Psoriatic Arthritis

Hi my name is Clare. Sorry in advance this is going to be long! I'm a mum of 2 children (5yrs and 2yrs). I'm new to this site and really quite nervous about posting. I've read too much on the Internet that had put the fear into me and I've not openly spoken about what's happening to me outside of my family.

About a year ago I got a swollen little finger and went to the gp. He just said I'd strained it and it was a trauma arthritis it would go down in a couple of months. Despite telling him didn't recall hurting it or doing anything to strain it he insisted it wasn't anytjing to worry about. I wIted patiently but about a month or so later I got a swelling in my wrist and a slight pain in my feet. The doctors though I had a Mormons neuroma in my foot and said to try better foot wear. Not muchconcern for the wrist and again a possible strain. Then a few weeks later I got a sore shoulder and a tendon swelled up on my leg/knee area. This time a different GP sent me fur blood tests but these turned out normal - so no action required! I pushed as I was now struggling with stiffness and pain in my wrist and hand and shoulder so she referred me to the Rheumatologist. One GP tjought i had reactive arthritis do prescribed antibiotics - then almost immediately more things flared in my hands, a tendon and 2 more small joints. I was finding being active with my children stressful and distressing me. I pushed again for a sooner appointment with the Rheumy as it was now October and my appointment was for January - I got to see him in the November and he suggested Psoriatic Arthritis as a possible diagnosis. My bloods were all normal, I didn't and still don't have psoriasis only a slightly flakey scalp, and my nails were and are fine. I was confused and wasn't sure what this was at all. He told me not to Google but of course I did. I panicked! Everything I read was very depressing. I had a steroid injection in my wrist which settled it quickly. Everything actually seemed to settle. When I went back in December my Rheumatologist was pleased and said he'd see me in 4-5 months! I felt elated - maybe this was only temporary! But then 3 months later it crept back in a couple of fingers. I took ibuprofen but it slowly crept in and got worse. I managed to speak to Rheumatologist nurses (thankfully someone independently gave me the number - the hospital didn't). They were a comfort but it seemed ages to see the Rheumtologist. I finally got a cancelation and saw him in April this year. I was expecting methotrexate but he prescribed hydroxychloroquine. He said my bloods are totally normal with no raised inflammatory markers. Again I was sent away and to see him in 3 months. But 3 weeks later I was back in to see the nurses as things were just getting worse in my hands and feet. She's now given me a steroid injection so it's all settled again but I know it's just a mask. I've never read anyone only taking hydroxychloroquin and I'm worried they're just not taking me seriously cos they just keep saying my bloods are normal. I'm very confused as to why they're just not going for the aggressive treatment I keep hearing about cos I just keep worrying I'm going to be on this road for an unnecessarily longer journey than needs be! I still find it very hard to understand this disease as do many people write different things about it. I know everyone is different but I can't relax my mind and my childen really need their mum back. It's had a real impact in our family as no one an grasp it. My parents think it'll just ho away and my sister is just too busy . I think my partner is afraid of it but just says "what are you worrying about it's under control and you're on medication" but hediesbt get that the steroids will wear off and the hydroxychloroquin is likely to not work alone!!! Please be kind I'm really feeling isolated and alone. Thanks Cx

29 Replies

  • Apologies for some bad spelling or grammar - I was writing it in a rush on my phone! Hope it's readable! Cx

  • Hello Clare :) You're a few month behind me on a similar sort of journey... I have PsA too, diagnosed in Feb after a dx of more general 'inflammatory arthritis' in Nov and a few years of problems, most of which no one took seriously. My bloods were also normal, and have been throughout except for one random CRP result of 40 after treatment started. I was also prescribed hydroxy at first, but this provoked a flare of psoriasis in several places, so I was switched to methotrexate. Like you, my skin has never been much of a problem, and the occasional skin problem or 'rash' I have had has never been diagnosed as psoriasis, so the flare came as rather a shock. Apparently hydroxy can have this side effect for some people, so watch out for it.

