Newly diagnosed: Newly diagnosed, Hi to all! I'm a 5... - NRAS

NRAS

30,391 members36,531 posts

Newly diagnosed

Niao
Niao

Newly diagnosed, Hi to all!

I'm a 56 year old woman, have been living with pain and fatigue for 24 years plus due to Fibromyalgia, Osteoarthritis, Chronic migraines and the usual host of other things that accompany this!

Now, after spending the last 2 1/5 years in absolute agony, trying to get GPS/Consultants to take me seriously and not put everything down to my existing conditions, I have finally also been diagnosed with seropositive Rheumatoid arthritis, along with Sjorgrens. Inflammatory markers ‘ through the roof’.

I feel let down and angry, and ,of course, scared! As it has taken so long ,a lot if damage has already been done. Already have nodules etc, my elbows won't fully straighten or bend and my knees are in a very bad way! My hands are dreadful!

I have been started on prednisolone, on 3rd week , now tapering down from 2 weeks on 20mg, and Methotrexate, on 2nd week ,next week on 15mg.

Rheumatologist says I'm in for a long hard road to finding what suits and this looks like a very supportive forum with lots of great advice which I'm sure I will need!

Am feeling really rough today, yesterday was Methotrexate day and also a lowering of prednisolone. Pains are starting to resurface a bit after initially having an almost instant reduction in pain from the steroid. I suppose this is to be expected?

It has been great these last 2 weeks to be able to use my hands and to not have to spend 10 minutes sitting on the edge of the bed, crying, dreading getting up due to searing pain!

33 Replies
oldestnewest

Welcome to the forum, I'm really sorry to hear that you are one of the many that's been ignored over the years. Thankfully, the opposite has been my experience and my Inflammatory Arthritis has been caught so early that it remains 'undifferntiated'. I'm taking hydroxychloroquine and mtx too and so far I have only had one short blip of side effects which, of course I panicked about but have not had any issues since.I've learned so much from the other members on here, newbies and old timers 😉 alike. All experiences even from newly diagnosed people who are clueless or feel their in the dark can enormously helpful to those at a similar stage.

I am not sure what mtx is doing for me but it's early days yet, only about 6 weeks in. I have a creeping feeling that it might be doing some good. Episodes (flares) are getting further apart.

Niao
Niao in reply to Brychni

Thank you! It's great to have the support from those who know exactly what you're going through! You are only a few weeks ahead of me treatment wise so it will be interesting to see how our journey go!

Unfortunately MTX can take a long time to really work, so the pred only tides you over for a bit of this. BUT....be positive as the way you felt on prednisone shows that you can become hugely more mobile and pain free. It will just take a little bit more time. I was amazed how much better I was able to become as I really thought I would never get full use of my hands again.

Hopefully you’ll feel very different by christmas!

Niao
Niao in reply to helixhelix

Thank you! Yes, I feel you're right, getting that immediate relief from steroids maybe does mean I've hope in finding help from other meds. The use of your hands is such a huge thing, isn't it!

Bless you we all understand it’s horrible disease I couldn’t walk at one stage but now my life is good after eventually sorting my meds out we’re all different but you will get there hang in we’re all behind you x

Niao
Niao in reply to Soundofmusic52

Thank you, I really appreciate being welcomed and given your support! I know it'll take time but any improvements after these last few years of hell will be great! I too have struggled to hobble about on 2 sticks or a roll-top.

Niao
Niao in reply to Soundofmusic52

Sorry, rollator!

Sending you hugs 🤗 And welcome hope you get some long term relief soon

Niao
Niao in reply to essexgirl

Thank you, it means a lot!

I hope MTX helps you as much as it's helped me. I still have a few problems but reckon at 90-95% normal now. Wishing you well

Niao
Niao in reply to Gnarli

Oh I hope so! It's so good to hear positive experiences, thank you!

MJSlide1958
MJSlide1958 in reply to Gnarli

Hi, That is really good to hear. Are you only on MTX or taking it alongside another RA drug?

Gnarli
Gnarli in reply to MJSlide1958

Yup just 20mg MTX a week. In the early days it wasn't quite enough so I tried sulphasalazine on top which didn't suit then I tried hydroxychloroquine which also didn't suit.

Niao
Niao in reply to Gnarli

I think I will also be given hydroxy, not sure when, that was the plan. It is the medication side of things that scares me the most, as if there is a side effect to be had I will undoubtedly get it, being very sensitive to meds! In all my years with pain from Fibromyalgia and Osteoarthritis , migraines etc , I have only been able to tolerate Cocodamol 30/500 , all other tried meds have had nasty effects.

Gnarli
Gnarli in reply to Niao

Understood. However, we all react differently to the meds so you could be one of many who find it effective for them.

Niao
Niao in reply to Gnarli

I am hopeful! It really does help to hear from people with experience, and great to hear all the positive stories! Please excuse my ineptness at posting on boards! You'd think at my age I'd have mastered things but I'm not really one for social media and the like, have rarely posted, and am totally clueless when it comes to liking comments, replying etc, so if it seems like I'm liking all , replying to posts meant for others, please have patience!!!

