Is it not serious enough yet or should I try to move quicker

Posted Tue 2 Jan 2018 15.04 by Matblack

Hi Everyone I'm after some advice please :) I've been suffering from Psoriasis of the scalp for about 5 year and it has got progressively worse and then a couple of years ago it spread aggressively to my legs taking over the whole of the front of my lower legs and spreading to the backs of my calves. I've been pretty sanguine about it its frustrating and itchy but I've been busy at work and I just grin and bear it. Recently I visited a GP with regard to another problem which had suddenly developed, I awoke one morning to a stiffness in one of my middle finger, swelling of the central pad and reduced movement, this was literally overnight but has since got worse and worse, I also realise I've been putting up with something very similar in my right foot for months but just writing it off. At first I thought gout but its not as painful as I have been led to believe gout is and coupled with my skin psoriasis I've kind of come to the conclusion its PsA. The GP ordered up blood tests which were negative for RA and other inflammation markers, I went back to another GP who did a quick squeeze test and agreed with me that there was a good chance it was PsA and told me to take NSAIDs and I should come back if it gets worse. Is it worth asking to see a specialist, I'm doing that usual bloke thing of "well it hasn't dropped off so I don't need to see the doctor" but I'm worried, its bad when I wake and the swelling means I have reduced range of movement all day, if I fold the tops of my fingers over to touch the pad of my hand on the left hand all my fingers line up if I try the same with my right hand I can't touch my middle finger down and it's one or two cms out of line with the others (hard to describe but I don't think I can post a picture here). At what point should one be asking to be referred to a specialist? I'm now worried about going back because I'm not being taken seriously but the first think I do when I wake in the morning is flex my fingers and hope that nagging stiffness won't be there but it always is :( My mother has severe RA and is on Biologics and there is a history of autoimmune issues in my family, I am also Type 2 diabetic but have reasonable control. Any advice would be greatly appreciated MB

Posted Tue 23 Jan 2018 10.48 by Matblack

Its getting worse stiffness and swelling in my middle finger and pain which I presume is tendinitis in the palm of my hand and tracking down to my wrist. My other hand has some slight stiffness and I am hoping like mad that it isn't the same thing. The movement in my finger is reducing and it is starting to be noticeably fatter than the others. I have pain in the sides of my feet where I believe people get bunions but its a deep pain, I've had this one and off for a long time but the more I think about it the more I think it might be connected. MB

Posted Sun 28 Jan 2018 10.55 by Psoralen

MB, Definitely ask to see a rheumatologist ASAP. I did exactly what you are doing, denied, put up with it etc etc for several years. I’m under specialist care now but I could have had an easier time of it, and prevented my toes curling up! Don’t risk long term damage, just do it! Seriously, you will be much better off being kept under review by an expert. Best wishes, P

Posted Mon 29 Jan 2018 08.24 by PeterK (edited Mon 29 Jan 2018 08.25 by PeterK)

I totally agree with P. The sooner the better. This is something to consider as well . . . . It took 9 months for me to get to see a consultant (this time was taken up with GP sending me for X-Rays and scans etc). When I did actually get to see him, he sent me for bloods etc (which really could have been done by the GP beforehand) and I was supposed to see him 4 weeks later. His department forgot to make the next appointment for me and it was another 3 months before I saw him again So I was then at 1 year, rapidly getting worse with no better medication than ibuprofen. For the record although being on Methotrexate for a few months now, I'm still getting worse almost daily and maxed out on Ibuprofen. So . . . in my opinion, get your self there ASAP . . . things dont always go smooth and there can be unforseen delays! :) Pete

Posted Mon 29 Jan 2018 10.41 by Matblack

Thank you for your replies I called the surgery soon after I posted this and had a telephone consultation and the asked me to get more bloods done if I wanted to be referred, however they printed the wrong form and I've only just managed to get around to sorting it. Will pick up for tonight and get bloods done, the same blood tests I had before Christmas. So far over the course of this I have seen/ spoken to three different doctors and will see another one next Monday, hopefully with the test results in hand. This is not a complaint but it wasn't that long ago that I was seeing the same doctor for everything and at least they could translate their own notes etc, I suspect that I'm being sent for the same bloods again which has a cost to the NHS rather than except they have already been done. Now taking NSAIDs Paracetamol and Ibuprofen all day everyday to deal with the discomfort. Itchy legs are back with a vengeance after coming off the Dovabet too :( Fingers crossed I can get things moving next week Thanks again MB

