New psoriatic arthritis diagnosis

Troy81

Hi, just been diagnosed with psoriatic arthritis (by receiving a letter with a booklet telling me all about it and Methotrexate after telling me nothing was wrong but I fought for further tests) and have so many questions!

What drugs are better, Methotrexate or biologics? Want to feel better but terrified of side effects, both increase risk of Lymphoma and my Dad died from lymphoma.

Think I just want to talk to other people going through the same, thanks x

Ellen

Hi @Troy81 Welcome to the online Community.

I see from your post that you have recently been diagnosed with Psoriatic Arthritis (PsA) after having had to be quite assertive and are about to start treatment with Methotrexate (MTX).

Your diagnosis was via the post I am quite shocked about this, but you are doing the right thing coming here to talk to people who understand and get yourself informed.

We have a lot of members here who have Psoriatic Arthritis I am thinking particularly of @jamieA who is very knowledgeable and active on here.

You are asking which are better Methotrexate or Biological medications.

In general most of us are started on 'conventional' Disease Modifying Anti- Rheumatic Drugs (DMARDs) such at Methotrexate:

https://www.versusarthritis.org/about-arthritis/treatments/drugs/disease-modifying-anti-rheumatic-drugs-dmards/

before consultants will consider biologics:

Please do take a look around the forum and join in wherever you feel comfortable Living with Arthritis tends to be the most popular.

Best wishes

Ellen.

frogmorton

Hi @Troy81

I am so unimpressed about you getting a letter to diagnose you!!!!!!!!!!! Not even a measly phonecall🙄

I don't want you to not take your medication due to fear of risks though.

All medications have risks even paracetamol and ibuprofen and so many of us take those without batting an eyelid.

I also quickly googled whether Lymphoma is inherited and it seems not so that is reassuring, but I can totally understand your fear seeing your Dad die of it must have been awful ((()))

Keep posting and chatting trust me it helps. Many many of us take MTX here and for a lot of us it's a real real help.

Take care

Toni x

jamieA

https://community.versusarthritis.org/discussion/58375/new-psoriatic-arthritis-diagnosis

Hi @Troy81

Firstly I'd like to echo what @Ellen and @frogmorton have said - getting your diagnosis by letter and booklet is absolutely appalling. Have you not been scheduled to see a rheumatologist face to face?

I know everyone is different and will react differently to drugs so I think it's difficult to give any assurances or consider what happens to one individual as the norm.

In my case I was a healthy 64 year old, physically active and my psoriasis had been in decline for the previous 15 years. I took a number of chest infections from March 2020 onwards and then joint problems in September 2020. I was diagnosed with psoriatic arthritis on October 30th 2020. Initially I was put on sulfasalazine and then 3 months later, when I showed signs of worsening symptoms, put on methotrexate. Five months after that in July 2021 when things had further deteriorated I was put on the adalimumab biosimilar Amgevita. That has worked and I'm in a far better place than I was in early 2021. It's not been pain and symptom free this last year but it is much, much better than it was in first 9 months of 2021. The medics have still kept me on sulfasalazine and MTX as they said the drugs work in conjuction.

In May 2021 I was admitted to hospital with Atrial Fibrillation and tachycardia - I've never had heart issues in my life before. Since then I've read numerous medical papers and articles linking MTX, amitriptyline and NSAIDS to heart issues - I was on all 3 of these drugs at the time. But other members here are using these drugs without suffering side effects. I've also read other papers that link having any immune-mediated inflammatory disease to a higher incidence of heart issues irrespective of drugs. I'm now off NSAIDS and amytriptyline and my MTX was reduced by half to 10mgs and I've not had any heart issues since October 2021 when the MTX was reduced.

I saw a pain consultant by video link in September 2021 and she prescribed capsaicin cream and lidocaine patches for my joints and I've used them since. I was really concerned at the number and strength of painkillers I was taking at that time - up to 12 a day. I think I've only needed to take any painkillers a couple of times in the last 6 months and I put that down to the Amgevita, capsaicin and the lidocaine patches.

One thing I've learned since being diagnosed with a chronic disease is that I need to be more assertive with my requests from the medical fraternity - don't be passive. The other suggestion I'd make is to keep a daily diary of symptoms, treatments and medical interactions - I've found that invaluable as it's easy to forget things and not all the medics I've come across have read my files.

Hope you get sorted onto the correct treatment for you soon.

frogmorton

Great response @jamieA brilliant I hope it helps @Troy81 a lot.

Toni x

Troy81

Thanks for all the comments, really appreciate it.

I still have no appointment to discuss anything with consultant and have so many questions. The only appointment I have is for nurse led clinic to start Methotrexate. I want to discuss everything from treatments to side effects to what it means for my job (I am a nurse in an area that can have covid patients) and how it will affect my life.

I am so relieved that I finally know what's wrong after being dismissed for years but really angry at the way I have been treated and am still being treated.

My husband and friends try to understand but to them it looks like nothing is wrong, it really helps to talk to people going through the same, thanks.

jamieA

https://community.versusarthritis.org/discussion/comment/698350#Comment_698350

Hi @Troy81

One other suggestion I'd make is that if you are unhappy about your treatment - and I would be if I were you - put it in writing to whoever is dealing with your case. I was extremely unhappy about the way my first rheumatologist treated me and so I put it in writing in detail and I included a request to change consultant. That change has now happened and so far treatment and communication is far better.

Lindaa

I was diagnosed with psoriatic arthritis about 8 years ago after being fobbed off by dr. A different gp sent me to rheumatology. Immediate diagnosis and put on methotrexate i have never had a problem with it apart from the initial queasiness while my body got used to it . I also have leaking aortic valve inder regular review and osteoarthritis. Just had 2nd hip replacement.

My advice is to push for face to face appointments and for answers. Take note of other peoples experience but recognise yours though there might be similarities will not be tje same. Drug treatments affect people differently For me it was trial and error until the right balance was found but that might well change . I find the fatigue when I have overdone it the most difficult to deal with after a lifetime of being physically very fit and active. Staying positive is a big big factor in quality of life.

Push push push for information from your doctor and hospital You are entitled to proper advice and appointments with rheumatologists.