Hoping someone can reassure me, diagnosed with psoriatic 1 month ago been on methotrexate 6 weeks tomorrow still suffering swollen toes also I've been on steroids just come if them but doctor advised tonight to start them again tomorrow just concerns me being on them so much
Psoriatic arthritis : Hoping someone can reassure me... - NRAS
Psoriatic arthritis
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brit2013
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Hello Laura
Reassurance for your complaint, this for me is awkward. I came down with this problem initially as a skin complaint a small patch smaller than the nail on the little finger, it then progressed to about 20% of my body. I was about twenty eight and by the time I was thirty I was developing small joint arthritis. One problem I had was my GP was unable to come to grips with my condition as it turned and I had to prove my condition via private medicine and treatment. Eventually with the help of private practice they decided what was wrong and my GP began to treat the problem and after a lot of money they started to treat me on the NHS. The treatment is all self explanatory and the arthritis is treated as RA where they will most probably treat with DMARD medication, then follow on with _TNF treatment together with the former
Psoriasis is like RA where the bodies immune system attacks bone and tendon, so they will give medication as mentioned before to slow down the immune system. You will generally suffer flares that do not show up in blood tests.
My condition has lasted for most of the time since 1977 up to present day. say 40 years and still going strong. The problem seems to be genetic so it can pass down generations, With me it causes Reactive Depression that has been treated on and of since 1965 when I started getting bone problems that were put down to growing pains and hypochondria.
You will generally follow the course that I have followed, although treatments and bood tests.
Your medications generally will initially will antinflammatories, pain killers and various appointments to have light treatments RA Specialists Dermatologists and sometimes Pain Clinics to give advice on Pain Control. Sometimes you may become depressed and may need counciling. Hopefully you will go into remission and with medication you could end up in some form of control. Sometimes the joints can become inflamed as can the tendons We are all different.
Personally I cannot give you any encouragement as personally I was medically retired over twenty years ago. I retire in several months time and do voluntary work for the NHS
I wish you luck, personally I cannot give encouragement
B OB
Hello Laura
Reassurance for your complaint, this for me is awkward. I came down with this problem initially as a skin complaint a small patch smaller than the nail on the little finger, it then progressed to about 20% of my body. I was about twenty eight and by the time I was thirty I was developing small joint arthritis. One problem I had was my GP was unable to come to grips with my condition as it turned and I had to prove my condition via private medicine and treatment. Eventually with the help of private practice they decided what was wrong and my GP began to treat the problem and after a lot of money they started to treat me on the NHS. The treatment is all self explanatory and the arthritis is treated as RA where they will most probably treat with DMARD medication, then follow on with _TNF treatment together with the former
Psoriasis is like RA where the bodies immune system attacks bone and tendon, so they will give medication as mentioned before to slow down the immune system. You will generally suffer flares that do not show up in blood tests.
My condition has lasted for most of the time since 1977 up to present day. say 40 years and still going strong. The problem seems to be genetic so it can pass down generations, With me it causes Reactive Depression that has been treated on and of since 1965 when I started getting bone problems that were put down to growing pains and hypochondria.
You will generally follow the course that I have followed, although treatments and bood tests.
Your medications generally will initially will antinflammatories, pain killers and various appointments to have light treatments RA Specialists Dermatologists and sometimes Pain Clinics to give advice on Pain Control. Sometimes you may become depressed and may need counciling. Hopefully you will go into remission and with medication you could end up in some form of control. Sometimes the joints can become inflamed as can the tendons We are all different.
Personally I cannot give you any encouragement as personally I was medically retired over twenty years ago. I retire in several months time and do voluntary work for the NHS
I wish you luck, personally I cannot give encouragement
B OB
Hiya Laurareed18 & welcome. Unfortunately if your doctor has advised you to start them again it's necessary. Steroids are not used lightly & his reason will be to try to reduce your inflammation until the MTX reaches it's full potential or at least until he sees a reduction in your ESR/CRP levels & of course with his eyes through examining you!
I take it you haven't needed to take many meds before? Again unfortunately this will be necessary if you've to stand a chance of controlling your PsA. You can help yourself to some degree but meds will be part of your daily routine now I'm afraid. If it's especially steroids you're concerned about short courses aren't usually a problem, they can be very useful to get inflammation & accompanying pain down to an acceptable level. I have to take low dose long term but I have straightforward seropositive RD & my Rheumy prefers to keep me on them to enable me to stay controlled because without them once near the end of tapering I flare.
There are quite a few other members with PsA who will be along soon I'm sure & share their experiences both positive & maybe be not quite so positive, we all react differently & have varying severity so we each have our own story to tell. I tried to put a link to the NRAS website for you to read & assure you but it's not working. Maybe a read through this would help you arthritisresearchuk.org/art...
