Hey folks, hope you're all doing as well as can be in the current climate.
I have introduced myself before, but I'll outline briefly where I stand as I have been told I need to see my consultant face to face for the first time in a year after a phone call from the RA nurse who seemed concerned about disease progress; that time needs to be utilised as best as possible, so I am hoping for some help.
Please read the following:
I am male, 40 years old, exactly 2.5 years in to my seropositive diagnosis with RA. My RF score is mega high, the highest my GP had ever seen and the disease has been ultra aggressive. Within 2 years my toes, ankles, knees, fingers, wrists, elbows and lower spine have been affected and cause constant agonising pain.
I do not seem to get the months off like many and I am considered to be in constant flare. Because of the swellings, I need special socks, my shoes need to be selected carefully and require elastic laces, I walk with gutter crutches on bad days and need various aids around the house. My partner helps me get dressed and use the bathroom. It's been a life changer.
Physically, I have a toe now twice it's original size and turned on it's side. Several fingers on my right hand are twisting and drifting outward from the thumb and lots of large hard lumps in my knees that prevent me straightening them out. I also suffer with the dry eyes from RA, so bad I have to use the Vaseline style eye lubricants for 24hrs or else my eyeballs feel scratched.
I have been on prednisolone, naproxen and sulfasalazine since diagnosis. Then Hydroxychloroquine was added 1 year later when no effect was made. 18 months in these DMARDS were having no effect and because of Covid I was advised it was best to stop them and start methotrexate when possible. I had a blood test to confirm liver function and my enzyme level was not sufficient to start treatment back in July '20. Codiene was added to help with the constant pain . Liver test in October '20 was the same result. Liver test January '21 again the same. My enzyme levels were not right for MTX treatment.
So, now almost a year since I have taken any DMARDs, managing my disease with steroids, pain killers and anti-inflammatories, I am seeing the consultant again. What do I need to ask for?
My knee lumps are horrific and stop me walking - do I need a scan?
If I can't take MTX - what else can I ask for? The nurse keeps telling me I need to 'jump through the MTX loop' - that's great if my liver function agrees. But my enzyme levels are not changing and it's going on and on.
What do I need to ask this consultant to make my treatment move forward, because I seem to be left to the wayside at the moment and it's only a severe progression in my disease that has got anybody doing anything, ie my knee lumps.
Have any of you gone private?
Any advice is gratefully received.
Written by
BJC1980
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Firstly, so sorry to hear you are suffering so much. Sounds really awful. I would hope that the rheumy will move you to a biologic as although you’re supposed to have tried Mtx and two other DMARDs (which you’ve had) before biologics can be given, there are obviously reasons why you cannot have Mtx.
Although oral steroids will definitely dampen down the RA and Naproxen help with some of the pain, neither of those are controlling the rheumatoid disease activity or the damage RA is doing to your joints.
I would definitely ask if you can be given a biologic treatment as the RA sounds very aggressive at the moment. At 40 years old you don’t want to be locked in that pain and immobility and have potential long term damage by not being given a med that will control your RA. There are always patients who can’t tolerate a certain med and will not follow the standard procedure of which meds first, etc. I hope that when the rheumy sees your feet, hands and knee lumps they will recognise you need to change something now instead of trying to cope on oral steroids and painkillers. That’s not a long term option. If you feel really awful tell the rheumy exactly that. I found that hard to do at first.
To answer re. going private .. I had BUPA and used it to diagnose my RA as it took almost a year for it to show in my blood and then I transferred my rheumy/appointments etc to NHS.
I’d ask for a scan too .. absolutely. You’ve been very patient and it’s not worked in terms of being put on a stronger med to control your aggressive RA. Maybe you have slipped through the net with the past year being so difficult.
Good luck and hope it is soon you get to see the rheumy. Hoping for much better days for you soon.
Neonkittie has given good advice and is more ‘experienced’ than me so all I can add is if possible take your wonderful partner to the appointment with you... some how it helps to have another person there.
I would write down any questions, thoughts and observations and take the notes with you.... six years in and I still take my notes and have them out to refer to. Freely note down any advice give - yes I still do that with a ‘one moment whilst I make a note of that before I forget!’.
Once you’re on the right med for you there should be a steady improvement over time but right now you’re in a very difficult phase which has clashed with a pandemic era..... flaming heck!! Do tap in to us as often as you like/need cos chatting definitely helps.
