Psoriatic Arthritis -No meds option for PsA?

Bordergirl

Hi anyone forgone starting any of the first line treatments for PsA then had a xray/scan etc further dwn the line to be told there’s further deterioration in bones. I’m not being offered ANY X-rays to see where my bone health / damage is, I have painful hip/ groin and a swollen ankle/ foot all the time ( amongst all the other areas of pain)! So I’m trying to avoid ‘heavy’ meds as they are no walk in the park and a drug is still a drug and other organs are involved etc , I’m also not looking forward to the hideous side effects lots write about, so I don’t know how people gauge when to start on PsA meds ie sulphasalazine/ methotrexate DMARDS Biologics etc. I only have pain ( although horrific at times!) no skin issues apart from pitting nails so I can take pain meds , but wanted to ask those on the above PsA ( or other forms of arthritis) meds, do u still need ur analgesia/ NSAIDs etc as well or do the drugs above stop the need for all that please? Xx I’ve got lots to learn! Also is a Dexta scan of any use in PsA? Is it just bones that get damaged or muscle/tendon ect. I suppose I wd just like some visual evidence rather than you cd deteriorate slowly or rapidly. X

stickywicket

No meds? Don't try it. I was diagnosed with RA at 15. There were no modern DMARDS around back then so it was just NSAIDS which wrecked my stomach as there were no stomach-protecting meds either. 20 years on I needed new knees. I said I thought you only got them with OA, not RA. "Oh" was the reply, "you've got that too." DMARDS hold back the disease. Without them, the disease has free rein and, when it's done its worst, it ushers in OA. By then, even with DMARDS, pain relief will probably also be needed.

I don't think a DXA scan would tell you much, if anything, about PsA but you could ask. Do get on DMARDS, though.

frogmorton

Oh gosh.

Please reconsider your medication.

Like stickywicket ibuprofen ruined my stomach longvterm they aren't great

Could you consider taking a DMARD maybe the weakest of your options to start with? Sulfa? Methotrexate can have side effects (for some people) but sulf is generally very well tolerated.

By the way your groin pain.....have you had your hip checked out? A lot on here report groin pain and it turns out to be their hip. Just a thought.

Anyway this is very much a personal choice whatever you decide you will have our support here.

Take care

jamieA

https://community.versusarthritis.org/discussion/55511/psoriatic-arthritis-no-meds-option-for-psa

I was only diagnosed with PsA in October last year aged 65. It did however hit me really hard quickly - within 4 weeks of diagnosis I couldn't close my hands, move my shoulder joints or put any weight on my left leg. I was initially put on sulfasalazine then after 3 months methotrexate was added. Neither really worked for me and the only respite came from steroids, firstly high dose oral prednisolone and then kenalog injections - I think I had 10 in 9 months. In late July I was put on Amgevita - an Adalimumab biosimilar - and can honestly say the difference has been life changing. I've thrown away my elbow crutches and been back to walking 50-60kms per week some weeks and I haven't had a steroid since June. My blood tests in November last year showed a CRP level of 340 - last month it was down to 1. My rheumatologist has now halved my methotrexate dose.

I know there are downsides to the drugs - and everyone is different in how they react. I know I need to be both watchful and careful but returning to how I was for the first 9 months after diagnosis is not something I would want to contemplate - or wish on anyone.

DorothyParker

Hi. I understand the temptation but I wouldn't do it. Irreversible damage is just that. In the very unlikely event you have any problems with medication, monitoring means it's usually picked up before any real damage is done. And long-term NSAID use isn't exactly risk free either.

It's a rubbish situation. I have PsA. I don't want it. I don't want to be taking all this medication either. But these are my options.

I believe I was undermedicated in the early days because my first rheumatologist didn't pick up that I had PsA - like you I have no real skin disease, just nail pitting - so she was treating my disease like it was very mild due to normal blood tests. I was given hydroxychloroquine, which was fine for a while but I was deteriorating rapidly and within a year I had joint erosions in my fingers. And, crucially, a new rheumatologist.

