Totally fed up

Options
As5567
As5567 Member Posts: 665
edited 17. May 2014, 10:23 in Living with Arthritis archive
I have been waiting for a new medication now for around 5 weeks and have been without any biologic treatment now for around 3 months.

Every single time I get a step closer to having this drug 1 or more test results come back abnormal. Firstly it was my ferritin levels which wasted around 2 weeks and required more blood tests, the doctor then decided it was most likely down to really high inflammation and proceeded to send me for chest x rays (The last step before the paper work can be complete for my new drug) My chest x ray came back abnormal, after having to wait 3 weeks just for this x ray to be looked at I was rather upset and annoyed, I had another x ray and the doctor looked at it the very same day, again not happy with the result so I was told I would need to be seen by a specialist and I would get an appointment in the post. The letter arrived today with an appointment date for early August, when I saw this I actually wanted to cry, I have a feeling that I'm not going to even get the first injection until maybe October of this year as it takes 3-4 weeks for the medication to arrive after the paper work.

I have no idea how I will manage for much longer I can cope with all of the pain and constant spasms in my spine and chest, you know when things are bad when you're taking the maximum dose of Dihydrocodeine and Tramadol together which offers 1-2 hour window where I can get some sleep. The hospital I'm currently in also has no pain management clinic, it's something that seems to be very hit or miss on the NHS in Wales.

Comments

  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Options
    Hi As

    I am so sorry to hear about your dilemma as I don't know anything about your meds etc I cannot comment all I can suggest is maybe speaking to your GP and see I s/he can maybe get you a quicker appointment. Good luck I hope you can get some help soon.................Marie x
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
    Options
    Hi there
    So sorry you are in so much pain. You need to be seen sooner than this. As Marie says maybe ask your gp? I was in a god awful state with my psoriasis once and they sped up an appointment for me.Sounds like you need more pain meds aswell. Hope you get some help soon.
    All the best x
    How am I gonna be an optimist about this?
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Options
    I'm with the others I would go and ask and at least have your say has to how much pain you are in ..while they debate...honestly there should be some way of speeding this up for you, I understand they have to be cautious but meanwhile you suffer..hope they get you started on the meds very soon..
    Love
    Barbara
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Options
    I can really relate as I'm in the same situation. Constantly waiting for a referral or another test that puts my starting Enbrel further and further into the distance. It's the pits, and especially when nasty flares are the norm. You have my sympathy, but I have no suggestions to improve things.
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    Options
    I've phoned up the hospital outpatient call centre and pleaded for an earlier appointment. It's worth a try.
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
    Options
    I'd definitely enlist the help of my GP and I know he'd chase it up. I do 'get' that all the tests must be in place with a positive result beforehand but this is a long, long time to wait.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    Options
    Thanks all,

    I did phone the appointment place as I needed to do so to confirm the appointment anyway, I asked could I get a sooner date but the lady told me they were fully booked, short staffed and I had already been given an urgent appointment. I did phone my rhumey's sectary who told me she would have a word with my doctor but can't guarantee anything. I suspect I won't get an appointment any sooner because it's just the way the hospital is run, very short staffed and new patients like me being dumped on them left right and centre.

    If all else fails then I might just simply have to look into paying to see someone private, not sure if that would speed things up or not tho.
    Kittkat wrote:
    Hi there
    So sorry you are in so much pain. You need to be seen sooner than this. As Marie says maybe ask your gp? I was in a god awful state with my psoriasis once and they sped up an appointment for me.Sounds like you need more pain meds aswell. Hope you get some help soon.
    All the best x
    They won't give me any more pain meds than I'm currently on, my gp has said there is more that could be prescribed for different types of pain etc but without the go ahead from a doctor at my hospital he isn't able to prescribe anything, the doctor at the hospital says that they don't want to give me anything extra while im on prednisolone and the fact I've also had Iv steroids and a depo injection with very little help from either. I guess the doctors know best and I just have to put up with the pain
    Boomer13 wrote:
    I can really relate as I'm in the same situation. Constantly waiting for a referral or another test that puts my starting Enbrel further and further into the distance. It's the pits, and especially when nasty flares are the norm. You have my sympathy, but I have no suggestions to improve things.
    It's really frustrating when an x ray takes 2-3 weeks just to be looked at, at my old hospital when ever I had an x ray my doctor would tell me to come back and he will go over the x ray with me there and then in clinic. I don't see how 2-3 week wait for an image to be viewed on a computer can be justified in this day an age, and to then be told they're not happy is a kick in the teeth. What concerns me most is what damage is going on in the background while I'm waiting for all of these results, surely they should treat people with active inflammation as a priority to get tests done to try and prevent any extra damage done to the joints. I hope you get to start Enbrel sooner rather than later, I hope to hear you get good results when starting that drug, I sure did many years ago it was like being given a new life!
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Options
    Hi,

