now.
    Many of us on this forum have been in the same position at one time or another and we understand how frustrating it is when you feel no-one is taking you on.

    I know that most NHS Rheumatology departments are struggling with lack of resources, hence the slowness in getting an appointment.

    There are a couple of things you could maybe try:

    Write a letter to your rheumatologist asking for an appointment and say you are concerned the methotrexate/sulfasalazine combo is not working, you have ongoing inflammation and you are worried about further joint damage.

    OR

    Contact PALS who will give you advice and can intercede on your behalf, if you want.
    https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/what-is-pals-patient-advice-and-liaison-service/

    In readiness for when you do get to see the rheumatologist - keep a diary of symptoms - and how they affect your day-to-day living, meds, sleep etc.
    It needs to be succinct - just the main details. Print it off - use a highlighter pen to highlight the joints affected - and take it to your appointment.
    Time is short at an appointment so the doctor won't be able to read it in detail - but the highlighter will give an immediate impression of the level of disease activity.

    I'm sure some of the others on this forum will pitch in with other suggestions.

    Good luck!
    I hope 2020 will be a better year for you.
  • felicityh
    felicityh Member Posts: 25
    edited 30. Nov -1, 00:00
    BettyMac wrote:
    Hi felicityh

    I'm sorry to hear you're having such a miserable time of it just now.
    Many of us on this forum have been in the same position at one time or another and we understand how frustrating it is when you feel no-one is taking you on.

    I know that most NHS Rheumatology departments are struggling with lack of resources, hence the slowness in getting an appointment.

    There are a couple of things you could maybe try:

    Write a letter to your rheumatologist asking for an appointment and say you are concerned the methotrexate/sulfasalazine combo is not working, you have ongoing inflammation and you are worried about further joint damage.

    OR

    Contact PALS who will give you advice and can intercede on your behalf, if you want.
    https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/what-is-pals-patient-advice-and-liaison-service/

    In readiness for when you do get to see the rheumatologist - keep a diary of symptoms - and how they affect your day-to-day living, meds, sleep etc.
    It needs to be succinct - just the main details. Print it off - use a highlighter pen to highlight the joints affected - and take it to your appointment.
    Time is short at an appointment so the doctor won't be able to read it in detail - but the highlighter will give an immediate impression of the level of disease activity.

    I'm sure some of the others on this forum will pitch in with other suggestions.

    Good luck!
    I hope 2020 will be a better year for you.

    Thank you so much for your reply! I think I'll try talking to PALS and hope they can get something sorted and if not I'll write a letter. Thank you for your ideas, they're really helpful! It's just so frustrating, as I'm sure everyone on here knows, when you have to use the little energy that you have to make your doctors do their jobs. I have been keeping a symptom diary/list as I find that always helps me make sure I remember everything and I can give it to them so they can read over it after the appointment as well. Thank you again and hopefully this will help something happen! xx
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    The trouble is there aren't enough doctors - of any kind.

    Your GP could prescribe anti-inflammatories to keep you going and also, at a push, steroids but your rheumatologist probably won't approve as they do mask what's going on.

    We all, at times, come to the real tester bits. I recall reading, at one such time, that, when you reach the end of your tether you should tie a knot and hang on :roll:
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • frogmorton
    frogmorton Member Posts: 26,738
    edited 30. Nov -1, 00:00
    Oh Felicity I am sorry you are suffering so badly and feeling you're getting nowhere.

    As others have said the issue is lack of consultants in every field, but that's no help to you or the other people ringing like yourself in pain here and now :(

    I hope PALS are going to help you and that you'll let us know how you get on.

    ((()))

    Toni xx
    Love

    Toni xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Flares are nasty when they run this deep. Over the years I've had some long-lasting efforts where the only answer has been PUASU (put up and shut up) because that was the only option apart from tablet steroids (a big no-no for me).

    Flares can still happen despite the medication, what dose meth are you taking? I took meth and sulph for a few years but alongside anti-TNF meds too, still flared though. Time for my meth. :roll: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • felicityh
    felicityh Member Posts: 25
    edited 30. Nov -1, 00:00
    The trouble is there aren't enough doctors - of any kind.

    Your GP could prescribe anti-inflammatories to keep you going and also, at a push, steroids but your rheumatologist probably won't approve as they do mask what's going on.

    We all, at times, come to the real tester bits. I recall reading, at one such time, that, when you reach the end of your tether you should tie a knot and hang on :roll:

    Thank you for your reply! You're definitely right about there not being enough doctors, I feel for them as I know they are under a lot of stress but it's hard to stay patient when it's been so long.

    I can't take anti-inflammatories due to stomach issues I have (IBD) which only makes things more difficult of course :roll: I have considered asking for steroid but agree rheum might rather I don't so they can properly examine me. I'm trying to hold on but it's hard with stiff hands :lol: xx
  • felicityh
    felicityh Member Posts: 25
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Flares are nasty when they run this deep. Over the years I've had some long-lasting efforts where the only answer has been PUASU (put up and shut up) because that was the only option apart from tablet steroids (a big no-no for me).

    Flares can still happen despite the medication, what dose meth are you taking? I took meth and sulph for a few years but alongside anti-TNF meds too, still flared though. Time for my meth. :roll: DD

    They really are nasty! I was so hopeful the steroid jab and sulfa would sort it out but it seems that won't be the case after all. I'm only on 12.5mg mtx because I get awful side effects if I go any higher than that. I really think I need a new med added as this combo definitely isn't working for me and I know I have enough swollen joints to qualify so just need to somehow get to see my rheum which is the hardest part. Thank you for your reply xx
  • felicityh
    felicityh Member Posts: 25
    edited 30. Nov -1, 00:00
    frogmorton wrote:
    Oh Felicity I am sorry you are suffering so badly and feeling you're getting nowhere.

    As others have said the issue is lack of consultants in every field, but that's no help to you or the other people ringing like yourself in pain here and now :(

    I hope PALS are going to help you and that you'll let us know how you get on.

    ((()))

    Toni xx

    Thank you xx It's so frustrating that they send me for scans and then don't bother to see me or do anything when they all come back showing inflammation. I'm hoping PALS will be able to sort it out too xx