Rheumatoid arthritis

[Dawnee28]

Hi everyone I'm a 62 year old and have been diagnosed in September 2014 with RA. I'm taking 20mg of methotrexate per week and anti sickness tablets the day before and the day I take methotroxete and the following day. I still have pain on hands and wrists and it is really getting me down. Is this usual I have an appt with consultant in a few weeks time. Can anyone tell me if it's too soon to feel any relief from pain. Feel absolutely washed out too. Dawn

[Hidden]

Everyone is different my rheumatologist told me I would never be free if pain my hands are terrible I was diagnosed in 2013 its so hard to come to terms with it all somedays I hope you get sorted soon

[Dawnee28 in reply to Hidden]

If the pain doesn't go away I feel like coming off methotrexate and dealing with pain with pain killers. I feel really awful and sick on methotrexate and I thought once it had kicked in ..... I would be pain free. Thanks for your reply June I'm new to this site and am looking for advice. Methotrexate has changed me into someone I don't want to be lol x

[farm123]

You may need to have the meds reviewed as there are others that can be tried. Before your appointment think about and make notes (try and refine to bullet points for the appointment) - where the pain is, how long it lasts - morning stiffness or all day, side effects of mtx, washed out etc so you can discuss with the consultant. Farm

[nomoreheels]

Hiya Dawnee28 & welcome. I'm sorry to hear you've been in pain so long. If your wrists have only been really problematic since your last review then what you're currently taking isn't enough. The disease can spread to other joints than when first diagnosed if we're not properly controlled & 16 months is a long time if you've not had a med review. Again, fatigue is a sign you're not controlled. Were you not prescribed an NSAID or pain relief to take either when needed or on a regular basis?

Were you not prescribed folic acid to take? MTX is a folate antagonist, it depletes what little folate our bodies store & if you've not been taking it then side effects can be a real problem, you Rheumy should have explained this when he prescribed MTX & also the folic acid. I take 5mg every day except the day I inject. Also, did you go straight onto 20mg or did you Rheumy start you on a lower dose? It may be too much for your body to cope with. There are other DMARDs you can try, leflunomide, sulfasalazine, hydroxychloroquine to name a few. The thing is without DMARDs the disease will never be controlled, pain relief isn't enough & permanent damage will be the result.

I started on HCQ & did well for the first year but it started to be less effective so my Consultant added HCQ. That didn't work so the HCQ was stopped I remained on MTX, coming up to 7 years now, first tablets but then my side effects became disruptive to I changed to injections. I've been much better & now apart from the odd blip considered controlled.

Has your Rheumy ever offered you a steroid injection or a short course of oral steroids? That may help. Have you looked at the NRAS website? That may help understand more if what you can expect from treatment. The helpline is available to us all as well if you feel talking to someone would help nras.org.uk.

I hope your Rheumy listens to your concerns, be honest with him, he's got your best interests at heart but does need to know how it is for you. Sorry if I seem to have asked more than I've helped!

Take care & keep in touch.

[Dawnee28 in reply to nomoreheels]

Hi reading through your post and realised it was September 2015 I was diagnosed ...oops my mistake. I do take folic acid 48 hrs after methotroxete. I also started on 10mg for 2 weeks and then 15 for 2 weeks and now 20mg. Also had chest infection around Christmas time and had to come off methotroxete for 3 weeks. I'm all at sea as you would say. I do take ibuprofen 400mg 3 times a day. Trying to reduce this though. Regards dawn😌

[nomoreheels in reply to Dawnee28]

It is easy to make typos! Well then your next appointment will only be your first since diagnosis won't it? This makes a difference, because unfortunately RD isn't a one size fits all kind of disease. For example, your folic acid may be increased, 1 x 5mg tablet probably isn't enough & if your Rheumy agrees that can be increased it may well help how you're feeling. As you had a chest infection & a break from MTX then it will need a while to build up again, particularly as you'd only bee taking it a short while. I can manage 2 or 3 weeks off it before I miss it & need to get back on it. If the ibuprofen doesn't ease your inflammation ask but you can try a different NSAID, there are plenty less generic more designed to help the type of inflammation have.

Do speak to your Rheumy about all your issues, bullet point lists are useful.

[Dawnee28 in reply to nomoreheels]

Thank you so much you have been a great help. I will let you know what happens after my visit to consultant. I find it hard to accept that all my life all I used to take was an odd paracetamol here and there for a headache and now I'm bombarded with all kinds of drugs.🤑🤑🤑. Hopefully better times ahead 😀😀 dawn

[nomoreheels in reply to Dawnee28]

Many of us were exactly the same, it's one heck of a change in lifestyle too. I was fortunate, my Consultant took time with me to explain & gave me loads of reputable sites to learn more, I'm that way anyway but it helps, knowledge is power & all that! I do wish though that all Rheumys just stepped back & put themselves in the position of their newly diagnosed patients, it would help so much. I look forward to your update but meantime there are some things to can do self-help wise... try to eat well, drink plenty of water & try hot or cold compresses. Heat works best for me but you might find a bag of frozen peas wrapped in a towel on your hands & wrists for about 10 mins at a time helpful, or one of those sleeves you put in the freezer & wrap round a wine bottle, put your hands in for a few minutes.

[nomoreheels in reply to nomoreheels]

Just read my other reply, talk about typo's - it should say it's easy to make typo's!!! Damn predictive text lol

[Dawnee28 in reply to nomoreheels]

I know it happens to me all the time, sometimes I blame my stiff fingers tapping wrong letter but I believe it is that pesky predictive text that makes the errors lol 😁

[Dawnee28 in reply to nomoreheels]

I do love to put my hands in warm soapy water it does ease them a lot. I shall try the cold idea too. I recently went wheat free in my diet as I heard it can be good for arthritis, but again I think it's too early to see if it makes any difference, quite expensive diet but I'll stick with it and see. Once more thanks for all your advice and help

Regards dawn 😀

[keeta in reply to Dawnee28]

Hi I use hot towels aswell.it does help .It's my feet that are the most trouble at the moment .so painfull I have difficulty walking. And if I sit down or get up from bed I can.t put my feet flat on the floor I have to walk on the sides of my feet .anyone else have this.