Has anyone else found that their communication channels with the arthritis nurses and the consultant have largely been closed down? When I started on Benepali in 2017, there was a phone line I could call any weekday morning, leave a message, and someone would call me back within a few hours. It was great. Then it got cut to four days a week. Then three days a week from 8.30-11.00. Then it went to four days a week with a mad rush at 8.30am as the line was closed once a certain number of messages had been received - no idea what happened if you were unable to phone at 8,30! And nowā¦the phone line has been closed completely. Instead, we have to ring the consultantās secretary, who never answer their phone, and so you leave a message and waitā¦and wait. Is this happening elsewhere in the UK?
Anyway, I saw my consultant in November. We agreed a course of action: short course of steroids to get me through the current flare, and then a move from Benepali to ixekizumab in the new year. He wrote to my GP (and copied me in) and said that this was the plan, and that the Benepali was essentially non-responsive. But weāre now at the end of February and nothing has happened. Since the start of the year, I have fallen twice. Yes, there were circumstances that contributed to that, but if you bear in mind I hadnāt fallen in 30 years, itās likely that more mobility would have stopped me from going over.
Iāve rung the elusive secretary and left a message, but Iām not really expecting any reply, and thereās no email address for the consultant that patients can use. So does anyone have any idea of another course of action of getting the hospitalās attention?
Go to PALS for your local hospital. They will sort out the communication issues. And ensure by the time youāre finished there, you have an email for your consultantās secretary too.
Iāve been on Benepali for ten years - and feel it is no longer working as well . My consultant said there is as nothing better when I spoke to him on the phone in Dec 2023. In ten years I have never had a telephone line to nurses - until now I spoke to a nurse (who rang instead of the consultant) she gave me a number her to ring.
As for appointments. At first I saw the consultant quite often, then 6 monthly then yearly.
I now live in Devon but stayed with the same consultant. Iāve seen him once since Covid.
Yearly phone calls, then it was lengthened to two years! I complained and got the phone call from the nurse.
I had a bad flare just before Christmas 2024. I rang my GP - without going into details they donāt really understand PsA. I wanted some steroids to get me over the worst - but they canāt prescribe without - you guessed it a letter from my consultant. I couldnāt get hold of the consultantās secretary, eventually I emailed.
This was end of Nov, all I got in response was the phone call appointment for February. Then it was with a nurse.
I feel quite vulnerable as I am gradually getting worse and no real hope of anything further to help.
I have now got an in person appointment in December but I donāt know if itās with my consultant or a nurse.
Rant away! Im not sure why you have been told there isnāt an alternative, as there are a whole list of biologics for us to work through. I think id be asking for a different consultant, to be honest, if you are confident enough to do that. I did it about ten years ago when i had a rather nasty consultant who accused me of lying about how much i drank - i am teetotal. She also said my arthritis pain was worse because of poor posture. I pointed out that the poor posture was a result of arthritis pain. But you shouldnt accept waiting until December for help if you are in pain.
Meanwhile, i had a call this morning with an appointment in April, so somehow the message eventually filtered through!
I am thinking of changing hospitals to one nearer me. As I said I live in Devon.
However, I donāt want to jump out of the frying pan into the fire!
I was on Humira before Benepali but it did nothing. Benepali at the time was a game changer. I was told that if I came off Benepali I couldnāt go back on it - even if the new one didnāt work as well - between a rock and a hard place!
Glad to hear youāve got an appointment in April it will result in something helpful.
Iād really hoped that after ten years things would have evolved further and PsA would be better understood
Thatās true. You canāt go backwards on the list of biologics - there must be a reason for this, but I have always thought that your body might react to it after a lengthy break. But it is what it is. But there are about ten biologics for PsA on the NHS, I believe, and there are certainly alternatives to Humira and Benepali. They have suggested Ixekizumab for me at one point - I donāt know if it will work, but it would be useful in Scrabble! I have been really reluctant to leave Benepali - not least because my āsystemā has never had an adverse effect to it except for a recurring skin infection and a blocked up nose, but I can cope with those quite easily. But if it has stopped working, I guess itās time for me to move on (and I canāt keep falling over or Iām going to break something). Sadly, when I had a short course of steroids in November, they never really stood a chance of working. I had to stop the Benepali just after which I got over food poisoning, and then again after Christmas for dental work, and now Iāve got a stinker of a cold. I didnāt really have much of a chance of getting on an even keel in the way steroids have helped in the past.
Sorry to hear youāve had so much to deal with lately. Coincidentally I have a cold too - but wonāt stop Benepali unless it really kicks in - joys of having grandchildren down for half term!
All along my main symptoms have been enthesitis in multiple places and fatigue. I have a couple of fused cervical vertebrae, and get a reasonable amount of joint pain but luckily not loads. Itās the stiffness after sitting etc that drives me nuts too
My understanding is that the anti-TNFs target particular white blood cells - a bit like certain antibiotics target different bacteria. Which is probably why Humira didnāt work for me but Benepali did.
Do keep in touch and let me know if you change to another biologic and how you get on with it.
You have loads of choices of biologics in the UK for PsA, Iām presently just started my 4th one. Both Benepali (Enbrel/Etanercept) and Humira (adaluminab) target the same protein the T-cell - the TFNa. One circles the protein, the other attaches to it. NICE guidelines require our rheumies to try on one of these first and if doesnāt work try the other.
But besides these two - you also have other anti-TNFNa ones to try like Cimzia and Simponi.
Then you can go on to interleukin biologics so you have Cosentyx, Talz (the one @darinfan is going to take), Bimzelx ( a very new one), Stelera, Tremfya and Iām sure Iām forgetting one or two.
After that there is another strata of meds called Jak inhibitors - these are by a daily tablet. The one most commonly used is Rinvoq.
Except for JAK inhibitors we tend not to re-try biologics weāve tried before because simply it more likely your body will have grown anti-bodies to it as they donāt like us stopping and starting.
Are you seriously say youāre not seeing anyone until next December? Please also go to PALS in your local hospital and ask to be seen sooner than that.
it will result in something helpful.