Hi I am new: I was Diagnosed Thursday just gone. it was... - NRAS

NRAS
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Hi I am new

VeronicaF
VeronicaF

I was Diagnosed Thursday just gone.

it was all very quick, well its been a long journey, its a long story sorry--

years ago I had problems waited 2 yrs to see a rheumatologist who told me it was all in my head my symptoms and advised anti depress---, but said he wanted me to have a blood test before I left.

that was that but then a week later had a letter saying go to the doctors urgently, so I went worried but they said the blood test just showed how much pain I was in and they the GPs Diagnosed fibromyalgia, so for years been ringing doctors off and on over the years to be told there was nothing they could do to help me, other than rest and join a support group.

So to me I got used to being in pain and thinking there was no point going to the doctors.

my pain in my shoulders were bad plus I was very stiff in the mornings

Anyway in may my pain spread to my left Jaw my foot and my fingers started to have these funny lumps on.

I looked up on my computer and thought because we had been eating a lot of red meat it was gout, it got worse and worse and everyday I thought is there any point going, in end I did, that was May and saw a Locum GP he sent me for blood tests, I rang for results they said the inflammation was too high gave me tablets naproxen, they made me depressed, so they changed them to ibuprofen and see how I was in a month, I rang to say still the same after the month.

so they said they ref to rheumatologist, I saw him a week gone Monday and he repeated and did more blood tests, xrays and gave me booklets about the 3 drugs methotrexate, Hydroxychloroquine, Sulfasalazine, I had a phone call from a nurse for him to do a a scan on my fingers and toes this Thursday just gone, he then told me it was 100 percent RA Arthritis, I told him I wanted to start with Sulfasalazine first, so I was sent for more blood test and to be repeated in two weeks and a bottle of those pills

I am going to start them tomorrow but I am a bit scared.

sorry this is very long, long winded

12 Replies
oldestnewest

Hi Veronica and welcome!

My word, what an uphill struggle you have been going through!

I had a similar experience also two years before I was diagnosed with RA.

One morning I woke up and was in agony with my right shoulder. I couldn't lift anything, put clothes on etc. Was at GP numerous times given various painkillers etc, sent to orthopaedic clinic, physio ( many times) and put on anti depressants! I honestly feel they thought I was imagining and/or exaggerating just how painful it was. I was diagnosed with a rotator cuff tear that proved to be incorrect. A frozen shoulder which proved to be incorrect. I was given a high level of cortisone into my shoulder that caused a reaction to my adrenal glands and ended up admitted to the endocrine ward for 10 days with seriously low blood sugar. Apparently the cortisone affected the production of cortisol and that was before the news of RA! So I empathize with you.

Blood tests for RA were not taken until my fore finger and wrist swelled up a lot! I was then taken in again to hospital where I first was told that my bloods showed I had Rheumatoid. The orthopedic consultant apologized that the red flag to check my bloods wasn't done. My situation and others on here may ease you in that your not alone with the painful journey physically and emotionally with this condition. I was started on hydroxychloroquine and methotrexate followed my sulphasalazine and lefludomide.I was fine with the hydroxy but couldn't stomach the others. That is not to say you won't. Many have been successful with these DMARDS.

I am glad you are now under the care of a Rheumatologist and I am sure they will look after you regards monitoring and regular blood tests, scans etc.

They will likely not want to speak of your pain last two years and encourage you to think of the present time. Easy to say not easy for us to forget!

All the best - keep in touch

Suzie x

VeronicaF
VeronicaF
in reply to Shalf

Thank you Suzie x

Sorry to hear how you have suffered it dos not seem right what you have gone through waiting being told nothing wrong what is wrong with some doctors I started on sulfrazine but they made me ill not appetite nausea tired so they took me off them been on methotrexate now 13 weeks fine no side effects YET but also on steroids for short term I hate this illness it takes so long to find the medication that suits every individual WHY ??? But we’re all in the same boat stay positive it’s ### hard at times I no tc big hug 🤗

VeronicaF
VeronicaF
in reply to Elswick

Thank you Elswick

Hello and welcome! This is a good place for support and likeminded people.

