Newly diagnosed but GP won't send me to rheumatologist

anthony1
anthony1 Member Posts: 20
Hi,

Newbie here, so apologies for the length of my post and the silly questions:

Background:

7 months ago I experienced pain in fingers and wrist of right hand, and both shoulders. I was 'diagnosed' with RSI (because of computer work) and advised to try yoga/massages.

About a month ago and with no 'warning' I woke up and the middle finger of my right hand was swollen and painful when I made a fist. As I have mild psoriasis, my GP he said it's probably PA. We did blood tests (came back normal) and hand and shoulder xrays. Shoulder xray showed minor Osteoarthritis, not related to PA (how do they know?). Hand xray showed all ok (no signs of PA).

Taking ibuprofen worked for 3-4 days, but then pain and swelling were back. Tried another NSAID (can't remember name) which didn't work at all. Moved back to ibuprofen - GP said it's the best solution! I'm using a combination of ibuprofen gel and pills, as I'm worried about taking pills for too long - it's been over a month now, but it doesn't do much!

In the meantime, finger swelling/pain got worse. I can barely move my finger and the pain extends all the way to my palm. Went to the GP again and he refered me to a hand specialist, but not a rheumatologist; He says it's too early and I've only had it once (I say twice, counting what we thought to be RSI 7 months ago).

Questions:

1. Is ibuprofen gel as good as pills? Gel works better for my finger and I assume is better for the stomach, but why did my GP not even suggest it? Are there any advantages of taking pills over using gel? Could I have PA in other joints and not realise? (in which case applying gel on my finger would leave those at risk?)

2. How long do I have to take ibuprofen for? When do I know how to stop?

3. From what I've read it's important to see a rheumy. GP disagrees so I'm thinking of going private. I can afford to go once/twice, but not regularly. Would going private once or twice jeopardise my NHS treatment in future in any way? (e.g. GP saying "well you went private once, so keep going there") Should I insist to see an NHS doctor?

4. If I go private and they suggest DMARDs, can I get them on the NHS? Would my GP need to prescribe them? I can't afford to pay for long-term treatment...

5. Is my GP right in saying I should only treat with Ibuprofen at this stage? I only have it on one finger, is that a good reason to see a rheumy and get on DMARDs with all the side-effects?

6. Do you know of a good rheumy in London? By good I mean someone (obviously) knowledgeable but also willing to take the time to listen and EXPLAIN the options available.

7. Since this is an auto-immune disorder, are we supposed to be making our immune system stronger or weaker? I've been drinking cider vinegar in the past, which helped my psoriasis and boosted my immune system. I've also read some stuff about vitamins A & D, and how they boost the immune system and help against psoriatic arthritis, but isn't that a bit of an oxymoron?

8. A bit of a silly (?) one... does PA affect the brain? I just turned 30, might be a sign of not being as young as 20 anymore... but I've started forgetting things/words or getting tired of 'thinking' sometimes... if that makes sense?


Thank you for any answers in advance, really appreciate the help.
Anthony

Comments

  • helpline_team
    helpline_team Posts: 2,765
    edited 30. Nov -1, 00:00
    anthony1 wrote:
    Hi,

    Newbie here, so apologies for the length of my post and the silly questions:

    Background:

    7 months ago I experienced pain in fingers and wrist of right hand, and both shoulders. I was 'diagnosed' with RSI (because of computer work) and advised to try yoga/massages.

    About a month ago and with no 'warning' I woke up and the middle finger of my right hand was swollen and painful when I made a fist. As I have mild psoriasis, my GP he said it's probably PA. We did blood tests (came back normal) and hand and shoulder xrays. Shoulder xray showed minor Osteoarthritis, not related to PA (how do they know?). Hand xray showed all ok (no signs of PA).

    Taking ibuprofen worked for 3-4 days, but then pain and swelling were back. Tried another NSAID (can't remember name) which didn't work at all. Moved back to ibuprofen - GP said it's the best solution! I'm using a combination of ibuprofen gel and pills, as I'm worried about taking pills for too long - it's been over a month now, but it doesn't do much!

