New to all this!!!

[Millysmum]

Hi, two days ago I was diagnosed with ra, had a steroid shot in bum, start steroid pills today and methotrexate tomorrow. Tbh I'm crapping myself. Any advice really welcome and needed. Am travelling to Las Vegas 28th May to get married and been told I will get there... One thing, should I stop naproxen as there's a lot of conflicting advice on reaction with methetrexaete.. Thanks

[helixhelix]

We've all been there, and lived to tell the tale! This bit around diagnosis is the worst, as you are in a new world you didn't want to get to know. I'm 7-8 years post diagnosis and my life is pretty pain free and normal, just with a lot of drugs. Methotrexate has been my best friend as from hardly being able to walk, hold a cup, etc etc I now do just about what I want, when I want.

The steroid injection will probably last well beyond your wedding, so don't worry about that. If anything it will make you feel like superwoman and you'll overdo everything! If you like to have a drink you might want to consider holding off on the MTX until after the big day...but dépend si how urgently you need to get things under control.

And as for Naproxen, always follow your own doctor's advice as they know your medical history and we don't. But I and many other on here have been taking both for years with no problems. Tho' these days the cocktail of drugs I take works well so I hardly need them.

Welcome, and enjoy your wedding!

[Millysmum in reply to helixhelix]

Thank you so much, after reading alot of posts on here I'm feeling more relaxed, about tomorrow. I'm starting prendisolone this evening, as my man said it would get me to Vegas and the injection wasn't quite enough although definitely improved. This new world I have entered seems a very friendly place

[Matilda_1922 in reply to Millysmum]

Hi

I'm sorry you have had to join this group. We are here to support but as helixhelix has said we are not doctors and every doctor has their own way in regards to treatment of RA.

But I do know that it's best to take your steroid before 2pm as it can cause insomnia usually with breakfast and not on an empty stomach.

Hope you enjoy your holiday and special day

[Millysmum in reply to Matilda_1922]

Thank you! 1st mistake made, took steroids with evening meal!! Fingers crossed I'll still sleep, ha ha...

[Amy_Lee in reply to Millysmum]

I had 2 injection at the 1st treatment. Unfortunately, the extreme pain was still continue and I was still crippling along. Then after more than 4 months of taking mtx and steroid, I finally felt very much better and the pain level was slowly reduced. I was in remission after about 1 1/2 treatment with Arava added on.

This is my own experience. You will be fine if you follow your rheumy's instruction closely and do remember to do your daily exercise to the level your can tolerate the pain.

Amy

[Hidden in reply to helixhelix]

Helixhelix, I missed my fourth dose of methotrexate today. I am in more pain since starting to take it so wanting to stop. You say it’s been your best friend. Did it cause your symptoms to get worse in the beginning before getting better? I’m so confused about continuing to take or not.

[helixhelix in reply to Hidden]

In the 6-8 weeks between being referred to a rheumy and actually having an appointment my symptoms exploded, and week by week things got scarily worse. I then started on MTX and nothing changed so things continued to get worse for a few weeks plus I had side effects from the MTX, and then they stayed the same and I think it was week 9 of MTX before I realised that things were actually improving. My turning point was being able to tuck the sheets in the bed without wincing in pain....and I was soooo excited!

But we are all different. Talk to your rheumy, and see whether your blood tests results have shown any improvement, but unfortunately you have to make your own decision about what's best for you.

[Hidden in reply to helixhelix]

Helixhelix, thank you for your response. My rheumy told me it could tak up to 12weeks but I’m still on 10 mg of prednisone so I thought that would continue to help but pain was coming back fiercely. I think I’ll take my dose today. Monday is lab for bloodwork and I see her again Thursday. I guess lab results may help me know if I should continue. You have helped. TY

[nomoreheels]

Hiya Millysmum, welcome. Well, the not so good news is you've been diagnosed, the good news is you're starting treatment... & you've found us! I was diagnosed seropositive 10 years ago & am generally well controlled. I say generally because my feet refuse to take notice of the meds I take, or they don't reach there, one of the two! One of my meds is methotrexate, 9 years & counting. I wasn't given a steroid injection on diagnosis but I was prescribed a course of steroids, they brought the inflammation under control in, guess what, my feet, the only joints affected at the time. I was also prescribed 2 NSAIDs, one to take nightly & the other when needed.

Re naproxen. Your Rheumy will be aware it can be taken with MTX of course, it's his speciality & prescribes as his patients need. What you've probably read is general advice & usually when it's high dose MTX prescribed concomitantly not low dose. Many here take the two together, it's usually one of the first NSAIDs prescribed. There are other NSAIDs prescribed, I take etoricoxib when needed for example, another listed as having a reaction. It's a case of necessity, you need MTX to try to control the disease & you need naproxen to tackle the inflammation, making MTX's job that bit easier & making you feel better, the inflammation causes pain. You'll have been prescribed folic acid to help with any side effects you may have, take them as prescribed. It helps to drink plenty of water on MTX day too.

