What next?

[junik53]

I have psoriatic arthritis ans have been on mtx injections for a number of years,and have been fairly well for all that time apart from nausea and sickness that has been manageable. Over the last few months I have had an increase in pain in all my joints ,more trouble with walking and other normal activities like arm and shoulder pain when lifting things like cups of tea and the kettle.I am due to see rheumy in a few weeks and wondered what other sorts of treatment I may or not be offered?Does anyone have ideas or has a particular treatment proved useful?

[vonniesims]

I have had RA for 23 years and been on Methtrexate and after some time a Biologic too, This year I have been diagnosed with Psoaratic Arthtitis too so they changed the Biologic. I am still on Methotrexate , but also Amgevita ( Adalimumab ). Not sure how well its working, but am certainly less fatigued, Hope you get some help from Rheumatology

[junik53 in reply to vonniesims]

Thanks

[Mmrr]

I was offered biologics as the next step from MTX...benepai, I think it is a common next step and seems to work well for many. Best wishes.

[junik53 in reply to Mmrr]

Thanks

[nomoreheels]

Sorry to hear you're not doing as well. Re next step, it depends. I have RD not PsA & started on hydroxychloroquine. That was changed to methotrexate after a year (which I’ve been on for 13 years, 12 injecting) but I’ve also tried increasing the dose, double therapy MTX/sulfasalazine & MTX/leflunomide. Nowadays I just have MTX & low dose steroids but it's so dependent on your disease activity & if a simple dose increase is all which is required. If they’re necessary the next class of meds, biologics, may be considered but it's not as simple as just adding another DMARD I’m afraid. This explains nras.org.uk/resource/biolog...

This may help researching the rest of the DMARDs nras.org.uk/resource/dmards....

I hope things dampen down quickly whichever route your Rheumy goes. Best to be prepared & jot down any questions you need answering, just bullet point ones, though you probably know that!

[junik53 in reply to nomoreheels]

Thanks

[nomoreheels in reply to junik53]

You're welcome. Let us know what transpires.

[nomoreheels in reply to junik53]

On researching something else I happened upon this, NICE guidance treatment pathway for PsA. It might be of help, though in line with the guidelines for RD & proceeding to biologics it appears it's necessary to have tried 2 DMARDs before being considered for them in PsA (page 6) ncl-mon.nhs.uk/wp-content/u...

Of course each case is unique but I thought it may be a useful guideline for you to bookmark for future reference.

[junik53 in reply to nomoreheels]

Thankyou very helpful

[nomoreheels in reply to junik53]

👍 x

[MadBunny]

Me too - was on mtx for a while but it stopped working well,and like you, was starting to find ordinary tasks difficult, so I was put on a biologic. Since then I've been in remission and although I still have problems with my knee due to early joint damage , I've been ok on the whole.I hope that you can get some answers and be offered a treatment which works for you .

Sending you best wishes 🤗

[junik53 in reply to MadBunny]

Thankyou for your reply

[MadBunny in reply to junik53]

You're welcome x

[Hidden]

I was diagnosed with PsA in 2020, but have had active disease for 20 odd years. There are plenty of treatment options available, although there are less biologics licensed for use with us than with RA. Of the conventional dmards, my understanding is that leflunomide has a fairly widespread reputation for being good drug to try for PsA, but otherwise response to treatment is as with all forms of RD: highly individual.

Others have mentioned being offered a biologic after mtx stopped working, but I was under the impression that you would potentially still have to ‘fail’ at least two dmards: in terms of the access pathway, the NICE biologic criteria don’t differentiate between treatment not working at all and it stopping working after several years. It just says failure of at least two dmards, one of which has to include at least 6 months of mtx at therapeutic dose unless contraindicated. In my own case, I failed mtx on its own and then in combination with leflunomide, before failing the lef on its own: the lef did work somewhat for me, but following an increase to max dose ahead of adding sulfasalazine, I had trouble with my liver and had to come off everything until that settled down. Because of that I went on to biologics, starting on imraldi (adalimumab), which did absolutely nothing, and for the last 4 months have been taking Benepali (etanercept) alongside a low dose of lef. I’m not perfect by any stretch, but I’m the best I’ve been on any treatment to date by quite a way.

[Frances_UK in reply to Hidden]

I didn't have to try MTX before being eligible for biologics. I think I came under the "unless contraindicated" exemption.

The pathway to biologics was a little clearer for me. I failed hydroxychloroquine - or rather it was inadequate; sulfasalazine had intolerable side effects and wasn't very effective (except on my bowel problems, which I'd always been told was IBS and not inflammatory); high blood pressure ruled out leflunomide and ciclosporin; and as a woman in my 30s who wanted children I could skip methotrexate. So biologics were all that was left.

[junik53 in reply to Hidden]

Thanks so helpful

[Celticdancer]

They will usually offer biologics. I refused a biologic as my Rheumatologist didn't have a clue what she was doing as she wanted to put me on a biologic but didn't know which one then she hadn't even seen my MRI scans of my back so she didn't even compare any disease progression from the MRI done 5 years ago to the most recent MRI.I done alot of research on the biologics using peer reviewed journals like the BMJ and the lancet, scientific papers etc and what I found is that biologics only have a 30-40% success at the most for Ankylosing Spondylitis patients. Then chatting to other AS patients most of which had told me that the biologics hadn't worked for them, I thought I'm not risking getting all these side effects with very strong immunosuppressant drugs with a small success rate.