    In the meantime, finger swelling/pain got worse. I can barely move my finger and the pain extends all the way to my palm. Went to the GP again and he refered me to a hand specialist, but not a rheumatologist; He says it's too early and I've only had it once (I say twice, counting what we thought to be RSI 7 months ago).

    Questions:

    1. Is ibuprofen gel as good as pills? Gel works better for my finger and I assume is better for the stomach, but why did my GP not even suggest it? Are there any advantages of taking pills over using gel? Could I have PA in other joints and not realise? (in which case applying gel on my finger would leave those at risk?)

    2. How long do I have to take ibuprofen for? When do I know how to stop?

    3. From what I've read it's important to see a rheumy. GP disagrees so I'm thinking of going private. I can afford to go once/twice, but not regularly. Would going private once or twice jeopardise my NHS treatment in future in any way? (e.g. GP saying "well you went private once, so keep going there") Should I insist to see an NHS doctor?

    4. If I go private and they suggest DMARDs, can I get them on the NHS? Would my GP need to prescribe them? I can't afford to pay for long-term treatment...

    5. Is my GP right in saying I should only treat with Ibuprofen at this stage? I only have it on one finger, is that a good reason to see a rheumy and get on DMARDs with all the side-effects?

    6. Do you know of a good rheumy in London? By good I mean someone (obviously) knowledgeable but also willing to take the time to listen and EXPLAIN the options available.

    7. Since this is an auto-immune disorder, are we supposed to be making our immune system stronger or weaker? I've been drinking cider vinegar in the past, which helped my psoriasis and boosted my immune system. I've also read some stuff about vitamins A & D, and how they boost the immune system and help against psoriatic arthritis, but isn't that a bit of an oxymoron?

    8. A bit of a silly (?) one... does PA affect the brain? I just turned 30, might be a sign of not being as young as 20 anymore... but I've started forgetting things/words or getting tired of 'thinking' sometimes... if that makes sense?


    Thank you for any answers in advance, really appreciate the help.
    Anthony


    Dear Anthony

    Thank you for your posting and welcome to our forums. I hope that you find the help and support you need here. Your questions are not silly at all and it is understandable that you want to explore these concerns. At this point finding out about the different types of arthritis, their symptoms, how they are diagnosed and the different medications that are used for each of them may be helpful so that you can speak to your GP about your concerns. Information about Psoriatic arthritis that you can download is on the link http://www.arthritisresearchuk.org/arthritis-information/conditions/psoriatic-arthritis.aspx
    and our booklet 'Living with osteoarthritis' can be found on the publications and resources section of our website.

    Help in finding out more about receiving a diagnosis of the different types of arthritis and how this diagnosis is determined is on our website on http://www.arthritiscare.org.uk/AboutArthritis/Gettingadiagnosis. Whether NSAID gels or tablets work better depends on the individual and they are used to reduce inflammation and joint swelling as well as providing some pain relief. You would need to review with your GP about how long is best to take them for.

    You could also ask your GP again about being referred to see a rheumatologist and your reasons for wanting a referral. PA usually affects many joints and has other symptoms too. Rheumatologists would need to make diagnosis and it would be up to your rheumatologist to prescribe DMARDS if he or she believes it is the appropriate treatment.

    We don’t recommend medical professionals but you could look at http://www.drfosterhealth.co.uk/ for consultants. Going private shouldn't jeopardise NHS treatment. Try and see an NHS Rheumatologist who also does private practice. That way if it is PA, you can be put into the NHS system for follow up consultations.

    The Immune system is overactive with PA so DMARDS try to reduce its activity, it is not a question of stronger or weaker. Our booklet 'Healthy eating and arthritis' will be able to give you lots of information about how supplements and diet impact on arthritis. This can be found on our website under the Publications and resources section.

    I would also like to encourage you to call us here on the confidential helpline so that you can talk things through with one of our helpline team. We are open Monday - Friday (10am - 4pm) and the freephone number is 0808 800 4050.

    I hope this has been helpful.

    Best Wishes
    Dawn
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I empathise - I have PsA and that has led to OA.

