I realize people are a lot worse off and I am sorry...

Sky

...to be moaning but I would like some help as I feel like I am unable to cope very well.

I have it (psoriatic arthritis) in my spine, knee, hip, feet and hands. My rheumy put me on the only nsaid's left to try, but they irritated my stomach like all the other ones. I have been on omeprazole for years (unrelated to nsaid use). I cannot bear stomach pain all the time. Each time I visit the doctor I am reminded of the cost of treatment should I need to progress to the next level of therapy - dmards or whatever they're called. He says I am not severe enough to warrant these drugs and is doing tests including mri to, well I don't know why.
The trouble is I cannot cope with just codeine (zapain) as it is not strong enough. It's like jumping out of the 8th floor instead of the 10th. I have a toddler to care for all day and my husband works full time. Sometimes I can't move out of the chair, it's ridiculous. I know it is mild compared to others but the amount I have to do and the trouble I have walking is a major contributor.
How bad were you when they allowed you to receive treatment? Is there any alternative medicine, I take vitamins and glucosamine and cod oil. Is there any advice anyone can give (if you're allowed) to help me cope with living in pain?

bubbles

Hello Sky, lovely to meet you and a welcome to the forum, from Bubbles.

Now, don't you go thinking that you are moaning, not for one minute. We are all here for a reason, with similar problems and varying conditions. We all help and support each other, offer advice if we can, a listening ear, share our bad days and our good days. So no more thinking that you are moaning, you are simply saying it like it is.

Constant pain is very distressing and can cause depression and altered moods, I am sure that you GP or Rheummy could offer alternative treatment. Codiene is not the only pain killer, often a mild anti depressant can help, not only with easing some of the pain, but also helps to lift the mood. There are other things, like Gabapentin or Pregabalin, the latter, changes the way the brain receives pain messages. It can take a while to sort out the right dose for a person, but I am sure there is something that they can offer, you have enough on your plate without feeling like you have hit a brick wall. Your GP could also refer you to the pain clinic, there will be one at your nearest hospital or clinic.

Each person should be treated as an individual and not a case of waiting until things are so bad, before starting treatment, every person needs treatment at different levels of an illness. The cost of treatment is not your problem, don't be fooled that Britain is bankrupt. I must cost my surgery a King's ransom every month, but that's the way it is.

So many of us live our lives with pain, it is striking a balance between the right amount of the correct medication and knowing your own body and listening to what it is saying. (everyone will be thinking, yes Bubbles, you are the worlds worst for not resting when you should).

Alternative medicines, well, I am not up to speed with all the latest herbal remedies, but I am sure our friends on the forum will be along to help.

In the meantime, don't think you are alone, if you need to rant and grumble, then feel free. You take care, rest as much as you can, make an appointment to see your GP, one who will listen to you.

Bubbles.xxx

donnas

Hey, Sky. I would be moaning too in your situation.

If your doctor isn't prescribing DMARDs for the reason of cost alone they are not doing their job properly. My RA appears to be much less severe than yours and I am prescribed two different DMARDs to prevent further joint damage from flare ups. Can you seek a second opinion? Do you see a rheumatologist or just your GP?

Wishing you well. I'm sure the good people of these forums will be able to help!

tillytop

Hello Sky and welcome! Glad you have found us - but sorry you have needed to. Please don't ever feel you need to apologise on here - we are here to listen and, support as best we can and we have all been there so we really do understand.

You are obviously really having a tough time and I too am very surprised that, with active PA, you have only been offered NSAIDs and painkillers. I am also surprised that you have been prescribed NSAIDS if you already have stomach problems (which I guess you do if you are taking Omeprazole.) It really does sound as if you need to get going on some disease modifying (DMARD) drugs to try to get things under better control for you - and sooner rather than later! Perhaps then you would be able to stop or reduce the NSAIDS. My understanding is that, these days, the aim is to start DMARDS at the earliest opportunity to try to prevent joint damage caused by ongoing inflammation so I'm not sure why you haven't been offered these drugs so far. Cost shouldn't be an issue because as far as I know, the standard DMARDS are not particularly costly - it is the newer biologic drugs which tend to be rationed due to cost. I think that, if you are not getting appropriate support from your rheumatologist, then a second opinion is a good plan. Is there another GP in your practice who you could talk to about organising an appt with a different rheumatologist?

Please do continue to post Sky and we will do our best to help. And please know you are not alone with this and the good peeps on here will do a fantastic job of advising, supporting or just being a listening ear when needed. Also, if you think it would help to talk to someone, the AC helpline are a great support - number at the top of the page.

