I have been in the throes of flare for the past month or so. At the same time I started to get raised itchy patches in most of the swollen warm joints. This is a picture of my very swollen elbow/upper arm. Been to see GP this morning and straight away he said he thinks it's psoriatic arthritis. The rash is now on arms, neck, shoulders, feet, knees and I have patches under my eyes which are red and sore also. He has put me on steroid tablets and given me steroid cream to put on. He told me to phone and get my rheumatology appointment brought forward, so I have and will be seen there in two weeks.
He advised me to get hubby to take pictures of my red itchy joints and take my iPad with me on my rheumy appointment which I thought was a very good idea !!
We discussed the fact that my sister, my aunt and my youngest daughter have all been diagnosed with lupus, he thinks it's a possibility that I might have that also, but he personally feels more inclined To it being psoriatic arthritis. Anyway, seems like it's yet another auto immune thing to add to my list !!! If anyone can give me their experiences of psa then I would love to hear from you.
Oh, just to also say my eyes are also having mad flare with uveitis again, sore, red and streaming constantly. GP thinks it's all connected.
I have PsA and Psoriasis, when I first saw your picture and without seeing anything written it looked to me like Ps as this is what my skin looks like when it is beginning to flare up. Agree with GP see what your Rheumy says.
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Hi Georje, sorry to hear you are also afflicted by these rashes. Can I ask you if you are on any drugs and if so, what ? How long does one of your flares last, or does the rash just keep on going. Take care, lynda x
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The drugs that I am taking on for my PsA these are also given to people with extreme Ps as well. I am injecting Etnercept (Enbrel) and tablets Lelfunomide. These were prescribed by the Rheumatologist and from my GP I use creams for when the skin is extreme. I may add that I was born with Ps and have had all the treatment going, it's only since I have had treatment for the PsA that the Ps went completely, sad to say it's beginning to come back again. I hope yours departs for good for you, xx
Georje, to be born with Ps is just awful, your whole life must have been a challenge, I've only had mine for month or so and its already driving me mad, you have my total sympathy. Thank you for your replies, I have found what you said very helpful.
Take care, Lynda x
Oh dear poor you Lynda - it will be something that the rheumatologist has to address I imagine. Has your GP referred you to a dermatologist yet for confirmation? I have had skin issues all my life and always take my hat off to those with PsA for having to cope with problems with skin and joints - hellish I agree. Hopefully yours will be well controlled by the steroids short term and hopefully a DMARD or anti tnf combination will get it under long term control. I know someone with PsA, ulcerative colitis and RA - I think these things can go in gangs for some unfortunately. Twitchy x
Hi Twitchy, lovely to hear from you. My sympathies to you having skin probs all your life, because I now know just how horrible it is myself. Had a good chat with GP today. In fact he examined all my joints, saying that my elbows, wrists, feet and shoulders were all in flare, and these are the areas which are covered in rash. He straight away said he was sure it was psoriatic arthritis but will need confirmation from rheumy. I am going back to surgery Monday for full bloods. I have recently changed rheumys, I was not getting anywhere with my previous one. Back in January because my ESR had dropped to 15 (from being over 100 when diagnosed RA 9 yrs ago) I was told I was in remission, even though I was still in a great deal of pain with swelling etc. the rheumy who had initially diagnosed me had moved to another area and this was his replacement. I was taken off all my drugs. Since then I have gone down and down and suffered greatly. With help and advice from my GP, I have now moved to another rheumy, I have only seen him once so far, but seeing him again in two weeks. I have been in full flare for about a month now my joints hot and swollen, and this rash seemed to come along at the same time.
Hopefully I may get back onto drugs when I see rheumy. My uveitis has also gone into mega flare, so I have been feeling quite poorly. Our daughter is getting married in January, so I do hope this rash might have receded by then, otherwise I shall be wearing a burka to cover up !! Interestingly my maternal female relatives are all blighted with auto immune problems. My sister, my aunt (moms sister) and my daughter (the one getting married) have all been diagnosed with lupus. My daughter also suffers raynauds.
I feel guilty I have passed these problems onto our daughter courtesy of my genes. We do have another daughter who thank goodness is not showing problems as yet, so fingers crossed.
Hope you have a good appointment with neurologist which must be due soon, let us know how you get on. Take care, Lynda xx
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Hi Lynda - that's terrible that you were taken off all drugs just because your ESR was down to 15? How long have you been off RA drugs for now? For me it's been five months now and I'm feeling lousy too but not really in my joints apart from throbbing. I would be totally unsurprised if I broke out in psoriasis one day but so far this hasn't happened thank goodness. My main pain is presently in ankles and wrists going up into knees and shoulders - it's like funny-bone pain really yiuch!! I've got it in my upper belly now too but I have gallstones so I'm guessing that my gallbladder is unhappy and inflamed too.