    The good news is that, after starting MTX in Feb, I feel much, much better than I have done for several years. :) My pain has reduced by about 80% and most of my swelling has gone. (Oddly, it is only after it went that I realised I even *had* it in some places, including my face!) My tendons don't hurt any more, except very occasionally (eg in my fingers, if I've used my hands a lot). Other problems I had last year, including esp IBS symptoms and a bursa behind my knee, have gone completely. Other things like recurrent sore throats and eye inflammation are much better. My energy levels are higher. I qualified for PIP in Sept, just before diagnosis, and if this improvement continues, I'll soon need to tell them I don't think I do any more! It seems the drugs are *working*!

    It took some time - maybe 8-9 weeks before things improved - and I had to switch from mtx tablets to injections because the tablets made me nauseous (injections are not as scary as I expected, and they're strangely easy!) Bear in mind that if the hydroxy doesn't work for you, or doesn't work well enough, your rheumy will do something else...

    It is a scary time - I find the unknown difficult to deal with, and of course there's a lot of that when you have an uncontrolled or not-yet-controlled fluctuating condition. But you don't need to feel alone. Come here and post, ask questions, get worries off your chest, rant, whatever. :) Most of us know how scary and isolating it can be, and we've been there too, and you'll get a lot of support. :) We're all sorry you've had to join us, but now you're here, you're very welcome!

  • Hi Flow4

    Thank you so much for this! I'm in such a middle and I've read about the hydroxychloroquin making psoriasis worse which really frustrates me that they've even prescribed it! I don't want to find I get it on my skin because of a mis prescribed drug! Anyway it sounds really positive what you're saying and I pray I get there too! I have anxiety dreams a lot at night when I think I'm the exception and they'll not be able to treat me! But you've really reassured me thank you.

    I'm glad you've got your life back. I really want to be there too!

    I hope it all continues for you 😊


  • I had anxiety dreams too, Clare - it's such a worrying time.

    I think they try hydroxy first because if it works and you *don't* get any adverse reaction, it's a safer drug to be on long term - kinder on your liver - and you don't need to have regular blood tests while you're on it. So it's worth a try... As I said, if it doesn't work for you, the rheumy will try something else :) Good luck!

  • Unfortunately as you have already seen it does take some time to get sorted and even then the meds take up to 12 weeks to get into the system. All rheumy departments seem to have their own protocols regarding the order in which drugs are tried. Hydroxy is considered one of the milder ones (even so more than 200mg upsets my bloods) but it is a good base to start and if necessary other DMARD's can be added to it and nobody wants to take more medication than necessary. Sorry if this is insensitive but was anything mentioned during the appointment about whether you are looking at having more children as this can influence drug choice. Further info on drugs can be found on the NRAS website or arthritis research. It is very difficult to get others to understand this disease as 'you look normal' and the pain and swelling can be different from day to day. I don't think I understand it after 30 years!!

    I know it is hard with children but you soon find ways of getting the children to run while you sit. Just being with them is as important.

    Keep a record of what meds you have and how you feel for the future as this is a long term condition and over the years you forget what you have tried and how it affected you.

    Your reaction to the steroid injection proves there is a problem which should help at your next appointment. Farm

  • Thank you it's a great help to have supportive words rom those who have actually got experience. I feel like they're putting me through the usual route of meds but could possibly get there quicker if they went straight for what definitely works. Maybe I'm just naive. And of course there's always the issue of budgets or whatever. I just want to feel secure in how they're treating me. But I guess it's hard with a disease like this that is so variable between patients. But thank you for your reply! X

  • The problem is that there is no easy way to find out which is the best drug for you so it is trial and error.

  • Hi Kai

    Thank you for your kind words they mean a lot! Are you a sufferer yourself of inflammatory arthritis? I looked at the links you provided. I have looked a lot into diet with regards to helping with inflammation whilst waiting for appointments and referrals. I felt it was all I could do in the long gaps between. I have cut things out. Reduced other things. But it's a tricky area. I appreciate all insights and sides to stories. Your words are very kind and I hope too to get to a place where I have conquered and can get on with life as best as I can. I will listen to my practitioners though as well as keep myself healthy in other ways as best I can.

    Many thanks again kind lady.