I had many years of misdiagnosis as well, and surgeries before I saw my awesome rheumatologist.

She diagnosed ra and fibromyalgia and I am now on Sulfasalazine and methotrexate along w various pain/and other things.

Ice is my best friend and lots of sleep and above all: acceptance.

Good luck and stay in touch. 👍🏻❤️👍🏻❤️

Following an episode of sore wrists over 20 years ago I was told that bloods showed I had the rheumatoid factor and to "go and live my life". Over the years I've been told I had carpal tunnel and been dismissed and not believed. I was unwell over Christmas 2015 and didn't seem able to 'pick up' after. Feeling fluey for months until my wrists and hands began to hurt and swell until, finally, I got the diagnosis in November 2016. Now on Methotrexate I get few side effects and it's not too bad. I tried sulphasalazine and hydroxy which unfortunately didn't suit me although others thrive on them. Everything seems to take so long with our disease so patience is a virtue worth practicing. Sorry for the long post.

J

Similar story. I chose methotrexate. Hope we both have success.

Hello Veronica

I’m sorry to hear the troubled times you’ve been through. It’s very scary at first being diagnosed but I can tell you that Hydroxychloroquine & Methotrexate have worked well for me. I’ve not tried the other Dmards. I had to come off Hydroxychloroquine though as it brought me out in rashes. MTX has worked well and I take Naproxen occasionally or sometimes now Brufen Retard (slow release Ibuprofen)

The sooner you get on Dmards the sooner you are protected from joint damage.

I play tennis several times a week so I’m so grateful the Dmards have worked so well for me as I was having excruciating flare ups with my Palindromic RA.

I do also take Opti-Turmeric and Starflower capsules, also Omega 3.

I wish you all the best.

Pat

I have been on sulfasalazine and hydroxycholoquine for about 5 years now with no problems. Was on methotrexate but stopped about 2 yes ago as it was making liver level escalate but other than that I was fine. Whilst being on these my inflammation levels have been good with very rare flare ups.

Hidden
Hidden

Hi Veronica, Sulphasalazine was the first DMARD I had. Wish I could go back on it again. After struggling to walk and coping with bunches of bananas instead of hands, 2-3 weeks later I was walking normally, and had hands once again. From what I remember the dose was increased gradually and I had no bad effects until the 4th tablet was added and I had mild nausea. But I perservered with 3 tablets daily for a couple of months, then tried 4 dail. BINGO! All was well, and I never looked back. My consultant emigrated, and his replacement forgot about me, so I was in limbo. My GP stopped all my drus for some reason, then re-referred me and I was started on MTX. + Leflunomide. But I'm thinking of asking to go back to Sulphasalazine. All the best.

Oh thank you everyone you have all given me so much hope on life and the drug working, thank you!! xx

I can, feel your pain!!

Don't be frightend at least they have sorted this know..

My husband is on the same mediation.

He has RA, since he was 27.

Always worked, he feels this helps him, to focuse on something orther than RA.

Once stable after a flare up, he is back at work.

Plus man pride,

be, proactive & make plans. Don't let this take over your life, be strong although, crumbling in pain.

Hospitals - Gps:

Know, I always take some one, who will support me to meeting, especially some one, dare I say it, argumentative. We attend each appointments as a memory team. Lol.

Sadley my husband was told something very simular, about me.

For 10 years I srtruggled, caried on at work full time. (Education)

Finally diagnosed at 35.

Behcets.

I am 62 know, in my view the neglect, of the medical sytem controled my life.

When in constant incontrollable pain, I was seen as a hypochondriac.

Admitted at time to hospital, but felt like, I was an individual wasting their time.

I'm so pleased, for you, finally been diagnosed.

In truth, to me that was a relief, I was not making all this up.

One doubts them selves at times?

I was not shock, on diagnosis, I had Behcets, just relief. Lol

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