HOPE: Hey I need some advice... I have recently been... - NRAS

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VTxx profile image
VTxx
32 Replies

Hey

I need some advice...

I have recently been diagnosed with RA, im 32 and a personal trainer,yoga teacher and spend my life in the gym. That was until a few months back anyway! I have recently gone onto methetraxate its been 6 weeks now and I havnt felt much relief at all yet, only from setroids which are keeping me going. I have had to quit my job as gym manager and take a huge step back from my yoga and fitness. Its been 4 months since i could place my hands on the floor as my wrists cant take it! I miss my yoga so much and its really getting me down. Can someone help or at least give me some hope in things to come? I want to be able to do yoga again and really worried I never will 😪...anyone? X

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VTxx profile image
VTxx
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32 Replies
Kerensa21 profile image
Kerensa21

There’s loads of info online & YouTube videos for yoga with rheumatoid arthritis; won’t patronise you by attaching any as you’re far more qualified to judge than me. I had a really good ken lamm dvd on tai chi for arthritis too, gentle and swimming’s easy on joints I find. Really sorry you’ve been dx with this; hope you improve once they get it more under control 🙂

VTxx profile image
VTxx in reply to Kerensa21

Thankyou. I am just starting to lose hope with this methotraxate and just dont know if it will have any effect. Do you take it? Or does anyone have any success from it? X

Kerensa21 profile image
Kerensa21 in reply to VTxx

I took it for over a year, then added Hydroxychloroquine, now on a biosimilar. They said at the time it took up to 12 weeks to work, sorry 😐

Don’t worry about using advice line for any problems or if it’s not helping after a time. It’s frustrating everything takes so long with this but NRAS online do really good free booklets on everything RA & meds etc. I know I didn’t have anywhere near enough info from hospital.

PS there’s a couple of younger, newly dx people on here; if you lock post to community might get more replies 👍 click on ‘more’ at bottom of your post + edit, scroll to bottom of post, click ‘community only’, it’s not obvious on posts as it’s right at the end when you write new one🙂

SarahJane926 profile image
SarahJane926 in reply to Kerensa21

They want to give me Hydroxychloroquine too in addition to taking Methotrexate - how did you feel with them both? I'm worried about side effects 😑

Kerensa21 profile image
Kerensa21 in reply to SarahJane926

I think everyone does but uncontrolled RD’s no fun either. All you can do is try I guess; just because they didn’t work well enough for me doesn’t mean they won’t for you. Don’t be afraid to use advice line with any problems, that’s what they’re for & better qualified than me lol. Really good luck whatever you decide, I know how daunting it is at first but can really improve, honestly 😊

Robin0 profile image
Robin0 in reply to SarahJane926

I have been taking both for nearly 4years since diagnosis and they are thankfully working for me. I had steroids for a long period on and off but been off them now for 7 months. Moving to Methotrexate injections 6 months ago is much better - no nausea. Hope it works for you.

in reply to VTxx

Been on it for years. But it can take up to 12 weeks to have any affect. I was diagnosed aged 36 in 1987. I'm 68 now.

So sorry this has happened to you.

There are a lot of success stories on here. Methotrexate takes a while to work and they will increase your dose over a period of time. Methotrexate takes about 12weeks till u feel any benefit. A lot of people are on a cocktail of drugs and unfortunately it’s trial and error. Managing your disease is very important don’t push yourself know your limitations and your triggers keeping a diary helps. I was very fit and active before diagnosis but had to step back and reevaluate. Much harder for you as it’s your job as well. I am on methotrexate (3 1/2years now) was working ok until this year now looking at starting something else as well. It’s a disease that varies from person to person and will throw a curve ball now and then. Please ask any questions at any time. A great bunch on here with a wealth of knowledge.

It’s not easy don’t rush but things will get better.

VTxx profile image
VTxx in reply to

Thanks so much. Its nice to find this community I feel so lonely at the moment. Its horrible that not many understand how you can look and seem ok but youre actually in total agony. I feel so down at the moment.

in reply to VTxx

That’s only natural. Your right people don’t understand and I include medics in this. Fatigue is my biggest symptom and unless you suffer with it no one really understands. Rheumatoid Arthritis is a miss leading title. Is should be Rheumatoid Disease as it not just our joints that suffer.gather as much information as you can do keep a diary I also take photos. In the past I’ve suffered for months then get an appointment and disappears. You will have flares then they will disappear.

You will feel better in time.

You know where we are if you need us.

in reply to VTxx

Time I am only on week 2 and the team of RA lovelies will keep doing the MANTRA time time time with the pills such at MTX 12-16weeks.