I hope you respond well to MTX, I've been taking it 5 years now. 
in reply to nomoreheels
Nomoreheels, can I correct your spelling short for PsA as if you type PSA that is a seperate man's condition and not Psoriatic Arthritis. We need the use of the small s to differentiate, sorry for being pedantic but when I used it in the larger form was accused of lying as I am not a man!
nomoreheels in reply to
Oo is it? Sorry didn't know & thanks for letting me know, you know I'm a stickler for things like that too (stems back to PA days!) & so pedantic myself. I'll correct my errors. Now I'll have to look up just what it is I've been typing! 
Right...I should have known. In Spain my h had a 6 monthly blood test (he's diabetic) & this was included. I'm surprised they don't do it here as a matter of course knowing how some of our men folk are about having such things investigated when things aren't right.
Sorry about your diagnosis, and it is a shock if you've never taken many medicines before to suddenly have to take the strong drugs which come with such fearful warnings. But really uncontrolled disease is far, far worse than most of the side effects. And a few months isn't that long time for steroids, and by damping down the inflammation it will be helping the methotrexate really take hold. But when the time comes, do make sure that you don't stop them suddenly, and taper down the dose carefully. Hopefully it will only be another couple of weeks before you see a real improvement. It's also a bit of a shock how long everything takes with these diseases - I think we get used to take pills for 7 days and everything getting better immediately. Sadly these ones aren't like that and it can take rather a long time to get controlled. But believe you'll get there!
Thank you everyone & to be honest yes it's the srteriods that concern me but I have my follow up next Thursday so they will review my medication, I've been taking steroids since November on & of as it flared up and helpline suggested I take them over Christmas until methotrexate started to work although doesn't seem like it at the moment, it's nice to see I'm not alone.
This is the link that I wasn't able to copy last night, they might have been working on the site. It relates to Rheumatoid Arthritis but explains better than I can anyway! I hope it helps but if you need any more help just ask! nras.org.uk/steroids-in-rhe...
Hello
The Steriods are generally taken for short periods only, generally my old GP would not allow me to be on them for more than ten to fourteen days.
It is the DMARDS that are the real problem as they can cause problems with the immune system and they need to watch your blood and health on a regular basis. I am unable to take these medications as I have had concerns with my bloods and general health. They have now been withdrawn from my treatment plan.
With regards to prendasolen (excuse spelling) they have now stopped me taking those as well as again my immune system was really causing problems as in the early days I was on them ten days on, two weeks of, this was in the mid 80s. Only now prescribing them when I need a push say when Christmas was on the cards when in flare.
You are not alone here there are several people on here who are suffering at different levels. I now prefer to try and control my condition with things taught to me at Pain Clinic.
Now I am so very teird with it all and I look forward to the final flare as I was told it may burn out in my sixties. I am still waiting
BOB
Hello
The Steriods are generally taken for short periods only, generally my old GP would not allow me to be on them for more than ten to fourteen days.
It is the DMARDS that are the real problem as they can cause problems with the immune system and they need to watch your blood and health on a regular basis. I am unable to take these medications as I have had concerns with my bloods and general health. They have now been withdrawn from my treatment plan.
With regards to prendasolen (excuse spelling) they have now stopped me taking those as well as again my immune system was really causing problems as in the early days I was on them ten days on, two weeks of, this was in the mid 80s. Only now prescribing them when I need a push say when Christmas was on the cards when in flare.
You are not alone here there are several people on here who are suffering at different levels. I now prefer to try and control my condition with things taught to me at Pain Clinic.
Now I am so very teird with it all and I look forward to the final flare as I was told it may burn out in my sixties. I am still waiting
BOB
MTX can take up to 12 weeks to build up its effect, so it may get better yet.
Psoriatic Arthritis is one of the spondyloarthritis group of inflammatory arthritis, so the DMARDs (disease modifying drugs, like MTX) don't always work as well on it and don't really have a disease-modifying effect like they do on RA, though they can give good relief for peripheral symptoms (hands and feet). If you don't feel they are working well enough, definitely contact your rheumatologist and tell them, and ask what is the next step. In RA, they usually try quite a lot of different DMARDs and in different combinations, before they will consider anti-tnfs (biologics) but with really only a couple of the DMARDs doing anything for PsA, and if your disease doesn't get under good control, then you can become eligible for biologics much quicker. It does seem in the UK that many rheumatologists will just treat PsA more like RA, but really its more like ankylosing spondylitis in how it affects your joints. Check out the National Ankylosing Spondylitis Society for more information about your options, and if you want to, phone their really excellent helpline for more information.