Posted Tue 30 Jan 2018 12.24 by ClearskinPls
Since 2001, tried uvb and creams

See the dermatologist at a hospital. Asap

Posted Tue 30 Jan 2018 13.06 by Suzyhall9024

I have had psoriatic arthritis a long time and would advise pushing to see a rheumatologist asap. My rheumy often tells necthat blood tests are not always a reliable indication of how active this disease is so your GP is not really qualified to deal with this. It is such a destructive disease the sooner treatment is started the better long term prognosis

Posted Mon 5 Feb 2018 10.50 by Matblack

Well my pushing didn't come to much, new doctor has decided to refer me to Muscular Skeletal as he thinks its tendinitis. Wasn't going to be swayed on PsA and mentioned Trigger Finger for which the symptoms don't fit. However I am going to keep an open mind and take the referral, quite frankly I'd prefer not to have PsA and if its a dodgy tendon that will be terrific however I suspect they'll draw a blank and I might get a battery of tests and sent on to Rheumy in a few months.

1 Posted Thu 15 Feb 2018 00.44 by Fruitbat1

Hi folks Don’t take loads of shit, it doesn’t work and will end up giving you a stomach ulcer like i have. Take cod liver oil religiously at its highest strength and include oily fish in your diet at least twice a week.................thats it.........no miracles i am afraid !!! It works for me and I have had psoriatic arthritis for 30 years now. Also dont drink (I know blah blah blah) BUT DONT !!! It’s really dehydrating and makes matters 100 percent worse, trust me xxx

Posted Thu 15 Feb 2018 06.46 by Suzyhall9024

Please be careful advising people to refuse medication and only take fish oil that is very irresponsible!! If you have a severe form of psa and have seen what this disease can do to your body you would think twice. Fear the disease not the medication . I'm sure fish oil along with other supplements are of great benefit to us all but to indicate it can stop or slow down the progression of this terrible disease is sadly not true. I don't want to pump my body full of poisonous drugs but without them I would be in a far worse state and believe me I have tried every supplement diet and miracle cure going - this is an auto immune disease and in severe cases needs aggressive treatment

Posted Fri 23 Mar 2018 10.55 by Matblack

I'm back, had the consultation with Muscular Skeletal today, a lovely lady who took my concerns very seriously, she examined me and then asked me my thoughts. I explained that I was worried it was PsA and that I had Psoriasis. She looked at my nails, asked me about eye dryness (yep got that and its getting worse) and said she agreed with me, the swelling isn't pronounced and the nail involvement is subtle but it is there on hand and feet, the foot pain I have is also likely a symptom. She sent me staight to Xray, referred me for an Ultrasound and ordered up a much more extensive and specific blood panel including HLA-B27. She's going to look at the blood results and refer me to a Rheumy Consultant which was exactly the outcome I wanted if she confirmed she thought it was PsA. She has told me that PsA is hard to diagnose as it is really a group of diseases but I have enough of the markers that is is likely, it most certainly isn't tendon based, she also said to expect the consultant to want to take an aggressive approach to treatment initially. I'm deeply impressed by my treatment today and I'm please I was referred to Muscular Skeletal despite the reason for the referral being wrong. The lady I saw (a senior OT) was unimpressed by the treatment of my doctors who didn;t seem to know what they were doing especially not ordering an Xray, if there had been erosion (which there doesn't seem to be yet) we'd have missed a vital window and movement may have become permanently damaged. This reinforces my opinion that GPs know very little about PsA unless they have a personal interest in the disease. Fingers crossed the Ultrasound and Consultant appointment come through quickly and we can get moving. Above all it felt wonderful just to have someone take me seriously and not fob me off and leave me to wait until I was in permanent agony. Thanks for listening I will report back soon

Posted Sat 24 Mar 2018 18.30 by Elizabeth

I have uncontrolled PSA at the moment and I am waiting to start a new drug for me called humira. I have made myself get dressed and gone out everyday this week, hospital appointment.doctors appointment food shopping etc today I haven't been able to get out of bed because of the fatigue and pain caused by this awful disease. So I stayed in my bed, I don't feel guilty in the least as my specialist said do what your body tells you to do but I do think to myself that's a day I won't get back. Has anyone else tried this drug humira is it any good ? Has it got side affects? And does anyone else have to stay in bed?

