First Post!: Hello everyone my first post! Was... - NRAS

NRAS
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First Post!

Stassy
Stassy

Hello everyone my first post!

Was diagnosed with RA at the end of last year so still trying to get my head around the situation!

It’s so overwhelming going from “normal” to having a “disease” and living with debilitating pain.

As someone who has to question taking a flipping paracetamol I’ve found it really hard to accept that I may be on drugs indefinitely...

At diagnosis when I was given Prednisolone I was so anxious about taking “steroids” that I decided not to - only to find later on they did offer great relief for me.

Similarly with MXT I was freaking out - nausea,hair loss as possible side affects to name a few.

But when you take control you realise MXT is where you start and you have to start somewhere..

So I’ve been on MXT for four weeks with no sign of improvement and plenty of nausea-based side affects - I know it can take months - but in the mean-time my symptoms are debilitating.

My question is how pain relief managed while you are waiting for MXT to kick in? Did you take steroids/injection etc

Prednisolone has been the only thing to offer complete relief for me - since my journey started I’ve used two courses of it - the last course was when I started taking MXT to “bridge” pain relief.

Currently with no pain management my abilities to carry on with “normal life” atm is challenging - so need advise on how to manage this as I can’t continue in such pain as I wait “indefinitely” for the MXT to kick in.

Stassy x

32 Replies
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I was the same steroids and pain relief. My gp was brilliant at pain relief going up as needed from panadol to morphine patches! Chat with them they are experts. I couldnt have done without my heated fleece blanket and ironically ice packs either ! Nice to see you here and hope it kicks in soon xx

Stassy
Stassy
in reply to allanah

I like the sound of a heated fleece blanket much better than a hot water bottle!

Yeah I hadn’t considered talking to my GP just assumed that the Rheumy clinic would “manage” the pain

Thanks for the welcome ! x

allanah
allanah
in reply to Stassy

Yeah of course the rheumy or rheumy helpline can help too but mainly for me it was steroids and injections they prescribed where the gp seemed to have more pain relief experience. Try both lol, see what suits you best !! Nice to hear from you.

Yes I will thanks - I guess it’s all trial and error especially when first diagnosed. x

Hey, I've been diagnosed in August last year. I've joined this site today in the hope to talk to people with RA who understands what we are going through.

I've been on prednisone on & off since diagnosed & while its helped the inflammation when on a higher dose, I've only been given naproxen & cocodomool for pain relief however when I take both I do feel away with the fairies lol. Not wanting to stay on steroids for much longer due to weight gain, but these are the only things to have eased the joint inflammation so far. Can you try the steroid injections if your not keen on taking tablets? I tried these but they didn't work as well for me as the tablets

Hey!

Yes - same for me joining today to “talk” to others and hopefully learn something as it can feel really isolating .

I’ve had injections twice second time it didn’t work.

Are you on Methotrexate?

Bluetink04
Bluetink04
in reply to Stassy

Are you still trying methotrexate injections now? I've only had the tablets, they was the first ones I tried but had side effects so they wouldn't let me continue. Then tried sulfazalaine, same did nothing for me, then hydroxychloroquine they was the worst for me & I kept getting infections so was unable to walk or pretty move since Christmas. With 2 young children it's been difficult & being off work. Today I have started benapili injections, I was so nervous to start then but it went fine this morning & I'm praying thay these work well for me. Just want to get back to work & be able to the school run or go out as a family.

How did you come to be diagnosed? How are you feeling about it? X

Cwendyn
Cwendyn
in reply to Bluetink04

It’s awful when you think it’s never going to improve. For two years, I was on mtx and sulfa plus Pred to get me through the day. I wore compression gloves which did dampen the pain a little. The only thing that worked was around a 7mg dose of Pred. That was until benepali. It worked within about a month. I came off the Pred and life became much better.

I’m back to running my company full time. I do have to pace myself somewhat and I’m still learning how to do that. Some things I’ve ditched. The weekly 6am networking meetings have gone. Can’t cope with those any longer, but life is definitely better. Not the same as pre diagnosis, but it’s ok.

Hopefully benepali will be the one that works for you too. Lots of luck!

Weight gain on steroids is the least of your worries. As MTX takes between 12 - 16 weeks to take effect, you might have to take them for a while. After 32 years I still need to resort to Pred in fact I'm on 5mg daily indefinitely for Rheumatoid Vasculitis.

