This makes me so sad. And I know I’m extemely lucky to have the NHS in the UK despite its present myriad of issues. And by golly does it have its issues.
I’m presently dealing with bursitis in a hip since the beginning of July and trying to get anyone to put a steroid shot into it is a minefield. I’ve opted to use my credit card which thankfully has enough credit on it to simply get it done privately because what else treats hip bursitis? Any appropriately trained GP can do it. The MRI clearly identified which bursa sac it was too.
The NHS however wants my local hospital to traige it (completely bonkers given it’s such a simple issue and that sort of method is so stupidly admin heavy) and then I go on a waiting list in the community and no one can tell me how long that piece of string is to wait for that. It’s likely to be months. Prior to Covid my GP would have done it at a routine face to face appt. My rheumy team is now on holiday so uncontactable. Meanwhile I want to be able to walk without significant pain. And it’s made the opposite side’s foot issue (as yet not indentified as MRI said it was fine so likely sadly to be PsA as no doubt the hip bursitis is too) really blow up so I’m truly hobbling presently.
Prior to knowing I had hip bursitis both myself, my local GP and my rheumy (who incidentally is 300 miles away but at least is a PsA specialist) all said I needed an MRI. We did this by phone calls though so no one examined me either which is also stupid. Local hospital would take 3 to 6 months for that and again it had to go through this traige nonsense and rheumy’s hospital reckoned sadly it was at least an 8 week wait despite her ability to fast track it and with the travel too, so I was flat out asked if I could afford to do it privately. I can’t but the credit card could. And I had an MRI within 2 days. On producing my credit card again yesterday I have a private GP appt this evening. Please note however I was surprised at the cost of both as it was considerably cheaper than I was expecting. Very thankfully.
So access does remain an issue in the UK and waiting lists are long, sometimes incredibly long but we can specifiy that we need to see a PsA specialist rheumy and not a general one which does help. More than considerably too. And no biologic or similar could ever be afforded privately for people like me, the NHS can buy them cheaper so basically is the only prescriber of such things. As all private medical insurance policies exclude treatment for chronic diseases which PsA is of course.
I don’t get the sense of the doctors all sticking together here in the UK like you and @Amos and @ModSupport describe is happening in both Canada and Australia. For instance I once saw my rheumy’s colleague instead of her and he was positively dreadful so I wrote a stern complaint. It was pretty brutal looking back but I was pretty ill at the time and he missed so many things and issues it was appalling. So I called it all out. I was swiftly taken back to just my rheumy’s list and have been seen by her ever since. I certainly wasn’t dumped and I never thought I would be dumped by just complaining either. My guess is that I wasn’t the first to complain either.
I wouldn’t know how to deal if I was that frightened of just being not treated and effectively dumped. So my heart goes out to you all on that one. I would probably be running a serious calling out campaign both politically and media wise though to try and make change happen but that takes shedloads of energy which PsA patients especially often don’t have enough of to just get by on a daily basis whatever about anything else.
The sad fact is that in the main PsA can be effectively managed though when we hit the right med which works for us which is still sadly a lottery. It’s just that not a lot of so called specialists actually know that and get caught up on blood tests and other ‘evidence’ which PsA isn’t that great at sharing properly. It does share it though if they use a PsARC exam and know how to do it. There are plenty of YouTube videos showing them how to do a PsARC exam as well. Perhaps you should send your new rheumatologist some links?? He might learn something. Somewhere on this forum probably from @Seenie is the details of a book written by Canadian rheumatologists discussing best practice on diagnosing and treating PsA, you could refer him to that too. One of the author’s names was Gladman. And I’m happy to copy and paste varying UK sources explaining how seronegative PsA is too if that helped. But there must some of them in Canada already??
As far as the Rinvoq, I guess it’s because I know how it can be. I’ve been on Cosentyx and Hulio (Humira) and Taltz with success - almost pain free, lower fatigue and some mental clairty ! They worked wonderfully…until they didn’t. I find the Rinvoq really hit or miss, not getting that “wonder drug” feeling of some normalcy. Part of it may be that I’m still trying to do a lot - cycling, hiking, summer stuff including visitors and messed up schedules - but I’m really tired these days and my pain levels are higher. At this point I’m active or work in the morning and cook supper and rest in between it all. I’m probably overdoing it a bit.
The flip side is that I don’t know what I could even go to next and my new rheumie thought I’d switched a lot…but again I think he’s pretty green. Maybe my old one switched me out too fast ? My PSARC always showed a lot of pain though - way more than I even thought I had. Amazing really because I think we focus on the worst of it and somehow bury much of the rest of it…to a point. Sure is amazing the amount of pain we can “bury” and carry on with day to day.
