I am a newbie wishing to share a rant!

[jill2702]

Hi all, i am a fed up newbie and hoping there is someone out there to reshine the light at the end of the tunnel! I was diagnosed with ra nearly 2 years ago, it took almost a year for them to try me on methoxterate along side paracetamol,ibuprfen and oxycodone. Six months down the line they have temperarily stopped the methoxterate as i have rapidly over a year severely deteriorated to the point of being virtualy bed ridden with excruiating pain. I have had to under go several tests to find out what else is wrong which i finally find out on friday 14th. I feel so let down and frustrated with the nhs they treat you like another number and try to get you out within 5 minutes not explaining anything. Not to mention all the appointments taking so long that your forever chasing and being pushed from pillar to post and in the mean time left to suffer in severe pain! I am really losing the will to live and sometimes wish i would fall asleep and not wake up! I no longer live i am just existing. Wooooooh! Rant over ha!ha!

[cathie]

It doesn't have to be this bad. Why don't you talk to nras about where you are and how to deal with the treatment you've received so far? You can change doctors or even hospitals and you might find people on this forum who live nearby and who have had a better experience. I hope you can get help. Where are you?

[jill2702 in reply to cathie]

I live in waltham abbey essex. Princess alexandra hospital-Harlow/st margerets-epping. My doctors surgery is diabolical. Unfortunately, the nhs health service in this area is the same for all. I have spoke to many people including my own family and no matter what the problem is have all come up against these brick walls. I am not a victim here! Haha! Thanks for the advice, once i get some kind of physical and mental mobility back i shall be looking at complaints and better options x

[Kate23]

Hi I can feel your despair, went through that stage myself about a year ago. My NHS Rheumy nurse told me I had to shout loud and insist on being heard...which is hard to do when you are in so much pain I know...you should have the number for the specialist nurse so please use it, I find they are so supportive. .the NRAS also has regional groups that will support and advise you and are very approachable....chin up...you will turn the corner.xx

[jill2702 in reply to Kate23]

Thank you! I know about the specialist nurse took me over a week to get a reply after being shoved from pillar to post just to leave a message haha! I will try nras regional groups. Thanks for your words of support x

[stbernhard]

Hello Jill, I am very sorry you've such a bad experience. Hopefully Friday will give you a clearer picture and a way forward. Cathie is right, give NRAS a call. They are very understanding and helpful. Keep us up to date. All the very best.

[jill2702 in reply to stbernhard]

Thanks! Will let all know my outcome!

[RAtwist]

Or stay strong at first I felt the same took a long time for my diagnosis different hospital visits to finally find one that understands and helps, once you find out I'm sure you will feel happier wen your all on the same page. I agree hospital opointments are long and rushed but we would all miss the Nhs if we had to pay I'm on another group who is American and they carnt even afford medication so one thing that I keep in my mind when I'm waiting 😀 I think the first few yrs makes us depressed with such big changes having to depend on people and mobility AIDS but you will find a happy place soon and don't be scared to ask to see a different specialist I seen 4 before I was happy lol

[jill2702 in reply to RAtwist]

Thank you! I agree about the nhs, it has always been not perfect and we all do feel like victims, unfortunately the government (no matter which party are in) do not put enough money into this establishment. Constant pain does make you a little narrow minded at times! Thanks for your supportive words x

[RAtwist in reply to jill2702]

There is defanetly light at the end of the tunnel it really drags us down I feel for you 😢 Let me know how you get on with your tests

[Beverley-NRAS]

Hi jill2702

so sorry to hear that you are having such a bad time at the moment. Please do give us a call if you need to talk about things. You can call us on:

0800 298 7650 Monday - Friday 9.30 - 4.30pm

Best wishes

Beverley (NRAS Helpline)

[jill2702 in reply to Beverley-NRAS]

I will most certainly will be calling you in the very near future, there is so much i don't understand! Thank you