  • There are a number of people on here who are just on hydroxy, very successfully, and have been for a number of years. So really it can be a sensible thing to try first (and costs about the same as MTX tablets so it's not a cost thing). And for some, the so called stronger drugs like MTX do absolutely nothing at all....... Many of us, me included, do get drug envy from time to time. As it's such a frustrating process going through the trial and error to see what works best for you. But believe that you'll get there, because you will.

    Anyway, it's sounds like you're doing the right thing by keeping in touch with the rheumy team and asking/pushing to get listened to. And if you only started hydroxy in April, it may still work as it can take several months.

    In advance of your next blood tests/appointments try to make sure you're weeks away from a steroid jab, and don't take any NSAIDs for a few days before so there's nothing masking the symptoms.

  • Thank you helixhelix that's really good to hear! Are you on hydroxychloroquin? Do you have psoriatic arthritis? It's such a worrying time. I was so apprehensive having the steroid jab too as if heard steroids can have a "rebound" effect making it all worse but the Rheumy nurse insisted it wouldn't but if it was worse then that would just be the progression of the disease which was masked by the steroids. But they felt in the short term, as I was struggling, it would be worth having just to bridge the gap before the hydroxychloroquin sets in. Anyway I appreciate your reassurance. It's just hearing so many different experiences it's very confusing on one hand but also reassuring in the sense there has to be something for everyone. One of my fears, as my inflammation and symptoms have been very slow developing by over a long period of time I've had sore small joints untreated, and I worry all this time waiting to see what works I'll end up with damage or something. They say nothing is yet damaged they haven't seen erosion in the ultra sounds. Anyway I guess I have to learn a lot of patience.

    Many thanks Cx

  • Hi Clare, it sounds like they're on the ball.

    I've been on hydroxy for nearly 4yrs now apart from two steroid injections that's all I take. My bloods are also 'normal'. My Rheumy treats my symptoms rather than the results. I to wanted a definite name for my illness but it took 3yrs & still they are unsure. Now I no longer think it matters as long as I'm getting the right treatment for me & I believe I am. Give the hydroxy a chance it works wonders for me with little side effects (skin sensitive if in direct sunshine). Did they tell you to get an eye test, very important, I get mine done every 9 months. Good luck.

  • Hi Caza,

    Thank you for your reply. It amazes me how different everyone's experiences are! I love to hear such positive stories it truly makes me very hopeful. This site had unlocked so much hope for me. I felt very in the dark yesterday morning and feel much more positive today. I really hope I can just get on with my life soon. I used to have a vision of being well and free ofsptoms by "X" amount of weeks. But now I know I have to look further than that and take each day as it comes. Thank you so much. I'm glad you are happy with your treatment. May it continue. I hope it works as well for me!


  • Take each day as it comes is a good thing to hang on to. One thing this disease teaches you is patience! Which has had a positive side effect for me as I was very hyper & impatient, and now I'm a much calmer, relaxed sort of person.

    I have RA, not PsA, and take hydroxy - but also methotrexate and Sulpha. It took about a year or so to get the right combination for me (sorry!) but I did get there in the end. And am now usually in remission. And am continually amazed at how much better I am. I had got to the point where I could hardly walk from the pain in my feet, and like you I was afraid of permanent damage. But it's ok now - in fact I've just come in from an 8 mile walk.

  • That's amazing!! So wonderful to hear!! I used to do a lot of yoga - in fact trained as a yoga instructor 10 years ago and had a short spell teaching in my early 30's. I co to ued to practice but in the last year have done very little due to the pain in shoulder/wrist or toes... Not all at once but it's one or the other playing up. I thought my enjoyment of tha was over - but hearing this maybe not!

    Thank you. I'll stay patient and positive. 😊


  • I do Pilates rather than yoga now as my joints struggle with the tension of some of the yoga positions. But whatever you do, it is important to do something! Don't push things when you have inflamed joints as they are sensitive to damage, but do at least do range of movements exercises and gentle stretches while you're waiting for things to get under control. Especially with looking after little ones I'm sure you're doing lots of lifting and so on, so a few stretches to ease the pressure on your hands and keep muscles toned are invaluable.

