How to tell if there are improvements?

[HappyD34]

Hello all. Seems a bit of an obvious answer , one might think less pain, flares etc. I started 15 mg of metoject on 17 Oct, I month later to 20 mg and then 3 weeks ago to 25mg. Personally I just don’t feel any different. The main issue was my knee . Since it was aspirated in sept it has remained with only low level synovial fluid acc to consultant. I have very small amount ( lasts for minutes) of mild discomfort in elbows and what feels like very mild burning sensation in thighs . I swear since I started methotrexate I just feel this disease moves swiftly around my body ! I have an appointment early April again which am grateful for but is it worth contacting rheumy nurses ?.

How have others felt with increases etc, has it made any difference?

Feel very low as on NRAS site there is one story of someone who sadly passed away at 40 fron heart attack and the link to top tips for heart I felt was very distressing, learning that those with AI diseases are higher risk etc. I just feel doom and gloom for any future .

sorry for the long post 🥹

[Deeb1764]

I had a horrible time on MTX so personally, I did call The RA nurses and talk it out. Some people will of course say this was their drug. It’s very hit and miss what drug might work for you, as it’s that type of illness.

I took 4 drugs before I was put on Baritcitnib which made a huge difference BUT had to come off it due to cardiovascular issues.

I think re cardio issues its good to bear in mind most people die from a cardiovascular disease ( beautifully put by my GP) in the end so maybe put that on the back burner unless you have family history or experience of. We could worry about every disease coming our way so deal with the here and now if you can.

NRAS run a great helpline to talk things out and The Wren Project too.

I have had a lot of conditions thrown at me since being diagnosed with RA some blow My mind but I work on the basis of how am I doing today and try to “live”in the moment in my weird and wonderful way. Different but it’s the way it has to be 🥰

[HappyD34 in reply to Deeb1764]

Hi Deeb ☺️. I do hope you manage to get the right drug for you and I’m so sorry to hear that you’ve really gone through and probably still are. I hope you get your cardio issues sorted . It’s actually a good point your GP made, I never thought of it like that . I’ve been in contact with the Wren team today and booked for private counselling also , thank god I saved! I guess it’s seropostive in me that I fear , plus all the rest. I do hope you’re ok tho. Good advice, thank you x

[Deeb1764 in reply to HappyD34]

I am going through some testing and another “new consultant” after a locum disaster one and trying to work out what’s best next! I have COPD and aortic stenosis and a few Other issues but I just take each day as it comes and try to keep the humour going. Can be hit and miss but Wren were and have been fab for me too.

[HappyD34 in reply to Deeb1764]

Yes I saw and replied to your post re locum , absolutely appalling. I’m sure you’ll get there Deeb, seems you have a positive mindset and that counts for sooooo much. Hugs 🤗

[Thingybob]

Hiya, I gradually worked my way up to 20mg of mtx over a period of a few years. I started on the tablets then changed to injections too. At each increase i wondered whether it made any difference until things improved significantly....... in what seemed like a week or so. It wasnt until i had been on 20mg for about 6 months that i noticed the real change and then the improvement happened quickly.. I had been on 17.5 for quite a while before my rheumy said to try 20mg. I think my body just took a while to get used to each dose and for me to eventually find the dose that worked. I know it takes 12 weeks for each change to have impact. All the best 🙂

[HappyD34 in reply to Thingybob]

Hiya 😃. That’s great to hear, I know we’re all different but this has helped me a lot . All the best

[Fedupnow63 in reply to Thingybob]

Hi Thingybob hope you don’t mind me asking why you went from methotrexate tablets to injections ? Thank you 😊

[Thingybob in reply to Fedupnow63]

I changed early on as the tablets made me feel sooooo nauseous. I still get some nausea, fatigue and general malaise on the day after my injection but not nearly as bad as when on the tablets. I dont want to change to another drug as mtx seems to work well for me atm.Also if you change to injections the dose can be less ..so 20mg jab is the same as 25mg tablets....as it bypasses the gut and goes directly into your system , so i guess thats a positive 🤷‍♀️.

All the best 🙂

[Fedupnow63 in reply to Thingybob]

Thank you hope your reply 😊

[Lhasalover]

Hi, sorry you are feeling low at the moment. Getting to grips with the realities of an autoimmune condition is tough especially in the early phase. I was diagnosed with RA and a few months later my husband with Psoriatic. It feels like ages waiting to see if the meds you get prescribed will work, the months that pass seem endless! Eventually however Methotrexate did work for both my husband and I. It took longer for my hubby and the rhemy kept on increasing until it had a sufficient effect. Both of us came to the realisation it's a bit of a balancing act the rhemy works to, basically the minimum amount of meds to help control the condition so it has the minimum impact upon your immunity level. I remember at times feeling a bit confused about whether my expectations were too high and what was going to be good enough. I'd suggest you keep a diary and take photos on your phone of anything that looks swollen and take this info into appointments with you. This seemed to be helpful to the rhemy team. If after giving the meds time to work, you feel you aren't where you hoped to be, don't hesitate to feed this back to the rhemy team looking after you.

