Arthritis getting worse: Hi everyone... This is my... - NRAS

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Arthritis getting worse

Aimee90 profile image
23 Replies

Hi everyone... This is my first post and my first time properly on here.

I'm 27 and was diagnosed with RA about two years ago. It has gotten gradually worse over time particularly in my hands, not helped by the fact I took a (very) bad reaction to methotrexate and now cannot take it. I have been living on painkillers alone, worryingly reaching a dose of around 140mg of Oxycodone daily, along with paracetamol and Naproxen.

Recently I've become more concerned because my right hand is effectively starting to succumb quite badly to the arthritis, leaving me in huge amounts of pain and gradually losing strength and flexibility completely. Being 27 this worries me to death; will it reach a point where I can't work or complete everyday tasks? Sorry if it seems like I'm venting, but I feel like I have no one to talk to and no one who fully appreciates the physical, emotional, and mental effects this is taking on me. I've seen my doctor who gave me yet more painkillers, but I don't think that's adequate. I'm so grateful for the NHS but feel like my GP and consultant at my local NHS hospital are not listening when I tell them how sore and weak my right hand has become... I'm at a complete loss.

I've been looking into BMI healthcare as I feel that a private consultant might listen to me better and offer a long term solution instead of constantly upping my painkiller dose! Does anyone here have experience of moving from NHS to a private hospital to get treatment? If so was it worth it?

I would so so appreciate any advice, even just the chance to talk to people feeling the same way, a total prisoner of RA.

Thanks in advance!

Aimee 💜

23 Replies
SoulmanPaul profile image
SoulmanPaul

Hi Aimee and welcome. I'm sure everyone on here can empathise with your situation so you're in good company. Can I ask has your Rheumatologist not suggested alternative meds? Many of us start off with Mtx often with Hydroxychloroquine and even add Sulfasalazine later on if things aren't progressing so well. There are many other drugs too including biologics so I'd be surprised if it was a case of Mtx or nothing.

Paul

Aimee90 profile image
Aimee90 in reply to SoulmanPaul

Hi Paul,

Thanks for the reply, appreciate it 😊 nothing has been started yet... I was supposed to have an appointment on 21st August but they wrote to me and cancelled it a few days before. I was told I'd get a new appointment by post but have yet to hear anything. Tried going again to GP and phoned to see about my new appointment but was told only that they would write to me. Feels like I'm at a dead end.

SoulmanPaul profile image
SoulmanPaul in reply to Aimee90

Aimee you're welcome. Oh my...can understand why you feel like that. Hopefully things will improve once you finally get to see them. The more stories I hear the more I realise how lucky I am to have my hospital and Rheumy team. Within a week of having an appointment my next one comes in the post. They've also got a helpline staffed 5 days a week by a Rheumy nurse specialst so any issues get sorted quickly. I wish everyone had the same!

Paul

Aimee90 profile image
Aimee90 in reply to SoulmanPaul

Glad you've got such a good support network. I hope I can have the same one day soon! Feels very lonely having no one around to confide in or understand what it's like.

SoulmanPaul profile image
SoulmanPaul in reply to Aimee90

Well thank you-if only I had the same support outside of hospital! Thats why this place is a Godsend. You've got friends here...always someone listening even if you just need to vent. We all need to on occasion.

Paul

Aimee90 profile image
Aimee90 in reply to SoulmanPaul

Thank you so much, means a lot to me knowing there are people to talk to... I've got a wonderful family, but I think only others going through the same thing can really understand and relate

Aimee

ITYFIALMCTT profile image
ITYFIALMCTT

What a mess for you - I don't understand why you were advised to discontinue MTX without a clear plan for a washout period (if necessary) and then trialling another DMARD.

Of course you're concerned as losing function in your hands has such a huge impact on your day-to-day life almost irrespective of the pain level. It makes every tiny thing from dressing to opening doors or even putting your hand in your pocket such a mammoth of planning and performance.

Most health insurance doesn't cover medication - just the testing, consultation fees, perhaps imaging and any necessary surgery. So, if you have a clear diagnosis then there might not be much to be gained from a private consultation - you need access to your rheumatology team. If you don't have a clear diagnosis, then maybe a consultation might be helpful.

You might want to phone the NRAS Helpline and have a chat about your situation to see if they can advise something for you?

nras.org.uk/helpline

Good Luck!

