Rheumatoid arthritis

[Nocturne123]

If anyone has any experience of this it'd be great to hear .

I started having stiff joints a few years ago when I was 22 ( now 28) initially the rheumatologist thought it was psoriatic arthritis but now thinks it may be rheumatoid.

I'll be starting methotrexate in the next couple of weeks .

Does anyone have Any tips on how to get through the next couple of weeks ?

I've had an intramuscular steroid injection and have cocodamol / anti inflammatories but they're not cutting it at the moment .

Dh had to dress me this morning the pain is just so bad at the moment. Dd ( 19 mo) and ds ( 4mo) show no mercy!

Any weird and wonderful tips on dealing with pain would be great and if anyone has experience of methotrexate please share because I'm terrified of starting a "proper" drug .

Sorry a bit long but thanks in advance

I had the worst ever flares after pregnancy, actually thought I could understand why people kill themselves it was that bad, then happily on sulphasalazine for 4 years (touch wood). It's been amazing.

Best things, electric blanket, sleep, swimming, weight training with pt, ice and heat upon first sniff of a hot joint, volterol gel, fit flop boots,

Heard great things about flexiseq gel and gonna give that a try.

Hi I've had RA since I was 19 so nearly 17yrs (shit that's a long time when I think about it).
I usually take MTX & Humira to control it but as we have been TTC I am just on Humira and steroids atm.
When I was struggling with my RA when I had DS, DH bought me a combined sprung mattress with memory foam layer (such a romantic present buyer DH) which was a godsend. We have since relaxed all the mattresses in the house with the same ones so I can shift to the spare room when I'm achy and grumpy and DH can still get a nights sleep.
I think it's important to remember that RA doesn't necessarily stop you doing things but you might need to think about doing things a slightly different way. Make sure you listen to your body too. Rest is very important. I still am bad at this and end up paying for over doing things.
MTX was a life changer for me and I wouldn't have been well enough to finish my degrees, have a fabulous and demanding career or even contemplated being well enough to take a break from it to have DS. Unfortunately after having DS it didn't work as well for me on its own so they started combining it with Humira.
I can't really advise about coping with the kids as DS has only ever had a mummy with RA. He did learn to be very independent very early and is very good at knowing when I need a gentle cuddle.

Replaced not relaxed

Wonkylegs , how was coming off methotrexate to ttc ? I'm not sure if I'm going to try for dc3 or not .

Ideally I'd have waited to go on drugs until I had definitely finished my family but it wasn't really an option as I hurt too much .

I'll look Into those mattresses as well

It was fine to start with but quite frustrating. With DS I was very stable prior to coming off so I was in a good place. However at that point the guidance was to come off for 6mths prior to TTC, that was fine but a very long 6mths, luckily we then conceived within 4months and the hard slog began, I was on steroids from about 6weeks of stopping MTX, low dose to start off with but by the end of a very painful pregnancy I was upto 30mg and had a moonface from the steroids. My hormones + extra weight of baby made my RA very bad in pregnancy.
It was hard but not an experience I would do without, having a gorgeous baby at the end of it made it worth it.
This time round was easier as I haven't had to give up meds completely as I can stay on the Humira whilst trying which is great as it took nearly 2yrs (+ 4mthsto get the MTX out of my system, guidelines had changed) to get a positive test, unfortunately I had a miscarriage at 16wks just before Xmas so we have had to start again. I'm on steroids again but so far I've managed to keep it on a very low dose. It has been very hard and it's not in anyway a logical decision but we really would like a sibling for DS so as long as it's bearable we will continue. I have been lucky to have very supportive medical professionals who help me work out what is and isn't doable.
Sorry I've waffled on but what I meant to say is that it wasn't easy but it was worth it.

Thanks for the reply . So sorry about your miscarriage

That sounds brutal and fair play to you for persevering .

It's a bit of a way off for me I guess as I won't even know what drugs I'll end up on but best of luck to you ttc .

I hope you don't have to wait too long and that your body isn't too cruel in the meantime .

Hi I have RA and have been on 20mg mtx for about 18 months. I also take hydroxychloroquine and I can honestly say my symptoms are on the whole much improved. I occasionally need steroid injections in a couple of finger joints when they flare up badly.
Hopefully you will get some good treatment to help you too.

If anyone is still about I have a bit of a strange question for you .

I have been to see the rheumatologist and have my prescription for methotrexate.

I have a friend coming to stay next weekend and dh will be away .

I cannot make up my mind what to do . Start the drug tomorrow and then take it again next week when she comes or wait until she leaves ?