Ohhhh, Poo_therapy! I’m receiving a steroid in both hips in a couple of weeks and I can’t wait. Thank God, I have a good Doctor for that. I hope that you get significant relief and don’t have to put the next one on your card.
I’m curious how you found a PsA specialist? Is that some thing they show in the UK when you are searching for a provider? As for the suggestion of sharing the diagnostic criteria with any physician….LOL. I couldn’t even get the last guy to review my history. I think this was a huge issue because my psoriasis is currently cleared by my biologic. He was coming up with brand new diagnoses based on x-ray results as if it was the first time I was presenting. Everything on my x-rays was pretty standard psoriatic arthritis (particularly in conjunction with two MRIs and one CT reports that he never reviewed) and I have about two dozen medical papers from all over the world to support this, in addition to the other 2 rheumatologists diagnoses.
With this next doctor, I am going armed with my history in hand. I will take all of the other suggestions that everyone has given, and do my best to have a better appointment. As far as I know, the next doctor that I’m going to see is not a PSA specialist, but he does have good reviews and regard to being compassionate, caring, and listening.
Here in the UK and indeed at this forum’s advice (yes really) I did indeed choose my rheumy by name. In those days in 2016, NHS ran a ‘choose and book’ scheme so all I had to do was name her and my GP referred me and around 12 weeks later I had an appt to see her.
These days however it’s a lot more difficult but still possible if you know what you’re doing with the system. And finding a PsA specialist is still all about knowing how to use google properly to research them, looking for research papers they’ve written or contributed too, looking for their name attending symposiums or better still talking at them etc etc etc. And because PsA is rare, anyone with an interest in it tended to have done all of these things just anyway, it nonetheless adds to their CV to be ‘specialist in something different’!
I’m delighted to say that even when the anaesthetic with the steroid shot wore off my hip is now longer sore. So simple isn’t it to get a patient out of bursitis pain but look at the hassle it caused me!
Yes I might slow down the ‘stuff’ you’re doing a little and pace it better. Always stop before you need to. Pacing is the most boring tedious stuff possible more so when you have some level of capacity but it works a lot.
I was reading the other day that we generally get less restful sleep in summer too and that’s certainly true for me, my gorgeous garden birds wake me up at silly o’clock and because of the lighter evenings there is ‘more to do’ as well. Heat issues for sleeping don’t help either, the UK has no household aircon remember too. Although thankfully this summer in the UK has not been hot at all, despite the rest of Europe literally burning. But I generally without a doubt do far worse in summer than I ever do in winter. Every goddamn year too sadly.
Always good advice to pace…hard to do, so much I want to do! Definitely need to work on that.
Interesting that you find winters easier, I have heard from others they do as well. I am the opposite - summer/warm weather is my time to shine, my body loves the heat. We take one or two warm vacations in the winter if we can for that very reason and it was a strong factor in our moving to the southern part of our province to (semi) retire. I am always cold in the winter no matter how many layers I wear - and that hurts and stiffens me up.
sigh The idea of a PsA specialist sounds wonderful, heck even having some choice period. Guess we just keep plugging along.
Hey @Lyndsey, I’m wondering how the Simponi is working for you? I’m only two weeks on it but since you are a number of months, what’s your thoughts/experience? Thanks!
Hello fellow Canadian! How’s the Rinvoq working? After over two years, my rheumy moved me to Simponi. Rinvoq was very slow to kick in and I really never had more than about 50% improvement. The only side affect was sores which could show up anywhere. Sort of like acne but more like a boil that I could feel deep under the skin before it surfaced. Very swelled and painful lasting 2-3 weeks. Three weeks off of Rinvoq and they are completely gone.
Amos that sounds terrible ! Ugh. I’m sure it’s nice to be rid of those.
Well, I’ve had 2 UTIs at this point, the last one went up to my kidneys but 10 days (versus 7) days of antibiotics cleared that up. If it happens again I’m done with Rinvoq. It has been helping though. Had you asked me yesterday I would have raved about being able to spin and do things but I just had one of those rough nights where it takes 2 1/2 hours to get to sleep despite a heating pad and some Salon Pas on my back, where you wake up continually and wake up feeling hung over and in pain. How soon we ‘forget’ those keep coming around when we start to feel ‘good’.
I always wonder about doses of these meds. When I was on antibiotics I didn’t take it of course and it took a few days to be back in pain, and only a couple of days to kick back in after. Maybe some days on/some days off would be a way to mitigate the risks of infection. All I know is I have only ever had one UTI in my life, decades ago, so the depressed WBC from the Rinvoq is to blame.
