Newly Diagnosed

[Jacki08]

Hi-- I was diagnosed with RA and severe carple tunnel in both hands on Friday. Felt quite relieved to finally find out what was causing the horrid symptoms I have had for the past 4 years. I was given a steroid injection on Friday, andwas wondering if anyone knows how long it will take to kick in. Thanks.

[nomoreheels]

Welcome Jacki08. That's a long time from symptoms to diagnosis. I hope you start proper treatment soon! Steroid injections can differ in how long they take to have effect but generally you should feel some relief within a couple of days.

I've had in carpal tunnel release in one & waiting until my symptoms worsen to have my other fixed. It's a small op done under a local & pretty short recovery time & though I've had problems in the same hand since. I've been assured it's not related to CT & had a steroid injection which has helped though a little op may be necessary if it's not long lived.

Hope your jab kicks in soon but if it doesn't don't suffer, contact your Rheumy team to let them know.

[Jacki08 in reply to nomoreheels]

Thanks' nomoreheels'- I hope I can keep my sense of humour in this scary period. Don't know which bits I am more scared of-- I'm a self employed chiropodist so need my hands to pay my way! Ive been reading on here about itchy skin-- i also suffer from that-- but along with all the symptoms that I went to my GP with, they were all blamed on the menopause! ! Do you know if the skin problem is common in RA ?

[nomoreheels in reply to Jacki08]

"It's your age, dearie", is that what you got lol? I'm menopausal too (not on HRT by choice) & no rash so far!! Seriously though, quite a few RD meds have rash/itching as side effects from common to unusual degrees so have a check of your patient info leaflet as it depends on the severity. If it's listed as a common one try an antihistamine cream or contact your Rheumy if you recognise it as less common as anything unusual should really be reported, particularly when newly diagnosed & just started a new med.

Have you had a nerve conduction test yet to determine if your CT is severe or does your Rheumy think the steroid injection will solve it pro tem? I ask as I had my op in Jan last year & had RD for over 4 years & the symptoms started a month before one of my 3 monthly appointments so was put on the list for an op quickly. Mine had become severe by the time I had my NCT a few weeks later so my op was brought forward. At the time I was on NSAIDs & oral steroids , still am, & my inflammation was otherwise under control elsewhere. It's possible that your CT problems will calm down once the jab kicks in & your meds start working on your inflammation, so don't worry too much just yet. I could do with a good Chiropodist lol!!

[Hidden in reply to Jacki08]

Yes I have itchy skin - had it on and off all my life - I think allergies and hormones i.e. adolescence/childbearing/ menopause and autoimmune stuff are all very closely related. My favourite medic is my podiatrist - he seems to know more than anyone including my rheumy and is very sympathetic. Hope you can keep going and your hands improve with the RA drugs as mine have done.

[orchidcass77]

I was diagnosed with ra in may but have had carpal tunnel for 17 years. I had my right carpal tunnel surgery 4 years ago and due to being unwell ever since with hashimotos/hypothyroidism diagnosed last June, I have been unable to have the left carpal tunnel surgery. The ra has now took over in my right hand so both hands are still virtually useless! I've had a steroid injection (non-topical) at the beginning of my ra diagnosis. It helped almost immediately though only lasted a week. Ever since I've been on oral steroids, which definitely helps with the swelling. Being on levo for my thyroid means I cannot take other antiinflammatory drugs such as ibuprofen/naproxen so I'm grateful of the steroids as ra is ravaging my body rapidly. If you're not feeling much as yet from the injection you probably wont, I should think your rheumy will try oral steroids next when you see them. Good luck. Btw the operation for carpal tunnel will be offered. Its wonderful being relieved from the awful symptoms! Surgery is easy but be warned the recovery can be difficult; I'm a single mother so I found the weeks after torture! However once healed its amazing to be able to use your hand again...I hate that mines now crippled with RA. I don't know if its worth having the left hand carpal tunnel surgery if it too will be overtaken by RA!

[Jacki08 in reply to orchidcass77]

Thanks for your reply. Im still not sure whether the carple tunnel may go away if the RA is treated . I have an app with meds nurse in 3 weeks and will hopefully be told more then. I'm more scared of the whole thing at the moment- probably take a while to get my head round it all .

[Hidden in reply to orchidcass77]

Orchidcass77 - I'm intrigued that you say you can't take anti-inflammatories because you are on Levothyroxine - never heard that before. I have been on both many times now for quite long periods of time. Did your doctor tell you this?

[orchidcass77 in reply to Hidden]

I read it in the information leaflet for levo. When talking to gp about meds for ra he agreed that antiinflammatory meds are out and my rheumy also has never allowed me them for same reason. We also can't mix aspirin with levo. I also have to take my calcium and folic acid in the evening as opposed to morning when taking levo as they combat the effects of levo... Along with a long list of things we can't have at same time x

[Hidden in reply to orchidcass77]

Heck I have been on Levo for at least 12 years and many months on anti inflams while waiting for diagnosis and often during flares. GP prescribes Naproxen often for me as well as 100mcg Levo. Could this explain why my FT4 is low in normal range always I wonder?