Stassy
Stassy
in reply to poemsgalore1

I didn’t say I had issues with steroid related weight gain?

Prednisolone has been great for me with zero side affects.

Agoodlife
Agoodlife
in reply to Stassy

5mg Pred does not give you weight gain, what I understand.

Sorry, confused your post with Bluetink04.

I'm not on 5mg I'm on a higher dose, so yes the nurse has advised it will cause weight gain & moon face

I was originally on 40mg daily along with 5 infusions of 1 gram for Rheumatoid Vasculitis. As I said, the moon face and weight gain was the least of my problems. I got Osteoporosis with 4 Vertebral fractures.

Oral prednisolone is the medication that helps pain, swelling, inflammation. Yes it has its issues, but all other medication does too. Taking it for a short while is ok. Your rheumatology dept should be able to advise. Good luck.

Hi Stassy and welcome to this brilliant site full of wonderful and informative people. My personal best pain relief is paracetamol alongside tramadol, It’s a lot of trial and error before you find something that works for you, and yeah the steroids definitely help. Good luck in your quest, I’m sure thing will improve in time. 🤗 x

Stassy
Stassy
in reply to AngelMar

Thanks AngelMar

Thanks for the welcome yeah it really is trial and error - take care x

Welcome, Stassy!

It is definitely daunting to face all the harsh meds that we’d previously never ever consider taking short term never mind long term.

My tactic, and for lots of others, is to boost health in other ways in order to give the body its best chance of coping.

There is a ‘pain gap’ when approaching the point at which a drug ought to be beginning to cause benefits. For me, it was three months after diagnosis when no more Prednisolone was allowed, and I felt very ill for another month or two then relief began to grow. The pale, pinched look to my face, pain etc faded.

It is a balancing act, reaching that point but necessary in order to know if the drug is working.

I hope your body responds well.

Stassy
Stassy
in reply to charisma

Thanks Charisma I haven’t heard of the ‘pain gap’ before. It sounds like your treatment was successful are you still pain free?

charisma
charisma
in reply to Stassy

That’s just my way of describing the necessary interval between stopping eg Prednisolone and waiting to see if the DMARDs or biologic or whatever might be kicking in for you. ‘Pain gap’ just says it in two words!

I am sorry to say that I have not been pain free since RA started but have had some periods of almost there! As long as disease is not too active and swelling etc is down, I am coping.

Now waiting for drug infusions to work so am in the stage leading up to that.

Thanks for asking, and I hope you find what works best for you and your responsibilities. X

Sounds like you have been on quite a journey trying meds that work for you hopefully the new injections will give you relief I don’t blame you for being nervous this morn it’s natural..

I’m 4wks on methotrexate I take the tablets the injections I referred to in a previous post were steroid injections.

I can imagine how having two young children it must be so difficult.

As even the smallest most simple tasks are challenging when the RA is active - it’s so hard to articulate just how debilitating it’s is to someone that isn’t aware or knows what RA actually is .

Yep I hear you I just want my life back too it’s flipping frustrating !!

I basically couldn’t walk for a year my knee was so painful and I was losing range of mobility when the pain started in my other knee I finally when to the GP who did my bloods then arranged for me to go to hospital as my markers were “abnormally high”

I’m still processing it tbh it’s a lot to take in one minute you are “normal” and the next you have this thing , a disease that is incurable and progressive if not treated that can flare any time it likes !!

What about you how were you diagnosed?

And how are you coping and feeling about it? x

Eurrghhh. The early days are pretty brutal I’m not going to lie. Testing to see which meds work or not is no fun as each one is given three months to see if it will kick in, or not.

I’m afraid it’s probably going to take some patience before the rheumy has a pattern of what’s happening from your blood tests.

My friend bought me compression gloves from dr arthritis which really helped the intense burning in my wrists.

I also spent the equivalent of a small mortgage every month on every suggested herb, vitamin, cbd oil. None made a scrap of difference. Beware of the people selling stuff that want to help. Their heart is in the right place, unfortunately their knowledge is often limited.

I hope you find the right balance very soon.

Stassy
Stassy
in reply to Cwendyn

Yeah balance seems to be the one thing that is out of reach for so many on here as a newbie I’m quite disheartened that people’s treatment isn’t straightforward but trial and error always needed to tweaked and monitored- find it overwhelming as I’ve recently been diagnosed it’s a lot to comprehend!