Everyone is going to react differently to drugs but they're not really as bad as they look. I was terrified of methotrexate but I started it recently and it's actually not been bad at all and is working after only a short time. I wish I'd tried it sooner, but I was worried about pregnancy so I agreed to sulfasalazine instead. That didn't work out well for me. Biologics are a walk in the park for me side effects wise, they just don't work as well as methotrexate. Since taking methotrexate and Cosentyx (I have axial disease with my PsA) I don't have to take painkillers every day anymore, but sometimes I take naproxen for my back pain.

I don't think DEXA scans are particularly useful for PsA, though I'm not medical or an expert at all so don't take my word for it. But I don't think it would show damage from PsA. But PsA increases your risk of osteoporosis, so a DEXA scan would pick that up. Especially important to take steps to avoid osteoporosis for we women in our prime, doubly so if you have PsA. So lots of weight-bearing exercise like walking is good.

They don't really like doing x-rays and I'm not sure how useful they are as they'd only pick up advanced damage. Ultrasound scans would be better to see effects of inflammation, especially as PsA affects tendons so often.

Bordergirl

Thank you so much everyone sorry for massive delay replying when u were all so so helpful All great words … since writing I’ve got my first rhumey specialist nurse appointment in 7 days to discuss meds prob sulph or metho and will take whatever she offers based on all ur experiences. I’m definitely worse since I wrote as well. Stiffer and burning arms ( that cd also be my fibromyalgia of course) So time is of the essence now thank you for reassuring me meds are best and I won’t grow a second head or something! 🤣😂🤣😂 xx

frogmorton

Hi @Bordergirl

I am so pleased you are going to try some medication. You definitely won't grow two heads😁but will I hope see an improvement in your joints.

Do let us know how you get on and any issues we will be more than happy to share our tips👍️

Bordergirl

Thank you frogmorton.liked ur “not going to grow two heads” comment 🤣😂. So I was diagnosed with Psoriatic Arthritis and nurse thinks maybe my hip that won’t flex properly may be osteoarthritis. ( but didn’t say what I do about it!!) I was prescribed Methotrexate 10mg plus 4 mg folic acid both weekly. But Ivsee lots here take it 6 days/wk then that combats the nausea.. what shd I do? Ask the nurse if I can try that or wait to see IF I feel nauseous 1st? Yes I’m petrified and cried tons yesterday ( hated the 9 x-rays I had to have as well) as I am a massive alternative health lover and qualified homeopath & qualified nurse .I’m not supposed to be the patient ( I know that sounds disrespectful I don’t mean it too) so it really was hard for me. But I’m sensible I know I can no longer risk any further joint damage. & I might be pleasantly surprised that life dosent have to be going from one flare to the next with pain inbetween just for sitting wrong in the car or classroom etc. I’m mostly terrified of the metho making me washed out tired ( I have a bit of a weird phobia about being tired and “ not coping if washed out”). Plus of course the nausea that’s talked about. (Im not even going to go there about liver etc) I’m thinking I feel so crappy right now… surely No more , why would I subject myself to more bed ridden time and risk being struck off for more time off sick. I have yet to read yet if anyone benefitted from Metho and what exactly was made better? So that not encouraging me to just get on with it and be brave. I also am not sure whether to tell my boss I’m starting on metho . Since covid I was already a nervous wreck going around wards visiting my case load of patients and now that metho can make us slightly more delicate with immune system Im now thinking my nursing days are over. Such a lot going round my worrisome mind! I'm also wondering if I need someone at home the day or days after having my 1st dose . I think I will be too panicky doing it alone. I know I need a better more positive attitude though but I’m not there yet. I saw one lady got a bad migraine ( I get hemiplegic migraines) so I’m scared of it triggering one. I’m such a big baby really. I need to gather myself and calm down . Thank you for all your kind support x

I’m also getting new symptoms in last weeks of extremely stiff shaky arms or legs with weakness and feel very heavy. It freaks me out to be honest and sends me panicking . I have burning arm shoulder wrists too. Never been this bad where I feel unable to drive or too scared to Potter around the lower floors of the hospital where I work for fear I won’t have the strength or be too stiff to make it down stairs further or back up to top floor to my office . I said I’d rather have a full pain flare than this stiffness and burning arm, shoulder, wrists. It is ok for a bit in the morning then bam! mid morning hits me. Anyone else ?