Newly diagnosed, not sure...: I've had really painful... - NRAS

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Newly diagnosed, not sure...

Kriticat profile image
38 Replies

I've had really painful wrists and thumbs since August, which was initially diagnosed as de quervain's tenosynovitis but as I have autoimmune thyroiditis the doc wanted to check me for RA... The test came back negative but my anti-CCP was 15 (lab Range >5) so I was sent to a rheumatologist. She has prescribed something (can't read her writing!) for 2 months and told me to come back in 3 months. I have to say she didn't inspire confidence and so I'm still not totally convinced... the only joint/tendon problem I have is with my wrists and I'm pretty certain it is linked to my thyroid as I was undermedicated when it started.

Are there any other tests I can request before committing to taking the drugs? I'm still trying to control a yoyo thyroid and adrenal issues and I really don't want to put my system under any more pressure!

Thanks for any advice 🙏

38 Replies
MadBunny profile image
MadBunny

I'm not able to comment on the potential rheumatoid arthritis situation, but The NRAS website has useful information which might help you . They also have a helpline . Maybe you could possibly contact the rheumatology dept to get them to explain the meds in more detail?

Re the Quervains- have you been offered any help with it ? I was referred to a hand therapist by the rheumatologist ( I 've had RA15 yrs) who gave me a wrist and thumb splint to wear for 6 weeks, to rest the joint, especially if I was using my hand.I was also given a set of exercises to do. Both helped tremendously. Hope you can find the information you are seeking and wish you all the best.

Kriticat profile image
Kriticat in reply to MadBunny

Thanks for your reply. I don't know about any exercises I will look for some, but my wrists have been in splints for 6 weeks now and they are still not good. Tenosynovitis seems to be a result of repetitive strain, but I haven't really done anything to trigger that, and the fact that it is in both my wrists certainly makes me think it's something to do with autoimmune.

I will check out the information pages to see if there are any other tests I can do, but I have to say I noticed a lot of pains in my hips and knees during the night, so maybe it is RA after all! Or maybe I'm just paranoid now, having put lots of aches and pains down to the fact that I am over 60 and not as active as I should be! Now every twinge seems ominous.

CripLady profile image
CripLady in reply to Kriticat

Ask your Rheumatologist for a physio referral at your next appointment. They will check your joints thoroughly and give you exercises and appropriate splints.

Mmrr profile image
Mmrr

Like others I'm not able to say much about whether you have RA or not, but knowing what medication you have been prescribed is very important. I'm assuming that you cannot read the prescription? But the dispensing pharmacy should be able to ? Or you could ring your rheumatology department for clarification. Personally I would not take any medication that I did not know what it was for, the potential side effects and discussed it through with my rheumatologist.

Kriticat profile image
Kriticat in reply to Mmrr

I couldn't read the prescription... and neither could the 2 pharmacists I took it to today! Which doesn't help with my confidence in her at all! One guessed it might be myobloc, which is used to control osteoarthritis, but wouldn't dispense without confirmation, and of course she isn't available until Monday.

Mmrr profile image
Mmrr in reply to Kriticat

Unbelievable

Bails67 profile image
Bails67

X-rays and ultrasounds? They will show damage and any swelling even if it’s not visible from the outside.I understand CRP can be raised if you have infection? My daughters have been in the hundreds but she doesn’t have RA! I would want more tests before I committed to taking meds.

Kriticat profile image
Kriticat in reply to Bails67

Thanks, I've had xrays and they show no damage as yet, which is good news, would ultrasound show inflammation? CRP was tested and is within range

Bails67 profile image
Bails67 in reply to Kriticat

my ultra sounds showed inflammation in my wrists and ankles although on the outside they look normal!

AgedCrone profile image
AgedCrone

I see you are in Greece…do you have a rheumatology nurse who supports your doctor - who can  explain what the drugs you have been prescribed are used for?Unless you take them your rheumatologist’s diagnosis will be no further forward will it?  I don’t think you should blame age….RA is no respecter of our DOB …I’ve had this nasty disease for 20+ years - I’m a lot older than you,  have had lots of hiccups  & with the help of my rheumatologist I lead as good a life as my friends who have no health problems.Until you have a confirmed diagnosis moving forward will be difficult….so I hope you feel able to take what you have been prescribed….& that it throws some light on your wrist/thumb condition.

