rheumatoid arthritis: Hi, I was diagnosed with ra about... - NRAS

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rheumatoid arthritis

masymae profile image
6 Replies

Hi, I was diagnosed with ra about 6 months ago now, and I have been taking methotrexate once a week, 6 tablets, folic acid 6 days a week, one tablet, one steroid every day and two hydroxyl tablets every day. I still have symptoms in my ankles which get quite swollen most days, knees and hips and still feel generally unwell, which makes it difficult trying to work. I thought after all this time on these drugs that I would be feeling better, lately one of my legs seems to be going numb when trying to walk and I feel like I have got a club leg, is this normal or could it be the drugs not agreeing with me.

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masymae
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6 Replies
Angela123 profile image
Angela123

Hi masymae. You seem to have a few things going on here, and if I were you I would speak to the doctor about your concerns. It could be that your medication is making you feel rough or something else, but the numbness in your leg I haven't a clue. Let your doctor check you over and put your mind at rest. Angela x

Caza profile image
Caza

Agree with Angela best get checked by a doctor. Hope you get things sorted. X

PJsorefeet profile image
PJsorefeet

Hi ya,

sorry to read you are struggling. Definitely get that numbness checked by a doc or call your rhemy helpline for advice.

with regards to feeling better, i remember the frustration well. I'm 2yrs in now but looking back I think it was a good yr before i felt better, i was on the same meds as you but in x10 methotrexate. Just one tip that helped me (and everybody is different so may not be relavent to you) the meds alone don't make you better, you have to take a long hard look at your lifestyle and make alterations, especially in the early stages whilst you wait for the meds to work. This is much easier said than done, I had 2 kids under 3, a job and a household to run at my diagnosis. My advice is to look at the things you HAVE to do, try and spread them out to pace yourself. Then add in a few things you LIKE doing and leave everything else or draft in help. It doesn't change over night but over a few weeks you do start to feel less exhausted and flu like, you begin to think straighter again and less stuck.

I found speaking to some body in the same place as me through NRAS was really helpful. Give them a call, sharing tips especially at the beginning is really good, once you're in steady flight things do get a bit more back to normal.

Good luck, and hope you feel more in control of things again soon.

Merry Christmas,

Penny

Vandf profile image
Vandf

That is such good advice! The hardest thing for me was accepting the diagnosis and realising that I had to make lifestyle changes. I hope you feel better soon. Keep asking questions and use this forum. There are some wonderfully supportive and helpful people on here and the NRAS website is invaluable for advice. Take care.

nomoreheels profile image
nomoreheels

I does sound as though your mix doesn't quite do it for you masymae. Oddly enough 15mg MTX (tablets) & 400mg HCQ double therapy didn't work for me but when my Consultant withdrew the HCQ, leaving MTX as my only DMARD, I showed improvement rapidly. I don't quite understand why, it will have been explained at the time but I don't remember, you would think 2 DMARDs would work better than one! I still needed a short course of steroids off & on but once I changed to injections that's when I really noticed a difference & found I didn't need the steroids any more. Things have changed in the last couple of years & I'm on long term low dose steroids but MTX still does the majority of the work controlling me. It's also possible that your doses aren't quite right. You're on max dose HCQ but maybe the MTX could do with an increase, it's not unusual for your Rheumy to alter doses, especially early on in treatment.

Maybe my experience will help maybe not, but we do know unfortunately RD is an odd beast & we each react differently to our meds. I do hope your Rheumy is able to work out what is causing the numbness, that to me sounds nerve related, maybe inflammation increasing the more you use your leg & pressing on a nerve. I have issues with my knees & hips but that's OA, has this been explored?

I would think having been diagnosed 6 months you're due another appointment imminently. If that's the case I'd start writing a diary or list everything that's affected & showing no improvement to take with you. If you don't have an appointment soon I'd contact your Rheumy team, please don't think you're bothering them, it does sound as though you're not well controlled. Do rest when you can, if you fight against RD it really bites back. I know that will be difficult with working but once home do try to, housework can wait!

I hope you'll let us know how you get on?

masymae profile image
masymae

Thank you all so much for your replies, it really is nice to communicate with people who understand what your going through, I have a rheumy appointment in January so will find out then and a blood test tomorrow. Its a strange thing, one minute you think things are getting under control and feeling ok and the next you feel dreadful and it all comes back. Merry Christmas to your all

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