I dont know if this will be of any help, but your treatment plan sounds just like my friend who has PsA.
She is on MTX, she used to get steroids, but is now on Depo Provera shot, and apparently the two dont mix, Im told. She first was diagnosed with psoriasis, then years later started developing joint pain, and was diagnosed again. Steroids can help you get through the bad times, ( I am on them now)
if you have been taking MTX for six weeks, then you should have some improvement withing the next few months...for some people it takes longer to work.
Can I ask what dose of MTX you are taking?
I am wondering if your dose needs to be higher.
My dose was 20mg each week, anything lower than that my symptoms and pain came back.
Usually when you first start meds, the doc treats it aggressively to get it under control, but some doctors are not aggressive as others and prescribe a low dose to see if its works, then increase it if needed, this later is what my friends Rheumy did to treat her PsA.
I'm taking 15mg per week mtx & doctor advised 5mg steriods until I see nurse next week to discuss how this treatments working for me, I do hate steriods but if that's what gets the inflammation down then not much I can do
Sounds like they are taking good care of you, giving you something for pain and inflammation control as well as a DMARD. I feel the same way about Prednisone, unfortunately its the only thing that really works for me as other treatments have failed so far, but fortunately there are lots of options out there with meds. Please dont worry too much about the Prednisone, it really sounds like its being used temporary. If you are finding the MTX tolerable at 15mg, maybe if they bumped you up to 20mg, that may do the trick, that bit extra may make the difference. There are also many alternatives to prednisone, there are lots and lots of anit-inflamatories, like Celebrix, Vovamo and the list goes on. My doc used Prednisone as a last resort, after trying many of the anti-inflamatories.
Hi Laura, I have PsA, with full diagnosis since 2012, like you I was given MTX to start, moving gradually from 15mg to 25mg, adding Sulphasaline and Leflunomide int the mix. I am now injecting Etnercept (Enbrel), weekly along with taking Leflunomide. You will find that your Rheumy team will treat it aggressively to get you under control and will see you regularly until you have reached that stage. The markers they are looking for is CRP at 9 and below and ESR at 11 and below, these are the ones when they were happy for me to move to six monthly reviews with consultant and nurse.
I agree you are going through alarming stages at the moment especially with steroid tablets, all treatment I received was from the hospital and none from my GP so was never put on the steriod tablets I used to have steroid injections from the hospital which I think was a better option, maybe once you see the team they will do the same, but then each consultant has different views.
Good Luck with your treatment, and if I can help you with anything just pm me and I will try and help. You will get the pain under control believe me. xx
I'm a Psoriatic arthritis sufferer, I was diagnosed years ago. Also on MTX and ha e been from the start. It does take a while to get into the system , so be patient. I am now on MTX pens ( injection ) but it doesn't seem any different. I was also on steriod but had cushions due to them.
Hope you get the benefit of them soon, sending you hugs.
Chris
dailymail.co.uk/health/arti...
I think it's been submitted for approval to NICE, thought to be releasing something towards the end of the year. Not sure if the 1st phase trial is underway yet or not, nothing to suggest as far as I can see, no more than when you brought it our attention anyway. Unless you know different, has your wife's Rheumy any further info for you? Maybe your wife would be in a position to take part in the trials?
Hi nomoreheels please see ukmi.nhs.uk/applications/nd... . Date on this is for Aug 15 for NICE would love my wife to take part in trials but reading the gumf it would appear that unless she takes the course of "med,s" that may kill her she may not be eligible . I wait with bated breath when the Rheumy nurse rings or posts us as to what happens next .
This was the most up to date info I found gmjournal.co.uk/new_oral_th..., dated the day before yesterday.
I'm sorry your wife may not be eligible, what an awful situation that she can't take the meds needed to work with it. Is it always necessary do you know or could she try without them?
Thank you nomoreheels for the link you attached for the steriods, although I'm taking them again from tomorrow 1 week won't hurt I'm. Sure & then hopefully nurse will sort other inflammatries out for me x
You're welcome. An NSAID that works for you is worth its weight in gold so I hope you find yours.
Are you brit2103?
