Starting Meds for RA

[Adalisone]

Hello all, just been diagnosed with RA, i had a steroid injection on Monday In my bum and im starting methotrexate in 4 weeks time, could anyone help me with what to expect? Thank you

[AgedCrone]

Methotrexate is the gold standard drug for early treatment of RA.

It will probably take a good three months to be fully effective....& then you can get on with your life... maybe not quite as before straight away, but certainly better than you have been.

You will probably have read that it doesn’t suit some people.....but Rheumatologists consider carefully before they decide which Dmard they prescribe...so let’s hope your rheumy chose well!

Good Luck!

[Adalisone in reply to AgedCrone]

Thank you so much, I'm feeling very hopeful now I will be starting treatment, been suffering for quite some time now. Do you think the steroid injection will help in the meantime?? I can only feel minor improvement at the minute, it's only been 3 days though, sorry for another question 😯

[AgedCrone in reply to Adalisone]

It should do....but like so many RA drugs - some people (me included) get great relief from Depomedrone injections....Mine can last 10/12 weeks...others only get a few days.

Hope yours lasts until you get the Mtx...which I took very successfully for 7 years.

[Adalisone in reply to AgedCrone]

Thank you for replying and for your positive words, it means a lot.

[Stowe]

I'm on Methotrexate and currently take steriods as well, have been diagnosed since April. For me the steriods helped tremendously, the eased fairly quickly. The methotrexate is good for me and seems to be helping me. I do get a few side effects but nothing major, bit of tiredness, (not all the time) slight upset stomach the day after I take the weekly medication and my hands seem a little more swollen the day after, but other than that. Good luck with your journey. X

[Adalisone in reply to Stowe]

I'm so glad its helping you, I relly hope it suits me to take, fingers crossed, I'm expecting some side effects but hopefully nothing too bad 🙂

[stbernhard]

Hi Adalisone, the best advice I can give you is to go to the NRAS website. There is a wealth of accurate and helpful information. Every RA medication is listed and described. Their helpdesk is fantastic and helpful. Our bodies all react so differently, it's hard to say what to expect. I was diagnosed in 2009 and am in remission since 2014. So there is hope and the medications get better every year. All the best.

[Adalisone in reply to stbernhard]

Thank you, I will have a look this evening. I'm glad that you're in remission, I'm hoping I will be soon 🙂🙂

[Adalisone]

I was first tested 3 years ago, I completed a drugs trial and finished in january this year, whilst I was on the trial everything was going well. The consultant at hospital would not put me on meds after because when I saw them I never had any swelling, just the high levels in my blood and the pain. Then in March this year I was diagnosed with underactive thyroid, since then the widespread pain has been so so bad from my jawline to my feet, been in tears most days, especially during the morning hours. I saw a new consultant on Monday which then said it's time to start me on meds, the first being a steroid Injection. I've got to have a scan on my chest and then I will start on the treatment. I'm so relieved that I will be treated now, just looking for any advice and guidance as I'm overcome by it all at the minute 🙂

[Hessie5]

Hi Adalisone - the hard part can be acceptance of your diagnosis and thinking you don't need meds - this can lead to RA spiralling. That said, we are all unique and RA affects us in different ways.

Expectations re meds and sundries:

1 - meds may or may not work. Be the master of your body. Always ask for advice and help. Mtx is the gold standard to get started. There are so many more if this one is not for you.

2 - try to remain positive, but if you have to vent just do! This is a good place to shout 😁

3 - It’s a journey, just take each day as a blessing. If you are having a not so good day find time to relax. On good days make the most of things.

4 - As said everyone’s journey is different. Just because mtx didn’t work for me does not mean it’s not going to work for you.

I eat well, have the odd treat, do gentle exercise - and whilst life is not as before, you learn to adapt.

Wishing you well - Hessie 😌

[Adalisone in reply to Hessie5]

Thank you Hessie...I'm trying to stay positive, I do have the odd moment where I feel really isolated because people dont understand what it feels like and I know they are trying to help but its hard to listen to advice when they dont have a clue. Thats why it's nice to talk to people that understand and that can share there experiences with me. I know it's all going to be trial and error to start with. I have a really good diet 95% of the time and I work full time so I dont get much time to dwell on it too much, just hope i can get the pain manageable 🙂

[JFlay in reply to Adalisone]

Hi there, just to add to Hessie's advice... learn to pace yourself, I often think I feel ok and do too much then I'm knackered the next day and regret it 😂 Also, if you have an advice line at your rheumatology Dept/centre (they should give you the number) ring them if you need to for clinical advice.

