Feeling Positive

I haven't written on here for ages - however, I have been keeping on the sidelines reading about everyones trials and tribulations.

I haven't been that good for the last few months with constant pain in what seems every possible small joint in my body and struggling with taking methotexate. In the end I had to sop it altogether as constant oral thrush and tongue swelling along with sickness and stomach upset! So as I'm sure you can all imagine feeling quite low about the whole situation.

Yesterday though I attended my rheumy clinic and saw a wonderful doctor.

She took time to explain things to me - of which she has now diagnosed psoriatic arthritis, amongst other symptoms, due to my toe nails discolouring, ridging and now starting to lift from nail bed (however, no rash at the moment!).

She also explained that although I'm in terrible pain, why I do not have an awful lot of visible swelling. This is apparantly because the tendons / ligaments are being attacked at the point where they attach to the bone. Hence the swelling remains more internal within the the tissue sheath than showing externally. This she demonstrated by using ultra sound that showed the internal swelling as red on the monitor of which I had in shoulders, elbows, knees and ankles. But have discovered through experience can move about on a daily basis !

I came away from appointment with new meds, being leflunomide (would love to hear others experience with this one) and having had one of the general all over steriod injections.

Seeing an understanding doctor who genuinly appears to care makes all the difference. I came away feeling a little more positive that in time the pain will be under control, meds will not cause intolerable side effects and the future can look positive again.

Back to see the same doctor in 6 weeks, so again great as last appointment gap was 4 months which in my opinion is much too long for any inflammatory arthritis condition as so much can happen in that period of time.

Would love to hear others experiences with psoriatic arthritis especially if you haven't as yet got psoriasis like me.

However, hugs to all and thinking about everyone who suffers from inflammatory arthritis.

XXX

7 Replies

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  • Yes you are right 4 months is to long, i waited 10 weeks to see a Rheumy and it felt like a lifetime, i also had a great experience which made the waiting worthwhile,

    I'm really glad that things up looking up for you,

    take Care Xx

  • A good result three to four months typical in my area unforyunately

  • Hi Sophie. It's great that you have a good rheumatologist who was obviously thorough and explained everything really clearly to you. Even better that you only have to wait for 6 weeks to see her again. I had to wait four months, then another four to be diagnosed with RA ("for now but things could change") and put on MTX and then over 8 months to see him again and since then six months to be seen by a different doctor so things are looking positive your end.

    Sorry that you've been diagnosed with PsA though. I have learned quite a lot about it because I too suffer exactly the kind of pain you describe - usually without swelling. I don't have the toenails you describe - although my back is too sore to double check I admit. And I don't have psoriasis but I do have the right history of skin problems and I do have the right blood markers for it and also have slightly pitted finger nails - but had always thought that was a history of acute eczema. I do think it's important to have the right diagnosis because although the treatments are the same the PsA has a different DAS and this affects which medications will work most effectively. I really hope the Leflunomide does the job and you feel better soon. Tilda xx

  • Hi Sophie, I am one of the ones here that has PsA, unfortunately I also have the skin complaint as well. Having said that with the meds prescribed for the PsA my skin has improved and the nails on both fingers and toes have improved, one toe which has always been very 'thick nailed' has completely uplifted and left me with a proper toe nail. I spoke to my GP about getting proper podiatry treatment, he arranged for me to visit the local hospital. They see me on a regular basis which is better than us trying to cut our nails when they crumbling or thick.

    Like you I was first on MTX along with Sulzaphine, then with Leflunomide. I am still taking Leflunomide alongside Embrel injections. When you get the right meds for your body you will feel so much better, so much you think it's gone away until you have to stop one med due to a blip on your bloods, then you realise that you are in medication remission. If you want to ask me anything on PsA, (I was diagnosed in 2010), then you can pm me and I will answer the best I can. Take care. xx

  • Good Morning all and especially Shirlthegirl,Summer, TildaT and Georje.

    Thankyou all for your comments they are very much appreciated. Georje, I may well take up your very kind suggestion of pm you as I'm now back to trying to find out as much as possible about PsA rather than rheumatoid and how the symptoms / treatments differ etc.

    TildaT - I too do not have the psoriasis skin condition but doctor did expalin that in some cases the arthritis can show before the skin complaint and up to as mcuh as 10 years! I have though suffered on and off with another skin complaint of lichen planus so don't know if this is connected in any way. Fingers crossed though that the psoriasis does come out, and Georje I really sympathise with you having to put up with the extra burden of the skin complaint also.

    Now a couple of days on from my steriod injection my pain has easied quite considerably - if only this was a long term solution!

    Hugs to all

  • Hi! I have had Psoriatic Arthritis for over 30 years. Before that was diagnosed, and treated, I had masssive patches of Psoriasis, from the age of 3. Methotrexate was the first drug, did wonders to clear the Psoriasis lesions. Leflunomide is exellent, I really saw the difference when it was added to my regimen. No side effects. i am now also taking injections, once a month, of an anti-tnf, Simponi. I know I am as good as I am likely to get. Which is fine, I can do everything I need to do. I live alone, do all my own cooking, cleaning, laundry and gardening in the Spring and Summer.

    I wish you well, as you progress through the therapies, be assured, it gets better! Patience is necessary, give drugs time to work. Loret xxx

  • Hi Sophie,Glad you posted some very good news. I wish I lived in your area. I have PsA,I also had Ps. for 30 years ( Doublebase has just about cleared it.)Saw Mr Rhumy for 3years each appointment was six months apart and when I couldn't tolerate Methotrexate he signed my off his books.

    From your blog I have learnt stuff I was never told.

    Good luck with your next visit.x

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