It is good to be among friends, when reading your posts and comparing the road I have travelled.
Was diagnosed with PsA some years ago. Not convinced of any diagnosis anymore. I seem 'Lupusy', as I have many of its symptoms. Have eczema. Migraines from hell. Always start at about 4.00am waking me up. Normally after a day in the sun, or travelling in a car in excess of 4 hours. Can anyone relate to this symptom and arthritis? Makes going away really embarrassing, you go away for a good time, and you have your head in the toilet. Makes me not such a good time, and I love to have fun. I do not drink alcohol, and I have given up all carbonated soft drinks (years ago). Tried Methotrexate, injections 10mg per week. Was a great drug, however, I felt like I was seasick the whole time, very unpleasant. (yes, took anti-sick tabs, but it was like throwing bricks into the grand canyon) For those of you who can take it, good on you, keep on it. My CRP history. March 2014 – 11. August 2014 – 15. Dec 2016 - 30, when it was up to 30, I fell and broke a rib, because I tripped and could not save myself. Zero strength. March 2016 - 25 and today, it is 28H. Now, my hands have packed it in. Had carpal tunnel operation three months ago. Got rid of intense pain in my right hand, but it really did not fix the strength of my hand. Going to bed is my nightmare. Arthritis loves to be still. When in bed sleeping, I cannot grab the covers to pull them up. It takes me longer and longer each morning to straighten myself, just not to be a complete invalid. I pretend I can walk…I know you can relate - the pain is outrageous. My left hand now - cannot make a fist…. My hands look physically different in appearance as well. The ‘moon’ in my fingernails and toes have disappeared….what’s going on there? Can anyone relate? Is this really PsA?
Thanks for listening.
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StraightenUp
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Hi yes I can relate to some of your feelings and symptoms. I have had PsA for 17yrs years and have had a bumpy ride with it. I am on sulphasalazine, which I have had for most of the time, tried methotrexate, felt like I had been hit by a bus. Then they tried leflummide (excuse spelling) which worked well forPsA and weight loss as it upset my stomach.
My feet were really bad in the early years, couldn't walk without pain, even with pain killers. But now they are mostly fine but my wrists and fingers give me hell. I have injections into my joints which work well for a time, but it never lasts. Yes I do suffer from bad headaches that lasts for days and are really hard to get rid of but great fully don't make me sick
Surely you must need a treatment evaluation. Have you been able to try a biologic which can be very helpful with Psa. It needs a big discussion with your rheumy who must be able to give you more help.
Yes you are right. My specialists is two hours from where I live, and he converses with my GP often of course, after my visits and they take turns in prescribing me meds, and watch me fail on them. I feel when I fail on the meds, especially when they give you the best treatments, they throw their hands up. I have too on occasion.....
Hi StraightenUp. May I ask, which meds have you failed? It is not unusual for people with PsA to fail traditional DMARDs - or rather it's the DMARDs that fail to help the PsA sufficiently!
I suppose I got to the point at which I was quite happy to fail my third DMARD because I'd clocked that biologics are the gold-standard treatment for PsA. And having failed not just the requisite 2 but another one to boot, it was full-steam ahead.
Methotrexate did help me too actually. It seemed to have a lubricating effect on my joints and helped with fatigue. But I still had swollen joints, some fatigue and quite a lot of stiffness. Even so, if that was as good as it got I'd have been happy-ish. Humira has been a whole different ball game. It sorted out the swollen joints quite quickly and then continued to deliver little by little, month by month until my range of movement became pretty much normal. I can run now (badly!) which is something I thought had gone for good.
I woke up this morning feeling very much as you have described and reading your post i was touched by some of the significant similarities that i deal with every day.
I also have PsA which for me was a secondry complaint as i have had Behcets Syndrome for probably all of my life although only diagnosed around 12 years ago ! Lol. Most people ( including medical staff,) have not even heard of Behcets because it is a very rare auto immune condition involving vasculitus that effects every single part of the body. Most people are lucky to get a diagnosis within ten years of trying to figure out what is wrong with them and there are now three Centres of Excellence in the UK that have been set up only a couple of years ago to deal with Behcets now. They have proved invaluable to us and are also extremely helpful as a source of information to try to achieve a diagnosis for anyone who finds themselves in your situation. The contact details and addresses are on the BSS website.