All the best!

[Adalisone in reply to JFlay]

Hi there, that's great advice, I find by the Saturday on my day off everything feels so much worse, I look forward to no work for two days and I'm suffering and very little energy. I have the direct line number for the rhumatogist dept so I'm glad about that, I'm sure once I start on any form of treatment I will need it. Thank you so much 🙂

[Adalisone]

I was always told that I've got all the pain and blood results to indicate that I will get it, but they Are saying now I have. I had scans and x rays whilst I was on the trial, they were never allowed to discuss them with me though, until the last person has finished 🤔🤔 for the last few months I've felt like I'm going mad, relying on naproxen and codeine every day. At least now I'm under the hospital care.

[charisma in reply to Adalisone]

In order to get the right treatment, there needs to be a real diagnosis and that means the Rheumatology Dept Specialist would send you for x-rays. Those are an important part of diagnosis.

I am sorry but what you are describing is a very unprofessional doctor or simply not reliable.

If you are a real person with RA, I hope your pain will be better addressed.

[Adalisone in reply to charisma]

It is the start of the process for me, I did see a rheumatologist doctor, I am now waiting for my next appointments for a chest xray. All my blood tests have been done on monday. A real person ??

[charisma in reply to Adalisone]

Still discrepancies in what you are saying. OP says ‘diagnosed’ and later ‘chest scan’.

Now saying still to get chest x-ray. Normal practice at first appt with Rheumatologist is that he/she writes orders for specific tests that aid diagnosis.

What you describe does not fit, unfortunately.

[Adalisone in reply to charisma]

I do not like your tone that you are taking with me. From my initial tests for my inflammation markers and ccp levels, to seeing a rhumatogist doctor, he has then given me a steroid injection to help until I've had the chest xray done and for all my bloods to come back before I start treatment. I'm now waiting for my next appointment.

[charisma in reply to Adalisone]

I’m afraid none of your responses reflect how the diagnosis process is. Very strange, and it just gets stranger.

Nor do you admit to inconsistency.

That is a pity if you are truly experiencing RA.

[Adalisone in reply to charisma]

I can only tell you what's happened since my appointment on Monday with the rhumatogist, who are you to judge me. I'm trying to piece all the information together and get help, frankly you're no help at a

...horrible !!

[Hidden in reply to charisma]

I find this reply quite cruel. We know that people experience many different things both in the progress of the disease and in the treatment they are given. Not everyone is lucky enough to get to a rheumatologist early on and even some who do are not given the full RA treatment straight away, e.g. if they are seronegative or because there are not enough rheumatologists available. I do not think people who post on this forum should have their truthfulness questioned. We are supposed to be supporting each other. Incidentally, I too was offered a steroid injection while waiting for test results that they needed before I could start on methotrexate.

[Adalisone in reply to Hidden]

Thank you so much for your support, I have kept off this site until now. I've logged back on today to have another read as I've been given my meds today, methotrexate, hydroxychloroquine and folic acid. Feeling quite scared at the minute, just hope my body is ok with them. Fingers crossed, thank you again 🙂🙂

[Hidden in reply to Adalisone]

We walk a tightrope between being damaged by the RA and being damaged by the drugs. It is scary, but that's why they monitor us so closely. If you find the side-effects are very bad, you must let your rheumatologist know asap, but don't worry yourself sick about them beforehand. Lots of people take the drugs without being too badly affected. There has been some research that shows that people's anticipation of the side-effects is often worse than the real thing. For example, if they know something can cause GI upsets, some people say they could not cope with that, but if/when they experience it, they say it's not as bad as they imagined. I hope the drugs you're on are good for you. Waiting months to find out if they're working is one of the hardest things. Good luck!

[Adalisone in reply to Hidden]

I'm going to start them tonight, i figured i would take them before bed. I've got blood tests every 15 days and my next appointment on the 7th October, I know they can take a while to do something but I'm going to America in 6 weeks, I hope they've started to do some work then. Thank you 🙂🙂🙂

[Hidden in reply to Adalisone]

It generally takes more like 3 to 6 months for them to have any effect. The only quick-acting things are steroids, but they also have drawbacks. OK for short-term help, but not to stay on for a long time if poss,

[Adalisone in reply to Hidden]

The doctor has arranged for me to have another steroid injection before I go to help.

[Adalisone]

I've had two rhumatology appointments through today, one on the 6th Sept and a further one for the 7th October. Thankfully things are moving in the right direction for helping me 🙂🙂