Posted Sun 25 Mar 2018 21.06 by MrGimpy

My experience was for years very similar, They just kept coming up with diagnoses (gout, tendonitis, cellulitis, overuse, normal aging, osteo getting worse, etc., etc. This despite the fact that my symptoms have for years been the classical signs of PA. I try not to be angry about it because it does no good. I have an excellent rheumatologist now. She knows what she's doing and has been very active in advocating with the powers that be that I get the right treatment. After only a couple of months with her, I am on both methotrexate and Enbrel and am hoping for the best. If these meds don't work, I'm sure she'll browbeat somebody until I get an alternative. Pretty cool. As with many things, getting the right person really makes a difference. You need to to push for yourself, I think, 'til you get that person.

Posted Mon 4 Jun 2018 16.09 by Matblack

Quick update Finger is getting worse, much more swelling, definitely dactylitis all the signs are in line with PsA. Unfortunately the swelling, stiffness and pain are starting to effect my typing which is annoying. In other news after my blood test results came back it was very obvious my Vitamin D was compromised, not surprising really as my office has a tiny window and I don't get out at lunchtimes. I did my research and started Mega-dosing Vit D and Vit K over the counter supplements. The positive from this is my skin is clearing up, I asked the GP for more Calcipotriol and these things together have worked wonders. Check in my GP by letter and he was happy with this. Telephone consult with the Hand Specialist was basically to say that based on the Ultrasound she thinks its PsA as it shows Tenosynovitis and she needs to refer me on to a consultant rheumatologist for the next step. I'm currently waiting for more information on that appointment which on the NHS could be 10 weeks plus. If I want to speed that up I can by going private and the same rheumatologist can see me within 48 hours :/ I'd say my pain on flexing my finger has gone from a 1 to an 8 and my movement is now severely compromised with pain on contact as well as flexing. The first thing I do in the morning is flex my finger and wonder how much worse it has got overnight, unlike other arthritic conditions it doesn't get significantly better through the day. My biggest worry is more finger involement and the loss of movement in my hand and grip strength as the other fingers do seem to be compromised where they flex together. I'm pretty sure I'm going to pay to go private and I'm just waiting for the paperwork to come through with the referral. Thanks for listening

Posted Mon 4 Jun 2018 16.47 by PeterK

I think youve found some good people at the NHS . . . . stick with them! Last time i saw my consultant was in November when he put on methotrexate . . . . that nearly did me in . . . but GP and consultant secretary said i had to wait until appointment in March to see him. I arrived at the hospital to see consultant in March only to be told they had cancelled my appointment and couldnt see him. I could see him, in his room . . . no patient and 1 on his list for 1hr time!! But he wouldnt see me . . . . . new appointment made for November was the soonest they could do . . . 1 year after seeing him last!!!!! I went to my GP to suggest changing . . . GP said he wont change it has the one i have is the best and just stick with it . .. pffffffffffff! Broken NHS for me . . . . . . private I think, anyone got a shotgun and a ski mask I can borrow??

Posted Mon 4 Jun 2018 16.52 by Matblack

Such a shame, our NHS is being systematically dismantled by people with an ulterior motive to bring in the private sector for profit, I'm sure the £1B bung we gave to the DUP could have filled some gaps :( It may be worth inquiring about having a private appointment I was quoted ~£150 for an initial consult and told that unless anything else was needed I could be prescribed and set back to the NHS for any follow up. A one off payment is worth it for me but it's not something everyone can afford to do :(

Posted Mon 4 Jun 2018 17.01 by PeterK (edited Mon 4 Jun 2018 17.06 by PeterK)

Unfortunately unable to work as standing/walk/sleeping impossible pretty much. The government wont help with any kind of benefits as i hold a UK passport but lived out of the UK for 16years and have only been back 1 year - so i dont qualify. Apparently if my name was Mohammed and I had a Somali passport with 8 kids in tow - I'd get in excess of £2k a month ;) You are right . . . NHS is being destroyed by design . . . . . . they always seem to have enough money to drop 10 millions of £'s of bombs on innocents in other countries in just a few days . . . . strange that isnt it.

Posted Thu 28 Jun 2018 22.10 by Matblack

So today was the day I got to see the consultant. I went against my morals and paid to do the same guy I would have seen in 21 weeks if I had waited. It was a good consultation, through and the diagnosis fully explained, my tenosynovitis is almost certainly PsA and even if it isn't and it's different obscure arthritis then Methotrexate will likely bring my symptoms under control. 15mg on a Saturday with Folic Acid on Sunday. Back to the consultant in 8 weeks for review. The cost ~£350 for 2 consults and prescriptions, worth it? I don't know yet but if it works then it will potentially stop long term damage which I could have developed just waiting to see someone. So for me yes I think probably, I wish I could have got this level of service on the NHS but I'm lucky enough to (with a little belt tighten and going without) be able to afford it.

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