Gnarli
Gnarli in reply to Niao

Not inept at all. I found navigating the forum to be a learning process. If in doubt, just ask as there are experts happy to share information

Niao
Niao in reply to Gnarli

Thanks!

MJSlide1958
MJSlide1958 in reply to Gnarli

Thanks, it is amazing that you only have to take MTX and getting on well, that is good news for all.

Welcome! This is a great place for advice, information and support although obviously we'd all rather not be here! 🙄😏😁 Waiting for medication to work is hard but well worth it so keep reading and posting 😉

Niao
Niao in reply to Boxerlady

Quite! We are lucky to have this, it really does help to hear from others, get support and advice, rant, and just know you're not alone! Thank you!

Hi Niao and welcome to the forum. I'm sorry to hear it's taken so long for them to diagnose you which has resulted in you now having a lot of damage. It will take a while for the MTX to kick in but when it does, you will be feeling a lot better. Good luck. xx

Niao
Niao in reply to springcross

Thank you! Yes, have to admit to still feeling really let down by that but I know I'm not alone there! I hope I will!

It helped me a fair bit. Good luck

Niao
Niao in reply to Rashford20

Thank you, that gives me hope!

Hello Niao and welcome. I'm rather surprised you have been told to taper off the Prednisolone so soon as the MTX will probably take a few more weeks to become fully effective. Was this taper programme recommended by your Rheumatologist or is it your own idea? You've discovered that steroids can make you feel much better and allow you to function more normally so, if you are really struggling at the moment, you could stop reducing the dose or even increase it a little to get you through this waiting period. No one wants to continue to take them if their RA is under control but as you are in pain and yours isn't yet you could be kind to yourself and keep up the Prednisolone for a while.

Niao
Niao in reply to Lolabridge

Rheumatologist said to take 20mg for 2 weeks, then 15mg for 2 weeks, then 10mg for 2 weeks, then 5mg after that, How long on the 5mg I'm not sure. So I still have a good few weeks on steroids it's just that having gone down to 15mg, I'm already noticing a return of pains. It's great to get advice from all of you and now I know I can ask to up the dose or alternatives if need be. Thank you!

I think most of us could say we have pretty much gone through a similar track as you are. I agree with others that Methotrexate typically takes a good 12 weeks plus to really start showing an effect and bearing in mind you have seen a worsening after immediately tapering down from 20mg Prednisolone I wonder if 1) you have been more active and used your body more as you were starting to feel better? Or 2) your inflammation is likely to be well set in after so long and shows that you should be put on a slower tapering programme. I would definitely speak to your Rheumatologist as soon as possible to make him aware and suggest , maybe, you alternate tapering days ( ie one day 20mg, next 15mg, next 20mg etc to ease you through the change)? Or does it suggest you need to stay on 20mg daily for longer to get more of the inflammation out of your system? Did he consider giving you a depo medrone steroid shot? Oh course in no way am I giving medical advice but purely aware of different options that other sufferers have found work... after taking medical advice. You do have options.

Niao
Niao in reply to Deniseelk

Thank you so much, I have already got great advice from all of you. Yes you could well be right and I now know I can have more input into meds etc. I think I may have been overdoing things a little, just because it has been amazing to be able to use my body without so much pain! I will definitely talk with Rheumatologist if I continue to see heightening of pains.

Welcome to this lovely forum. I am fairly new in my journey and have been on MTX for around 16 weeks now. Due to start my increased dose of MTX on Monday. I too have been on prednisolone for the last seven months and had a depo medrone injection this week to help settle things down more for me. I have learnt some very valuable lessons along the way, being patient whilst the meds are getting into my system, keeping in touch with my rheumatology team regularly if struggling so tweaks for meds can be actioned sooner. Be kind to myself and try my best to pace myself better. Very much still trying with this. Do keep in touch with us all when you can and know that we are all here to support you any time. Gail x

Niao
Niao in reply to Summerrain14

Thank you Gail. Rheumatologist said I've probably a long hard road ahead trying to find the correct combo etc. I know it's the same for all of us and I am really thankful to have this forum and the support of others in the same boat. I should know rightly about pacing myself, having lived with Fibromyalgia for over 24 years, but I have been overdoing things a little because I was just so excited at having movable fingers , legs and arms etc. again!

It might not be that you “have a hard road ahead trying to find the right combo.” The standard MTX/Hydroxy combo was the first thing I was treated with (after a month or so on the steroid, now off it) and it has helped me tremendously. I can play the piano again. It took a full 5 months for this to happen, though, so don’t get discouraged. I was on 8 pills of MTX a week (2 hydroxy per day) but just today gave myself my first injection due to serious stomach upsets (it didn’t hurt!), and hoping I’ll be able to tolerate the MTX better this way. Best of luck to you.

Niao
Niao in reply to Windonmyface

Thank you, that's encouraging! Yes, I think they intend to add in the Hydroxy too. I have many stomach issues and can see maybe having to go for injections also. I am so glad you are able to play piano again, to have such a gift and to have lose the ability to use it it properly must have been scary and really tough!

You may also like...