Best to take your steroids as your Rheumy advised, the same with any other meds. It sometimes gives specific instructions on the adhesive label the Pharmacist sticks on med package, or "take as advised" which isn't so helpful if you don't recall or didn't write it down! I've always been told to take mine in the morning, still do, even though there are some medical professionals who say taking it at night, specifically 2am, tackles morning stiffness better. I take my NSAID in the evening as advised by my Rheumy for the same reason. Another example, when I first started MTX I was told to divide the dose with meals (15mg 2 tablets with breakfast, lunch & evening meal), others are told to take them in one go. It's a minefield so better to take your meds as your Rheumy directs. You can always ask if anything doesn't suit you.

I don't know if your Rheumy mentioned but if not you may read that you've to be careful with alcohol & MTX. This is because both can affect the liver so we're usually advised to keep within limits or not drink at all until you know how your liver responds to your meds. Your drug monitoring bloods will determine. Some have no problem at all, it's just one of those individual things. If you're unsure at all, particularly with you getting married, (congratulations by the way!), do ask your Rheumy, Nurse or GP for advice.

I know it seems as though there's so much info to take in, you've just been diagnosed & then we're adding more! It's all intended to help you so just ask if there's anything you're unsure of or we've not covered. I hope you find it helpful being here, we've lots of experience we can share.

[Millysmum in reply to nomoreheels]

Thank you, yes it's alot to take in, and with the alcohol, I'm happy to go t total, I think that's the best way forward. Thanks for help and advice

[nomoreheels in reply to Millysmum]

You're welcome. We've all been there! If there's anything you need to know & wonder if we can help just ask, there's always someone around.

[janmary]

Hello and welcome - can't add to everyone's sage advice, I'm 8 years in and doing pretty well on MTX and occasional Naproxen (though I couldn't tolerate oral MTX). It's now an occasional nuisance rather than a scarily disabling diagnosis - So go to Vegas with positivity, have a wonderful holiday and wedding.

[Millysmum in reply to janmary]

Thank uou, I'm so glad I found this forum, it's helped me do much this evening.

[Ruth12345]

Hi and welcome. Im 18 months in and on a cocktail of meds that now seem to be working well. My rheumy told me not to take naproxen and steroids at same time. Should have asked why but didnt. Just throwing that out there.

This forum is great and people are so very helpful. I, like everyone else wish you a wonderful happy time and congratulations. Will love to hear from you when or if you want to let us know how you are doing.

All the very best ... relax and enjoy. 🙂😎🙂😎🙂

[Millysmum]

Thanks everyone. Took 1st dose 6am today, with a few ginger biscuits and had loads of water so far. Warned to try as early ss possible because we fly out to Vegas on a Monday and get married the following Monday, so fingers crossed any effects will be out the way by then...

[Gigi71]

Welcome and congratulations for your forthcoming wedding, just a reminder to make sure you have notified your travel insurers of your medical condition for the states. Will give you pease of mind. Most of all have a great time. X

[Millysmum in reply to Gigi71]

Great minds, I rang them yesterday, so it's all been updated, thank you. Very exciting... Never been to the States before, was devastated when this all started.. Was so bad last weekend I borrowed my mums buggy!! When saw rheumy I could hardly walk on right knee, week before had a Baker cyst rupture so felt a bit game over for the trip. This morning my knee is nearly back to normal, steroids are amazing. I know it's only a quick fix to get me there, but I can start thinking about getting the suitcases out and just pray the dress will still fit!!!!! 😎

[Gigi71 in reply to Millysmum]

That's good. I have been to the states a few times and Las Vegas once, it's very full on. I've had RA over 30 years, good and bad times, but with a positive mind as you have and the right medication, plus some heathy life choices and exercise, you will have many good times. This forum is brilliant and no question is too silly. Hugs G X

[Mandalou]

Good luck for the wedding Millysmum and enjoy Vegas!

Let us know how you get on.

Welcome to the Forum and look forward to hearing about your progress.

Be prepared for a little come down after the high of your wedding as you wont have had time for your diagnosis to properly sink in.

One thing for sure is with oral steroids you will certainly be able to enjoy the vast and famous Vegas buffets!

Very best wishes to you.