    I know it's really hard to wait but I suspect they need to check whether or not any of the inflammation is coming from ure chest, I had a ct of my lungs & they found I have emphysema :( I'm in no way suggesting that's the case with you!!!

    I had to go thru all of this last year & I eventually started my biologic on April 1st this year :D
    I had no meds for my arthritis in that time, I was taken off of mtx at the end of June 2013.

    You will get there eventually, keep the faith & don't give up. I totally agree with asking ure GP to request a expedited appointment. There is a huge difference in us asking & ure Dr asking :wink:

    Good luck.

    Xx xX
    Healing Hugs
    Debbie.x
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    Options
    I will have a long chat with my gp about it tomorrow, I have to make an emergency appointment first thing anyway. My left eye is all red and painful today so it's probably infected from something.

    I really hope my GP can do something to speed things up, or some how just give me a few nights where I can get a few hours of sleep, 5 weeks without being able to sleep for more than 1 hour is really beginning to take its toll, the only good thing that's come out of all of this is the amount of weight I have lost.
  • jul
    jul Member Posts: 40
    edited 30. Nov -1, 00:00
    Options
    That's awful how you have to wait, especially when you are in so much pain. My heart goes out to you. Hope you get an earlier appointment soon.
    Take care.
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    Options
    How are you today and did you see your GP. At least someone could help sort out your pain meds while you're waiting on treatment.
    I do feel for you, it's the pits is'nt it. Just try to keep going and know that we're all here for you.
    gentle hugs. RW
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    Options
    Feeling the same at the moment, very sore, tired and fed up. I did manage to see my GP. He had a letter to say that I've been refereed to a specialist to investigate "Inconclusive shadow on left lung"

    The appointment letter I received is to see someone about results after a series of tests my doctor said, I should get an appointment for a 2nd x ray soon, and then depending on the results of that X ray I will either get the all clear meaning I don't need to wait until August or I will have to undergo more tests which would make August about right he says. All of this should have been explained to me by someone but I guess I have just fallen through the net.

    So in the meanwhile I'm trying to stay positive and hope I get an appointment soon and given the green light to start my new medication!
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
    Options
    You have a lot on your plate right now and staying positive must be difficult. I hope things go as well, and as quickly, as possible.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
    Options
    I'm so sorry to hear what you're going through and really feel for you... It can be unbelievably frustrating dealing with the systems in the NHS that do often leave patients falling through nets and suffering, makes you want to scream. Do you have access to a rheumatology nurse or helpline? They can be a good source of help and advice. When you speak to someone don't try to be brave, if anything make sure you exaggerate how much you're suffering and can't cope (not that you probably need to exaggerate).

    I'm not sure what type of arthritis you have I'm sorry, but I noticed you said your eye is very red and painful. I'm not a dr but my sister has AS which is associated with the eye condition iritis or uveitis, it tends to affect the sero negative spondyloarthopathy sufferers rather than RA. just wanted to make you aware if you didn't know as it's very serious if not treated quickly with eye drops so if its a new symptom for you you should see a dr or optician ASAP.

    Take care and best of luck xxx
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
    Options
    Hi there
    Hang on in there, keep staying positive. Things will improve.
    How am I gonna be an optimist about this?
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    Options
    Cariad71 wrote:
    I'm so sorry to hear what you're going through and really feel for you... It can be unbelievably frustrating dealing with the systems in the NHS that do often leave patients falling through nets and suffering, makes you want to scream. Do you have access to a rheumatology nurse or helpline? They can be a good source of help and advice. When you speak to someone don't try to be brave, if anything make sure you exaggerate how much you're suffering and can't cope (not that you probably need to exaggerate).