Of course, i am not suggesting that you definitely have BD but like so many of these conditions it shares many of the similar symptoms you describe.
Can i suggest that you consider this as a possibility in your search for answers and look up the Behcets Syndrome Society webpages on the internet and read some of their information sheets ? You never know .... Perhaps you may learn something from researching in this direction ?
There is also a room on this site for Behcets so perhaps it could be the first place to have a quick look to see what is being said so that you can write it off as unlikely for you or maybe need to search in more detail about it ?
Hope this is helpful to you in some way. There is so much to learn and so many different angles to consider and this, of course, is just one of the many ! Lol
Hello. Firstly I have to say that no-one here can tell you if you really have PsA or not. But you obviously have something inflammatory going on and the only person who has the diagnostic skills to decide is a rheumatologist.
So have you an appointment to see one again I wonder? I'm off meds too for similar reasons, but I've tried four now and had severe allergic reactions to three of these.
Do you know if your immunology indicates Lupus? This would help narrow things down a bit at least so if it hasn't been tested for a while you should ask.
I share many of your symptoms and history of eczema and my CRP is steadily rising back up to the 20/30 mark - PV/ESR always raised often high. My diagnosis was of seronegative RA but is now up for grabs with a new rheumy team I a new hospital. I don't get your headaches but I have many neuro symptoms and my immunology indicates Sjogrens, Vasculitis or Lupus now more than RA. Mine has so far been non erosive which is another indicator of a different connective tissue disease to RA after five years.
My hands are exactly same as you describe - can't clench or grip and they lock in the night - searing pain and some swelling in the knuckles. Nights are dreadful - all stillness is - but they also full of neuropathic pain too so feel as if they have been dunked in acid, as do my feet legs and arms. My nails have tiny splinter haemorrhages in them and have turned blue-ish and I have terrible sweats all through the night - always a bit dizzy and disorientated as if at sea. I'm told this is a propriception matter because of loss of sensation in feet. I'm under rheumatology, neurology and endocrinology.
I don't know what will happen to me next but I hope for a rediagnosis of either Lupus, or more likely an MS like presentation of Sjogrens or Vasculitis. Best of luck tracking down yours. Lupus UK have an excellent HU community you could join. I know PsA also causes multiple issues and symptoms including peripheral neuropathy so I would keep an open mind until you've had further investigations - which you need rather urgently by the sound of things.
Thanks Twitchy toes. Your information is very helpful. Love your analogy of being dunked in acid. That is exactly right. Your body certainly does not feel like it belongs to you. This may sound awful, but I'm glad I'm not crazy it is so good to talk to someone who actually in the 'know'. GP's and specialists need to walk a mile in the shoes of an autoimmune disease. Experience the effort to get moving in the morning...wow. Dizzy and disorientated is a common symptom of mine too. It is quite scary actually. I have had a brain scan, and have got the bonus attribute of small vessel ischemia, which apparently can be caused by excessive inflammation in the body or migraines, take your pick. My GP put it as my brain is 'unpacking'. Was not pleased about that. Bring on dementia eh...? My feet have sensation, however, when sitting quietly they do there own 'movements', my toes will come in a clench like a fist all by themselves. I can also feel it coming, the involuntary movements, like someone is 'dragging their fingernails down a blackboard' feeling in my spine. GP said it was all related and not too concerned. I am not very good medical terms, but I do have nerve pain, everywhere. I avoid doing anything for over two hours. Whether it be gardening or sitting and reading, or going out with friends for tea. (I make myself garden). I do work, and have a demanding job to boot. I just wonder how long I can keep the 'facade' up, when I am now having trouble raising my hands above my head..... More research needed I think. Cheers
My first, second and third thought is that you need disease modifying treatment, treatment that will control the disease and prevent damage. If you have PsA and are in the UK then you may well qualify for biologics. The NICE guidelines state that PsA patients with 2 or more swollen / tender joints, who have tried and 'failed' 2 traditional DMARDs (e.g. Mtx, Sulfasalazine, Leflunomide) should qualify for biologics.
