I've had a growing sense these past few months that my meds (sulfa and hydroxy) are no longer working as well. I have increased hand and wrist pain, new pain in ankles and feet, and now shoulder pain. All that and increased fatigue is forcing me to reduce my working hours, which is problematic because I'm self employed.
The problem is I'm getting nowhere with my GP who insists rheumatology needs to deal with me because my case is complicated from being seronegative with consistently low CRP markers, as well as also having asthma and LPR.
A couple of months ago I emailed the rheumatology dept. and got no response). I then called their advice line to find out you're no longer allowed to leave a message for a nurse to call you back and instead have to contact your gp for a referral if you want to be seen by rheumatology! I even called the rheumatology secretary and was told that's just how it is now.
Finally got my gp to refer me over a month ago, and...nothing. No phonecall, no letter. Zilch.
I know the system is struggling (I haven't seen or heard from a nurse in two years) but I'm at a point now where I honestly don't know what I'm supposed to do. I'm in constant pain and battling fatigue and getting behind with work. I just turned 47 but feel 97.
What do you do in a situation like this? I feel like I've been stranded on a desert island with no help coming. And if it does come I'm half convinced they'll take one look at my (historically) low CRP and say I'm making it all up. Luckily I've been taking photos of inflammation and keeping a pain diary, but still... Ugh.
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mjrminor
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If they are insisting that another referral from the GP is needed, then that is where you have to exert the pressure. I would ring the GP (every day if necessary) politely insisting on action. They have the facility to contact the rheumy depart for an urgent assessment and change of medication, possibly covered by steroids until it works.
Oh, sorry I dont think I wrote it clearly - the gp wrote the referral they asked for a month ago - it's rheumatology that's now gone silent. Perhaps I could ask a different gp at my surgery to chase it up - my current gp has made it clear he's not getting involved.
That’s a bit of a nerve isn’t it - doesn’t want to get involved! When I read this sort of thing and others like it plus my own recent experiences and those of other people I know it really is all very worrying. It’s all very well saying to keep on at your GP but there comes a time when you just can’t face it any more - especially when you feel awful. I’m finding it very hard to have any faith in doctors these days.
I’m sero negative like you and have low CRP - I went totally gluten free when I developed inflammatory arthritis six years ago - it was one autoimmune condition too far - and I think that might be keeping my CRP down, it certainly reduced my thyroid antibodies.
Good luck with it all, it’s a horrible feeling when you can’t get the help you know you need.
You're totally right - trying to find the energy to fight your corner when you have no energy is exhausting. It shouldn't be like this, but I guess that's the situation we're in right now.
I’m s-negative so understand the low CRP . Your under a rheumatologist so should be getting care and continually monitored . Time to complain to PALS I think. Maybe contact your MP . Could you afford a private consultant who’s also does NHS? You may then transfer to that consultant.. x
I'm with J1707 contact PALS. If you get so bad then i think you might consider going to A&E as a last resort, If it is that bad then seek medical help xxx
Thanks J1707, I've been thinking about a private consultant as an alternative if I don't get anywhere. I hadn't even considered PALS, so thanks for the suggestion. Since I moved to the area two and a half years ago, I've had little contact from this rheumatology team, and just one face to face in August 2019 which lasted ten minutes.
Shocking.. that’s not care !! I’ve found we have to be proactive or we are forgotten. Even if your stable there should monitoring and checkups. Substandard care . If this was me I would contact pals and still have a private consultation. I don’t know where you live but if you ask on here if someone has a good consultant in your area they maybe able to help . Please let’s us know how you get on x
Thanks J. And yes, this is turning into a real eye opener for me. No check ups at all. My gp takes care of quarterly blood monitoring but is reluctant to get involved in anything else concerned with RA. I'm in West Somerset. I know that Bath has the Royal National Hospital for Rheumatic Diseases, so I'm going to get my GP to do a private referral there.
That’s it get the ball rolling. You can contact the consultants secretary direct ( I have in the past). GPS drag their feet on referrals. Ask on here for a recommendation you could be seen within a week .x
I'm sorry your going through this, it certainly isn't right. Your rheumatologist should have a helpline number for their patients and frankly this level of care is not acceptable. My crp has never been raised due to being sero negative as well.
Thanks Pinkypie. I dream of being one of those people who say they have a wonderful team taking care of them! It's crazy I dont even have a helpline to call anymore.
When did you last see/speak to the rheumy? Two years and no contact from a nurse is not acceptable .. did you remind them of this when you got in touch? You’re doing all the right things with the diary and photos. Keep calm and firm when you tell them anything. I think it would be an idea to make it known to the rheumy and doc this is starting to really affect your ability to work enough and approach it that way.
