Advice please! Both hands swelling!: Hi everyone... - NRAS

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Advice please! Both hands swelling!

FEARN2261 profile image
12 Replies

Hi everyone! Firstly, Happy New Year! I'm wondering if anyone can give me some advice? I had my first Rheumy appointment at the beginning of nov where the consultant said I definitely had inflammatory arthritis - probably Ra and started me on Sulfasalazine. Not really noticing any effects yet but both my hands have started to swell over the last couple of days, along with horrific pain & stiffness in both my hands & my hip/knee. The consultant said she wanted to avoid steroids because of another condition I have. I have an appointment with the rheumy nurse next month but does anyone have any suggestions as to what I can do in the meantime? Also concerned I keep getting pins & needles/numbness in hands & feet. If anyone has any advice I'd really appreciate it, I'm already on strong pain meds for OA,thanks so much, Sharon,x

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FEARN2261
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12 Replies

Please speak to Rheum team or Gp, wax bath helps hands.

Hi Sharon, I'm on Methotrexate which can take an age to show any benefit and I expect (but don't know for sure) that Sulfa is the same in that respect. It does sound as if your inflammatory arthritis is kicking up at the moment and I think you should contact the Rheumy nurse immediately. Quite apart from the horrid discomfort you are in, it will help with your ongoing diagnosis and treatment if 'they' (nurse? Consultant? Both?) see what is happening while it is happening. I have been pleasantly surprised when my Rheumy nurse has swung into action on the basis of a phone call & get the impression from others on this site too that Rheumy nurses are often the most receptive and responsive part of the team. Otherwise, perhaps you could go to your GP?

But whatever you do, don't be like I used to be and just assume that you have to put up with all forms of torture in between appointments - despite financial constraints etc. even Rheumys and GPs usually seem to recognise that people with inflammatory arthritis may well need immediate attention, especially in the early days after diagnosis. You describe quite a cocktail of symptoms - the one that leaps out at me is 'horrific pain' because you cannot be expected to put up with that - but the others suggest you need to see someone now and, if it does happen that you draw a blank with some unhelpful medic, keep pushing till you get the help you need.

Hope things improve soon, Luce x

LavendarLady profile image
LavendarLady

MTx can take up to 12 weeks before you begin to notice it is helping. I am surprised your consultant has not suggested anything else to tide you over in the meantime.

I found that putting my hands into a bowl/sink of cold water really helped with swelling in the hands and seemed to reduce the inflammation as well. Also I was advised by my rheumy to take 1000mg paracetemol with 400mg of Nurofen when the pain was really bad and that does work. I use the nurofen gel capsules which are kinder on the stomach.,

I agree with Woolly that you should ring the rheumy nurse for advice or go and see your GP who should be able to give you a prescription for pain killers depending on what you can take. I personally cannot take anything with morphine in so that lets out stuff such as codeine. I see you cannot have steroids for another reason - I was put on a steroid injection immediately which certainly brought down the inflammation but there are other ways of getting it under control.

don't wait another month to see someone whilst you are in such pain. It sounds as if you are suffering a general flare and that needs dealing with as quickly as possible.

Best wishes. LavendarLady x

allanah profile image
allanah

Hi Sharon

Yes your story sound like my story I did and do get pain, pins and needles particularly on a flare.I am currently experiencing the same haphazard approach as i have lots of lumps in my hands and feet and horrid pain and have waited 8 days so far for a rheumatology appointment.

Keep calling the helpline and get the help you really need. Axx

Hello Sharron - advice you've been given all sounds good to me. I had pins and needles everywhere in September and after my gp ruling out other stuff my consultant decided it was active RA. If its just in your hands I'm guessing its either because they are flaring or else could be caused by Carpal Tunnel which can be a secondary condition of RA. As others have said you need to get in touch with your rheumy team ASAP as its when we flare that damage can be done to joints so it needs addressing. Sulphasalazine is not as powerful as Methotrexate so you probably need another DMARD adding in as well or instead. Good luck getting help. Tilda x

helixhelix profile image
helixhelix

Sulpha can take a while to work, but even so you should be telling your rheumy team rather than waiting. I found that things really kicked off in my joints just after I was diagnosed, with hands, knees and feet. And the inflammation pressing on nerves made things tingle. It was as if having been told I had RA my body stopped pretending there was nothing wrong, or fighting it, and gave in. It was a horrid period. But once I got meds sorted things really picked up, and I'm now on 3 DMARDS which seems to be keeping it in check. So tell your team, and maybe they can tweak your meds to help more. Polly

earthwitch profile image
earthwitch

Only thing you can really do is try and get an earlier appointment - either by contacting rheumatologist, nurse, or getting your GP to push for being seen earlier.

FEARN2261 profile image
FEARN2261

Thanks everyone, I'm having blood taken tomorrow so I'll speak to the practice nurse then,& then ring the rheumy nurse. I've iced my hands,not really made any difference, got sausage fingers too now! Really appreciate all the advice,xx

in reply to FEARN2261

Hello Sharon, i am on sulpha as well, it is mild compared to the other dmards so it may not be strong enough for you. It has not helped much with me I have been on it for 6 months. I rang my rheumy nurse to ask if i could get a stronger dmard or return to metx and she has got me an earlier appointment with the consultant - end of January. i usually wake up with pins and needles in my hands and really just thought that it was part of ra. I do hope you get an appointment quickly and get something stronger. I also take naproxen Sl 500 mg which does take the edge of it.

in reply to FEARN2261

Don't want to indulge in amateur diagnostics so please take this as just an observation that you might or might not want to google or whatever - 'sausage digits' does sound like psoriatic arthritis, I think it is typical of that, although as I understand it it does sometimes happen with RA. But I think you should present your fingers for a thorough inspection when you see your Rheumy (hopefully soon.)

samjam profile image
samjam

I find that compression gloves help when my hands are sore. Also have a little mantra 'this time will pass' as once you get into the circle of pain the more you worry about the pain the worse the pain gets.

I have RA and 'sausge digits' and as well as not being able to wear my wedding ring have had to stop wearing a watch on my wrist.

I am also on Sulfasalazine, Mthx and Cimzia and must admit that something is working as although I still have little 'sausage digist, I do feel a lot better.

Victoria-NRAS profile image
Victoria-NRASPartnerModeratorNRAS

Hi Sharon

Might be worth speaking to your GP about help with things like painkillers and anti-inflammatories to help tide you over. The sulfasalazine can take a few weeks to work. Usually between 3-12 weeks, so controlling the symptoms in the meantime would help. You can also try non-drug therapies, like applying hot or cold packs to those swollen joints, which may help the swelling to go down, or at least give you some relief from the symptoms.

The following article on pain management may help:

nras.org.uk/about_rheumatoi...

Kind regards

Victoria

(NRAS Helpline)

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