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Rheumatoid arthritis diagnosis: What kind of tests did you undergo?

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Rheumatoid arthritis diagnosis: What kind of tests did you undergo?

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YorkshireJayne

27/01/2022 at 08:55

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YorkshireJayne

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I have lived with what I now know is RA for over 40 years; it has been fobbed off as osteoarthritis (at the age of 29) because my RH factor wasn't high and never has been. I have been told that it's good old fibromyalgia, when I know that it isn't and all kinds of medicines have been thrown at me, namely opioids and anti-inflammatories! The latter has damaged my stomach.

So, when my daughter tested positive for the HLA-B27 gene last month, I decided to ask my GP if I could have the blood test to determine whether she got that from me... A week later we found out that she did indeed get it from me, when my results came back as positive. I know that you can have the gene and not have autoimmune problems, but given that I have had joint, spinal and general body pain since I was young (4 or 5 initially) I'd say it was a safe bet that I do actually have RA or Ankylosing Spondylitis, or some other inflammatory disease.

So yesterday I had yet another blood test for my RH levels (They don't have to be raised to have autoimmune problems) before I can be referred to a rheumatologist. It's an absolute minefield is trying to get answers in the NHS, being referred to a specialist takes a GP, triage in the field and tests, then and only then, if triage deems it necessary will you be referred on. My GP has agreed to refer me directly to a specialist though, given the amount of time I have been struggling and that the gene indicates I'm more susceptible to those conditions.

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Courtney_J

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31/01/2022 at 19:48

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Courtney_J

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Hello YorkshireJayne, thank you for continuing to share your journey to diagnosis with us! I'll be keeping my fingers crossed for you that you'll get in to see a specialist quickly!

Has anyone else undergone testing to diagnose your RA? How long did it take? What kind of tests did you do? Did it take a long time for you to get a diagnosis?

@Wsnixw @suemtalktalk.net @Amanda23 @Kodimo @GILL18 @Henderson1 @Diana55 @Simsimmer38 @sazzle @Shedriving @djson280 @khicks @GrannyCarson @Anitha @Sianandco @1961Cheryl @newbie @NannyJo @Marjing

Take care,

Courtney

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Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-01-31 19:48:44

Amanda23

31/01/2022 at 19:52

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Last activity on 10/07/2024 at 18:33

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I had to go privately and pay to get my diagnosis. However, I have now, after 3 months, been transferred to the NHS.

Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-01-31 19:52:58

Diana55

31/01/2022 at 22:29

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I too saw a consultant privately and had my initial tests and scans done privately... I had a severe flare up when I saw the consultant for the results and was diagnosed with Palindromic rheumatoid arthritis.

I was then referred to the NHS Rheumatology clinic at my local hospital and have been on Methotrexate tablets for 6 months. This clinic regularly sees me & checks my bloods etc and has a very good enquiry/problems phone line if I need it.

Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-01-31 22:29:10

YorkshireJayne

02/02/2022 at 10:00

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YorkshireJayne

Last activity on 17/07/2024 at 07:17

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@Amanda23 Believe me, if I could afford to go private I would! But I can't, so it's the good old NHS for me.

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Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-02-02 10:00:07

YorkshireJayne

02/02/2022 at 10:01

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If only I could have afforded to go see someone private, I would have, long ago @Diana55 Sadly, I can't, so it's the good old NHS for me... if my daughter hadn't tested positive for the gene, I'd still be struggling on, battling to get answers.

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Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-02-02 10:01:35

Amanda23

02/02/2022 at 11:01

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I couldn't really afford it, but as I am still working I could just about manage.

The NHS have been great. I had to come off Methatrexate which was a shame as my flares had stopped and I felt fine. It was my liver that didn't like it!

I was without any meds for 4 weeks and joints were beginning to ache/tingle and I was feeling tired again. They have just started me on Sulfasalazine so fingers crossed.

Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-02-02 11:01:34

PollyP

02/02/2022 at 11:29

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@YorkshireJayne Oh my, I'm sorry it's been such a long road for you to get a diagnosis! I guess I was lucky, my GP had me do tests straight away and then after the results pointed to RA, he referred me to my rheumatologist quickly as well. It took a bit to get on his appointment books, but I got there in the end. Fingers crossed for you that it goes quickly now that your GP is on board! one of my fallback techniques when dealing with the NHS is phoning and phoning until I get what I want/need, especially when it comes to appointments. Best of luck!

Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-02-02 11:29:40

Diana55

02/02/2022 at 11:46

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@YorkshireJayne

Find out if your NHS hospital has a special Rheumatology clinic, as ask your GP to refer you to them....good luck.

Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-02-02 11:46:25

YorkshireJayne

03/02/2022 at 09:24

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@Amanda23 It's ridiculous that we even have to contemplate getting private diagnoses isn't it? Both my daughter and I have struggled for decades, in pain, without answers or a name for the conditions we have, yet a simple gene/blood test and scans could have got the answers we need.

That's just it isn't it? Give a medication to counteract symptoms and it affects other parts of your body. Some of the painkillers and NSAID meds have caused other health problems, so I've had to stop them, that starts up symptoms again. It's a vicious circle of pain, treatment, side effects; our friend is on biologics for her AS and even those have side effects. Fingers crossed your new ends work quickly now!

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Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-02-03 09:24:57

YorkshireJayne

03/02/2022 at 09:34

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YorkshireJayne

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@PollyP Thank you! My GP back in the early 90s did bloods and because my RH levels weren't raised, wrote it off as osteoarthritis, I was 30! Each time both my daughter and I have had bloods taken, the RH level has never been higher than 15 (once my daughter's was 42, which got her referred to a rheumatologist, who told her it was in her head because her levels had then dropped!), it has always been borderline. Since, we have researched and doubly researched, we now know that the RH levels don't have to be raised to get a diagnosis, it's best done by scans and scans with dye. We have pushed and pushed for appointments and referrals, and each time come up against the triage system until this last time when my daughter finally got a doctor in that system, who knew about autoimmune conditions. The daft thing is that we both suffer with other autoimmune conditions like allergies, asthma and eczema, you'd think they would connect the dots!

I hate ringing up to ask about appointments, it feels like I'm being a pain in the backside. But I did ring to see if my daughter was on the list for the specialist she was referred to last November (last week!). Th girl I spoke to was wonderful and assured me that she had been accepted onto the list for the top professor and specialist in autoimmune conditions (he set up Versus Arthritis). It could be summer before she's seen, but at least we know someone is finally listening. When my GP agreed to do the gene test and it came back positive, I asked to be seen by the same professor, she said she would refer me, but only after doing an RH blood test! So here I am waiting for that result a week later and I know exactly what will happen...

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Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-02-03 09:34:34

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