    I'm not sure what type of arthritis you have I'm sorry, but I noticed you said your eye is very red and painful. I'm not a dr but my sister has AS which is associated with the eye condition iritis or uveitis, it tends to affect the sero negative spondyloarthopathy sufferers rather than RA. just wanted to make you aware if you didn't know as it's very serious if not treated quickly with eye drops so if its a new symptom for you you should see a dr or optician ASAP.

    Take care and best of luck xxx

    I do have a helpline number if you want to call it a helpline, the service is a total joke. You can only leave voice mails on a Monday and they will get back to you within 7 days, I was recently forced to move hospital due to new NHS rules in wales. At my old hospital the helpline number was manned from 9am-5pm 5 days per week and you could leave a voice mail 24/7. They would often get back to me the same day or next day at the latest and it was very helpful. Trying to get hold of anyone at this new hospital is very frustrating and time consuming!

    I was aware of the eye problem thing with AS which is why I needed to see my gp also, thankfully it's just irritated from something and doesn't look infected or any other bad things going on. It's much better now so I suspect its fine. Thanks for the reminder tho!
    You have a lot on your plate right now and staying positive must be difficult. I hope things go as well, and as quickly, as possible.
    Kittkat wrote:
    Hi there
    Hang on in there, keep staying positive. Things will improve.
    I wish things would continue to go well, everything seems to be against me right now, my GP won't refill my prescription for Arcoxia (Anti inflammatory) and insist that I take Naproxen. This battle seems to crop up every 6 months or so when I run out of prescriptions and is usually resolved by having my consultant phone my GP. Now that I'm in a new hospital and not 100% sure who my consultant even is at this stage is proving to be tricky to get someone to tell them I should have Arcoxia and not Naproxen. I have about 1 week's supply left and hope this can be resolved before then!
  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
    Options
    I'm sorry to hear that, I also live in wales and have recently been forced to move to my local hospital after being under a very good one for 8 years. I was shocked to find out the new helpline is open 2 mornings a week whereas my last one was 5 days a week; I could ring in the morning and often got rang by a nurse or even my consultant in the afternoon! I can't believe yours say they will get back to you within 7 days, what a joke (not very funny when you're suffering :roll: ). Luckily I haven't been too unwell since transferring but I'm dreading the day I really need help and find out how inefficient they are. I had several letters from them with incorrect information to begin with with doesn't instill much confidence :roll:
    Is it South Wales you're in? (You don't have to answer if you'd rather not)

    Re your Arcoxia, I'm also on that but didn't have much problem getting my GP to add it to repeat. When you have a prescription from the hospital for it they would normally give you a copy of the prescription (in mine we give a pink carbon copy) which you take to your GP and it should be all you need to get them to prescribe it. There are guidelines that say first line routine NSAIDS are ibuprofen and naproxen (for straightforward inflammatory conditions not RA and AS etc) but if your GP hasn't got the sense to realise these guidelines don't apply to patients with rheumatological conditions that are being managed by a specialist and thinks you can manage on naproxen with AS (I'm assuming that's what you've got?) then someone needs to have a word with them! It's shocking. You need to be very assertive with your GP surgery about this before you run out of Arcoxia, it's totally unacceptable if a consultant rheumatologist has started you on it that your GP won't continue the prescription, it's not a 'specialist only' or 'hospital only' drug and there is no reason your GP shouldn't prescribe it once the consultant has started it. Also it shouldn't be up to you to try and get hold of the consultant to prove that you should be on the drug.

    I know it takes a lot of effort to fight these things but sometimes you have to. It's the last thing you feel like doing when you're suffering and in pain. I really hope things start to look up for you soon.
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    Options
    Today has proven useful, I went for my 2nd chest X ray and lucky I knew the woman who was doing it. She has helped me a lot today and I have been diagnosed with a partial lung collapse probrably due to AS involvement in my chest, I have the X rays printed out and ready to take with me to see my GP to get things moving. This SHOULD go in my favour now as the only way to resolve this is to fix the underlying cause meaning I need my medication ASAP. Finally things are moving in the right direction!
    Cariad71 wrote:
    I'm sorry to hear that, I also live in wales and have recently been forced to move to my local hospital after being under a very good one for 8 years. I was shocked to find out the new helpline is open 2 mornings a week whereas my last one was 5 days a week; I could ring in the morning and often got rang by a nurse or even my consultant in the afternoon! I can't believe yours say they will get back to you within 7 days, what a joke (not very funny when you're suffering :roll: ). Luckily I haven't been too unwell since transferring but I'm dreading the day I really need help and find out how inefficient they are. I had several letters from them with incorrect information to begin with with doesn't instill much confidence :roll:
    Is it South Wales you're in? (You don't have to answer if you'd rather not)