The wider and little acknowledged aspects of autoimmune conditions such as increased risks of stroke and cardio are scary. I've made some small steps to try and improve the outlook, one area for example, is by increasing the fibre in my diet. In the western world we don't tend to get anywhere near the recommended daily intake of fibre, so increasing fibre is a good place to start. I also now take a magnesium supplement, not only does this help to calm the nervous system but also helps improve cardio outlook. Again our modern diets are often lacking in magnesium. I guess by making these changes it makes me feel as though I have taken back a little more control of my own health. Also I feel once you get to the stage where you feel you are on the "right" meds and that your condition is well managed, the enormity of the diagnosis seems to fade into the background and you will find yourself getting on with life again! So in summary this stage of your journey is very much about patience (easy said than done I know!), self care and making the changes that are in your control. I hope this helps and wishing you all the best x

[HappyD34 in reply to Lhasalover]

Oh that’s so helpful, thank you. I guess we none of us know what’s around the corner and best we don’t. I don’t swell, seems weird but the ache jumps around. To be fair it’s not that bad but I expected more ( to feel nothing) . It’s just learning the new norm and when to call it a day with meds. Warmest wishes too x

[Lhasalover in reply to HappyD34]

You are so very welcome ...... had a little brain storm this afternoon with my husband. Wondered if you have tried red light therapy? Red light is known (actually proven) to reduce inflammation levels. Hubby has one from Primal living that is especially for the knee. It's so useful cos you can actually open it up and place on other parts of your body too. It's one of those things that you look at and wonder how does that work, but it sure does! I reluctantly came to the conclusion prescription meds are the cornerstone of inflammation management, but not the magic silver bullet and as such other tools help too alongside the meds. Please consider red light and I really do hope this adds another tool to your toolbox. best regards x

[HappyD34 in reply to Lhasalover]

Oh wow, no never heard of it but shall certainly look it up now . Thank you so much 👏👏👏👍🥰

[Boxerlady]

I remember ringing the nurses when things hadn't improved for me when my Methotrexate was put up to 25 mg (I was also on Hydroxychloroquin) and feeling a bit guilty because I hadn't waited for the recommended 12 weeks but she was pleased that I'd let them know. She went through my symptoms in detail, spoke to the consultant and then called me in for a f2f check (despite it being during lockdown) and added Sulphasalzine. Happily that did the trick for me and I've since been able to reduce the Methotrexate to 15 mg. Maybe give it a few more weeks and if you don't feel any better, give them a ring?

[HappyD34 in reply to Boxerlady]

Hi there. Gosh sounds like you have a good team behind you and delighted to hear all is good . I’ve just taken my 3rd shot , bloods due tomorrow so I’ll see what that comes back with and as you say maybe a call is due . All the best and thanks for replying

[GinnyE]

First things first ; hope they get your pain sorted.

The lady who died at 40 was very unlucky, wasn’t she. She may have had other problems too. It doesn’t mean it will happen to you (or, more importantly, to me!) or anyone else with RA. You sound like you might have my problem, over active imagination. I can scare myself senseless over just about anything. I did a bit of calming research, read a few books, years ago that helps a lot. Try not to dwell on “what if”. As my old Mum used to say “You die if you worry, you die if you don’t worry, so why worry?” She passed away aged 91.

[HappyD34 in reply to GinnyE]

Hi Ginny, oh I could hug you ☺️. Yes I have a very active and over active brain but I like your mums words 🥰. It is so dreadfully sad that this lady passed away and it’s right to share the story, I think I just spooked myself. Trying meditation and counselling. I’m not proud, just desperate to find me again. I’m sure I will one day. Hope things are bright and beautiful for you .

[PCStrawberry]

Personally, we jumped past MTX and straight into biologicals. For my wife, Humira was incredible, but dead stopped working at 7-8 months. Next up, Enbrel, it worked at around 6/10 level, post injection, with a low ebb toward the end of every week to 3/10. Unfortunately, it never worked any better. We're now preparing to transition to RINVOQ for her next leap of faith. Our experience ... autoimmune diseases are a 24/7 internal game of Whack A Mole. Chin up, winning is possible. My wife was in remission for years AND we're going to be there again.

[HappyD34]

Hello there. Thank you for your reply. I’m sorry your wife is going through this all but fingers crossed she will get there . A lid for every teapot ☺️. Never thought I’d mutter the words it would be nice to be steady ☺️