My excellent ex GP used to say he couldn’t do anything RA wise to change but he did email the rheumy to say I had been left to do nothing awaiting a new med which was taking too long to arrive so some docs will put some pressure on. He did change things for pain relief and let them know as rheumatology never really organised pain relief anyhow. Always the GP. He did write to the rheumy to say I must never be left so long waiting for my infusion which caused my slump so rapidly and he was prepared to go to the local press and TV for me when rheumy admins/pharmacy and healthcare co bungled a new med arrival and I was stranded for two months in bed. Bad RA days but I wasn’t working at the time so didn’t have the issues you have. Please keep at them. 🙏🏻💗
Wow, can I borrow your old GP? Mine just doesn't want to get involved - he even complained at having to write a referral in the first place because of the rheumy helpline no longer being a thing. I've seen the rheumy face to face once in the summer of 2019, then via zoom in January of this year after asking for a review. It lasted ten mins and I told her then I was having hand pain but she told me to continue taking 8 paracetamol a day for pain relief. I cant take NSAIDS because of asthma.
That's appalling! I AM one of the lucky ones with a great rheumy team (and GP) which proves that it can be done even in these difficult times.
Good advice re PALS and trying the private route. I'd also suggest ringing the NRAS helpline as they might be able to confirm what you have a right to expect and some ideas about the way forward.
It's completely unacceptable that you've been put in this situation 😡
Thanks Boxerlady. The fact everyone is saying the same thing makes me realise what a shambles my treatment has been the last couple of years. I'll be definitely getting on to PALS first thing Monday.
Shambles is an understatement!! The treatment you have had is appalling! I would be furious. In fact I am furious on your behalf!
Phone PALS, write a letter to your consultant copied to your GP and your MP, and make a FUSS. No you shouldn’t have to, but looks like little option.
If you can afford a private consultation that might help things in the short term, but you need to get an acceptable standard of care from the NHS too.
That sounds terrible! When I’ve got ‘stuck’ I’ve paid a couple of hundred to see rheumy privately. He/she can then put you back in the nhs system. I’m so sorry for your trouble. I can’t believe as a patient you can’t phone the nurse helpline. I think they are breaching some kind of rule there tbh. Suggest PALS for some action and NRAS helpline for a bit of support. Good luck.
Thanks. I'm going to contact PALS today. The whole helpline debacle is insane. Even my useless GP said what is the point of a helpline if they're just telling you to go through your gp instead?
What a shocking read this is. I’m with Madmusiclover above, surely they are breaching the code here, you are under the care of Rheumatology, so they have to monitor you 🤷♀️ and look at your meds if Hydroxy and Sulfa is no longer working. Just prescribing paracetamol is a disgrace.
Definitely go to PALS, that’s what they are there for.
It’s very draining and hard work having to fight your corner.I’ve been telling my Consultant 10mgs of Methotrexate isn’t enough to control my symptoms, I even wrote to her via email. In the end I had a major flare a few weeks ago and had to have a steroid jab to control it. It’s very difficult to get hold of them at the best of times, but be persistent.
Good luck, I really hope you get something sorted, as you can’t go on being in pain like this.
Thank you. It sounds like persistence is key. And refusing to take no as an answer. I'm feeling so beaten down by it all but I know I need to do something or nothing is going to change.
I felt totally demoralised by the medical profession and their lack of care, if you don't fit into the box, or your immune system has not read the book on how to behave then it is your fault. I refused to accept that and refused the anti depressants and the sleeping tablets .....what a shambles....I could have been sitting in a chair doped up had I not challenged.
I did receive a letter from my rheumatologist saying my care had been 'sub optimal', I was referred for biologics and started them 3 weeks after I confronted her. I got a repeat MRI which showed extensive tenosynovitis and bone erosions. Yet my bloods were and always are normal, neutropenia excepted.
Don't give up, its worth challenging, misdiagnosis is common in general, and very common in the field of rheumatology.... challenge and don't be frightened to complain in writing, an oral complaint can be dismissed.
You probably would not accept a poor job from any other service provider, Drs are no different and are trained and paid from the public purse.
Start by finding our who the rheumatologist’s secretaries are and ring them. Also ring the switchboard and get the numbers you need for the outpatient department. I had a review booked April 2020 to have a review and change meds and no prizes for guessing it was cancelled. Two face to face appointments, two depo steroid injections and a should injection I finally persuade them to start me on abatacept. The reason for the deferment in September was due to waiting for me to get the vaccination, which took until March. The answer is do not take no for an answer, remember you are not being a nuisance and politely remind them that you are in pain and have a degenerative disease that needs controlling.