Thinking of you.

Love Tilly xxx

constable

Hi Sky

Sorry to hear that you are in so much pain and that your doctor is being less than helpful, Can you not try another doctor, get someone more understanding about your situation. Also that you are looking after your little one, it must be a terrible strain on you. I think considering looking after your little one and OH, you amazing, as should be able to get a lot more help. See if you can see another doctor.

Keep us informed as to how things are going with you will you.

Karen xx

Starburst

Sky, you have every right to vent here. That's what we're all here for. So please don't feel you have to apologise. I'm no expert but I thought DMARDs were often prescribed to prevent joint damage and to prevent patients progressing to the next level. I was told it's better to start patients on them when they present with the disease early on. How long ago were you diagnosed? Cost definitley should not be an issue. My GP told me methotrexate (a commonly used DMARD) is frequently prescribed not only because it offers symptom relief but because it's relatively cheap! I wonder if you felt able to speak to your GP and request a 2nd opinion. You are entitled to one on the NHS. I requested one and struck gold with my current rheumy.

I'm sorry to hear you're suffering and it's very unfair on you.

Take care of yourself.
Sophie x

barbara12

Hi Sky
Please dont apologize for having a moan, it will help you a lot to talk to people that understand some of what you are going through.
I have OA so I cant comment on your meds, but hopefully the others will have some answers for you.
I can only imagine how hared it is looking after a toddler when you are in so much pain
I really wish I could help more, but you know were we are when you need us
Love
Barbara xx

madwestie

Sky, it is understandable for you to feel like this.
has your gp referred you to a rheumatologist he should have.
They say that you should be put onto Dmards earlier as they stop any degeneration.

Hope you get something sorted out soon

Tracey

woodbon

Hello sky, I am glad you have found this site but, don't apologise for suffering pain, its the kind of thing that colours the whole of your life and stops you enjoying it as you should being a young Mum.
As for people being worse off than you, well everyone can find someone like that and you can't compare. It's YOUR pain that needs to be sorted. Have you got a good gP that you can talk to about the problems or a nurse rheummy or practice nurse, talking it through might help you. I don't have inflammatory arthritis, I have OA so I don't know about the medication.

I do hope you can soon get sorted. You could try talking to the Helpline here, they are very good and can help you with leaflets and things, also just talking might help you. Love Suex

Poppyg1rl

Hi Sky,
Welcome to the forum from me too, you've been given some great advice from the lovely people here, all I can add is why don't you give the helplines a call? the numbers at the top of the page, they're are so kind and full of information that may help you. I can only echo the other wise people on the forum and say you are not moaning, you have every right to feel the way you do, pain can be utterly soul destroying. Especially when you have a young family I know.
So sending big hugs your way Sky, and hope once you go back to your gp armed with the info from here, you start getting the care and meds you need and deserve. (((()))) xxx

Sky

Thank you to everyone for the welcome and all the help. It is my Rheumatologist who keeps saying "these drugs are very expensive". I have written him a letter of complaint about it but it has been ignored. Strange thing is that when I first started seeing him I was relieved I'd found a good doctor. Couldn't have been more wrong. I can hardly move for 2 hours of a morning but that is mild because I can still walk once I loosen up I suppose. Maybe he thinks I'm exaggerating for the fun of having to take these drugs or something, I don't know. They don't look after you very well do they? Don't help I live in the south west I suppose

tillytop

Hello again Sky.

Does sound as if your rheumatologist is not helping you much and I really do feel for you. I wonder what drugs he is thinking of when he talks about the costs because, under NHS guidelines, people aren't allowed to progress to the expensive new biologics until they have tried DMARDS anyway. Not being able to move for 2 hours in the morning is not insignificant Sky and it seems very unfair to me that you are being denied the opportunity to try the drugs which could help you.

Do you have a good relationship with your GP Sky? If so, he or she might be able to help you secure an appt with another rheumatologist because I really do think that's what is needed.

Really hoping you can move this forward soon and get some help.

Thinking of you.

Love Tilly xxx

Sky

it was something beginning with s and think was dmard. he said they damage your liver anyways so prob best not take them anyways if u can help it. ?I dont really fancy taking something like that but...

I did go to my gp and she gave me amytripline but when i went to see the rheumy he said its worthless dont take it :roll:

tillytop

Oh Sky - I am truly shocked by what the rheumatologist has said. Was the drug perhaps Sulphasalizine? This is a very commonly used DMARD, not expensive as far as I am aware and yes, like all the DMARDS they have the potential to affect your liver but you are very closely monitored while taking it with regular blood tests. And if the blood tests indicate that the liver is not happy, the drug can be stopped and usually , I believe the liver will go back to normal. Sounds as if your rheumatologist is in the dark ages . Docs used to take a "softly softly" approach until it was realised that long term inflammation can cause damage to the joints early in the disease so now the standard protocol is to "hit it hard" at the beginning to try to get things under control.