I so want to do yoga as heard be great for me but I need the knees and hands to behave before I try.......I would be a beached seal on the floor unable to do any of the moves and once down be hard to get up as hands useless!

helixhelix profile image
helixhelix

Methotrexate is my best friend, it gave me my life back. It took a long time from diagnosis to get stable, and several tweaks of drugs but it worked well. And I then spent years in remission thanks to MTX.

Pilates is my preferred exercise, and I have no problem with it at all. You do have to have patience unfortunately, but chances are that you will get there too. Make sure you look after yourself properly, eat well, sleep well, do range of movement exercises even if you can’t do anything else, make sure you drink water, and try not to stress.

After I was diagnosed I was convinced that life as I knew it was over, as I was virtually totally housebound. I couldn’t believe that my swollen joints would ever get back to normal, but they have. There is hope, honestly!

Ali_H profile image
Ali_H

Yes once things have settled you should be able to get back to yoga etc but it may have to look a bit different depending on what type you do... on the plus side there is the possibility of ‘reinventing’ your self as a specialist hidden disabilities or arthritis yoga practitioner/fitness trainer- do you realise how many of us out here try to do stuff but get downhearted by of the lack of real understanding of our difficulties particularly around fatigue and fluctuating pain - darn I am practically salivating over the prospects of future ‘autoimmuner’ fitness/yoga classes.

You can do precious little physically until the meds take off. But clearly you’ve a solid business mind - flick on the voice recognition thingie on you computer and start making plans, keep a journal and I for one will buy your book and look to attend a class taught by one of your franchised specialist yoga teachers 😎

All the best

Ali

P.s. I’ve been on MTX for 5 years and I still teach special needs kids full time- it’s hard at times re energy levels etc but doable once you get the right med combination/levels working for you.

Jesnaskah profile image
Jesnaskah

Hi,

I am 36 now, diagnosed 2.5 years ago. Like you, I was basically an athlete. This disease shut me down real quick, and I even lost 4 jobs as everything was happening simultaneously with my onset. I would spend 2-3 hrs/5 days a week at gym. Teaching 3 cycle classes, doing dance, and weight lifting. I was even in cross fit for 3 years.

Then I was completely crippled. After about 3 months and many doctors and blood tests later, I was diagnosed. By then I was on Prednisone, and that gave me my life back. I tried MTX, Leflunomide, and Hydroxychloroquione, all gave me bad side effects. So, I said enough. Despite all my docs opinions, I decided I wanted to stay on Prednisone. In a matter of about a year and a half, I had weaned myself off, changed my diet and I'm managing. I'm not like before, but at least I'm back to teaching my 3 cycle classes. Can't really lift weights consistently, bc I don't want to aggravate my hands. But I never thought I'd be able to do anything again, ever. So I'm so grateful that I can do SOMETHING. I went from unable to dress myself to living a somewhat normal life. I still feel like I'm being held back, but those are mental blocks I need to work on. I can't keep comparing to the past. It's just not fair, I'm not the same person anymore. I think that's what hurts me the most.

Anyway, I hope my abbreviated journey will give you hope, just give it time. It DOES get better, especially if you don't stop trying. It's all trial an error and we are all unique in what works for us. ❤️

Jaxine profile image
Jaxine in reply to Jesnaskah

Wow cant believe your consultant has agreed to allowing you to take Pred fir so long. Like you, I did not get on with 3 different Dmards, therefore offered Biologics. I have been on pred sporadically over the cause of nine months whilst trying to find a drug that suited me, however my consultant only allowed me to take a very small dosage 10mg. As steroids long term is really dangerous. I also felt great on Pred apart from not looking so great, huge moon face! It's great you re doing so well, the only problem is with not taking the drugs for RA you are at risk of your joints deteriorating without you knowing. But as you said what works for you.

Jesnaskah profile image
Jesnaskah in reply to Jaxine

I know what you mean! It gave me moon face as well, and other physical uglies.

But once you get a taste of that sweet relief, it puts everything into persepective.

I started out on a high dose of pred, but for most of the time I was around 10mg or less. But my doctors were okay with my plan of slowly reducing as I felt "better."

I dont know know what the future holds for me, and you may be right with the detoriarating. I have never really gotten a straight answer from any of my docs. I have always wondered, do I need to be in pain for the deterioration to continue? Because at my onset, I was very swollen and some parts, like my knees were red, but I wonder if no pain means I'm ok. I hope so. I try not to think about the future and just try to enjoy each day as it comes, especially if it is tolerable.

