New RA diagnosis - some questions

Bones, joints and muscles
1

Hello, I was diagnosed with RA a few months ago, hands and wrist mostly, swollen, pain and difficulty using them.  Anyway, I had a steroid injection and was started on methotrexate and folic acid.   Built up to 15mg weekly and started to feel better then suddenly this morning feel right back to square one - is this normal?  How often should I need a steroid injection?   Will I ever stop feeling so tired and achy (feels like an odd muscle ache rather than the RA pain)?    And the pain in my neck is awful and new! 

Thanks for any answers / advice :-)

2

Hi Caz.

in the early stages there are lots of ups and downs. It may be that the steroid injection has worn off and the methotrexate hasn't fully kicked in yet, but it may be that you have a virus. Even the most insignificant of viruses can affect your RA. If the pain carries on contact your doctor.

i have had lots of UTIs that have affected me in this way.

hope you feel better soon.

3

Iv'e had RA for 12 years I'm 65 just to give you some perspective, I found after a steroid jab I was much better, but it does ware off.

RA is full of ups and downs and unfortunately you can only have so many steroid injections, so the asnswer I'm afraid is medication, pain killers, and anti inflamatory's so see your doc. about that.

The tiredness also goes with RA as does muscle ache.

I'm no expert but you seem to have classic symptoms I'm afraid.

Good Luck.

  

4

You did not tell us what kin of steroid injection you had: intramuscular or intra-articular?

Rather than be dependent on the steroid injections, it would seem that your rheumatologist should up the MTX dose. If that doesn't work, consider starting a biologic drug.

5

Thank you all very much, it makes it a bit less scary to talk to people :-) .   I have been told not to take ibuprofen, and my dr suggested cocodamol but that gives me nightmares!   Was going to ask her about diclophenic(sp?).   I don't know about the steroid inj it was in my leg, so muscular I guess.   Am just at the stage of trying to find out what I can do, and what to expect, but am drowning in differing advice on Internet, esp re drugs :-(   .   To be honest the methotrexate scares me but prob just being a wimp! 

6

I'm 20+ years into this disease and have pretty much been through it all. Not saying that what works for me will work for you, but chronologically, here's how it went with me:

MTX and NSAIDS, and when that wasn't enough, they increased the dose.

Then they added Kenalog injections into the joint, not the muscle. But these injections, while very effective, don't last forever and you cannot get more than 2 per year per joint or the tendon tissue may rupture.

When that wasn't working, they added Tramadol [synthetic moderate pain killer].

Then I went on Humira, a biologic about 3 years ago. The MTX dose was cut in half. I no longer need Tramadol I do still take Celebrex [NSAID]. I haven't had a Kenalog injection in about 4 years.

I am very much against systemic Prednisone [pill steroid] because I am diabetic and it makes my glucose go up. I also think that too many doctors had these, and pain killers, out like candy, when they should be focusing on DMARDS and biologics.

Most autoimmune drugs will make you feel lethargic when you're in "flare mode." Sadly, MTX will also make you feel lethargic as well, but typically only for one day a week when the dose is high.

As your flares are controlled with the drugs, the achy/sometimes flu-like symptoms will go away.

I want to give you hope. I'm in my 60's and in spite of the diseases, I still sail regularly and really enjoy life now. So I suggest that it might be wise to understand that the first year is the hardest. There typically ARE some lifestyle changes. I promise you, you will become an excellent time manager!

Keep asking questions. I'm not sure if this forum will allow it - or possibly delete my post - but there is another forum.......you will get great insight from other old timers like me. Rather than post the URL, go to Google and enter this:

community "RA Connect"

7

Hi again Caz,

Ibuprofen apparently has some adverse effect on you if you're on methotrexate. Cocodomol can become addictive and it will also make you constipated. Diclophenic works well but often affects your liver.  Keep it simple if you can and stick to paracetamol.

i am assuming that you are in the UK. I've seen references to biologic drugs.  These do work well and two years ago I had an infusion of Retuximab and it worked wonderfully well for me, however, bear in mind that NICE (National Institute for Health and Clinical Excelence) have a huge say in who and when these drugs can be used.  We don't pay for our medication in the UK and the biologic drugs will only be offered when alternatives have been tried. 

So my advice right at the moment is to put your trust in your consultant and keep it as simple as you can with pain relief. 

Dont be afraid of the methotrexate, it's your best friend and you'll learn to live with the RA and all that comes with it.  Don't let it rule your life, do what you can to make sure you're as healthy as you can be Ie diet etc and after that live your life as you did before the diagnosis as far as you can.

i am almost 67 and I've been taking methotrexate for eight years and I'm as healthy as most people of my age and healthier than most.

like I said, try not to overthink things, keep it as simple as you can and let someone else worry about it.

good luck

8

U got my vote for the best informative advice.

thankx I learned a lot from u.

cheers hope

9

U have shared a lot of good information. 

THANKX for sharing

10

Isn't it great when the steroid kicks in.. Then as it wears off its awkening experience.

it takes several days to a week for the MTX to stay at blood level.

U can find all the answers u need to go online -treatment of MTX ..

 

11

Hello, and thank you for your responses, it really helps :-).  Just one thing, what does "it takes several days to a week for the MTX to stay at blood level." mean?  Sorry if I am being a bit thick!  

12

Hi Caz,

i was was told, when I first started taking methotrexate, that it would take up to twelve weeks to start working. In my case it took longer but it's different for everyone. I'm not sure what it means, to stay at blood level. I've never seen it referred to in that way. But like I said, it's different for everyone, just be patient and it will work eventually. It's hard waiting though I know. I thought mine was never going to kick in but it did gradually.