Aimee90 profile image
Aimee90 in reply to ITYFIALMCTT

Thank you, I'll definitely give them a phone 😊 yeah the MTX was stopped suddenly as it gave me a seizure, but nothing else has been put in place... Kind of reached a head the other day when I started struggling to even get my bra on myself! I just keep thinking I'm only 27... How can something like this be happening already...

I had looked into BMI for healthcare options, even just a consultation to get a new opinion on everything. I'll definitely phone the NRAS helpline first though to see what they think!

Thanks again

Aimee

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Aimee90

I've just realised that you're about the same age as Hels1989 so you might have the same 'How can this be happening at this age' shock.

Hels1989 profile image
Hels1989 in reply to ITYFIALMCTT

I'm here! I'm 28 honey. Got diagnosed as sero negative 2 weeks ago, started hydroxychloroquine a week ago and due to start Mtx in a weeks time. I'm still very much coming to terms with my diagnosis. How are you honey? Xx

summer32 profile image
summer32

Hello key is for the right. Medication to be found. Are you in UK? I couldn't tolerate methotrexate after a while so had to stop talking it. Had a bad reaction to sulphasazaline. Gold injection worked well for a while. I'm just starting hydroxy chloroquine. They have several drugs they can try ans several biological drugs. Try to get referred to occupational therapists for hands or a specialist hand therapist x

sylvi profile image
sylvi

Hello Aimee i haven't read the other answers to your questions,but i feel anything i say will have been said before here. Darling you can vent all you like as we all have done it the past and we have all been where you are now. Welcome to our lovely site and i look forward to following your progress with your journey with this dreaded disease.xxxxx

Witness2 profile image
Witness2

Hi Aimee, I am so sorry to hear that you've been abandoned. I agree you should phone the NRAS Helpline as a priority. They will advise next steps in your situation.

I was 24 at onset so I can imagine how you might be feeling. I am now 60 and just want to say that the outlook for RA sufferers now is amazing compared to way back then but you must fight for treatment - you need to get your disease activity under control, fast. There can be a great life ahead despite this rotten condition.

I had private health insurance when I was diagnosed and would strongly recommend an appt with a private rheumatologist so you can find out what's best for you. I wouldn't bother with private health insurance because you have a 'pre-existing condition' which means they'll probably exclude it from your cover. Could you afford to pay for a private consultation? If so you could see someone within days! Trouble is that although you might pay £200ish for the consultation, the blood tests and other diagnostics could cost hundreds more so make it clear to the Rheumatologist that the appt is as far as you can go. I know some private rheumatologists fast track private patients onto their NHS list so you might get lucky 😊.

Whatever, it's appalling that you have been left in this situation and I urge you to make a big (polite) fuss!

Keep in touch, you aren't alone with this. X

helixhelix profile image
helixhelix

I get so sad when I hear of such poor treatment, and a bit cross! Really feel for you being left in this position.

I think you need to get a bit pushy, and start phoning the hospital and your GP daily to nag them to give you an appointment, or ask to be referred to another hospital with more available appointments. Also talk to your GP about whether you could be prescribed some effective anti-inflammatoires or a short course of steroids to help you through this bad period. (But you will need to stop them well before an appointment so you don't mask your symptoms). If you haven't had one recently also ask for blood tests to check your inflammation levels, as if they are rising it will put pressure on doctors to treat you. You are the expert in your own body, so you need to convey this to your doctors in ways they can understand.

As others have said, private consultations aren't likely to help much. Private insurance rarely covers pre-existing conditions, so if you have a firm diagnosis you won't be covered. They also don't cover chronic conditions, apart from sudden flares, and can't prescribe biologic drugs.

Tessthomy profile image
Tessthomy

Aimee. It sounds like you’re getting properly fobbed off. I know that when you’re in a flare and not feeling great it’s so hard to be assertive with people. Bur you have to be unfortunately. Make sure you ring the hospital and get an appointment directly from them. Once you’re in get telephone numbers of the rheumatologist nurses and helpline so that you can call them when you need to in future. Our hospital here has a few numbers that we can use in the rheumatology dept as long as it’s not abused it’s there to be used in an emergency if the gp is too overloaded. Also if you go the private route there is a chance that you may slip between them both..Notes get lost and no proper treatment get offered as it can all get mixed up..I’d persist down the nhs route and good luck ..let us know! TT x

Soreknees2016 profile image
Soreknees2016

I would just reiterate what many others have said - get pushy, you shouldn’t have to put up with this pain without at least the comfort of knowing you have a consultant appointment. I normally find that calling the hospital to speak to the rheumatology secretary is the most direct route to getting an appointment, so that might be worth a try. Good luck! 😀

Annieb24 profile image
Annieb24

I struggled to get an appointment and in the end got the doctor to agree to me trying the hospitals in the surrounding counties. Apparently they can open up the referral to several - I think I had about 3. If you are in a location with other hospitals reasonably nearby it is worth a look. My referral was in the neighbouring county about 3 months earlier than where I live.