Jaxine profile image
Jaxine in reply to Jesnaskah

You have the right mindset defo. I myself thought I'd rather take a small dosage of Pred and not have to to take the journey into taking toxic meds. However, whilst on Pred ( even the smallest dosage) it kept my RA getting angry and was manageable but when I weaned off completely my Ra started knocking on the window. So I know I can't take Pred long term ( even a tiny amount) so I have to take the medication. Yes I thin k ( however I'm not an exoert) but even if you feel no pain, stiffness, swelling from RA the underlying problem is the RA is there grumbling away and it can cause long term damage eventually. Best thing is take the meds ( that suits you) get the RA under conrol so no further damage can be caused. I spoke to my consultant 3 days ago with a barrage of questions, mainly ' cant I just take ,ow dosage Pred and stay off other drugs? She said ' the worst medication you can be taking is steroids' pointed out the side effects being heart problems, diabetis, basically a long list of problems. Accociated with steroids. I ve seen sence and decided I've got to take expert advice. I do feel for you, you're young, you want your life back, the old you! But we all want that. Steroids is a great short term fix but it is not the reality of helping your condition to mov e forward. Be healthy ( which is who you are) but tell RA to ' take a jump' and try the drugs that I know from speaking to soooooo many people really do help you get your life back. Try not to be scared by what you read and hear other people s ex periences. Whilst it may seem like a lon g journey in the scheme of things, believe me, its actually short. Take care xx

Jesnaskah profile image
Jesnaskah in reply to Jaxine

I really appreciate you taking the time to respond and share. That's very sweet of you! Xo

vonniesims profile image
vonniesims

Sorry, but be careful with Yoga, Pre- diagnosis I practiced it and then found I had damaged my wrists.

Pilates is great of you can get up and down from the floor

Aqua and swimming will keep you going for now. Good luck !

RADOONE profile image
RADOONE

There is hope mtx takes up to 6 months to work I still get flares but I am

I back now teaching Pilates I attend yoga it really helps with Mobilty and I also do meditation daily which has had a huge effect on my positivity .

When I was diagnosed I was I. A state of disbelief as have been running fitness classes for 25 years . But unfortunately mine is genetic so no amount of fitness can stop ,

Stick with it and try and keep moving if you can . Xxx

MissMinto profile image
MissMinto

Ali_H gave some great advice...try/teach chair yoga?

Kalimers65 profile image
Kalimers65

Look at the Paddison Programme on YouTube. It might really help you. He’s a great advocate of Bikram Yoga for Rheumatoid Arthritis.

AgedCrone profile image
AgedCrone

Hi VTxx

Unfortunately RA treatment isn’t an instant fix.

You need to give Mtx much longer I’m afraid......if I were you I’d speak to your rheumatologist & see if your dose needs adjusting yet....but it’s usual to give it at least 12 weeks to see if it will suit you.

I took Mtx very successfully for 7 years....so don’t despair ......there are many more Dmards available if your rheumy feels it necessary to add or change your meds.

Hope you get some good results very soon.

stbernhard profile image
stbernhard

Hi VT, I am more than twice your age. It took some time and a lot of positive thinking, discipline, hard work and the right combination of medications, but for a very long time now I am in remission and don't even think about having RA most days of my very active (physically and otherwise) life. There is hope, please don't give up! You are stronger than you think during the dark days. New medications are coming out all the time. There's never been a better time to have RA.

Dobcross1 profile image
Dobcross1

Hiya. I feel for you - you are where I was this time last year when I was diagnosed. Fast forward to today and I'm back doing yoga (hatha - I never did power yoga etc,) and although I'm not quite where I want to be yet, methotrexate has enabled me to function. It did take around 14 weeks to work for me. Since my dose was increased to 17.5mg in August the awful fatigue has lessened too ,- though I think the dose will probably increase again in November - as others have said, its a slow process figuring out what's right for you but you will get there. In the meantime, you can help yourself by doing breath yoga or meditation if you're into it as it does help the anxiety, eat a good Mediterranean type diet if you can (I also take supplements and do juicing but its not for everyone). Anyway, you asked for hope and it's there believe me - but it does take time and patience (very hard, if like me, patience is a virtue you don't possess 😂). BTW what a fantastic idea from Ali H - I would definitely attend a class where the yoga teacher knew about RD - I go to two classes and neither of the teachers do.

Katie-Mag profile image
Katie-Mag in reply to Dobcross1

Can I join the RD Yoga class too :-) . VT, sure there’s a business opportunity here!