In “normal” times I'd definitely agree with taking your partner along! Unfortunately during the pandemic, they are only allowing the patient in - unless a carer is absolutely essential. I’ve seen people being surprised/upset at this in the hospital reception - so just forewarning you xx
You obviously have gone quickly into an aggressive form of RA. I’d hope you’re moved on to a biologic or JAK inhibitor pretty quickly. Ask about your DAS score.
You don’t have to jump through the Mtx hoop if you’re not able to take it. You will have to clear other tests before you can take a biologic or JAK inhibitor.
I get so cross reading stories like yours. I love the NHS but you are not getting the level of care you deserve.
I’m presuming you don’t drink alcohol and they have looked at why your liver enzymes are out of whack and not found a reason, so have ruled out any liver disease?
At your age this is awful! You need to be firm and quite politely insistent that you know there are other types of drugs available (biologics and JAK inhibitors) that you want to be considered for.
You are supposed to have tried and failed at least 2 conventional drugs including MTX before moving on to other drugs. But a lack of tolerance to MTX can be treated as a fail. And if your liver enzymes are bad you can’t tolerate it!
As Brushwork says, ask about your DAS score. If it is over 5.1 you are eligible for biologics and JaK inhibitors. (Although the steroids and anti-inflammatories may be affecting your score so need to raise this as a question). And if you are over DAS of 3.2 then NICE has just approved a new JAK inhibitor Filgotinib.
“Filgotinib, with methotrexate, is recommended as an option for treating active rheumatoid arthritis in adults whose disease has responded inadequately to intensive therapy with 2 or more cDMARDs, only if:
disease is moderate or severe (a DAS28 of 3.2 or more) and
the company provides filgotinib according to the commercial arrangement.
Filgotinib can be used as monotherapy when methotrexate is contraindicated or if people cannot tolerate it, when the criteria above are met.”
PUSH!
(Biologics can only be prescribed on the NHS, so whilst going private is great for diagnosis it might not help you much here.see what happens at your appointment)
Great advice here. And if all that fails get yourself in to another rheumy at a university hospital if you can. Keeping you on pain killers alone and steroids for as long as you have is quite unforgivable and it Is utter nonsense that you have to go through MXT ... why on earth would you if you’ve already had results that say no. Would have thought the risk of trying it would not be worth it and anyway they should be referring that to someone to investigate that too surely. Ask for a referral for that. It’s not like it was one random result.
I am on the same pain relief you are and have been through three meds... 2 dmards 1 biologic and now heading for another Biologic at the end of this month. All of this in the last year having been formally diagnosed this time last year. In many respects I have been incredibly lucky and my rheumy amazing. I have spoken to her basically I’d say once a month. Not always planned appointments. There is no excuse for what they are doing or rather not doing here. 🍀
I totally agree with Helix, you need to be assertive and say you want to go onto another drug (namely biologics).
I phoned the NRAS helpline when DMARDS weren't working for me and the brilliant lady said to me you work as a team with your rhematology Drs and nurses, dont be afraid to ask for biologics. So I asked, was assessed and approved.
Its your life and things have progressed quite quickly, get onto things now, its absolutely absurd they are saying you have to jump through a methotrexate "hoop" when your liver blood results are as they are. They need to pull their finger out and help you x
Sorry to hear you are in pain, its a terrible time feeling like this, it does get better you just need to push for the right medication for you x
This will give you information about what is available to treat your disease.
Currently you are are undertreated and this is not good either for your quality of life, or for the control of this long-term disease.
If the consultant you see this time is not more pro-active then you need to ask for a second opinion. I have found that you need to 'fight your own corner'!
I’m so sorry to hear you have been suffering so much. In my opinion you have been failed by your doctors so far because it’s obvious that your RA is uncontrolled and to have fobbed you off with painkillers is outrageous.This thread is full of excellent advice. I agree you should now ask to be put on a biologic drug before more irreversible damage is done to your joints. Meanwhile, steroid injections would help you cope until the drug gets to work fully. Be insistent and push for proper treatment.
Good luck. Do let us know how you get on.