Clearly you've already failed Mtx as you couldn't tolerate it and a rheumy who was determined to treat your disease 'aggressively', in other words to stop it ruining your joints and your life, would presumably just require you to try one more DMARD, possibly for just the NICE guidelines period of 3 months.
There doesn't seem to be a concerned rheumatologist in the picture and that shocks me (I guess you can tell!). I have PsA and it causes a whole load of whacky symptoms, nothing would surprise me. It's possible that your migraines could be related to inflammation in your upper spine or something ..... I have no medical knowledge but a rheumatologist would have a view or certainly should have.
Thanks to Humira, a biologic, I can get down on my knees again these days, after years of that being impossible and I'm on 'em now, okay not really .... but anyway I'm begging you to start knocking on doors either demanding action from your current rheumatologist or getting yourself a new one.
I have RA, Rheumatoid Vasculitis, Osteopenia and recently diagnosed with Fibromyalgia. I too experience excruciating migraines every few weeks, I've no idea what my trigger point for them is however. Do you take anything like Pregabalin or Gapapentin or any other of the neuro suppressant medication?. Since taking Pregabalin my migraines haven't been so frequent, although I still have them sometimes. Sadly there are so many auto immune diseases that cause similar symptoms, it really is like walking a minefield. And remember, if you don't agree with your diagnosis or treatment, you can always ask for a second opinion.
Just a word of warning - as you are very allergic like me - you may want to start on very low doses of the antidepressant/ anti convulscent family of drugs and be wary. I spent over a month trying to get myself off one that wasn't working last year. Even after only five months it was a struggle that caused no end of other health problems for me. I didn't take any of these now myself, having failed to tolerate 3. I think they can work brilliantly for many but for some are a complete nightmare! They aren't tackling the disease process either - just placating symptoms. Which at times would have me on my knees begging for them of course but fortunately this would be in the middle of the night when most GPs are sleeping tight!
When my hands & wrists were at their weakest my wife used to tuck me into bed. I asked her to stop doing that because whilst initially comfortable and warm I later felt totally trapped in this cocoon I could do nothing about and my body would heat up and I would feel more frustrated as the seconds rolled by, and with each second more pain.
Instead I learnt a step by step process of getting into bed that worked for me. It was never a nice process since it involved pain of lifting my quilt and trying to position it carefully to make sure when I would actually lie down I did not end up lying on the corner of the quilt, which if I did felt like an even worse hell of being cold, uncomfortable and knowing freeing the quilt from under my shoulder was going to take minutes of painful adjustment.
You are so right....!! I too put preparations in sleeping arrangements, that avert the exact struggles you have described. If I'm wrapped up in my quilt, its all over, I may as well just stay put, then go through the pain of getting out of it. Even adjusting pillows in the middle of the night, is a major hassle. I have two pillows under both knees, and one under my right shoulder, going down my body supporting my arm, and one for my head. I box myself up in pillows and keep one foot out at all times.... It works for me. Cheers.
What most people with auto-immune diseases do not realize is your diet and certain foods play a big part in these diseases! I have Ra and tried several meds which did not work or made it worse. I did research on Ra diets on-line and have been doing much better . You just might check it out. Hoping for success for you.
Thanks Baconbeast. Yes, I have given up sugar, limited my carbs, so that means totally gave up alcohol (not that I drank much anyhow, so that was easy) and softdrinks, all gone from my diet (years ago). I do need to get rid of coffee. So that is a red flag and I need to kick it. I have increased leafy green / fruit and vegetables / oily fish and tofu as I don't eat a lot of red meat. Will certainly check out Ra diets in more depth. Thanks.
Your mention of your finger nails made me look at mine , i have the same probelm! I googled it and it maybe a B12 deficency. It may be worth getting it checked Iam at rheumy soon so will ask her 😀
Thanks so much, did you check your toenails. The white moon just melts out through the nail bed, looks really weird. I have sort of already taken your advice. I believe in modern medicine, don't get me wrong, if I could be on methotrexate, I would be. Like the previous respondent to my post said, she failed on three of her four meds. I do exactly the same. I'm allergic to everything. So, last week I went to a naturopath. I took my blood tests. ESR's and CRP levels. Cost me a lot of money for the 'regime' I am now on. Its early days, so I don't know how much of a difference it will make. (absolutely no difference at the moment) The first night of taking a heap of vitamins, I woke with a rash on my stomach, seems I am allergic to vitamins too...!! But I am going to persevere, I have no other choice.