Kriticat profile image
Kriticat in reply to AgedCrone

Yes, I'm in Greece and thanks to brexit I have to go private so no access to a rheumatology nurse and the rheumatologist herself didn't speak great English (surprisingly, as most medical professionals I've seen here speak excellent English). I think I will have to find another one in a different city... I'm not blaming the RA on age, so much as thinking that aches and pains aren't unusual at my age, and I'm not sure it is RA... my thyroid is still unstable so I cant help thinking it might just be related to that.

smilelines profile image
smilelines

I wonder what she prescribed. she wants you on medicine for two months and then off for a month before you go back to see her so it doesn’t make sense for it to be a DMard. They take several months to work so she wouldn’t have you stop it. Maybe speak with your pharmacist to find out about the medication and if it will affect the thyroid situation.

Happy5 profile image
Happy5

All I can say is Doctors etc diagnose and prescribe whereas specialist nurses sort our you care plan. Are you able to contact one to find out what meds you're on and why? What the long term treatment is being aimed for? Have test for your thyroid been done & what do they think is happening?

When I was first diagnosed with RA consultant wasn't much good at explaining my future treatment. I got a f2f (at the time possible) with the RA nurse, she was great explaining and answering the armful of questions I'd got after reading all their leaflets.

Hope you get things resolved :)

Kriticat profile image
Kriticat

She doesn't have a specialist nurse, maybe the hospital does but I am in Greece and since brexit I don't have access to the national health system here, except for emergency. She's the only private rheumatologist in the local city, the next closest isn't accepting new patients until February . I think I will have to go even further...I'm under an endocrinologist for the thyroid issues, shedloads of tests in the last year... it's complicated as I have autoimmune antibodies for both hypothyroid and hyper thyroid, so getting the correct dosage is an ongoing adventure! She (the endo) doesn't think the tenosynovitis is related but there's a lot of 'evidence' on the internet that it might be, from medical professionals as well as sufferers.

medway-lady profile image
medway-lady

I have Hashimoto's disease and its one of the AI thyroid ones and did test positive for RA so understand why you've been tested. You unfortunately can have RA without testing positive . I've not had pain as you describe but did they do tests for T3 and T4 the NHS here usually does only T3 so I was underprescibed for about 6 months after a young and keen locum thought my numbers wer too high. My own GP when I spoke to him did both tests and in 24 hours came back with increasing the thyroxine by 100 mcg as I had a real problem. Its now on my record that T3 and T4 are to be tested and the stable dose I've been on for years unless I ask for it is not to be changed. So I'd ask has T3 and T4 been tested and go from there if not ask or insist they repeat the test doing both.

Kriticat profile image
Kriticat in reply to medway-lady

When I was in the UK I suspected thyroid problems but doc would only test TSH, when I saw an endocrinologist here she tested TSH, FT4 and FT3 and also antibodies, I have hashimoto's (hypo) too, but also Graves (hyper) so it's a delicate balancing act to get the right dose! I've been on an increased dose for 4 weeks now so not due for another test yet...

Kriticat profile image
Kriticat in reply to medway-lady

Are you taking any meds for RA even though you aren't experiencing pain?

medway-lady profile image
medway-lady in reply to Kriticat

Sorry I'm confused and I've read your previous posts and think that if you've been told that your TSH is fine for your age then really you need to talk to your doctor as we are not medically qualified and both over treating and under treating thyroid disease might be dangerous to your health. Hashimoto's disease can be fatal if untreated and Graves can mean the removal of the thyroid gland and then from hyper you become hypo . I think if your GP did the standard test TSH and if it was normal or within normal limits then it is a waiting time to see if the disease progresses and so did they prescribe any thyroid medications ? The doctor in Greece may be working to different limits for normal but I'd be cautious of taking any medication be it for thyroid disease or RA without knowing what I was taking anyway. I've been taking thyroxine for over 30 years and taking RA meds for over 20 years without any issues and it really is nothing to worry about. But I'd urge you to go back to the doctor to actually find out what you've been prescribed. I am wondering if it was a short course of sterioda as RA medications can take up to 3 months to work so a 2 month course is not really enough to make a difference but steroids will have an almost instant effect in the short term.

I should have said you could look up the NHS website and NRAS website for info about RA and it might help you to make up your mind about medications.

Kriticat profile image
Kriticat in reply to medway-lady

Thanks for your concern.I have been taking thyroid meds for almost a year and my TSH has been up and down... and so have my symptoms! I am monitoring them carefully with tests every 6 weeks, which is why I don't want to throw anything else into the mix unnecessarily, and I am not convinced that I also have RA. The GP said it was borderline, the rheumatologist didn't seem sure but wrote me a prescription anyway. If I definitely have RA then I would certainly want to take the right meds to ensure it doesn't progress, I just want to be absolutely sure before taking additional drugs. I will find out on Monday what she has prescribed and take it from there.

medway-lady profile image
medway-lady in reply to Kriticat

That sounds like a good plan, hopefully you'll not need to worry and I'm pANCA positive and people can be positive and have no active disease and also negative but have very active disease so its very difficult, on top of that one persons experience of RA can be very different to another. Best of luck and fingers crossed that you don't need any RA meds. It does take a while to get the thyroxine right because function can go up and down as the body fights a battle within itself, but of course the antibodies always win and then I believe it does get easier to control. These things are complicated but it does get easier with time.

