Meds not working!

lauras1510

A few years ago my rheumatologist reduced methotrexate from 17.5mg to 15mg and from hydroxychloroquine every day to just weekdays. Since then I’ve had several flare ups and I have basically been in a flare up now since the start of the year (5 months). I’ve been put on a short course of Prednisolone twice which helps while I’m taking it but once it stops the stiffness comes back. I’m seeing my rheumatologist next week and wondered if I could go armed with any information or suggestions or if any of you have been in the situation how did your rheumatologist deal with it? I feel like my rheumatologist is just fobbing me off with steroids without actually dealing with the problem.

chrisb

Hi @lauras1510,

Welcome to the versus arthritis forum.

You suffer with RA and over time have been prescribed methotrexate, hydroxychloroquine and prednisolone. You have an upcoming appointment with your rheumatologist and would like to hear from any forum members who can offer advice, based upon their own experiences, as to how to prepare for the appointment; specifically, is everything being done to address the fundamental issue.

If you haven’t already visited our website then this link may be useful:

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

I hope you receive some useful input from forum members and that you have a positive outcome from your meeting.

Best Wishes

ChrisB (Moderator)

BettyMac

Hi lauras1510

I had a similar problem a few years ago. My quality of life was awful and I felt pretty miserable and hopeless. Inflammation and lack of sleep can really do a number on one!

This maybe won’t help you much this time round as your Rheum appt is in only a few days but . . .

I hit upon the idea of keeping an online diary on my “notes tab” when things were flaring up.
Each day I briefly recorded

• which joints were playing up - tender and/or swollen
• How much pain I was experiencing
• how my daily activities were affected eg dressing, work, personal care etc
• How my sleep was affected
• What meds I’d taken + times of these

I printed this off and used a bright pink highlighter to show times I’d been in pain - and I took it with me to my Rheum appt.

They don’t have the time to read through stuff like this - so I just handed it over and said “The highlighted areas will give you an idea of just how bad this has become for me”

If you don’t have access to a printer, a small notebook would work too. Just put the date at the top of the page and use a new page for each day. Highlight the worst bits and take it to the appt - a quick flick through is all that’s needed to show how much your life is being affected.

This might be more useful next week, if you’re not already doing something similar.

Before every Rheum visit - I have a think about what I need to get out of that appt.
eg - Do I feel my disease is under control? What would they think about dropping/upping a med dose? What specific worries/concerns do I have?

I usually make a list of all the things I want to mention, then organise it into bullet points and take it along so I don’t forget anything. Have a pen handy to jot down the info they give you - or take a trusted person with you to do this.

I know my approach won’t work for everybody so hopefully others will drop in and suggest other ways of coping with this.

Good luck- and I hope things goes well for you

.

lauras1510

that’s really helpful thank you @BettyMac I have a calendar in my planner where I write down briefly what hurts each day and it he literally been all year so far. I will highlight it and take it along so they can see. Thanks so much for commenting!

jamieA

Hi @lauras1510

I'd agree with all @BettyMac has said. I keep an A5 size diary which I keep up to date with symptoms, treatment, medication and appointments. It's very easy for me to forget or mis-remember past occurences so having it written down is helpful. I usually write out a synopsis of this and take it with me to my appointment so that I can get over all that I feel I need to. I've found it difficult to remember all that's discussed with my rheumatologist and there's no easy way I can write it down while in the consultation room - no desk to lean on - so I normally go to the waiting area immediately after my consultation and jot down the salient points while they are still fresh in my head. It's a good suggestion to take someone with you if you are not confident you can get all your points across or remember all the answers. The other thing I'd say is don't be rushed.

If you don't feel your rheumatologist is addressing your needs you could ask to be referred to someone else - if that's possible in your health board area. I did that in 2021 by documenting my recent health history and the lack of urgency in addressing my issues. I ended the letter stating that if the rheumatologist was not prepared to help me I wanted referred to another doctor.

I hope your appointment goes well and you get the treatment you need.

JenHB

This may not be relevant but if your bloods are 'normal' from the rheumatology view it may be worth speaking to your GP for more tests. I don't know what age you are but after some further investigation by the GP last year was told that I was going through early menopause. I then did some googling and was 'oh, some of the symptoms I was putting down to RA having a wobble may have been menopausal' (eg fatigue/achy joints)