Lots of good advice so far, but just wanted to flag that endless painkillers - particularly NSAIDs like naproxen - are not going to be doing your liver any favours at all. Pred can also impair liver function, but requires the liver to be functioning well to be properly effective as it’s the liver that changes pred to it’s active form in the body. One or both of these could be the reason why your LFTs are wonky, and it could offer some explanation as to why the pred isn’t doing much to dampen the pain of your uncontrolled arthritis. I’d also advise completely stopping all alcohol if you haven’t already, as it doesn’t take much to aggravate a stressed liver and keep enzymes elevated. Have you had an ultrasound of your liver to see if there are any structural indicators of liver disease, or have they just assumed the raised levels are down to medication?
What you need to ask them for is the correct treatment for RA, because they’re effectively not treating you at all at this point. Pred and painkillers won’t do anything to stop the disease trashing your joints, and probably not that much towards actually relieving your pain, I’d imagine. I haven’t had an easy route to diagnosis, and have remained uncontrolled since I did finally get a diagnosis last January, but even when you were receiving DMARDs, they’ve been /incredibly/ slow at maximising your treatment. I’m not that much further on now than I was at diagnosis, but I did at least get a second DMARD added in after 4 months stuck on pred and mtx with no benefit, as well as regular dose increases, and they’ve just agreed to swap me from mtx to another med alongside the one we know does something en route to discussing biologics if it still remains uncontrolled. They can’t leave you like this, and if you can’t take mtx, then that is a DMARD ‘fail’ for treatment escalation purposes, and should be counted as such. Have you been taking photos of the changes? If so, make sure to show them to the consultant. If not, start taking them now to track what’s happening going forwards. I’ve had changes in my hands and ulnar drift in my right wrist since diagnosis, but until two weeks ago it had been ignored, even though it’s a clear indication of uncontrolled disease. The photos have been the difference between being told over the phone I was apparently in remission in December, and having them finally realise I’ve had constant, moderate disease activity for the last 18 months.
I’m going to be really honest and say that regardless of covid, the care you’ve received is atrocious, and probably warrants a formal complaint if you have the time and energy to pursue one. As others have said, private consultants can’t offer biologics, but you may be able to get on to an NHS list via the private route if the consultant also practices within the NHS, but have you considered asking for a referral to a different NHS hospital? You’d be well within your rights to do so.
Goodness me I am so sorry to hear how much you are struggling. Your RA sounds very active and aggressive and I am pleased to hear you are going to be seen.
Like you I can’t take MTX as it has caused some complications with my liver so I have just been approved for biologics now. I would suggest that this would be something that should be discussed at your appointment. I too am currently on sulphasalzine, codine, prednisolone and naproxen but still having a lot of pain and my RA is very active.
I really hope that you don’t have too long to wait for that much needed appointment and I am so sorry that you have been left to struggle for so long.
Do let us know how you get on won’t you? If you haven’t already done so it would be a call to the NRAS helpline too as they will be able to give you lots of good advice for making the most out of your appointment.
You could definitely speed things up by booking a private consultation.Find a Consultant Rheumatologist who also has an NHS list ....and once he has seen you privately and assessed your needs ...you could transfer back to the NHS where he could prescribe the biologic drugs which you sound as if you need. ...they cannot be prescribed Privately..& if if they could...most of us could not afford them.
It will be expensive...but from the sounds of it ....well worth it.
But don’t despair... I was in a terrible state for two years when I was first diagnosed 20+ years ago and here I am .....a very elderly lady doing fine!
So start searching for a new rheumy....& get the treatment you need.
Good Luck!
As many have said, NRAS are here to talk to you if you need to. The Helpline number is 0800 298 7650.I also want to support what others have said about investigating the LFTs. Suggest a referral to a liver specialist.
You may want to contact PALS at the local hospital to make a complaint about the treatment so far.
If you are not able to take your partner in with you, a resent caller spoke to her Dr and advised she forgot a lot of what was said in a session so they rang her daughter who was waiting in the car and she listened in on speaker phone.
Thank you all so much for the advice, it is appreciated as this is my only port of call for reaching out to people who really understand. I have not had time to reply before, but took it all on board before seeing the Consultant and went armed with many questions needing answers.
So, how did it go?