Angels54 profile image
Angels54

Hi - I know what you saying, I also have thyroid problem , however , it’s stated in my wists and hands , then my feet , if they have done tests and diagnosed RA , you need to take tablets to stop disease spreading.👍

Kriticat profile image
Kriticat in reply to Angels54

Thanks, yes, I agree if diagnosis is definite but I really want to be sure...

LuzyCLL profile image
LuzyCLL

i have all the same symptoms, plus a high ANA 2650. These autoimmune disorders are hard to diagnose. After three years of lots of pain I am on 10 mgs methotrexate and 1 mg prednisone. After six weeks, I have to say it has made a big change in my energy level and all the painful sites. My hands and wrists still hurt. I have consulted four Rheumatologists, they all said I didn’t have RA or other type of disease. The new Dr said “ let’s treat the symptoms to see if you feel better”. Yes! I feel better.

Kriticat profile image
Kriticat

I'm so pleased you have finally got some results, it gives me hope. My ANA was below Range, my CRP was 0, and I was negative for RA, it was only the anti CCP that set alarm bells ringing. I don't know what she has prescribed, but the pharmacist said it wasn't any form of methotrexate, so I have to wait until next week... the pain is debilitating, but a couple of days is nothing compared to 3 years, you must have been desperate, I will try to be patient!

CripLady profile image
CripLady

grannygetsagrip.com/product...

This will help hip alignment to help you sleep better.

Kriticat profile image
Kriticat in reply to CripLady

Thanks, but it's my hands that I'm not sure what to do with when I sleep! I've used a bolster to align pelvis for years, and it works perfectly... but then I only sleep in one position. I imagine the knee pillow would be great for tossers and turners

CripLady profile image
CripLady in reply to Kriticat

It supports knees and hips, which you stated are painful.

For hands and wrists you need ‘resting splints’ which a physio can mould to your shape. Ask your Rheumatologist for a referral.

Kriticat profile image
Kriticat in reply to CripLady

Thanks, I have generic braces from amazon, but will ask about getting some tailor made ones.. although it sounds expensive! I'm glad to say the hips and knees haven't given me any more trouble so far, hoping it was just 4am paranoia...

CripLady profile image
CripLady in reply to Kriticat

If you are in the UK they are free. As you are in Greece you prob will pay but they shouldn’t be expensive. It’s moulded plastic which a physio can make for you at your appointment.

If you are buying splints Neo-G are the best.

KittyJ profile image
KittyJ in reply to Kriticat

have you tried compression gloves Kriticat I often wear them at night and find they help.

Kriticat profile image
Kriticat in reply to KittyJ

I was just wondering about them, I might add them to my Xmas list!

CripLady profile image
CripLady in reply to Kriticat

Good plan. They work really well and are easy to sleep in.

Rhpos profile image
Rhpos

ccp antibody is found in 75% of people with RA but almost never in people without RA x

Kriticat profile image
Kriticat in reply to Rhpos

Thanks, that's exactly what I wanted to know, so it's almost certain that I have it. I wonder why the rheumatologist didn't tell me that! I will definitely take whatever drugs are necessary to stop it progressing.

Hannah-NRAS profile image
Hannah-NRASPartner

HI Kriticat,

You may find this area of our website helpful: nras.org.uk/resource/diagno...

I hope you find this information useful and wish you all the best. Should you require any additional information or support please contact our helpline on 0800 298 7650 (Mon-Fri, 9.30am-4.30pm) or email us at helpline@nras.org.uk

Kind regards,

Hannah

NRAS Information and Support Coordinator

Kriticat profile image
Kriticat in reply to Hannah-NRAS

Thanks, I tried to call the helpline but I'm abroad and it doesn't seem to work from my UK mobile. Is there another number? I don't mind paying call charges

Hannah-NRAS profile image
Hannah-NRASPartner in reply to Kriticat

Where is it you're based? I will have to check with our office manager whether it's possible :)

Best wishes,

Hannah

Kriticat profile image
Kriticat

That would be great, I'm in Greece at the moment, but have a UK mobile phone

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