    I went for years without an official label / diagnosis as my PsA began in my left knee rather than in my hands or toes and it wasn't recognised as an arthritis. At the time it began my scalp was covered in psoriasis but even that wasn't recognised by my GP at the time as that. :roll: The only thing that ever showed in my blood tests were very elevated inflammatory markers (PsA is a sero-negative form of inflammatory arthritis, i.e. no rheumatoid factor is present) and as by that time my knee was 24" round it's no wonder they were high! You seem to be in the very early stages of this so that may be why your GP is unwilling to refer you but based on my experience I would recommend that you nag, OK? It may be too soon for you to start the meds but at least a contact with a rheumatologist will be in place and that is important. If you post again on the LWA part of the forum I am sure more people will get in touch with information and support. I wish you well. DD
  • anthony1
    anthony1 Member Posts: 20
    edited 30. Nov -1, 00:00
    Thank you both for the answers.

    My GP referred me to a "hand specialist" as I got to the point of almost not being able to move my finger, but the hospital vetting clinician disagreed and re-referred me internally to rheumatology instead. Some sense, finally!

    The wait is too long though, so will have to go private anyway. I'll post on the main board to see if anyone knows a good doctor in London.

    Thanks again foy your answers and support, it's great! :)
  • Katie85
    Katie85 Member Posts: 4
    edited 30. Nov -1, 00:00
    Hi Antony,

    i was wondering if you have been diagnosed and how you finger is, i have very similar symptoms to you and the consultant i have been refered to has cancelled my appointment, anyway i wondered what your problem was lol

    thanks
    Kate
  • anthony1
    anthony1 Member Posts: 20
    edited 30. Nov -1, 00:00
    Hi Kate,

    I finally saw an NHS rheumatologist (very good) last month, after seeing a private one first. The private one diagnosed tenosynovitis (inflammation of the tendon sheath) due to suspected PA and gave me a cortisone infection which did nothing for me.

    The NHS rheumy confirmed that PA is probable but not a definitive diagnosis yet and gave me ETORICOXIB (new generation anti-inflammatory). This has messed up my stomach a bit, has done nothing for my finger, but did wonders for my upper back. By that point I hadn't realised how bad this condition had affected my upper back. The doctor said it would help, but I never expected such an improvement. I had to stop it for a while because of my stomach and the stiff painful upper back symptoms returned. I started again a few days ago and I'm pain-free again. Unfortunately, the finger is still swollen as ever :(

    I have my second appointment late in January - hoping to see if there is a better alternative for my stomach and finger.

    Sorry to hear you are having trouble with your appointment, I know this can be stressful - did they give you a reason for why they cancelled?

    The only thing I've found so far that has helped with my finger is the Arnicare Arnica cream (got it on Amazon). I also tried arnica gel, but it wasn't as effective. Ibuprofen gel is also good, but wrecked my skin. Apparently, because it's the tendon sheath, NSAIDs don't work that well.

    Best of luck and let us know how it goes please!
    Anthony
  • Katie85
    Katie85 Member Posts: 4
    edited 30. Nov -1, 00:00
    Thank you for replying I'm glad your seem to be getting answers even though it does seem to be slow. The consultant looked at the letter from the GP and has decided my symptoms are not suitable for the appointment??? How they can say that from a letter and not examining me and looking at my swollen joints etc i will never know! I have seen a few GPs and they have straight away said its arthritis, but the X-rays and bloods came back fine, so they were quite happy to brush it under the carpet i even got asked if i could just ignore my protuding knuckle joint!
    I also have very bad pelvis all my other joints ache I'm tired 24/7 it's been an on going thing really but my hands starting to deform scared me and now my finger has swollen and its making life difficult, I have 3 young children so you can imagine things aren't easy owing a fingerless :wink: I'm going back to my GP to demand a copy of the referral letter and to say I want the appointment re-instated, don't know if it will work but I suppose its worth a try:/ it a very scary thought looking into the future if my hands carry on the way they are :cry:
  • anthony1
    anthony1 Member Posts: 20
    edited 30. Nov -1, 00:00
    I'm really sorry to hear about that Kate. Your situation sounds worse than mine actually, since it's multiple joints, and I would definitely fight it.

    You can try at a different hospital depending on where you live - sometimes one hospital might be too busy and trying to keep their waiting lists down :( But then you have to look at the referral letter as well - it might be indeed your GP not having worded it correctly.