I have spent the last two years off meds (mostly) and tried everything with gluten and dairy eliminations, anti-inflammatory diets, plant based diets, raw etc etc. None have worked fully for me although some seem to take the edge off briefly - until the autoimmunity gets the measure and sneaks around the sides.
For me getting enough fresh air and gentle exercise and eating a broard and wholesome mix of everything is the best. I went through all this with my eczema years ago and finally concluded the same.
My first cousin (younger than me - in her late 40s now) has PsA with no psoriasis. She says she's held up now by a mix of steroids and MTX. Her hip was thought to need replacing as she ignored it all for so long that things had just gotten totally out of control. Then they discovered that it was still just about a working hip but the pain was due to massive amounts of inflammation in surrounding tissue. This is where her diagnosis of PsA came from, along with a family history (on the other side) of psoriasis. She is lucky to be able to tolerate MTX because i believe, without actual psoriasis showing anywhere, she would be unlikely to meet the criteria for Biologics. If you do have psoriasis as well as the rest, then I would ask about biologics as Postle suggests. Trying to keep things going without medications to assist, is not the answer from where I'm sitting. I'm not allowed on immunosuppressants again yet, so it isn't my choice to go drug free. I do hope your foray into alternatives works of course, but I for one would welcome the chance to do both!
Thanks so much, you have been so helpful. I note that you mention family history of PsA, and I fear my sister is lining up for it as well. She does have psoriasis, has had it forever. And all her symptoms/pains are starting. I gently told her today, that she could be heading down the same road, and to act now. You would not wish this on your worst enemy...! Let alone a loved family member. And my aunts, on my fathers side, even though I was very young when they departed this world, I remember them all to be very arthritic. So...its in the DNA?
Yes I'm afraid it sounds like it to me. I have no family history of psoriasis or RA personally. I think my sister has Sjogren's Syndrome as we share certain features and she has terrible sciatica. Our dad, uncle and grandad all died young with symptoms of vascular dementia brought on by a very rare autoimmune late onset diabetes - and were immediately insulin dependant. Perhaps my autoimmunity came from them but then my mum died suddenly too from atherosclerosis - which I'm showing early signs of as well. I think in my case eczema and RA/ Lupus/ Sjogrens have come about from early trauma and being bulk fed semolina with cow's milk from the age of six weeks !
Hidden sorry Whole food plant based diet (excl nightshades as well) didn't work for you. I remember clearly when I started mine with a week's detox on just water and then cucumber & celery juice my symptoms disappeared almost overnight. Coming back onto foods, any foods after the week all caused inflammation & pain & fatigue initially - and combated only by much needed medication.
However over the weeks I concentrated on getting my "gut flora" right building up after a couple of months to adding fermented foods such as miso, tempeh and homemade sauerkraut into my diet.
It took about three months before I began to have any confidence that I was getting anywhere, which coincidentally is the time it takes for the bacteria etc in the intestines to be fully replenished. Then I found signs of improvement, but even now a further two months on I still have setbacks. Just two nights ago I needed every med in my cupboard. But generally (apart from MTX) I am med free.
Thanks - but how can you be so sure that it isn't the MTX that's helping rather than the huge shift in your diet?
My RA has mostly gone away and I haven't even taken MTX for just over two years and only 3 weeks on Azathioprine plus six months on Prednisolone last year since stopping. My instincts, borne of 53 years juggling, tell me that my problems aren't related to my diet. However they may worsen significantly if I started to eat refined rubbish and lots of sugary drinks - so I don't.
Maybe I lack the discipline to try plant based living properly - but then I'm managing without MTX whereas you aren't? So I remain a firm believer in wholesomeness and balance with food for myself - but we are all so different in what triggers our flares. Each to their own.
1. When I started the paddison program I was not on MTX due to liver probs caused by NSAIDs, so that means the detox test was clean of any MTX influence.