Mx

[Millysmum in reply to Mandalou]

Thank you!! Yeah my rheumy said this was a quick fix, must admit am soooo much better today, but realize the pills stop in July and prob be a very different story. So many emotions this week, one thing it's made me realize I need to look after my body, be healthy, which is something I haven't been great at, but for a few months now I have changed all that. And finding this forum last night was a godsend. Been so scared of taking methotrexate, just downed them this morning and did the housework... So good to chat to people and that they really do understand. Thank you

[Mandalou]

You have been given all the info about taking Folic acid Millysmum?

Mx

[Millysmum in reply to Mandalou]

Take it tomorrow 15mg one dose.

[Izzyowl]

Hi Millysmum, congratulations on your wedding. Last year when I was newly diagnosed we we went on holiday around America too. We had a fabulous time but I didn't pack properly. I only took one long sleeve shirt amongst many short sleeved tops and ended up washing that shirt through and long trousers every night because of sun sensitivity from the methotrexate. So that's my strong advice. Also a good sun hat, sun screen and the best sunglasses and you will be sorted. I also took with me a letter from my constultant listing all my meds. Hope that helps. We were there in August so it may not be as hot when you go but just in case I would be prepared. Have a wonderful wedding and holiday. It is fabulous over there.

[Millysmum in reply to Izzyowl]

Ah I'm so pleased you enjoyed your holiday! I have got a whole of suitcase of white trousers and some long sleeve shirts, as have always been sun sensitive, wouldn't really have chosen Vegas in June as soooo hot but other half wanted to as is our 5th anniversary of meeting. Two sun hats aswell. Thanks.

[thelmar]

Hi

My RD also started with a ruptured baker’s cyst. In fact it was that that led to my diagnosis. That was 13 years ago. Been on methotrexate ever since but never had oral steroids although I have had occasional steroid injections. Now on a biologic and reducing methotrexate dose gradually as my RD is now in remission.

Go and enjoy your wedding and don’t worry about the future. There are lots of people around to help you.

[Millysmum in reply to thelmar]

I think I'm only on the steroid pills because he promised to get me to Vegas and so close. The help and friendliness on here is so helpful, thank you

[Gnarli]

Hi Millysmum and welcome. Many congratulations on your forthcoming wedding and commiserations on your diagnosis. As you've had loads of good advice already I can only say to take plenty of lipsalve. As Vegas is in the desert it's very dry and hot in the day but cools quickly at night so great for the joints but flipping horrible for the skin so a cardi and a face-mist plus salve would be useful. Wishing you all the best

J

[Millysmum in reply to Gnarli]

Thank you, never thought of the lip salve. Have a few light cardies for the evenings. Think I'm almost there, best get to boots at some point in the week and get measured for flight socks, no my swelling in my calf has gone down. Thanks.

[kbspots]

First and foremost do not believe everything a doctor tells you. He may add rheumatologist to his title but as I have found out through 25 years not all are experienced enough to give out the proper treatments and diagnoses. I have been to probably 10 of them in my lifetime and everyone one of them had their own ideas about whether or not you even have a rheumatic disease at all and courses of treatment. Thank God I educated my self about all rheumatic diseases and/or autoimmune disease...and not just on the internet. I had access to doctor's medical library at a hospital. I only found one doctor out of maybe 10 who I was really impressed with at a teaching hospital/university.

[Lyneal]

Hi don’t stop your Methotrexate, flare ups are worse than the drug, it is a nasty drug, take folic acid from your nurse for six days a week helps with symptoms. It will get better I have been on it for 3 yrs , one year on tablets and two on unjections. So good luck with everything.

[NanaFifi]

Congratulations on your up coming nuptials. Fingers crossed for you that all goes well health wise. I’ve had RA and Lupus since I was 20 and will soon be 59! Have been on steroids for nearly 35 years and methotrexate for past few years. I couldn’t tolerate the methotrexate orally so I inject once a week. Steroids literally saved my life and that of my daughter and since starting on methotrexate although I have good days and bad my life is altogether much easier!

This is a great place to get support from people who are in the same boat as yourself.

Have a wonderful trip and wedding day!

[Millysmum in reply to NanaFifi]

Thank you, well had my first 15mg of methotrexate yesterday, and seemed to have a dry metallic mouth, gripy tum and rather windy, but thats it at the moment, been okay today, just a bit tired... Not sure if that's how it will always be or if the more I take it the worse it will get... Shall see next Saturday... Thank you about the wedding, got the sunscreen etc today!!!

[NanaFifi]

i Had horrendous wind! The vile disgusting kind that kept me housebound for days!! I changed over to injections and that disappeared. Metoject Injections are more or less painless so don’t worry about it if you have to change over. Hopefully your side effects will settle down, metallic taste is quite common although I haven’t experienced this personally. X