Jaxine profile image
Jaxine

It really is scary and daunting when you first get diagnosed with RA. I got my diagnosis Jan this year. Literally over night couldnt walk, dress I struggled with the smallest of tasks. It's been a long journey finding the right drugs ( which everyone on here conveyed it would be) 3 different Dmards with horrible side effects and 2 different Biologics. I'm now on my third Biologic so fingers crossed it will work. MTX can take up yo 3 months to work, if it doesn't have faith that you will def eventually find the right drug that suits your body, the fact that your body is coping with MTX is a good sign. Believe me though you do get to eventually embrace you have RA ( you've no choice) and you will start to feel more positive about having the condition, I thought when first diagnosed my life s over! but of course it's not you just have to live your life with a stronger mindset and a more feisty determination and not allow it to define you. Take care x

Hello VTxx

I also felt impatient about MTX not working at first. Prednisolone kept me going, fortunately a low dose, until the MTX had an effect. Hard to tell when the MTX kicked in as I am taking both, but I would guess between 3 and 5 months. I'm now weaning very, very slowly off the Pred,, down to alternating 1 and 2 daily, and the RA is in remission. I also took hydroxychloroquine for the first 5+ months, with Sulfasalazine added for a while later, but one or both of those gave me tinnitus (on-going) and I've come off them. So far as I'm concerned the MTX is working well and I'm happy with that. God alone knows how it will be in the future, but I can only wait and see.

Concerning your wrists, you need to protect them. They are very complex joints. I was advised by an OT not to do things that produce a lot of pain as that could damage the joint, so don't try to force yourself to soldier on.

As lots of people have said, things will improve, but the waiting is frustrating and depressing. Make sure your consultant knows how you feel emotionally as well as physically.

Iluvgardening profile image
Iluvgardening

Prayers the meds kick in soon and you have some relief. It takes awhile for the meds to start working and sometimes you may need to add DMARDS to the methotrexate to get better relief.

Katie-Mag profile image
Katie-Mag

Hello VT,

So sorry to read your post, welcome to the form though. Hope you also find it a source of information and support.

Understand it’s likely to take a while longer for the methotrexate to work, glad it sounds like you’re able to tolerate it. Keep going!

The NRAS helpline is also fantastic (got me through a very low point this week) They can send you a ‘newly diagnosed’ pack which is the best info I’ve read to date.

Although I’m not in your league of fitness I’m a keen endurance cyclist, runner and yoga fan. Early days on my R.A. journey so afraid I can’t say I’ve been able to get back to excercise yet...

Although I appreciate it’s almost impossible at times, keep hoping and pushing on. Maybe R.A. can be seen as a long run: you don’t know where you’ll get to but for now keep some faith and just put one foot in front of the other.

Big virtual hug!

Katie M

lilyak profile image
lilyak

Hey there, your post really resonated, I was very similar to you. I have severe RA and have had for almost 15 years. I thought I would quit gym in the beginning, until I 'healed'. It was a mistake. It took me a very long time to get back, and it hurt a lot. But I got there. As others have said, it is too soon to know for sure if mtx will help you, and there are many more options. While everyone hates prednisone, your life has been destroyed very quickly, I would ask your rheum for a higher dose, to get you through in the meantime. It won't hurt you to take it for a few months. If your pain is reduced by prednisone (while you continue to trial mtx, and other dmards as necessary) you will be able to get back to the gym, which will OFFSET the side effects of the prednisone and you will be healthier and MUCH happier, if you take that course. Your RA is clearly aggressive, it takes a lot of adjustment to accept that you will likely be on multiple, scary sounding medications for life. But the sooner you get your head around it, the better. I have to be honest, even with prednisone, yoga will always hurt. some days it will hurt quite a lot, but what it gives you in return, in terms of strength, fitness and happiness is worth the pain. The longer you are out of the gym, the harder it will be to get back. You CAN get back. Its going to take some 'acceptance therapy' i.e. you will always be in pain, and some days you will rail against that, because its NOT fair. But you can be happy, despite pain. You can do yoga and gym, despite pain. Prednisone is a miracle, use it right now, to keep as much of your old life as possible, until you find a dmard and/or biologic that will help you. I wish you all the very best.

Gardening1993 profile image
Gardening1993

Hi, l do yoga every week and Pilates. I have had RA for over 35 years, l am 58 now. Yes it is very difficult some weeks but just try and adapt the moves to suit your ability. Try and stay warm when doing any exercise it does help. Some days are very hard with pain and feeling extremely tired. When you have these days just rest and try and recharge. Do not feel guilty about resting your body needs it. Good luck with the meds

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