    My tests were normal as well, but you'll find that with PA that's quite common. Xrays didn't show anything either, but my finger is visibly swollen. Only ultrasound showed issues with my upper back, but that's a different story.

    Please don't let this get you down, you have to insist until you get your appointment. I would also suggest talking to your hospital's PALS (Patient Advise and Liaison) team, they were really helpful in my case when the hospital lost my paperwork. They can help you with a variety of matters and this could very well be within their remit.

    Trust me, it all starts to feel better when you get a diagnosis (even a semi-diagnosis - even just knowing the name of your condition helps!) and you have your own doctor at the hospital.

    In the meantime, try and talk to your family if you can and explain how this condition affects you physically. It's not always easy for others to understand what comes with this condition.

    All the best,
    Anthony
  • Katie85
    Katie85 Member Posts: 4
    edited 30. Nov -1, 00:00
    :D
  • lizzy100
    lizzy100 Member Posts: 235
    edited 30. Nov -1, 00:00
    i have to say i say a privte rheummatolgoist who was retired and he was rubbish, then i saw a good one once, who then left and he basically gave me a diagnosis, and then his replacement went back on his diagnosis. and know im seeing a different specialist! its a mine field!

    they tend to want u tro try several different types of anitinflammatories as a first line. i tried ibuprofen, naproxen, celebrix/coxia? none of which did anything.

    i dont find ipbuprofen gel does anything. and alot of doctors dont think it does either. i was told to try it but think he was pretty much fobbing me off. thn he said i wasnt rubbing it in hard enough, and you dont put it on like hand lotion! didnt make any difference how i put it on!.

    hope you get somewhere though. the time it takes is frustrating.
  • Katie85
    Katie85 Member Posts: 4
    edited 30. Nov -1, 00:00
    I had my rheumatology appointment yesterday which was carried out by 2 med students (they have to learn) the consultant was in the room the entire time! As my bloods from November haven't shown inflammation, nor have X-rays done in October and my joint "feel" ok (whatever that means) they are treating my hip as hyper mobile with physio and my hands as I have joint stiffness and deformalities they are doing an ultra sound! I'm showing signs and symptoms of RA and lupus but as bloods and xrays are normal I've been told its not! It's all very confusing and frustrating! I've already lost some movement in my finger :(
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello Katie, if you re-post on the Living with Arthritis part of the forum more people will be able to answer you: this forum is 'reserved' for the Helpline team only (though forum members do chip in from time to time. :wink:) Quite a few people on here have hypermobile joints, they can truly empathise with your dilemma. I wish you well. DD
  • anthony1
    anthony1 Member Posts: 20
    edited 30. Nov -1, 00:00
    Hi Katie,

    My bloods weren't showing inflammation either, but I hear that's quite common with psoriatic arthritis. They're all different, even though the symptoms are the same. I have lost some movement in my finger too, and still treating it with anti-inflammatories. It is frustrating, but unfortunately it takes time to find something that works. I've tried 4 different treatments so far, none is perfect, but celebrex seems to be ok for me for now. I've learnt that my joints are hypermobile too, and I'm starting physio next week.

    Good luck with your treatment and stay strong! :)
    Anthony
    Katie85 wrote:
    I had my rheumatology appointment yesterday which was carried out by 2 med students (they have to learn) the consultant was in the room the entire time! As my bloods from November haven't shown inflammation, nor have X-rays done in October and my joint "feel" ok (whatever that means) they are treating my hip as hyper mobile with physio and my hands as I have joint stiffness and deformalities they are doing an ultra sound! I'm showing signs and symptoms of RA and lupus but as bloods and xrays are normal I've been told its not! It's all very confusing and frustrating! I've already lost some movement in my finger :(
  • helpline_team
    helpline_team Posts: 2,765
    edited 30. Nov -1, 00:00
    Hi everyone,

    On the whole we'd reply to a thread if there's a question that someone seems to be asking. So if you have any questions for us, just keep them coming. If you'd like some support we're very much here for that too.

    If we can help we'll always do our best to help.

    all the best

    Guy

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