My issue is that I want to start it ASAP to get the benefits sooner but Also I'm worried about side effects ruining the weekend . My steroid injection is starting to wear off so my pain is getting quite bad again.

As I'm clearly not a grown up and unable to make my own decisions any input would be very helpful . I've already tried df who is a doctor and he said it's up to me .. Useless!!!

I had the same concerns as you with starting the methotrexate, trying to work out when was best to take it in case I felt rough.

In the end I took it on a Friday night so I had the weekend to recover if necessary and my husband around to help with kids.

Luckily for me I have had no side effects from methotrexate at all. I don't feel any different on the day I take it to rest of the week.

I do always take it on a certain day of the week now, after food as most of the other drugs have to be taken after food too.

I wouldn't think you would get any instant relief from the methotrexate as I was told it might take up to 3 months to build up in your system. This was certainly the case for me, the joint swelling and pain was less after 3 months.

In a flare up I still need steroid injections to help manage day to day life.
If you're in lots of pain can you take any more painkillers?
Hope the new meds will work for you.

Thanks for the reply :) I could take more painkillers .

Before the steroid inevitable I was taking 8 a day with anti inflammatories and was still in a lot of pain but that flare was particularly bad .

I guess it really is just luck of the draw with side effects . The rheumatologist did say at least 6-8 weeks to see results so I know it won't be immediate .. Sigh .

Either way I'm dreading my poor friend having to deal with me in pain with 2 Dcs . She hasn't much experience of children , she'll be swimming back to England after I release my two on her .

Hopefully you friend is a good one and will see you struggling and want to help out.
I have 3 crazy boys that are like a whirlwind so I know a bit of what you are going through! Thankfully mine are at school these days so I get some respite!
Keep up the regular pain relief, hope things get easier soon.

I used to take mine on a Saturday night (I was when younger more likely to go out on a Friday) l took it just before bed so worst of side effects would be whilst I was sleeping. Luckily I didn't have many side effects except mild nausea which was kept at bay by more folic acid or if particularly bad marmite & toast for breakfast.
Make sure you take your folic acid (depends on the doc when they say you should take it but I always took mine the following Tuesday) it's very important as the MTX is a folate depleter so you will be lacking it which causes some of the side effects. It is a scary drug BUT it can also be a fab one that is fine when monitored.
It's obvious & you have probably done it already but in case you haven't if you pay for prescriptions get a prepayment prescription card (Google for the NHS website) it is much much cheaper and RA can end up being an expensive business otherwise.

Thanks everyone . In NI we don't have to pay for prescriptions so it'll be grand from that pov .

Yes i might just bite the bullet and try it tonight and definitely get folic acid . I've read a lot of people find it really helpful .

I am being a bit of a baby about the whole thing but at least dh is supportive as are my parents .

Thanks everyone for the advice and making this all a bit less scary . I shall man up now

You shouldn't be prescribed MTX without folic acid - it's 5mg version not the pregnancy dose so it usually needs prescribing too. Experience has taught me some drs are very good at stressing its importance others less so but it is important as lack of it in the body can cause its own problems.

Hi I wonder if anyone has been told this.
I moved to a different part of the UK a few months ago so new GP and consultant.
I've had RA for over 20yrs, sulphasalazine and naproxen.
New consultant thought my levels were really good and said that some people ' grow out ' of RA. Never heard this before.
She suggested I reduce my meds. Nightmare, you can imagine what happened. Anyone else heard of this. Would be wonderful if true

If you are in remission they may try to see if you come of the drugs - they are nasty stuff after all but according to this article here most people still need the drugs.
I've been told to expect to need to take some sort of medication for life but they hope to be able to reduce the levels to a minimum over time

You can go into long term remission. I did with psa and then it came back after a few years of no drugs and now it is worse than ever and literally controlling my life trying to get it under control.

Ah mrs pott that's grim both times I got pregnant I was so pleased I felt so good and convinced myself it had gone .

Must be so tough having it come back after all that time .

It's not great Nocturne as the mtx is not working anymore So all my hopes are now pinned on biologics being funded as my rheumy says I need them.The joy of funding eh

Mrspott - fingers crossed for you. It's great when you finally get on the biologics programme but it feels unfair to have to jump through the hoops to be accepted once your Dr says you need them. I love my biologics nurse and he said to remember when you do the DAS score answer as if it's your worst day.

Hello. I have RA i have spent 15 years finding the right drug. Naproxen is all that really works :( all i can advise is to accept each day as it comes. Be kind to yourself and be aware that no drug is the perfect drug or 'the one' . Big hugs