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RA and associated effects

Posted: Thu Oct 05, 2017 1:48 pm
by Guest Posts
I would like to know how to best approach my Rheumatologist with side effects such as dry eyes, swollen glands, palindromic /fibromyalgia pains in muscles/tendons, fatigue etc.

Every time I see them they ask how I feel, I say my joints are largely fine, but I struggle with everything else on a daily basis and they say "your blood tests are fine see you in 6 months"

I know there isn't a cure but should Rheumatologists be so dismissive of other non bone related symptoms?

Thanks for your help

Susan

Re: RA and associated effects

Posted: Sun Oct 15, 2017 9:46 pm
by Malcolm Persey
Apologies that it has taken time to reply. Unfortunately many patients with rheumatoid arthritis can have very well-controlled disease (joints, blood tests fine) but still feel unwell. This is poorly understood and may be because our measurements of disease are insufficiently sensitive or because there are parts of the disease we cannot measure. The drugs themselves can sometimes be responsible for these feelings. The only way of telling is to try withdrawing the drugs if your rheumatologist feels this is safe, or to persuade him/her that your disease activity is higher than he/she thinks; you should be asked about your visual analogue score for pain, which allows you to give a high score for pain even if the doctor can see nothing wrong) and this may allow an overall disease score to be high enough to consider different medication. It is sometimes important to consider asking to see a different clinician as a different pair of eyes and ears can pick up different vibes from the patient. Occasionally trying a different medication can relieve these non-specific symptoms.

Re: RA and associated effects

Posted: Tue Oct 17, 2017 9:44 am
by Dr Claire Mansfield
Hi Susan. I'm sorry to hear that you feel dismissed and unheard. As already suggested, it might be helpful to try and change clinician. Additionally, it might help to take someone you trust into the appointment with you - for some people this allows them to feel more confident to convey their difficulties. Taking a list of points that you want clarity over might also help. Good luck.