feeling a little hopeless!

[Becrosep]

hi all,

First time posting on here! I have been reading all the threads and finding lots of comfort, so thought I’d reach out.

I was diagnosed with psoriatic arthritis in mid-March. It took almost three years to get my diagnosis due to my symptoms not “fitting in a box” (words of the Rheumy nurse). I have only ever had problems with my right knee which occurred seemingly overnight. I woke up one day in 2021 with a very swollen knee. After an MRI and X Ray not showing any injury, I was discharged. I have had lots of physio, but the terrible chronic swelling continued to go up and down. I finally self-referred to Rheumatology as I felt in my gut there was something else going on, which is when I got this diagnosis based on the fact I had psoriasis as a child, and my mother still suffers with it.

Anyway, I have been taking methotrexate now for 8 weeks and my knee swelling continues to go up and down. I can’t say I’ve noticed any improvement, it might be 10% better but really hard to judge as it’s so up and down anyway!

Just wanted to find out whether anyone has experience of methotrexate taking this long to bring swelling down? I’ve read a lot about how it can take up to 12 weeks but is that to reach full efficacy? Because if so I feel very far away from that…

thanks so much,

becci x

[welsh12]

It can take a good few months people are often offered a steroid injection in the interim

[Neonkittie17]

So sorry to hear re your knee. Hopefully someone comes along on here who has experience of psoriatic arthritis (mine is RA) but just to tell you that Mtx can be slower to work for RA and it took 3 months for me to feel a real improvement and then it kept improving week by week. I was feeling something definite though by week 8. My knee swelling was intermittent too, even after being on Mtx for many months. It’s always flared in one knee more than anywhere else. Once the rheumy was sure Mtx was improving my RA by my ESR going down considerably and less swollen joints etc., she then authorised a knee steroid injection and that helped a lot.

Do your blood tests : CRP/inflammation levels show that Mtx is lowering them? I was monitored after a month and then 2 months then 3 when starting Mtx but as I said I’m not sure with PA it shows in the blood the same way as RA. I hope it’s just a bit slower for you to work and it kicks in soon. If you had a steroid knee injection to relieve the knee swelling etc, it would confuse as to whether the Mtx is doing something. Hope it starts to improve for you very soon. 🙏

PS. My knee was almost at bursting point so definitely needed the steroid injection. If my senior rheumy said so then it needed it. She doesn’t give those out easily.

[AgedCrone]

To be honest how long one feels a benefit from any Dmard varies greatly.

On .Mtx I benefitted really quickly, but on others it took up to 5/6 months.

So just be patient for a while longer & if you can stay away from steroid injections…do! Yes, they can give fast relief to some…but can also cause unwanted side effects later down the line,

Fingers crossed you feel some benefit soon.

[Madmusiclover]

Keep going for now. It may not work; so after 12 weeks if that is the case; go back! Well done for persisting.

[Deeb1764]

if in 12 weeks no change make sure you speak to the RA team. It might seem slow but you need to let the drug build up in your system if not having adverse effects to see if it will kick in. However if it does not then you need to voice your concerns too. It’s a trip of calls and gaining knowledge and feedback in the beginning and maybe a journal too, so you remember what goes on and when.

[coralflux]

I too developed massive swelling in both knees in 2021. I was on crutches and so miserable. I too was put on methotrexate and it took a very long time to do anything and meanwhile it had attendant horrid side effects. Hair falling out, mouth ulcers, disturbed sleep, muscle wastage, weight gain, fatigue, nausea, flushes etc. I found it very hard to see a rheumatologist and I became very depressed with the downturn in my physical prospects. As they say on here, everyone has a different journey, but my story is this. I am an academic, so I kept careful notes and read a lot around the subject. I began to think that the symptoms were reactionary RA brought on by the Covid jabs at the time. So after the first three jabs, I stopped having them. I was on 15mg MTX and also tried various other drugs including having an infusion of Rituximab and weekly injections of a biologic (Adalimumab).

Today I have moved from London to a less polluted and less stressful environment and I am doing yoga, Pilates and Aqua aerobics 6 times a week. I have halved my MTX to 7.5mg a week. (I did this gradually and unsupervised and having resisted the idea of injecting the MTX as I feel suspicious of any treatment that appears to be being ‘pushed’ to everyone) I still hate taking the MTX and if I could EVER get to see a rheumatologist I would discuss reducing the dose to eliminate it altogether. Another big change I made was going on a Keto diet. This is a low inflammation diet that cuts down drastically on carbs and sugar. I have started to lose weight and gain energy and feel more in control of my body. Almost no pain and much less swelling all over. I don’t think my knees will ever fully recover and my running days are over, but I feel it is controllable. I wish I could corroborate my experience with medical advice, but I cannot get to see a doctor at all. They always say you cannot recover from RA and that may be true, but there was no history of it in my family and I have read other accounts that suggest the knee swelling and sudden onset of RA may be a reaction to Covid Jabs, in which case we are in new territory and maybe, just maybe, there is hope…

[Ritaritis]

I've been taking methotrexate for months, swelling goes up and down. Will be glad when I have the knee surgery and able to drive and walk properly again. Live near the Staffordshire Moorlands and fell inlove with Tittesworth reservoir. There's no buses from where I live and a taxi is/would be astronomical.🐈

[stbernhard]

Hi Becci, I suppose RA has got to start somewhere. Mine started in the left knee with pain and swelling. It took a long time to get back to painless and normal walking (about 12 months), but I never stopped walking and exercising and am sure this helped towards my recovery.

I would strongly recommend that you have a look at the NRAS website. There is a lot of very useful and well researched information on there. EG. nras.org.uk/product/new2ra/ -nras.org.uk/2021/09/17/nati... - an interactive learning and self management tool which is brilliant. Also a section where you can find everything about all the medications available for treatment. If you need any advice you can contact their help line on 0800 298 7650. They are very knowledgeable and know where you're coming from.

All the very best and hang on in there. You are much stronger than you maybe think or feel at the moment.

[Happy5]

Hello welcome aboard the journey we didn't want to take. Re MTX I was started on tablets changed to injection pen . MTX takes a while (3 months approx) to kick in if it's going to work.

First year is a roller coaster finding best meds for you which works, your body getting used to it all, as well as the condition. I was able to speak with a specialist nurse who answered all my questions, used her lunch hour for me, bless. Have you had a chance to do that? Ask about your knee if anything can be done to relieve it?

Feel free to ask about efficacy of treatment after the 3 month window if not improving. My friend had to try 3 different treatments to find what worked for him, he's now on something which is working.

All the best 😊