I knew about Calcium (on AdCal D3 prescription) but only rather late in the day from TUK - GP never mentioned and rheumy has never referred to my hypothyroidism at all although they know I take Levo. Starting to wonder if I've been on a different planet to yours?! I thought the main thing about Levo is that it is just replacing the thyroid hormone our bodies aren't making as our thyroid is dying/ shrinking?

I have never given this med any thought really although it used to get me my prescriptions free for steroid drugs for my eczema - reason being it is replacing something our bodies are failing to produce naturally - same as diabetic meds. In Scotland so prescriptions now free anyway. I know we should try and take it early morning or nighttime right away from food and vitamin supplements but even that I've learnt from TUK HU and here. Also had myself privately tested for thyroid antibodies and mine was high - hence I have Hashimoto's. Told GP and he just said that was a waste of my money - could have told me it was autoimmune if I had asked. Beam me up Scottie!

[orchidcass77 in reply to Hidden]

Oh my days! Bless you. Its probably because you're thyroid issue is so long running. Its a relatively new phenomenon and many doctors still are too old school but my gp was great when u was diagnosed with hashimotos last year. He said gp's only learn the basics in endocrine medicine and as I had previously proved to be an "expert patient" (in fact I'd only just been through surgery in which I nearly died because they hadn't listen to me!) He sent me home, very poorly, telling me to learn everything I could about the thyroid and levo...so I did. Previously I confess my only knowledge about the thyroid was that it made you fat! Lol

[Hidden in reply to orchidcass77]

Well Levo made absolutely no odds to me at all as far as I could tell - once the practice nurse phoned and said that my thyroid bloods had come back totally out of whack and was I feeling awful? I said same as always am - overweight and stupidly tired but had been that since first son was born! My dose was raised to 175mcg - not a bean of difference did it seem to make.

I have learnt a lot about immunology now and know that med students are being made to do several modules on this subject at least now as

part of their training.

If you want to educate me about the thyroid (and others have tried but I'm a bit discslculaic about all the numbers) by PM - then I'm happy to tell you all I've learned about RA, Lupus, Sjogrens, Vasculitis and Raynaud's avid Scleroderma to date.

You may already know more than me on these of course. I do need an expert thyroid friend but when I go on Thyroid UK HU I get intimidated by all the knowledgeable banter, naturopathy and self medication that goes on there - also so many are fiercely anti GP and I'm rather fond of mine even if he is a bit old school. (Same age as me exactly - 51!) x

[Beaches2 in reply to orchidcass77]

Hi

I am on levo for thyroid too and taken loads of anti infl since diagnosis 9 months ago. Nothing has ever been said about the 2 not mixing either by gp or rheumy......I guess I will have to ask one of them at my next appt though to be honest I feel they think thyroid issues are pretty boring.......I haven't actually seen anyone specifically about my thyroid since around diagnosis......15 odd years ago......as long as blood tests are within the ranges I just carry on. Got me wondering now! X

[orchidcass77 in reply to Beaches2]

Lol I'm always happy to help. I do think its a good idea for any long term thyroid patients to go back in for updates and checks. Its outstanding how much can be caused by poor thyroid function! Bless you twitchytoes. .you really do have it rough huh? I wish you both well xx

[Gill-NRAS]

Dear Jackio8,

I have no idea where you are located and therefore this may not be of any use to you but here are the details of a pilot that we are running here in Maidehead, Berkshire for newly diagnosed:

Pilot of the New2RA induction session

Are you Newly Diagnosed?

NRAS is looking at rolling out a new service called New2RA and it will be a 2 hour induction session for people newly diagnosed with RA. It is intended to be an informative and interactive session to empower people to take control of their disease and feel more confident about starting their RA journey. This is a new initiative and we are looking for NRAS contacts to trial the session for us to help fine tune its content and presentation.

The date for the pilot of the New2RA induction session is Wednesday 8th October from 1:00pm to 3:30pm at the NRAS office in Maidenhead, Berkshire.

A sandwich lunch for all those who attend will be provided at 1:00pm with the session starting at 1:30pm.

We are looking for a minimum of 10-12 people, ideally newly diagnosed or diagnosed within the last 2 years.

Would you be able to help? If so, we would love to hear from you, please call 01628 823 524 and ask for Kim or Gill or alternatively you can email [e-mail].

We look forward to hearing from you!

Kim & Gill

NRAS Volunteer Network

[Jacki08]

Thanks Gill-- unfortunately I live up North in Lancashire otherwise that would have been lovely . Bit too far to travel.

Thanks for reply though ..

[orchidcass77]

Can help any time between immediately and a week or two, can last between a week and 3 months