[GranAmie]

so sorry 4u Jill - am in similar state, mtx stopped 8-10 wks ago cos went 2gp w/cough. This stopped after steroid nasal drops but she had also referred me 2 hospital 4 x-ray 2be sure .... followed by another xray and respiration tests so my rheum consultnt in different hospital topped mtx. Now had a ct scan nd told v mild bronchiestasis which may be from RA or mtx .... but they have no baseline to check as no xray b4 put on mtx ans as a child i had asthma bronchitis etc but grew out of it. They can't say if old or new scarring - don't think they relise yet they have no base-line xray to check with !! So it has been stand shuffle scream til i strtd ibupprofen and prednisolone off my own bat. We bought a wheel chair 2 help in travel so at least am typing this 2u while in Mallorca oh the sea, the sea, so cool and luvly. Scream at em all, hon nurse gp consultnt i do hope u get a result. At least a scream or 2 vents a bit of the stress and anger and will help your bp let's hope. sen ding virtual hugs xxx

[jill2702 in reply to GranAmie]

Aah what lovely words! Its the first time in weeks i have smiled! I sooooo need a break by the sea and sun and have been yearning for months! Wow, if you can i can! No matter what pain smiling and being happy is most important! I see a glimmer of light at the end of the tunnel......thanks and enjoy your hols you're soooooo lucky! Xx

[nomoreheels]

Hiya Jill & welcome. I'm sorry you've needed to join us but hopefully you'll find the support here that you seem to have been lacking up until now. We understand how difficult things can be especially in the early stages, we've all been there to some degree. You have the extra uncertainty that there may be something else underlying in your case, but there's coping with diagnosis, the frustration of needing the necessary meds then waiting for them to work, the way we all react differently because, well we're all different with varying degrees of severity. You see I'm seropositive & do well on methotrexate but it was my second DMARD after hydroxychloroquine stopped helping, I've tried double therapy (two DMARDs taken together) then MTX alone & now back on double therapy but with sulfasalazine.

It sounds as though you've had quite the runaround but as Cathie has said it doesn't need to be this bad. If it's a breakdown in communication insist that you're listened to & receive answers to your questions. I always make notes about the week before, just bullet-point ones so I get everything over at each appointment. You don't say why your MTX has been temporarily halted but there are other DMARDs available for your Rheumy to prescribe if it's not working or as I've had, increases in dose, so maybe Friday's appointment will reveal more & you'll have a better idea which treatment your Rheumy's considering & will discuss with you to try to bring you under control. There are more suitable NSAIDs too, unless you can't take anything other than ibuprofen, many of us have an NSAID of one type or another as part of our regime which helps stop things bubbling over.

Do you have a nurse helpline you can call between appointments, or for anything incidental? I only see my Rheumy (or one of her registrars) every 6 months but have a nurse appointment in between if I need it. If I was you I'd do as have been suggested & call the NRAS helpline, they may be able to help just now.

Hope you feel a little less alone being here. Let us know how you get on on Friday.

[jill2702 in reply to nomoreheels]

Thank you for your advice, i will be calling nrads for understanding and support. I have been diagnosed with seropositive. I am not to sure why they have temperarilystopped metheroxterate, somthing to do with heamoglobin dropping considerably???? Have had untold tests and scans and will find the outcome on friday. my gp prescribes me with papracetamol, ibuprofen and oxycodone for pain they are not that effective anymore! Just need them for addiction haha! But thank you for your supportive words it most certainly gives me some strength knowing that i am not alone x

[jill2702]

Dear all! Many thanks for your warm welcome and kind words of support to my situation. I wanted to give you all an update of my consultants visit on friday(without the medical jargon which goes right over my head haha). He said that the test results did not show up anything to serious and i will continue with methoroxterate and will increase the dosage after 2 weeks, also would like to try me on another drug alonside it but have to have urgent eye test before taking this. Since diagnosis i have never had a rest from the pain but have deteriorated over 2years. He said my ra is extremly agressive and the best way forward was to be as aggresive with the drugs and treatment as the disease is, everybody is different and its trial and error which drugs are right for you, unfortunately this takes a long time. I had an injection for temperary pain relief, which is currently cicking in now....still in pain but not that constant nagging pain! I feel again hopeful and a light is at the end of the tunnel. Thanks again to you all xx

[snis]

So glad I have joined NRAS such helpful people thank you so much xx