Also going into colder weather I think I’m in for more lovely PsA stuff anyway. Blah
Hope the Simponi works for you - I guess it’s still early days. Is that an injection ? At least there are still more options available.
Simponi is a once a month self injection and like most, takes months to get going. I wonder why they don’t give a loading dose to speed things up. The Rinvoq gets full marks for dealing with psoriasis and I was shocked how fast psoriasis and greater pain came back after I quit. Obviously in a flare but lo and behold… I have prednisone to get me through. I hate that stuff…feel stronger part of the day but wake up in the dumps. Oh well…lots more meds coming, right?
Hi NorthernElf!
I would love to tell you that it is spectacular and I’m wonderful…
I will start with the positives. It is the least painful of any of the injectables that I have done. Unfortunately, although I have very little sight reaction or physical reaction, I do get extremely fatigued for about 24 hours. I only get a little bit of relief and mostly in the first two weeks after taking it. My psoriasis is trying to break through on my nails, my scalp, and on my legs/feet. I had no topical psoriasis while on Taltz. I cannot really say that Simponi is helping my psoriatic arthritis or fatigue much more than Taltz. However, it does help.
I know that Taltz was recommended or could be prescribed for every two weeks instead of every four. Most insurance will not pay for that. However, I was just reading that I may be able to have Simponi approved for every two weeks. I think that this would provide me with a much greater benefit.
Before trying the Simponi every two weeks, the newest rheumatologist suggested adding methotrexate. This did not go well for me. I have a significant amount of G.I. issues, and the methotrexate made things exponentially worse.
I certainly recommend staying on the symphony for at least six months. I hope that it works anomaly for you. Please let us know.
Thanks for the input Lyndsey ! I’m going to stick with the Rinvoq for now. Definitely feel like these meds can be a shot in the dark (pun intended!)…almost feels like they are still a little experimental and we’re the guinea pigs.
Cosentyx was probably my best, followed by Humira/Hulio - and they did let me reduce the time in between shots as they stopped working so well. I will always wonder though if my rheumie switched me too fast on some of these drugs, maybe I happened to be in a flare when I saw her. However, I do remember the worsening pain and capability so maybe I’m just more worried about not having anymore drugs to try. Taltz was my shortest, just didn’t help.
Hard to ‘measure’ success when the true goal isn’t 100% relief.
Have you tried the injectable MTX? Back when I was on that it was much easier on my GI tract. Otezla absolutely killed me - lost weight, had stomach issues for the whole 3 months but I was determined to give it a go. Yuck.
I’m in Canada so our system is a bit different but I just got a call approving Rinvoq and covering my copay, just now and I’ve been on it since April - unusual time span for here. At least it’s covered - my 40% copay would have been $700 a bottle/month. Ouch.
Sadly you’re right. It’s because the science still can’t tell which med will suit which patient. They’re only starting that analysis now with cancer treatment. so we’ve a long time to wait until that level of science reaches us lot. Meanwhile we’ve just got to try the med and just wait and see.
No biologic reaches full efficacy until a year so basically pulling you off a med (unless you’re simply not responding at all and getting worse and worse) before about 9 months or even a year is probably not great practice. Cosentyx didn’t start working for me fully on a 300mg dose every 28 days until the end of month eight. So if I had been pulled off it at month 6 I would have lost the last 4 years of pretty well controlled PsA.
I wanted to let all of you know that I did ‘fire’ the horrible Rheumatologist. When I read his visit summary, I couldn’t believe that I didn’t refuse to pay him. I thought that I possibly imagined him telling me that I was in remission. I had active psoriasis and many visibly swollen joins and tendons. I took pictures when I got home for my own sanity. How in the heck am I supposed to get better if I either can’t get diagnosed or can’t get diagnosed accurately.
I found a 2nd new Rheumy who had mostly great reviews. His bed-side manner was much better than the recently fired doc but he spent a max of 10 minutes with me, didn’t really examine me, and gave me a sweet sounding brush-off when I tried to ask any questions.
I reread some of your responses and decided that I was not going to settle for rheumatologist number 2 and begin my search for another. Luckily, I live in a relatively large metropolitan area.
Third time was a charm! I found a provider who is in independent practice, and not part of a big corporate machine. So far, so good.
Oh, if you’re wondering….he confirmed that I am not in remission. Maybe with good care I will be.
A med induced remission is the best you can hope for and even that won’t sustain sadly. But I’m delighted it does appear now that you’ve landed with a more sensible rheumy.
Hi there. Your situation sounds vaguely similar to mine. Hallmark symptoms but one consultant has a differing opinion and it knocks your whole treatment plan out. It’s difficult enough to live with let alone dealing with these knock backs. Such a shame that one persons unusual diagnosis can affect our whole treatment plans.