    Re your Arcoxia, I'm also on that but didn't have much problem getting my GP to add it to repeat. When you have a prescription from the hospital for it they would normally give you a copy of the prescription (in mine we give a pink carbon copy) which you take to your GP and it should be all you need to get them to prescribe it. There are guidelines that say first line routine NSAIDS are ibuprofen and naproxen (for straightforward inflammatory conditions not RA and AS etc) but if your GP hasn't got the sense to realise these guidelines don't apply to patients with rheumatological conditions that are being managed by a specialist and thinks you can manage on naproxen with AS (I'm assuming that's what you've got?) then someone needs to have a word with them! It's shocking. You need to be very assertive with your GP surgery about this before you run out of Arcoxia, it's totally unacceptable if a consultant rheumatologist has started you on it that your GP won't continue the prescription, it's not a 'specialist only' or 'hospital only' drug and there is no reason your GP shouldn't prescribe it once the consultant has started it. Also it shouldn't be up to you to try and get hold of the consultant to prove that you should be on the drug.

    I know it takes a lot of effort to fight these things but sometimes you have to. It's the last thing you feel like doing when you're suffering and in pain. I really hope things start to look up for you soon.

    I'm sorry to hear you have also been forced to move hospitals due to these stupid new rules. The only reasoning behind it is to manipulate figures to show the welsh government has met x y and z target on the NHS.

    Yes I'm from South Wales area, I used to go to the University Hospital of Wales for my treatment.

    The Arcoxia has always been a fight and I'm always told that Naproxen works the same by my GP. It's simply down to money I suspect and they are under pressure to reduce costs in every corner here in Wales. Our NHS system is in big trouble compared to other parts of the UK, the big spending cuts don't come into force until 2016, I dread to think what they will cut next!
  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
    Options
    Goodness you really have had a hard time... I just had a nose at your older post 'bad news' about you moving hospitals and being told you couldn't have infliximab anymore. Did you manage to get back on infliximab or is that what you're still waiting for?

    It seems ludicrous that you've suffered so much from the transfer in 'care'. I'm wondering if the helpline staff on here can help you with some sort of complaints procedure for the nhs? (Forgive me if you've already been down this route but it would take me too long to try and catch up with everything on your posts).
  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
    Options
    I actually work in the nhs and yes, it's worrying what's happening in wales although Im not sure things are much better in England. I was also under UHW until a few months ago, they were great weren't they. The nurses were so lovely and caring.

    If your GP thinks naproxen is the same as Arcoxia he/she needs to do some CPD! Again, shocking that we are at the mercy of rubbish doctors sometimes. There might be some NICE guidance on this you can quote to them.... I'll have a look. Do NASS offer any patient support? I wonder if they could give you some guidance.
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    Options
    I'm currently waiting to start Simponi, I had a reaction to my last Infliximab infusion so I guess that drug wasn't for me. The care at UHW was in my eyes fantastic, on many occasions when I have been having a bad flare my consultant would see me the very same day if a clinic was running, or if not he would certainly make time to see me the following day. The nurses were also fantastic and all seemed to know what they were doing. Now everything at this new hospital feels sub standard, maybe my expectations were set too high?

    My doctor knows exactly why I take Arxocia, but at the same time I'm sure is under a great deal of pressure to bring costs down in the surgery. I once saw a locum doctor there and he told me the only reason they would do such thing is to cut down on costs because "we're" under pressure to bring down our running costs. The days of free prescriptions are limited I'd say and its probably for the better if it results in better access to services.
  • lynnoot
    lynnoot Member Posts: 52
    edited 30. Nov -1, 00:00
    Options
    Do you have PALS in Welsh hospitals? If so, maybe you could get in touch with them.

    I really feel for you, I know how it is to be in pain and feeling desperate.
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    Options
    Yes we do have a service like PALS but I can't remember what it's called. I got in touch with them some time ago and they gave me some good advice.

    Today has been a horrible day so far, I spent the most part of last night vomiting after taking anti biotic I was prescribed yesterday, I have taken 2/4 doses so far today and feel yuck. Hopefully this feeling will go away soon!