Need some advice please.

[Jaynes]

I was diagnosed with R A in my hands and feet 14 months ago, my specialist said it was low disease activity and prescribed hydroxychloroquine 200mg as well as naprosyn and omeprazole. My hands are slightly swollen but not very painful, my feet hurt sometimes on the balls. I last saw my specialist in February who said I was doing well and may have a high pain threshold as hands and feet were not causing too much trouble. The last few days I have felt very tired as very busy in work, also my legs and feet are throbbing at night and also during the day and I'm not sure if this is a symptom of R A or whether its something else. I have also noticed my hands are getting clumsy, dropping things, cant get my pound out of the shopping trolley.

Sorry for the long essay but can anyone help as confused as to what is happening.

[nomoreheels]

Hiya Jaynes. It sounds as if you're possibly not as well controlled on your meds as you could be. I started on hydroxychloroquine (but 400mg daily) plus NSAID, pain relief etc. & it hit it on the head early days but became less effective over a year. We are all different of course but nevertheless as it's 8 months or so since you last saw your Rheumy it could be that it's not working as well as it could now be at the originally directed dose. Is your Rheumy appointment due any time soon? It does seem a long time for a for a newly diagnosed patient to be seen again, whether or not you were considered to have low disease activity it's still activity. If you have a contact number for a Rheumy nurse I'd ring & see what she makes of it.

In regards to feeling more tired, again that smacks of not being controlled well enough though fatigue is part & parcel I'm afraid & if work is busy you'll be even more tired & ready to drop at the end of the day I would think. Similarly your weak hands could be a sign of fatigue. I don't know if you've taken a look at the NRAS website but it's a wealth of information & you may find this interesting relating to hands nras.org.uk/hands-joint-pro... I think what would be best is to see if your GP can bring your next appointment forward if it's not imminent. There's no point struggling if you feel you are.

I hope this helps & you receive the help you need.

[helixhelix]

I think Heels' reply is spot on! Start pushing for an appointment ASAP......

[Sandiedc]

Couldn't agree more, I've had an 'aggressive' form diagnosed in April, am on high med but had no foot or hand pain for 4 weeks now and my feet were swollen and I was struggling to walk, don't put up with it and good luck xxx

[lois1966]

I was recently diagnosed with rheumatoid arthritis osteoarthritis and lupus so I fully understand your frustration but I fully agree with the others a change in medication is needed I feel much better and I had no mobility in my right hand at all ...no energy swollen painful joints ...I'm taking topamax 25 mg 3 x dailey a compounded drug for lupus called amodiaquine 100mg 3 times a week and methatrexate 1cc once weekely plus the amino acid the d3 5000 and vitamin b 12 for energy that helps ...talk to your Dr

[Terrpist]

I have osteoarthritis could be that or fibro

[Jaynes]

Thanks for the replies guys. I am going to ring on Monday and try to get an appointment as had a bad night last night with aching legs and hands and one of my hands is swollen today. Also I think I may have been overlooked by my rheumy as I was being seen every 3 months and I remember when I saw her in February she said she would send me an appointment for 6 months time.

Thanks again. X

[nomoreheels in reply to Jaynes]

Just a thought..... I know each hospital & NHS authority works differently but at the one where I see my Rheumy at the end of the appointment she asks me to make an appointment for another 6 months time at the Rheumatology Dept reception desk & given a date which is confirmed by letter in the post. I receive an automated reminder by phone the day before the appointment. I'd ask how the appointments system works where you go, it may be that your Rheumy assumed you knew to make one if it's a similar system.

[Jaynes]

Hi guys, Thought iwould give you an update. I have rung to check when my next appointment is due and they have a 8 to 10 week backlog and was told I should receive an appointment within the next few weeks.

[nomoreheels in reply to Jaynes]

Oh good.... I think. If when you receive your appointment date it's another couple of months I'd be tempted to see if your GP can expedite the appointment or, if you could attend at short notice, ask to be put on the cancellation list, if your Rheumy Dept has one. Alternatively, if neither are possible ask if your GP can prescribe something whilst waiting for your appointment. He may prescribe a different NSAID or a short course of steroids or injection if there's someone at to your Practice who could administer one. Have you had a blood test recently to see just how much inflammation is present? I know it's not always required with HCQ but my Consultant requested them at 3 monthly intervals. 8 months is an awfully long time without any checks to see how the meds are working.

I hope you are given an early appointment, you've been left too long & a high pain threshold doesn't always work in our favour! It's taken me quite a while to learn that.

[Jaynes]

Hi no heels, thanks for your good suggestions. I am going to wait for a few weeks for an appointment as think I have waited this long so can wait bit longer. Ha. Also my GP checked my blood a few weeks ago for a general overall and rd scored 4 which is probably on the low scale but I know it was 3 point something in February when I last saw my rheumy, my hands and feet are aching more now. This is all new to me and I am still trying to understand all the different terminology but am learning a great deal by reading the posts on here so thank you all. X