As I could not stand up from a chair or dress myself without my fiancé I took her in with me and there was no problem from the consultant with that: he was more than happy for her to sit in on the consultation. So thankful he did, as I found myself unable to talk from choking up with tears and she did a great job of helping me get it all out, along with asking questions that I had 'fogged out' and forgotten about. I know I am not alone, but the burden of this has been hard to bare and with everything I have lost, I just found myself overwhelmed by it all. It was difficult not to get emotional when he began asking me my story to date.
He did an examination of my joints and told me I would usually be better off hospitalised until they could get the swellings under control, but in the current climate he thought I would be better at home and I agreed. Scans he said were needed, but disease control comes first.
I guess I was fortunate that I was so bad he could see for himself along with blood results. We discussed everything over 45 minutes and before I could mention it he said we need to move to biologics, ASAP. Nothing else was going to work. He was a very experienced consultant, unlike my last, and took interest in me and how this has done so much damage to my life. He seemed confident he can help me, which in turn made me feel mentally so much better.
In a CC'd letter from him today he has written 'flares have progressed to ongoing severe active disease. Unfortunately he would not be a candidate for methotrexate or leflunomide at present. Could this man be given a telephone appointment to start Anti-TNf therapy in the first instance due to level of disease activity'.
So I guess this is the outcome I could have best wished for. I will have to get myself educated on the next step, I like to know and understand what I am taking and how it works.
April 7th I have my telephone consultation and I am told will commence treatment around 3-4 weeks thereafter once the paperwork has been sorted. For now I'm back on the preds again.
You are now on the right road Baz....with a good doctor ........ so positive hat on & listen to your Rheumatologist who has taken your condition seriously & set you on the right path.Hopefully you will be fortunate & your first Biologic will be “the one”..... now ...boring as it is....patience & perseverance are the name of the game.....don’t expect to wake up the morning after your first dose/treatment as right as rain.
I am sure you will be told a drug can take maybe 12 weeks to kick in.....so try ....within reason....to cope with what you experience....
Ah BJC1980 your consultation sounds like a positive one which gladdens the heart after such a bad one for me yesterday. Keep pushing and chasing and asking whys all the way at any point and make sure you have the RA clinic umber or even better email so if things BAD you know how to contact them. They need to know if things are not right or you are worried.
I'm so sorry yours was less than successful - it is absolutely hit and miss, especially when added complications are involved. I do have the RA dept. number and the e-mail address, but they have never once responded to calls which are directed to a voicemail and so far 1 in 5 e-mails have been responded to 😕. I always feel like a burden to the system, so I've held back complaining and pushing, the result of which is some very bad damage to my major joints. Wish I had put my foot down sooner and obviously being in amongst the current crisis hasn't helped us in the slightest.
The key to good treatment is pushing when needed and stick with it don’t feel a burden,
one life we get so push to get treatment it is a right. I am sure many Doctors would not put up with the pain and issues to the lengths some of us have had too.
So, a year has now passed and what a difference a year can make when you have the right medication. In my case it has been Imraldi.
For a start, I can walk again. I'm not going to be breaking any land speed records, but I can take a nice stroll through a park and even manage a few miles without issue. The crutches and orthotic brace supports are on standby, but haven't seen the light of day for many months now. I can sit on the couch (and toilet) without fear I might not get up, I can just about pull up my own socks and I can even drive my car that had been stored for nearly 2 years again!
I'm not saying I'm now the bionic man, I still have the aches and pains left from the initial damage caused, but the difference from when I posted this to now are night and day. I thought maybe it was a good idea to conclude this post, as I remember many people starting stories like this and there never being any future posting about what occurred.
Now I am looking to rebuild my life. The days of running a very busy business and working all the hours I could are long behind me and I value different things in life now compared to before RA was a thing to me. Sadly, my partner of 7 years was finding it difficult with having a 41 year old in my state and we parted ways 6 months ago now with a difficult seperation. Understandable I guess, in her mid-30s I doubt she ever envisaged caring for me and helping me dress, etc. I hold no grudges, what will be will be. I will actually write another post about this, as I am curious about relationships and the effect RA has on them.
So thank you to all those on this forum who filled me with hope, it's been a rollercoaster ride and not a fun one, but I have walked away from it.
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Well I certainly wasn't expecting to be offered a place on a drugs trial at my hospital appointment!!!
Has anyone started on a new treatment regime during lockdown?
Hacked off
Routine RA checkups
Excruciating wrist pain
