Hi there, I'm new!

Inarinori

Hi there,

I'm new here but have been reading up on various threads since I was first diagnosed back in October. I found the community really useful: thank you for sharing your personal experiences, it has been a real help for me.

A little bit about me: I was diagnosed with PsA and psoriatic spondylitis 12 weeks ago and have been on methotrexate for the same amount of time. The diagnosis was very fast, in- and out of the rheumatologist's clinic in under 15 minutes. There was no shared decision making in terms of treatment, instead I was told that I'm in good hands, we caught it early (I only had mild symptoms for 8 months) and there are good drugs to help me. I diligently started my treatment the next day, albeit with a lot of apprehension. As the days went on and side effects kicked in, I started to get worried that I'm taking these drugs and perhaps I was misdiagnosed. That's when I started to do my own research and visit the forum 😊 As the weeks progressed my side effects were impacting my everyday life.

Since then it has been a rollercoaster, I swing from thinking 'is my diagnosis correct?' to 'give it time and the experts know what they're doing'.

Fast forward and my side effects have improved quite a bit, I now inject the methotrexate and am happy with that. The biggest problem at the moment is that 12 weeks in and my overall symptoms (joint pain across hands, feet and hips) have become a constant companion. The pain is a lot more prevalent than it was before my diagnosis, so overall I wonder why hasn't the methotrexate improved my joint pain?? My scalp psoriasis has gone away fully already after a few weeks of taking MTX, but the joint pain has got worse, it's more painful and a lot more frequent.

Has anyone had to wait over 12 weeks for the methotrexate to start working? I saw the rheumy nurse two weeks ago and she said to give it time. My next rheumatology appointment is in February. I will stick it out until then before I reassess with my doc.

Thanks for reading 😊

Arciere

Hi There

That’s an interesting journey.

Your story resonates with me. I continue to question if I have Psoriatic Arthritis or Spondyloarthritis? due to discomfort in my pelvis. The last letter I had form the consultant just said Inflammatory Athropathy yet I saw her notes, in which she had written “probably is PsA”. I’ve spent a lot of time thinking about this - wondering if I should pay for a second opinion. My diagnosis was from ultrasound and other symptoms. Although I think the medication is the same so I’m not sure if it matters.

I thought I’d just answer your question about methotrexate - it didn’t work for me. Just changed my character…so then after 12 weeks we moved to Sulfasalazine which I felt didn’t work either, before moving to Yulflyma which works brilliantly for me. I think there are loads of different drugs to try until you land on one that works for you.

I did have a hard stop between two of the three drugs I’ve taken and I don’t recommend it - the drug was doing something and I became incredibly poorly - I could hardly walk. So if something isn’t working my 2 pennies is to discuss and agree a plan with the medics.

Hope this helps and I hope you feel better soon. Winter is not the friend of anyone with arthritic pain.

Inarinori

Hi Arciere,

Nice to e-meet you. How interesting…

It is concerning when the foundation is potentially wobbly, because any treatment plan will be based on that. I also saw that a lot of the treatments for inflammatory types of arthritis are similar, in which case we're on the right track.

Thank you for sharing your experience re drugs. When you say it didn't work - do you mean it didn't help to relieve your symptoms? I just assumed that if methotrexate doesn't work, it might be because I got misdiagnosed. I also thought that patients moving to different drugs would be down to side effects rather than the drugs not actually helping with the inflammation. So that's helpful to know.

You are right about winter. In my case, it's the hands! Brrrr.

On the bright side, this w/e I can finally dye my hair. As my psoriasis is now gone, there is no holding back! 👩‍🎤

Thanks again.

Inarinori

Ps 4 Arciere: glad to hear that you have found the drug that works for you!

olivia_b

Hello @Inarinori and welcome to the Community. We are a friendly and supportive group and I hope that will be your experience too.

Thank you for sharing your story, it is a very interesting read.

As for waiting for MTX to work, I started MTX in Oct 2023 and stopped it in Dec 2023 at it was not working and making me sick but I was told to give it 8-12 weeks as a trial to see if it worked as it takes time to kick in, the same with most treatments.

From what I have read, it is more likely the drug is not right for you than a misdiagnosis however both can happen of course.

I would wait until your appointment in February like you said and hopefully you can find some answers then.

Wishing you all the best,

Olivia x

Arciere

Hello @Inarinori

Yes, when I say Methotrexate didn’t work for me, I guess I meant that I was still suffering stiffness-pain and fatigue. Although I also couldn’t stand the side affects from a psychological perspective and, it did make me feel kind of car sick after taking it. So I suppose the change can be for both the side affects and, the effectiveness.

My new motto is let food be thy medicine. It could be a coincidence of the medication, but since changing my diet quite radically, I do feel much much better. I have also distanced myself from a stressful scenario - which has also helped, I think.

Inarinori

Hi @Arciere

Thanks for explaining. That's a good way of describing my symptoms too: stiffness-pain and fatigue. I feel it's worst during the night, maybe because it's quiet and it's really easy to home in on the pain in one particular part of my body. My sickness/nausea has now gone (after 12 weeks of MTX and switching to injections). I sympathise on the mood front, I've felt down but I'm not sure if it's the whole situation or the MTX. Time will tell I guess.

I'm interested to hear that alongside the medicines there is another aspect of support, a more natural one with food. I eat a lot of fermented foods (sourdough, sauerkraut, kombucha, kefir etc.), all home made and hopefully supporting my gut microbiome. I was wondering, if I end up on biologics will I still be able to eat home-made fermented foods? Do you mind me asking what sort of dietary changes you have made?

Good tip about stressful scenarios, thanks for sharing ☺️

Inarinori

Hi @olivia_b

Thanks for your message and sharing your experience with MTX. I think you're right, I will hang fire and see if it helps over the next few weeks.

In February I will see a different rheumatologist (it just so happens that the clinic is in another hospital). I will take the opportunity to ask about my diagnosis. I will try and be discreet and not make it about his rheumatologist colleague, and whether he misdiagnosed me. Instead I will try and understand the diagnosis in more detail and go over the pros and cons of the different treatments. Alongside the MTX I was also given a steroid injection in my bottom also back in October, BUT overall my symptoms definitely got worse after that. To the point that I was wondering whether the MTX is making my joint stiffness-pain worse, more consistent and persistent.

I also found out in my last rheumy nurse appointment that I have seronegative psoriatic arthritis, which makes the diagnosis more tenuous in my eyes (but not sure if that's a correct assessment 🤷‍♀️ ). Anyway, questions I will ask in February!

Many thanks, x

Arciere

Hi,

Well, like you I attempt to consume probiotics such as kefir and things, although not home made. I read a book called “Supergut” earlier this year which has recipes for probiotic homemade yogurts with bacteria for specific health issues, which was interesting. Then I try to maintain a varied amount of veg for the fibre.

Other things I’ve banned based on personal anecdotal experiences include gluten, artificial sweetener and the deadlynight shade veg (potatoes, peppers, tomatoes and aubergines etc). It may have no effect whatsoever, but I feel good for it, although I think gluten-free initially caused a higher sugar intake, as I find gluten free products have a worse list of ingredients and terribly high sugar levels mostly. I think sugar also causes an inflammatory response in my case. I also try to stay hydrated but avoid all drinks with sweeteners.

There are some recipe books for rheumatoid arthritis on Amazon etc.

The only dietary change I’ve made due to the biologic medication is avoiding some cheeses. I haven’t been advised to, but I just feel trepidation about that I guess, despite my feelings about probiotic foods.