  • Sorry think I've pressed report by mistake

  • Hello Clare

    I started having the same symptoms to you about 3 years ago. My blood tests were normal and ultrasound scan showed slight erosion in my wrists, X-rays of my feet were normal....recent blood tests still normal, no further ultrasound/X-rays since 2013.

    I've been on Hydroxychloroquine 200mg daily until October 2015 when the dose was increased to 400mg on alternate days. I was also advised to take Vitamin D 2000 IU daily. As I have had lung issues, MTX was not first choice med.

    I was informed that I have sero-negative inflammatory arthritis last October. At the moment I have mainly good pain free days with mild stiffness in the mornings. I'm prescribed painkillers but only take them as required.

    I just want you to know that there's support here and I've gained useful information which weren't given at my hospital appointments.

    Sending you best wishes xxx

  • Hi KSee

    Thank you. It's really reassuring to hear from you that you have had a similar experience. I'm really happy to have received such wonderful feedback from so many nice people. I wasn't sure what to expect! I'm glad yours is being controlled and you're happy with it. I will certainly keep on this site and post my questions and journey. Thanks so much. I feel some hope now! 😊x

  • You're very welcome Clare.

    As Kai has suggested, yoga is good if you feel up to it. I've been practicing yoga for many years and when my symptoms and pain started, I had to have a break from it. It was a shock to me that from being a strong practioner I became a beginner again and even Child's Pose hurt!!!!

    Now I practice and take each day as it comes. Some days I feel strong and pain free, other days , I'm gentle with myself and don't let my ego tell me I should force myself to be where I was before RA.

    After each practice session I feel light, grounded and my daily stress is relieved...even for a short while, it feels great. I'm blessed to have great yoga teachers who are experienced to help me when I struggle. If you are worried about the yoga postures, yoga's breathing techniques are just as effective especially when you feel overwhelmed.

    Love & Light 🙏🏻

  • Oh I love this reply! Thank you so much! I will keep this in mind. I felt gutted to find myself struggling having been so flexible. But I'm glad to hear that not all is lost. Thank you. Cx

  • Oh Claire26, I'm sorry you are feeling so low. I just want to tell you that my husband only takes hydroxychloroquine for his RA. It seems to keep it under control for him.

    Take care hun


  • Thank you Sue! It's really good to hear your husband has his RA under control. It's reassuring too - so thank you very much for your post!


  • Hi Claire sorry I'm late to this, I had a very sudden and terrifying onset of multi joint symmetrical arthritis last May. I was in absolute agony and couldn't think straight. I am a nurse so thought I had Rha and went to my gp who gave me NSAIDS and did all the correct bloods I was devastated when they came back normal as I knew something was wrong, and they were thinking of trying another anti-inflammatory and nit referring to rheum. I burst into tears in Gps and begged for a referral as I was terrified I would lose my job. I actually staged a sit in waiting for my referral letter and took it personally to rheumatology to be told there would be a twelve week wait. This was now end of June. I was completely beside myself and emailed the rheum specialist nurse begging for a cancellation as I work in the trust (I felt very guilty but I was desperate ) and was seen end fof July.

    By now I suspected I had PsA as although I have no psoriasis my mum did. And PsA but not widespread and she was nearer 60 when it took hold. I was given steroid injection and started on mtx - ** Did you have any ultrasounds done on your hands and fingers? ** dip joint involvement cinched it for me.

    I have been on your roller coaster, prompt treatment with *some* improvement. I am now on MTX and hydroxy and needed a month course of steroids in October and have had steroid injections in my hips in Feb for trochenteric bursitis. I too was terrified to try hydroxy as I was worried it would trigger psoriasis but I love my hydroxy, I am sure it is the reason I don't have so much fatigue now. I was left on 17.5 mtx when I started hydroxy but my hands still swell a lot and ache from wrist into thumb if I do anything strenuous like hoover or garden, I have limited walking ability as ankles and tops of feet very painful (saw podiatrist and very stiff joints at base of big toe so getting insoles) so rheum nurse put me on 20mg mtx two weeks ago. To see her in two months.

    Of note: my highest ESR was 2 weeks ago, 17 and that's a year in and on 2 Dmards - it's common to have noreal inflammatory markers in PsA while obvious disease activity on USS - my highest crp 5.