I hope the new rheumy is helpful and gets you onto an effective med very soon so that you don't have to wear burka for your daughter's wedding - mind in January in the UK that might not be a bad thing anyhow?! Txx
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Hi Twitchy, I have been off methotrexate since February. When rheumy told me I was in remission and stopping drugs, he said, 'oh, you could become very ill'. I knew then that it was time to see someone new. I was so upset and fighting tears and unable to fight him back, I just gave up. Later in April when I saw a consultant ophthalmologist and diagnosed with uveitis, inoperable cataracts, inflamed optic nerve, this consultant asked me why I was not on anti TNF therapy - he was so shocked I had been taken off MTX. He then told me I should with mynGPs help find another rheumy urgently
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Whoops, pressed send too quickly ! I have had lst consultation with new rheumy and seeing again in less than 2 weeks as appointment been brought forward because of rash. Hopefully I will get on some drugs. My sight is deteriorating very quickly. I am devastated about that. My,optic nerve so frail I am unable to have surgery. My cataracts are unusual in that they are scattered over the eyes instead of singular ones. I was told I am losing my sight and there is nothing that can be done. Oh yes, I have macular odeama as well !! I have to wear dark glasses all day now and hide from the sun. I have steroid drops and the usual dry eye drops but I am so depressed. Like you my joints can be in full throbbing mode, then ease off few hours later. My knees are horrendous, they never seem to ease. My wrists flare up and down, also my feet. Worst for me is spine and neck, this is horrendous pain, I can only walk little distances now and have to use wheelchair. I have AS, and such severe pelvic pain. I am waiting for more surgery on wrist but surgeon will not do this until I am on drugs for RA to calm things down,,otherwise surgery would not work. I am in pickle really, not getting anywhere fast. Lynda xx
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Annoyingly I lost my reply to you when it froze on my iphone! I can see why you feel so distraught about losing your eyesight of course - who wouldn't? But perhaps the drugs they give you for the RA/ PsA will make a big difference and help your eyes too - really hoping so very much.
I know your story of course Lynda but hadn't realised how badly things have been progressing for you lately. That is such a shocking tale about the rheumy taking you off all MTX last February. He should be struck off! But on the plus side at least your GP sounds very good and hopefully your new rheumy is too. And also, although your skin is driving you nuts (and I can relate entirely) perhaps it is also the key to getting onto anti-tnfs now which might prove to be life changing - so a blessing as well as a curse? Something has got to give re the neck and wheelchair etc. I don't know what on earth that awful rheumy was thinking of?
My youngest sister is going through the mill just now with her 12 year old son being very challenging and being investigated under general anaesthetic on the same day as I'm at the neuro, for Crohn's. His big sister (14) has just been diagnosed with Ehlers Danlos and is having physio weekly because her hypermobile joints keep coming out of sync and she's in a lot of pain. And my sister has severe osteoarthritis in her knee. So between them this extended family of mine are really struggling too and I understand how hard this is - it feels never ending for some families so you start to think that good health is a rarity. Then you meet healthy, "normal" people and get a rude shock!
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Twitchy, yes I think the key for me is getting back on some drugs, and if it can prevent any further eye damage that will be fantastic. I had bloods taken on my first visit to new rheumy, checking for many things, including genetics so hopefully this will reveal more. New rheumy kind and understanding and listens !! I have high hopes. I am blessed with fantastic GP, who examined my joints on Friday and said I was in full flare. He is contacting rheumy this week to advise him what's going on, with joints and rash. I think genetics plays huge part in many families health problems. We have auto immune in females only in my family, mum sadly passed away aged 52, she had suffered RA for many years. In hubby's family we have cancer. Ken has Unfortunately had colon cancer, both his parents had cancer, and his brother and sister also. I am pleased to say my dad is alive and kicking !! He is 91 yrs of age, still drives his car, walks five miles a day and has a full head of almost brown hair !! Hardly any grey. And this is a man who was kept a prisoner of war by Japanese, who when he returned to England following the war was totally emaciated weighing just 7 stone, if only I had inherited his genes, lol. Such is life !!! Lynda xx
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Heck that's amazing! Mine both dropped dead out of the blue both at the age of 73. People often say how lucky I am to not have to watch them suffer but I don't think people who haven't lost their loved ones suddenly have any idea of how the shock can affect us mentally and physically. Oh well - really pleased (and envious) about your new rheumy. If I do have a neurological problem as well as a rheumy one (which I doubt) then I hope this neurologist is able to take the lead for me with possible drug treatments But they are all colleagues up here so I think this inevitably colours their aproach.
My hubby's father had very similar symptoms to mine but was a difficult man so no one investigated. On his death certificate the doctor put RA as comorbidity
and the family were all baffled as he had never been diagnosed. I think he died from undiagnosed Ceoliacs and probably had B12 deficiency personally as siblings all have food intolerances. His twin sister is battling cancer now. Genes eh - not brilliant in my lot either! Tx
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Hope you have a good appointment with Neurologist, please post straight away, dying to hear, lynda xx
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I will try but will be down at the big hospital for 12 hours and may be too depressed and exhausted by the whole thing to speak. I'm really trying not to get my hopes and expectations up too high as have come across so many people who have come out of
Hi just to say great advice from above answers and my friend got diagnosed with ps arthritis and got onto Humira and has never looked back. She's working full time now after a rough 6 months but discovering what type of RA she has really helps her!! Good luck and thinking of you xxxA
Allanah, yes, if I get back on some drugs I'm sure things will improve, meanwhile the pesky itching goes on !! I always get good advice from this group, and a realisation that I'm not alone with my problems. Take care, Lynda xxx
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