2. I won't know for sure whether plant based diet is enough until I come off MTX. I am going to do that in September when my wife returns from a month in Ecuador so I have someone around to help me if things go pear-shaped. And my dr suggests my body will have symptoms about 3-5 weeks after stopping MTX.
3. Give me any of cows cheese, gluten, tomatoes, cows milk, eggs etc anyway and I will be have pain & inflammation within 8 hours lasting for at least three days, despite my MTX.
And yes, when push-comes-to-shove the MTX might have by its little old magic self have done the trick and this diet thing might be a red herring. But right now my doctor & rheumy's advice is solid- take an increasing dose of MTX.
Bottom-line? Even if I have to take drugs for the rest of my life, my diet & health is so much better (and improving) - and necessary to deal with side-effects of MTX etc. A plant diet has meant that my BMI is right for the first time in my life. Every day I have no fog in my mind. What's not to like?
That's great well done you! I've tried eliminating dairy for a few months, off gluten for five years and going sugar free. All that remains is trying no deadly nightshades but somehow I can't face this one as I seem to flourish on them!
Each elimination makes me feel great for a few weeks - as did my fast prior to colonoscopy a few weeks ago. I've thought about fasting for a few days every few weeks ever since. This enthusiasm has evaporated as neuropathic pain returns. I think the false high is just about taking control for me. But the neuropathic pain comes back or I'm numb and dizzy - and flares seem to have a momentum of their own - I can't trace them to anything I've eaten unfortunately.
I wish you best of luck with the Paddison programme long term and coming off MTX (after your wife returns). Being drug free isn't a choice for me but at least I am a bit more in control and less fearful of my allergic reactions hospitalising me again.
We use coconut oil to cook and pure extra v olive oil for dressing. It can become a bit over preoccupying don't you find? My hubby is a great cook and has been reading a book called GUT. He's decided that eating fresh food and balanced diet is best and I have to say it takes the strain of us both eating the same thing.
My main thought for myself is that certain environmental factors and bad infant diet may have played a part in my allergies, RA and small fibre neuropathy. I'm an artist and wonder if flares are worsened by chemicals/ paints I occasionally use. Also farming sprays, washing powders etc, insect bites etc - all these could be triggers for a mast cell disorder. I notice my neuropathy improves when I take antihistamine so am looking into this just now. But I get bored by rigid avoidance so tend to forget! I think doing anything for longer than two hours is a trigger for me.
Wow, that is amazing eh. The medical profession need to research why your moons bail out, when the going gets tough. And what strange urge of nature makes it happen in the first place. A previous correspondent said B12 Deficiency, so what makes it go... inflammation? We are onto something.
I admit that my nails and skin are a relatively new source of fascination to me! They look varnished (clear with hint of pearly pink!) now and I get frequent splinter haemorrhages when I'm building up to a flare. Also all periods on powerful medications show up in deep Beau's lines on my toenails - like a journal marking these traumatic events! My latest discovery was made yesterday when I realised that the red/ pink halos on all of my nails are telangiectasias - tiny spider veins that are associated with AI diseases such as Scleroderma. I then realised I also have these all over my finger tips and palms. Suddenly the nettle rash sensation in my hands is actually being made visible to me and actually looks like nettle rash all over my hands and, to a lesser extent my face and lips! These tiny ageing blemishes I curse on my face are actually part and parcel of some disease process?! I know it sounds unhealthy but I was kind of thrilled by this realisation because I am stuck with these tiny explosions on my face anyway but have so few visible clues to the massive weirdness going on under the skin and in my bones and tendons! Suddenly this proliferation of tiny spider veins everywhere - especially on my palms - represents a clue to my symptoms rather than just that I'm getting old (53). And I too have ischemic small vessel disease in my brain apparently - but I'm doing my best to confound it with all this new found scientific knowledge!
Hi there, I have an amendment to my last message. Just looked up PsA fingernails, and I am supposing this is with all arthritis, moons do go.... psoriasisfreetips.com/psori... The bleed in the moons is prevalent in this photo...poor lady.
Nail changes are one of the most significant features that distinguish PsA from other types of inflammatory arthritis I believe. However some terribly unlucky people have RA, PsA and Lupus all rolling into one. My former GP is one such.
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