    If you have PsA (and from your symptoms you have some inflammator arthritis , a good response to steroids being an indicstor) it needs rapid treatment just like rha and as we are less likely to respond to Dmards you only have to fail 2 to be eligible for biologic so you really want to get on something that works. Don't dismiss hydroxy but don't be shy of letting them know if you deteriorate. In PsA guidelines the Dmards are listed as sulphasalazine methotrexate and leflunomide and hydroxy isn't mentioned.

    I go to a big city rheum so maybe better informed and more equipment, my care has been patchy and I have lost considerable quality of life and function (my left wrist has very reduced range of movement) so even though I am on treatment I am not in remission. Keep pushing or ask to be referred to a bigger hospital or to be given ultrasounds of your hands.

    There is a ew small PsA community on here Psoriasis and beyond, but the people hear were my saviours guiding me encouraging me and giving me invaluable advice before diagnosis and since. Please inbox me if you ever need to talk

    Jackie xx

  • Hi Jackie

    Thanks for your message! Thanks for sharing your story - it's a really hard journey when trying to convince doctors things are bad when they don't see it. My GP's were not too great at being informed on these matters hence such a long time to be referred. However my US scans showed active inflammation the last time so they concluded it was an ongoing inflammatory issue - still not committing to a diagnosis but a possible psoriatic arthritis. It's the fact no one at all in my family has ever had any inflammatory arthritis or the psoriatic skin disorder that puzzles my family. My mum particularly seems to avoid excepting it (more than me!) and even my GP's keep saying "well the Rheumatoloist isn't committing to a diagnosis" which isn't helpful. Anyhow I am on treatment and at my next review (not till August) they will decide if I should be on methotrexate. So far they've not seen any erosion or damage apparently. It's the one thing I keep pestering about as it worries me how long these treatments take to kick in! Anyway thanks again I appreviated everyone's support on here.


  • Hi Clare

    Just reread my mail to you and it sounded rambling and as rushed as it was :)

    I was just getting up for work but really wanted to mail you - as the point of telling you my long exciting ( :p ) story was to show the parallels between your story and mine and the difference in management.

    I have had, in contrast to you, very prompt and on guideline treatment and 3 lots of steroids. Despite this i am still not in remission and worrying a lot about my future and ability to continue to work ( I love my job, and I need to work I live alone and support my mentally unstable adult son) so its not just my physical well being i am concerned about.

    The wait between appts is awful, and then you get 15 mins to pick which symptom to focus on and hope it isnt one they can blame on something else!

    I am also taking amitryptilline for foot pain at night - ask your GP for that it has really helped me.

    I worry you may be being undertreated - did they find any inflammation at your DIP joints?? The ones at your fingertips? That sealed my diagnosis (though they did move to MCTD for 3 months and freaked me out completely)

    Have you ever had inverse psoriasis? Redness in your umbilicus, groin or under breasts? and are all of your toenails completely normal? My little toes have hardly any nail at all - I am very lucky thats my only skin manifestation. Ask someone to look at all your toenails with a magnifying glass, look for any lifting or pitting.

    I am dreading having psoriasis too - I really hope it never comes.

    Where are you in UK?

  • Hi Jackie,

    I don't think I've had any signs you've spoken of above. My nails show no signs of pitting and I've not had inverse psoriasis. The only toe nail that's weird is one on a toe that I broke about 10 years ago and it grew back thicker that's all. My scalp is the area that's suspect - it's dry and flakey but I've had 2 Drs and a specialist say it's dermatitis (bad dandruff basically - which my mum has had time to time). there's no psoriasis or arthritis in our family on either side.


