Help I'm new here and am feeling pretty overwhelmed 😱

Help I'm new here and am feeling pretty overwhelmed 😱

Hi I'm a 56 mental health nurse and was diagnosed with palindromic arthritis in July this year by a local rheumatologist. Really not convinced by this diagnosis as all my symptoms fit with RA. I subsequently got my anti ccp results back at 298 u/l so pretty definite it's rheumatoid arthritis. I saw the rheumatology nurse in October who agreed but still wrote that my diagnosis was 'palindromic inflammatory arthropathy' what does that even mean??

She also prescribed me methotrexate 10mgs increasing to 15mgs. I've been on 10mgs now 4 weeks and have been told that I can't have another prescription until my bloods are checked Thursdsy as some of my results were abnormal? I'm worrying now I won't be able to take it any more.

I've felt quite unwell since taking the mtx and off sick and really don't want to start all over again- any body else had a similar experience?

Sorry for the multiple questions

9 Replies

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  • 1. doesn't matter whether diagnosis is palindromic or RD, treatment is the same and one often develops into the other IME.

    2. it's often necessary to have frequent blood checks when first starting methotrexate.

    3. drink plenty (water!) with methotrexate, you may need to take folic acid daily except on the day of methotrexate (ask) have a look at previous posts on here about side effects of methotrexate they are very variable but often people feel worse before they feel better!

    4. look up the treatment page on the NRAS site - it gives you lots of info

  • hi just see your post are u taking mtx pills if so i was very sick on them then they put me on the injections which were so much better the pills are hard to tolerate i wish u good luck and that u get sorted soon x

  • Welcome to us here Barb. It's quite normal when starting treatment with DMARDs that you have fortnightly drug monitoring bloods for the first 6-8 weeks, for exactly the reason you've to have another before your next MTX script is issued. So don't worry, depending on which are abnormal & by how much you may still continue on MTX, your dose may be reduced or you may be asked to temporarily stop it though. Any side effects are often eased by increasing the days you take folic acid, just mention it to your Rheumy nurse & she should be able to ok it.

    I wouldn't worry at this stage what you've been diagnosed with, the treatment is the same & often is diagnosed as RD further down he line (some of us prefer to call RA Rheumatoid Disease, the Arthritis tag is quite misunderstood by Joe public!).

    Hope this helps & your repeat test comes back fine.

  • Hi Barb

    You look 35 in that photo...just great!

    I too was first diagnosed with Palindromic arthritis 17 years ago when I was a couple of years older than you..

    Apparently it is only described as full blown RA when blood tests show up certain factors are off the scale....I didn't ask for exact figures, but your rheumy will tell you. But I think every Rheumy has his own ideas of when it's "full blown"!

    Have you tried taking the Mtx at night, then Folic Acid 6 days a week? I had two weekly blood tests for about three months, then monthly, then every 3 months & lasted on Mtx with no probs apart from initial nausea for 7 years.

    I remember my Rheumy told me about 5 years after diagnosis i now had full blown RA......but I'm still plodding on....just started RTX...don't know how it will go yet as have only had first two infusions, did feel a bit nauseous, but I have high hopes it will suit me.

    I find not stressing about anything is a great help ....but I am lucky enough to be retired & don't have to stick to a time scale. When I'm having a flare I often think of people like you who need to. Especially as even now when quite a lot is known about RA I'm still told by " friends" that I take too much medication & that''s why I still have RA......I just agree & continue to take whatever meds are helping me. Sadly it's not an exact science...I do hope you can stay on Mtx....I forgot I had RA when I took it!

    Good Luck

    AC

  • That's good to hear and thank you for the compliment. I feel about 106. I can't call you Aged Crone though that's awful 😂! It's so good to hear how well you were on mtx and from all the other replies I've had 4 weeks off sick really is early days. I agree I wish I was retired most days but then I think I don't want my 35 year career as a nurse to end because it has to, another two years and as get my full pension

    Thank you

  • Just start planning for your retirement Barb........as 60 approaches time really does go faster, & there are so many things you can do,when you aren't tied to someone else's time table.

    Last year I visited my father's grave In a War Graves Cemetery in Italy...(.he died in1943 in WW2 not 1 - I'm not that aged!) Never thought I'd do that, but off I went & it was a lovely experience taking the train all over Italy.

    Despite having had this wretched malady for 17 years I STILL hope I might go into remission. My rheumy laughs at me & calls me his eternal optimist.

    Well it could happen!

    Right now I'm catching up,with my friends all over USA - either ranting or rejoicing over their election result! I hope to go over in January for the Inaugeration.....should be quite a party!

    But everything is last minute as I won't know how the RTX will be acting up!

    Take care & don't stress...go with the flow & all will come right....work will still be there when you feel up to it!

    A (youngish)C!

  • hello barb

    I have a diagnosis palindromic RD as well - as far as I can see it just means that affected joints are randomly affected, not bilaterally matching, and it comes and goes more dramatically. There is a 'Palindromic" website on which, amongst other stuff I found a very helpful and downloadable pamphlet aimed at explaining the disease to family etc, as it can sound a bit weird if you try to describe how it affects you. I found it reassuring that I wasn't the only one!

    treatment is the same - at the moment anyway - until more is discovered about the whole range of rheumatic disorders

    keep smiling

    janmary

  • Hello Barb, and welcome :-)

    I was diagnosed in June and there's a lot to take in at first - blood tests, xrays, plus getting your head around the diagnosis etc. I felt like a 'lab rat' for the first few months ;-)

    People are so helpful and knowledgeable here, so feel free to ask any questions. Someone will know the answer or point you in the right direction. xx

  • I had a similar diagnosis at the beginning of the year - initially palindromic, but amended to early non-erosive RA the following month when my blood results were in. I don't know what to make of it really, as the positive test results can show up many years before the actual RA, and sometimes the palindromic continues as just that, even with positive antibodies. And then, I know from other forums that there can be as much suffering with PR as there is with RA. When I first read about PR it sounded so benign I thought I couldn't possibly have that, whatever was afflicting me was something far more serious.

    As I was symptom-free at the time of diagnosis, I was given hydroxychloroquine (200mg). More recently I had sulphasalazine (2000mg) added. I haven't had a flare since last summer, but I ache somewhere or other most of the time, not particularly in my joints, but a more diffuse aching of muscles or tendons. I will be surprised (and very happy!) if the sulphasalazine alleviates this. I take a painkiller every third day, trying to feel good enough to tackle painting ceilings and cleaning windows, but unfortunately they don't seem to make a great deal of difference either. So, for the last few months, I have had to make do with going to work, while letting things slide at home.

    I still have another 14 years before retirement. I'd hang in there if I were you!

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