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Diagnosed in October last year....appointments and medication! Help

Hi

Newly diagnosed but suspect I have had it for a long time . Finally saw specialist in October had steroid injection had several x rays blood tests . Put on hydroxychloroquine and naproxen and d3 . Been unable to get another appointment until end March . Still suffering ! What should I expect to happen next ?

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Ring your rheumy nurse and tell her how your feeling and see if she can get you in sooner darling.xxxxxxxxxxxx

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Hi Liz

Sorry you are suffering. Unfortunately most Rhumatology departments go by the saying that no news is good news. Do you have a nurse or Rhumatology helpline number? If so, give them a call and tell them how much you’re suffering. Or if not try and get through to consultants secretary through the switchboard. In the meantime you could see your GP for pain relief and use heat and cold packs in the effected areas. Take care, Sarah xx

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As Sylvi and sj already said I’d ring your rheumy nurse. Also, my hospital will put you on a cancellations list if you need to be seen sooner than your next appointment. They’ll then ring you when one becomes available. If you can be available at short notice. It’s worth seeing if your hospital does this. x

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Thanks all I have tried ringing the nurses answer machine says that they are unable to call back . Rang hospital numerous times can’t get through!! Thought about gatecrashing the hospital department in person lol . went to my doctor they sent appointment referral and I finally got the March appointment . ! Don’t know what to expect when I go next !

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Should I get regular appointments ?

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If your lucky it's so frustrating but the longer you wait the more you learn and especially on this forum i would never of coped.

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When did you start on hydroxy? As it can take 3 months to work, so may still be improvements. However, you should have had a follow up appointment. I always used to ask the consultant when the next appointment should be, and get it booked before I left the hospital.

Have you had a follow up blood test to see if your inflammation levels have changed? You could ask GP to do this perhaps?

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Hiya & welcome Liz. I'm sorry you're still suffering. DMARDs generally take around 12 weeks to work so depending on when in October you started your HCQ it should be reaching it's potential. Steroids are usually given to calm down inflammation (& in turn the pain caused by it) whilst the HCQ has time to work so that could be wearing off now but the hope is that the HCQ has taken over. The naproxen should also be helping with inflammation so if all these aren't making any difference you really do need to be seen. If your Rheumy dept aren't returning helpline calls then I would ask your GP to add you to the cancellation list in the hope you'll be seen earlier.

Usually we're seen by Rheumatology every 6 months though this can vary depending on how busy the department though. The newly diagnosed should really be seen after 3 months at least though. In some areas usually nurse appointments are at 3 months. If this wasn't explained to you & you've obviously not received an appointment then do push to be seen by the nurses at least (in addition to your standing March appointment). There should be a follow up appointment arranged after your diagnostic appointment when you've just started treatment.

HCQ was my first DMARD & it really helped so I hope you do have some benefit. Don't worry if it doesn't though there are others your Rheumy can prescribe for you.

One unrelated thing, you don't mention a ppi (stomach protector) in your meds, were you not prescribed omeprazole or similar? Naproxen can irritate the stomach lining so if you weren't prescribed one do ask your GP to prescribe one for you.

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Yes I have lansoprazole

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Good.

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It depends on what all these tests and x-rays told the doctor. Do you have the results?

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Hi not yet !

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Maybe no news is good news? Although I’m sure my hand is badly damaged

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Hope so👍🏻 Why do you think your hand is badly damaged?

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Hi I have swelling over all the joints in my hand and like little modules on my nuckles they have changed bone shape ? I can’t make a fist with my hand and on the palm side all across the fingers all so painful

Had to have rings cut off earlier this year( had no idea the swelling was RA. )

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Hope you get an appoinment soon. Take care

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You can give our helpline a call on 0800 2987650 to talk about best next steps. In the NICE Guidelines on treating RA it clearly states that you should be seen monthly until the disease is brought under control! My suggestion would be keep calling the rheumatology dept until you get an appointment and push for being seen sooner than end of March and familiarise yourself with the NICE Guidelines and make it clear to them that you are aware of the treatment pathway they should be following. You don't mention where in the UK you are? Also you will find the New2RA pack of information helpful. We can post one out to you just give us a call or email helpline@nras.org.uk.

NRAS is here to help every step of the way.

You should not have to settle for substandard service.

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Thank you I got the packs and have an appointment for Monday ! The pain in my arm and hand are unbearable sometimes my fingers hurt so much , wakes me up at night . Quite scared .

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Should I still be in pain ? Taking hydro and naproxen since October?

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You should be feeling some improvement by now, but if you've been badly inflammed it can take a while for things to calm down. I suggest you write everything down for your appointment on Monday.... things like whether the pain/swelling have changed at all since yiur last appointment, when pain is worst, whether it wakes you at night, and things like that. Good luck..

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Thank you

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