  • Welcome Clare,

    I can see you have had lots of replies. I hope you find this site helpful. Lots of knowledge here,

    Beverley (NRAS Helpline)

  • Hi Clare, my name's Clare too. Your story reminds me of my own story and how it began. Unfortunately it seems to me that unless you fit perfectly into a neat little diagnosis with all it's symptoms and requirements, the Medical teams find it hard to know what to do with you. I have Rheumatoid Arthritis but for the first ten years of me being under a Rheumatologist, I was just being treated for the various aches, pains and stiffness. It was only when my hands gave me so much trouble that I couldn't hold anything, that I has scans done which showed erosions in my fingers and wrists. Suddenly thankfully, everything I said was now being taken seriously. I too had very little blood work which told them anything. Even now I have certain bloods done with specific markers rather than the usual inflammatory ones, because my body doen't show inflammation like many others. (Always been a bit odd) After the scans I then started on Methotrexate which I've been taking every since. I really do know how distressing and frustrating it can be during this period, you feel very alone and feel no one believes you, that somehow it's all in your head. Methotrexate is usually given after other treatments have failed and I think it's possible there are still regualr anti inflammatory and analgesic medications which you could be started on, which would really help you. Methotrexate is for severe psoriasis and theumatoid arthritis. I can see why they haven't started it when for them there isn't an indication to do so. That doesn't mean that your condition won't eventually require treatment with something like Methotrexate. The relief from the steroid injections should give several months of relief, but some care needs to be taken over the number of times it's injected into a joint.

    I know it's very difficult, I was a young mum too, I had a full time active job, 3 kids under 8 and felt very down, my life changed so dramatically and it is very frightening. I think you become desparate for someone to take it all away or at the very least tell you what's happening and get it under some control. Patience and your GP are going to be your greatest allies, so it's important to try and develop a relationship with him/her as they will be your first port of call. If you are not already on some regular and moderately strong anti inflammatory medication like Naproxen for example and regular pain relief that's probably your first discussion with your GP. How are sleeping? There are some medications often used in conjunction with the above which enhance their effectiveness and significantly help with sleep, so this may be something you might want to consider.

    If things are being managed adequately it can sometimes make the idea of the lack of definite diagnosis a little easier to cope with. If your symptoms are going to be part of an ongoing condition, then it's pretty likely that other things will develop to help them to help you. I would continue to contact them as you have been when things don't improve and when new things develop.

    I really hope the support you're gettin here gives you a little more confidence and helps you realise this is pretty common and Medical staff will not act quickly until they have a clearer picture of what's happening to you which at the end of the day is safer for you than placing you on medications which aren't the greatest to be taking. I really wish you well and from my short experience of postin on here just once before, you'll get a great response from people here who are living with these things day after day.

    One thing last of all, make sure you can do all that's possible to maintain your general health, drink plenty of fluids, avoidsugary foods and increase your veg and fruit intake and slightly reduce meat. Have alook at some of the minerals and supplements available. Different people respond differently, but Glucosamine has worked well for me with swelling and stiffness, there are lots of things available, but you can do a lot by just adjusting your diet. This in iteself may help you feel you're taking back some conrol and sleep is vitally important.

  • Hi Clare

    Thank you for your message. I'm sorry to hear it took you so long to get a diagnosis. I hope you're at a better place now?! It's really hard to deal with. I was only taking ibuprifen (max dose ) before they put me in hydroxychloroquine. My GP wasn't forthcoming with many options for pain relief but I didn't know what to ask for and then they gave me the steroid injection which at the moment is helping. i take a lot of care about my diet in terms of eating plenty of fruit and veg. I never ate much meat anyway and stick to chicken and fish when I do. I Have to admit it gets very confusing when you start looking at diet - there's so many opinions on what you should/shouldn't eat that it seems sometimes nothing is safe!!!! As for supplements I've not taken glucosamine but I probably should. I take fish oil and that's it at the moment. Are supplements like glucosamine ok to take along side the dmard"s?

    And how did you cope with the children? When it was bad I found myself more short tempered out of frustration that I couldn't be the perfect mum and respond eagerly and quickly to everything they wanted. And also just picking up my 2 year old - they say to be careful to not do anything to strain or stress the joints, but not tesponding to his needs wasn't an option. I'm enjoying this period of relief from the steroid but there's a cloud hanging over it that I can't ignore. Some days I think I in denial. I flit from one extreme to another - feeling I can cope and all is fine , to panic that it's never going to be over - or rather controlled. Does the methotrexate help you now?

    Thanks again Clare. Cx

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