I looked at my diet and done alot of research and found avoiding inflammatory foods like oranges, tomatoes, processsed food etc. Eating foods that reduce inflammation like carrots, celery, beetroot, oily fish, goats milk, goats cheese etc helped me alot.

I now don't take any medication and only take naproxen and paracetamol when needed (now and again).

I exercise daily and I try to manage my stress levels. I wear shoes with supportive insoles and that fit my feet well and suit me to avoid plantar fasciitis which I've had many times.

Also we have to remember that the NHS as it currently is, free at the point of access, won't be like this forever. It's near to complete privatisation and what will happen then, who knows, an American health insurance style system maybe?

This is why I'm trying to rely less and less on the NHS because in the future if I have to pay for health insurance on my minimum wage job, that will be difficult. GP's have been cowards and won't do face to face appointments and many have privatised their services. They will probably welcome this privatisation.

This is what has worked for me but you must find what works for you. Good luck.

[junik53 in reply to Celticdancer]

Thanks

[Maple_22]

Cimzia has been an absolute gamechanger for me and I'm now in remission. I have almost no pain! You will have to fight for it on the NHS though as it is expensive. NRAS helpline gave me really good advice on how to approach my rheumatologist so give them a call! Good luck

[pineapple_head]

I have psoriatic arthritis and I'm on Amgevita. It's an anti TNF which is a bio similar to Adalimumab. I have been on this for 2+ years and I don't have any side effects. I inject myself every other week. The only downside is that it doesn't last the whole 2 weeks but I have been well on it.

[DelicateInput]

You would be best to look on a website dedicated to psoriatic arthritis. I think you are entitled to more effective drugs more quickly as psoriatic arthritis does not respond to some of the traditional drugs that work on rheumatoid arthritis.

[Garnacha in reply to DelicateInput]

Oh that's interesting, I'm on hydroxy, etoricoxib, lefluminode & just started sulfasalazine as I couldn't tolerate the side effects of metoject any longer, I was wondering how quite a lot of people on here seem to manage on any one of the above either individually or in combination or with biologics.

Was starting to think am I just a wimp but I've normally got a high pain threshold x

[Hidden in reply to DelicateInput]

Unfortunately, this isn’t accurate. The NICE access pathway for PsA is the same as RA, the only difference is that they don’t use DAS score to determine active disease. That’s done on the basis of number of swollen and painful joints in conjunction with skin psoriasis where appropriate. There are less drugs licensed for PsA, however traditional DMARDs like mtx, salfasalazine, and leflunomide are still considered first line and at least two are required to be tried first, unless there is a contraindication.

[DelicateInput in reply to Hidden]

That's a shame. I was advised by Health Unlocked that certain Dmards do not work on psoriatric arthritis and therefore it is a quicker route to biologics. This seemed to be supported by the website dealing with psoriatric arthritis.

It was a while ago - in 2014/15. I was diagnosed initially with gout and psoriatric arthritis, and finally rheumatoid arthritis. My uric acid levels were off the radar hence the gout diagnosis but the symptoms did not add up. I also had a foot rash and small areas of psoriasis. Both psoriasis and rheumatoid arthritis run in the family but not gout. However, the final diagnosis based on imaging was rheumatoid arthritis, I have often had my doubts about it but I am stuck with it. Gout can only be diagnosed by doing a blood draw to see if there are crystals and by a blood test for a hereditary gene so the diagnosis was cavalier.

I really would have liked to try biologics but I cannot because I am not willing to risk Dmards like methotrexate, so I do not take anything.

[Hidden in reply to DelicateInput]

As with RA, some people with PsA never end up on biologics, some of us do. There are some drugs that anecdotally seem to be better than others, but it is anecdotal, and treatment remains a case of taking them and seeing how you respond. There are no DMARDs that are not given to PsA patients on an efficacy basis, and unless there are issues like liver problems or other contraindications, therefore no quicker route to biologics. If anything, I’d argue the route to biologics is probably longer for many PsA patients due to the lack of understanding of how it differs to RA: I once had a consultant work out my DAS28 and quite aggressively tell me I was in remission and didn’t need any treatment changes on that basis, when DAS is completely irrelevant to assessing PsA disease activity 🤷‍♂️

[DelicateInput in reply to Hidden]

Yes, that consultant's attitude is one of the reasons I steer clear of the conventional medicine if possible.

I wonder when biologics will come off patent. I looked a few years ago and some were quite old. The usual patent period is 15 years so some of them should be available soon.

I know quite a few people who have had serious side effects from Methotrexate and at my age (now 73) I am unwilling to risk it. These have included loss of a kidney and liver damage.

I tried Hydroxychloroquine but simultaneously rentinal damage was discovered and I also had a chest infection and was coughing up blood - I have an ongoing infection. Therefore, I did not continue. I cannot take prednisolone as I am allergic to it. A cortisone injection worked well for ten weeks.

[Ros23]

Hi I’m on amraldi (bio similar injections) which I inject fortnightly and they hv been brilliant, no side effects at all x

[oldtimer2]

It would be worth you looking at the treatments page on the NRAS website: nras.org.uk/information-sup...

That will give you an idea of what you might be offered next and the advantages and disadvantages. As far as I can see most patients with Psoriatic Arthritis seem to be treated in the same way as those with Rheumatoid Arthritis although there are some differences.