Regarding the private - I have been tempted many times. You will need to get together all the history, scans, blood tests and take them with you, otherwise you will be presenting with only a snapshot of how you are at the time. This also applies if you get a rheumy appointment out of county as they probably will not be able to see your medical records.

Good luck.

Pam-51 profile image
Pam-51

Dear Aimee,

So sorry to hear your story. I too was diagnosed aged 23, but thar was 43 years ago! You should be receiving very active treatment at this stage of your disease to prevent irreversible damage to your joints. Modern day treatments are extremely effective and should be instigated in the early stages of the disease process to prevent the potential long-term problems.

I have always said I was born 40 years too soon to receive these effective therapies and your story makes me very sad. Please do your research on this disease and be proactive to ensure you receive the best treatment. I found that it was necessary to combine private treatment alongside NHS care if you can afford to do so. Remember that nothing is worth more than your own wellbeing.

Find the best Rheumatologist in your area. Where do you live? Use this site to help you. You will have to try a number of therapies to find the right combination that suits you and persevere until you are satisfied. The newer biologic therapies are amazing and you will find something that works for you. So be positive, proactive and educate yourself so that you can get the best treatment for you.

Best wishes and my thoughts are with you.

Pam X

Boofjp profile image
Boofjp

Hi Aimee, I know what you mean and I know how you feeling. I often feel like all I do is complain to my friends and my family and all they want to do is listen to me but don't understand how I feel. Sometimes I feel like I just want to stay in bed and not move but net makes it worse. Try to stay away from sugary items such as chocolates cakes cookies I tried to eliminate the sugar out of your coffee or tea. I'm not saying you can't ever have it but they say it does help and sometimes it does help me. There are herbal Alternatives it didn't help me I hope it will help you but just know you're not alone out there we're all here listening to you and we know how you feel. I have been on Methotrexate, Humira, embrel and several other meds which all killed my stomach and gave me really bad side effects. I do have a friend that does effusion and it seems to be helping them but the alternative he wound up with leukemia which is now in remission and is doing great..

Paulajolo profile image
Paulajolo

You could write to PALS ref you are not receiving enough treatment. Have you been offered any Steroid injection it's fantastic for pain relief. Ask NRAS about this when you call them. I am in Leeds and have a fantastic Rhumy care team now but when I was first diagnosed I was getting very little attention until I complained to PALS. hope you get the help you need soon. They are supposed to treat RA early to prevent joint damage.

philfen profile image
philfen

Hi Aimee,

Doesn't sound right that you've been kept waiting for so long.

I had to wait a long time for my first rheumatology appointment, so I went private to start with.

Cost about £180 for my first appointment, then £120 after that, wasn't an ideal thing to do , but got seen within a couple of days.

Please ask me if you need any more info.

Ended up seeing the same doctor on the NHS.

Phil

Neonkittie17 profile image
Neonkittie17

Hugs Aimee. Hope you can speak to the NRAS people and be advised. They helped me a few years back. Lovely people.

Yogi-bear123 profile image
Yogi-bear123

I think it's terrible the way that you've been treated. I would say do your research with the rheumatologists so in your area and see them for a private appointment if u can afford it.Anyone decent would then take a referral from your GP to see u on the NHS. The whole procedure does take time,but maybe if you find someone in your local hospital it might be quicker. I did that as was really mucked about in my local hospital for a couple of years,ended up moving to a London hospital. Not ideal geographically and did take time,(6 months) effort and constant ringing up and chasing for it all to go through. But finally feel that I am being looked after. In the interim,the rheumatologist gave me steroid jabs privately to get me through. U can also get them to write to your GP to instruct on any medication. ( plus any jabs) They do need all relevant blood tests and information,and might actually feel they need to repeat them.( I tested negative for RA at the GP then positive when I was re tested. ) which is an added cost but presumably they could instruct your GP to do them. The other thing they might try first us one of the new antiinflamatories ..can't believe your GP hasn't prescribed...change your GP??... Be persistent and GOODLUCK.

All the best

Anya

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