If all else fails find out who the lead clinician is and write a polite complaint letter, to this they have to respond and then you will be reviewed.
Hm. Are there other RA treatment centers? Where are you located? I know it took me 4 weeks to get into mine and when I attempted to get a second opinion another 8 weeks! I know there is a national shortage of Rheumatologists! Once you "get in" you are golden but geez in the meantime. What if (just an idea), you went to the ER? I know they would treat you but I'm wondering IF that would result in immediate referral action to a Rheumatologist? No one wants to go to the ER given what's happening now BUT if things get so bad it might be your ONLY option? Also, (if this helps), I know an ER nurse and she said (really) she said things have been very SLOW in the ER since Covid came about. People are afraid to go to the ER, they go to Immediate Care for treatment. Maybe it's worth a shot? I feel so bad for you. TERRIBLE situation to be in!
Total nightmare for you. Resonated with me feeling twice the age you are. I'd follow up with RA dept as you now have a referral ask to be put on getting an appointment if a cancellation. Be prepared to go in last minute.
Also explain need them to liaise with your GP to have interim steroid prescritption
to at least give you some relief.
It's so difficult getting ones to realise the pain does not really respond to usual pain relief offered.
Only getting medication that can reduce the systemic symptoms goes some way to getting relief.
Sadly you are not alone in haveing problems getting through to them.We live in troubling times, its as if the NHS is being deliberately run into the ground. The only reason for this is so people except privatisation. It wasn't working anyway and private health care is so much cheaper ECT ECT.
I know this doesn't help you, but it explains why .
As others have mentioned ask your doctor to put in another request. In the mean time try looking at alternative forms of treatment. Sadly this is the future of medical care. The days when we could get the treatment we needed when we needed it have past .
Feel your pain sadly, my inflammation markers never show the true picture and just had a private ultrasound because even GP thinks my drugs are controlling. Worth every penny because it proved that my RA isn’t being controlled.
And this evening just seen a doctor at A&E because my veins are inflamed in my R leg .😡
Don’t give up , complain if you need to , yes it’s soul destroying but you have to fight for your health.
Unfortunately even before covid times it was my experience that if you were referred for anything at all then they always ignore the first request or referral. Unless you ring them yourself or contact the GP several times you will get nowhere. I know this is perhaps just my unfortunate experience but not having all the ticks in the right boxes with regards to blood tests etc if you don’t fight your corner and badger them ever so nicely you will be stuck between a rock and a hard place for a long time. I was finally diagnosed with bowel cancer in my 30’s which was a great shock to everyone including the surgeon who eventually resolved it but that was because I became a private patient through my work (good job) I had been lied to ignored and totally made to feel my issues were all in my mind. If it wasn’t for my eventual persistence and not taking no for an answer I wouldn’t be here. Now don’t get me wrong I’m not ever suggesting that it will become that serious in your case but fight for it you deserve to be heard and believed. This total crap about being a difficult case is a load of rubbish. Oooh sorry bit of a rant there but it makes my blood boil.
Morning. I know my RA Outpatients has been shut for 18 months or so because of Covid (lots of CEV patients/ staff deployment etc), but they ARE doing ‘emergency’ appointments. I would phone and stress that it is an Emergency, and that you Need to see someone. That might be the magic word. Good luck..
I too am at the mercy of low CRP. I have a flare every time I do anything, but have been on Mx & Sulf for ten years. No biologicals and a severely restricted life…..
Oh heavens...this goes to show how Rheum service varies across the country. I do feel sorry that you are struggling like this. My area in Berks is amazing...we have an email contact and the secretary sends on to the relevant person, usually one of two wonderful nurse specialists. Consultant responds with a letter/future appt bought forward if necessary.
I too am zero neg and still not fully controlled 5 years on. BUT at least I get a response in good time. I am now trying my 3rd Biologic. I know the team is busy so I am careful to only send emails after waiting to see if things settle and not just a mini flare. I quite often take a short course of Meloxicam/Omeprazole with good effect.
I would suggest you contact NRAS and your Rheumatology department to ask if / how an email service could be implemented. It is not really the GP's bag but perhaps he can contact the Consultants secretary to get you an appt?
Failing that...I did initially make a private appt with a consultant of my own choice and got seen that way before moving back to NHS. I had had 2 previous consultants that didnt really cut the mustard for me...it was money well spent.
I would add that this is difficult diagnosis to make & treat. I personally don't like Dr bashing as they are trying their best...most of the time.
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