Another newbie needing advice ...: Good afternoon, I... - NRAS


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Another newbie needing advice ...


Good afternoon,

I have been following all your posts for several months since my diagnosis of early seronegative inflammatory arthritis since February 2018.

I was diagnosed following my 4th rheumatology opinion suggested by my pain consultant and occupational health doctor.

I started on hydroxychloroquine in April and by July had noticed a massive improvement in my stiffness, general ability to walk and reduced swelling of hands and feet (which I hadn’t even realised were swollen and put it down to weight gain) as well as fatigue.

I saw my rheumatologist 3 weeks ago did the first time since starting treatment and gave her the good news. But also mentioned significant pain and limited movement in my knee which she had organised an ultrasound for.

The problem is I think I spoke too soon as within 2 weeks of seeing her my feet and hands are swollen again the stiffness is back my knee I can only bend slightly.

I spoke with my GP about the knee last week and she is trying to expedite the appointment as it using until end of October and I’m struggling to walk. Other symptoms were not as bad then so did not mention.

My worry is I was classed as stable I am not due to go back to rheumatology until Feb to see the nurse and doctor in August 2019.

Should I contact them? I have never been advised of a helpline or told to contact if any issues before then but feel like I’ve gone back to the beginning.

I have to be careful of the meds I take due to immune deficiency and recurrent infections and already take prophylactic antibiotics.

I have booked a private knee ultrasound +/- steroid injection as it is really affecting my walking, luckily I am on leave for the next 2 weeks.

Sorry for the long post.


6 Replies

Contact your rheumy

Phone the hospital & get the number of the Rheumatology help line......if there is no ome there...........a Rheumy nurse will call you back......she can get your apt brought forward, or maybe adjust/increase your meds.

Unfortunately we often have to juggle our meds for awhile before they get to all the painful parts.But don't worry you'll get there......let's hope sooner rather than later !


Definitely contact your rheumy.


Hello and welcome!

Yes, if things are bad do phone hospital and ask for helpline number. Or you might th be able to find number on line. The rheumatology nurses are usually very helpful.

I hope things improve for you soon.

Thanks all for your advice. I will try and get hold of my Rheumatology Department tomorrow.

Enjoy the rest of the bank holiday x

Our's is a very up-and-down disease, a fact well understood by rheumy departments so I'm sure they would want to hear from you. I'm really sorry you're having such a rotten time. Wishing you well


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