Re the Amitrypiline - I started a thread the other day asking about this drug and, if you have a read you will see from the answers people have given that most people who take it find that it does help them. I will "bump it up" on the forum for you so it's nearer the top.

Does your hospital have a PALS (Patient Advice & Liaison Service)? I think most hospitals do and I have read on other threads I think that people have found them very helpful. Maybe that is a way you could get some advice about how to go about getting a second opinion.

Thinking of you Sky.

Tillyxxx

Dottydoodah

Hello Sky

I just wanted to give you a hug. Cant be easy coping with a little one with all that pain. God knows its bad enough just looking after yourself!
Dont get me started on NHS doctors. I'm on a real downer with them right now. As Tilly says contact PALS. If we all keep quiet and do not stand up for ourselves nothing will change.
Hope you get things sorted

Hugs Nicki

Sky

Thank you and I will have a look at the thread

psyart

Hi Sky ~ what part of the south west do you live in? What is your rhummys name??

I have PA and the hospital i go to and my doctors are really good and i have been given the treatment i need to help me ~ they do change my treatment when things dont seem to be working.

every hospital is different in the way they treat people ~ everyone on here has different stories to tell ~ but you do need to try and get better treatment for your condition.

take care

Louise xx

skezier

Hi Sky,

A belated welcome from me, I apologize i didn't see this thread.

I also in the south west and this lot .... the trust here is always denying people good treatment on the grounds of money.

If you have pa then you should be on a DMARD really and I don't think your rumo is being very caring there and would see if you can get a second opinion..... mind if you down this end that isn't either :roll:

As the others say its actually important your given a DMARD to make sure damage isn't done and also keep it held down.

The other thing ... omprozole.. its not necessarily strong enough flowr and maybe with a better one you could have the anti inflammatories.... or why haven't they tried patches? A lot of tablets have patch equivalents and they are not all strong and heavy duty and really the co's alone just isn't playing fair with you at all.

I think if you ask for a second opinion and see what they think it might be a good plan actually. I really think your rumo could be doing a lot more both for pain control and treatment.... hey and I thought I had it bad....

They wont let me have one of the anti's, even though I have failed on 2 DMARDs cus of cost but at least I have the 25 ml of mtx.

You got to push this one flower.

Nice to meet you and hey we all moan and I think you have every right to. Cris x

madwestie

Sky,
i am appallled by the way you have been treated you should not have to just put up with the pain and stiffness and taking 2hours to losen up in the morning is not insignificant.
Can you speak to your Gp about seeing a different consultant. Yes all Dmards can affect your liver but then the disease can affect other things so on balance having the treatment and being monitored was preferrable to me than waiting to find out what the Disease had in mind next. Like cris i an on 25mg inject Mtx also with Plaquenil. It was the Rheumy who told me to take Amitryptaline to help with the pain..
I really does my head in that different doctors tell people different things about the same disease. it make an already hard choice even worse for us.
I think you are doing really well looking after a toddler with the PA and no effective treatment you deserve some additional help.

Sending you big (((((((((((((((Hugs))))))))))))))

Tracey

Sky

Thank you to everyone for the replies. I have now had an MRI but the consultant wouldn't include my head. Fortunately my doctor added it. I haven't heard from the consultant yet but apparently, according to my doctor my neck is riddled, so can't imagine how bad my back is. I am guessing this is what causes my terrible headaches.

I wrote a letter of complaint about being harrassed about cost all the time and I was told that cost is always mentioned to make patients aware of guidelines. I don't know what'll happen but I doubt I'm going to get anywhere with the consultant I have - especially now I've complained!

For the people who asked I live in Cornwall but I visit Derriford hospital in Plymouth. My doctor there is called Lee.

bubbadog

Hi Sky, I just wanted to say Hi and welcome and that you shouldn't feel bad about expressing youself, and you are in the right place for help and advice. You shouldn't worry about talking about your pain, we are all in the same boat and we all understand how much pain you must be in. I'm not on any of the drugs you mentioned because my osteo-porosis is so severe and spread that all my doc & consultants can do is give me pain management. So don't feel bad about asking any of us any questions we are all here for each other. Hope some of the other guys can help you. All I can do is give you a big ((HUG)). Take care and welcome. Amanda.xx