Just over 2 years diagnosed for me. 55 and never had a major illness or infection my whole life...then bam! It hit me in every joint at the same time including my jaw. Struggled to get out of bed and needed to wear incontinence pads, couldn’t get comfortable in bed but struggled to walk when I was up. Didn’t want to carry on living at that point in my life if I’m honest. Spent a short time in a wheelchair. Then I saw my consultant, he gave me a steroid injection and prescribed naproxen and paracetamol so that I was never without pain relief whilst they tested my liver etc to check I was ok to have methotrexate.

Slow process of building up my methotrexate dose. I improved slowly but had to take 6 months off work until I felt strong enough to return. Methotrexate effect plateaued off in terms of relief it was giving me so I was switched to 20mg injections after one year which seemed much more effective but still not enough. Then they added in hydroxychloroquin and that made a big improvement combined with the methotrexate.

My shoulders, knees and ankles were still inflamed and stiff and sore ...so over the period of a few months I had injections direct into each of these joints which was a huge (but only temporary) relief. Luckily the mtx and hydroxy were able to take over better control of the inflammation during this time. So I could now wash and dress myself without support, and walk reasonable distances (up to 2 kilometers?)

I have flare ups from time to time where I have to go back to my trusted naproxen and walking sticks. Recently had a much bigger flare when the hospital tried reducing my mtx dose..now back on 20mg and getting better. Apart from the first 6 months I’ve been able to continue full time employment although I have a good employer who allows me to work from home whenever I need to.

Mtx has caused nausea and hair loss, but I take a supplement called Biotin for my hair loss and folic acid is helping with the nausea.

I am confident that with the right balance/combination of drugs I can live a reasonable normal life, largely pain free.....but it doesn’t take much to upset that balance so it is exhausting work. Stick with it, you will get there. xx

Stassy
Stassy
in reply to CagneysMum

Yep definitely exhausting thanks CagneysMum take care!

Greetings Stassy

I’ve been on Prednisone for 2 years initially 50 mg for pneumonia due to bacterial gut infection going to my IPF lungs. This caused me to blow up like a giant toad with inability to walk or use my hands. As the dose was reduced over the next year I was able to manage my RA and the pneumonia was under control. Now I’m on 10 mg prednisone permanently and my RA is OK. I knit a lot to keep my hands moving and warm. The side effects of prednisone have been spectacular and finally is managed. Everything is about management for me with several chronic and terminal conditions. For me it is about quality not quantity of life for me. I am extremely tired all the time but keep as active as possible both physically and mentally. Once I got over the shock of being told my lungs could not be helped and my pneumonia was incurable and 4 specialists later, I am doing well. Embrace the good things in your life and become an advocate helping others. It’s a great medicine.

We’re all here for you!

Keep knitting warm socks.

Cheers

Dee

Stassy
Stassy
in reply to DeeSending

Thanks DeeSending glad to hear your RA is Ok and you have your coping strategies help.

I’ve been on this RA journey 3months alongside heartbreak and loss so I actually feel mentally and emotionally wiped out.

Being diagnosed with RA “was the last straw” adding to an already dark time for me

Hi Stassy. I've been taking Methotrexate for a couple of years. It took about 10 weeks or so to kick in and I had a depomedrone (steroid) injection to bridge that gap.....felt like a miracle cure at the time!! Try to keep a healthy diet and keep moving as able.....and when not so able try warm yin yoga or similar.....so gentle and relaxing. Do try to make sure you read some positive stories too. It's your journey and hearing peoples negative stories aren't helpful in my opinion 😬🙄.....well not all the time. There are plenty success stories with meds etc 👍

Stassy
Stassy
in reply to Lamc

Thanks Lamc

Yeah it’s very much swings and roundabouts for me atm.Some days I’m like “yeah I going to beat this” and others days feel quite hopeless as reading on here the process is just not linear and tbh I’m quite angry that I have RA in the first place - it’s all about processing!

Sounds familier! It helped me to take control of things I could control....so i read about and implemented alot of dietary changes which definately helped! Also read alot about the Clint paddison programme....which was quite inspiring but also a bit hard core for me 🤣...try to stick to the principles mon to fri but not weekends 🙄....too hard to be perfect all the time!

Stassy
Stassy
in reply to Lamc

Makes sense!

Reading/researching has always been my go-to coping mechanism.

Diet/moving/mindfulness/meditation all have their place - I’m reading about functional medicine and enjoying the paradigm shift that is happening within that space for chronic inflammation

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