Hi nomoreheels read the article and it sure says the same as I suspected in that my wife would not be eligible because the current thinking in England is that patients must take the life threatening drugs first .My wife is not prepared to take the risk and even balks at the idea of taking Steroids . As I write I include the statement from the article “ Apremilast is a new, oral treatment that fills a real gap in the therapies available for patients. An effective medication that doesn't require regular monitoring will be welcomed by both patients and physicians,” stated Dr Chris Edwards, Consultant Rheumatologist, University Hospital Southampton NHS Foundation Trust. And my question is why do they deny her this drug which she is willing to try, cost perhaps?. Not myself being of a medical background I read into this that this new drug acts upon and inhibits an enzyme PDE4A the enzyme which causes the body’s immune system to attack the sufferers own body .As my wife has all forms of PsA which started with Psoriasis of the scalp nails and skin including the inverse type which is the worst, the disease progressed into PsA causing painful swollen joints and nodules etc . The Consultant who first saw my wife even described the fattening of some of her toes as in the technical well known term “sausage toes “. I would have thought that my wife would be an ideal candidate for this course of tablets. Again more research needs to be done as PDE4 has types A , B and C , this drug works on type A I believe ,so not complete cure but maybe soon when the company has made it predicted profits for its shareholders ..
I understand your frustration on your wife's behalf. As I understand it DMARDs have to have been inadequately effective, not tolerated or contraindicated it would seem that although it has been trialled with MTX, SSZ & another which escapes me for now it has also been given without DMARDs, which makes sense especially for those who don't tolerate them, so maybe not quite the end of the road for her just now. Not having been granted a licence means no available cost to the NHS is out there but looking at US drug costings it would seem it may be a similar cost to biologics available currently, not exactly surprising given it's a new drug so no long manufacturing runs just yet.
Oddly enough my first Consultant referred to my big toes as salchichónes (sausages) my fingers too at their worst (or wurst lol) so maybe the term is more commonly used than thought!
I hope her Rheumy is sympathetic to her problems & will do all within his power to help you wife &, in turn, you.
Hi nomoreheels , thanks for the interest in my posts about PsA and its treatment with this new drug . I hope funding becomes available for all that need it . By the way I believe that it may also be a drug that could be used to treat RA . It also has been trialed for Behçet's Syndrome with excellent results. As soon as i have any more info I will post .
Thank you, anything that helps anyone with any of our related diseases is always of interest to me. I do hope things improve soon in some way whatever & however but I fear until things change for the better it will still be a lottery as to who receives funding, dependant somewhat on health authority. The NHS needs to listen & then pull it's socks up to give us the health service we deserve. Sorry, ended on my soap box again.
I agree with George & I will stand corrected Bob thanks. She fell foul of it herself so as it's a completely different condition I did not find it pedantic. From a different perspective, what if someone newly diagnosed used PsA (meta tag) on the their search engine? They'd be on an unrelated site, this isn't a locked post. What if the medical profession were to make the same mistake? We'd be up the creek.... I had to be exceptionally careful when I worked in a Surgery & so aware that what could seem an easy mistake could have devastating consequences.
in reply to nomoreheels
Hello Heels
Generally I look upon this site is an opener for those with problems who are looking for a way forward with their conditions I always feel that many know their problem and all they need is the support. I agree we all need to be correct in our ways when dealing with people. Although I try and not become mixed up with a diagnosis it is with me more important to get the person through difficult times and only give advice on what my experiences are. Therefore I look at pathways, no more or less. Generally if I feel I am giving advice I always, generally mention I am not a GP etc.
If people on this site sail close to the wind this is the only way forward. If total medical advice is sought there are other sites that will give a diagnosis, Prognosis my only interest is supporting those
who need support and gain confidence in the treatments available in general terms
I am sorry if I have upset anyone as I wish I had a site like this thirty years ago and had not suffered my pain in ignorance and flustration
All the best, we can also make typos.
BOB
nomoreheels in reply to
Sorry Bob I'm being a bit dim here, I'm not sure what your reply means in the main, I don't see how it relates to your previous post. I understand how you say you're not a GP but then I'm not quite sure.
in reply to nomoreheels
Hello Heels
I am sorry you do not understand.
The last week has been bad regards my actual voluntary work.
Now cannot go into it, only to say we are seeing politics in medicine. I was trying to explain my way on chatting on site.
Was at a meeting two days ago and it had upset all and sundry not going in any depth, Political.
All is me rambling sorry.
nomoreheels in reply to
Oh, no need to apologise Bob, just most of it didn't follow on from your other post, that's all. By the way, you don't need to tell me about politics & medicine lol, I have too many friends in all fields of med & it's often a hot subject! 
Still feeling ill. Had follow up at hospital yesterday to see the nurse & she has suggested slowly coming of the steriods in 8week, feeling unwell as I've caught the dreaded cough bug going around now whether it's that or the methotrexate but feeling so weak in myself no energy which isn't good with 3children under 5. There must be a light at the end of the tunnel surely x
Hello! I am 18 and have been on and off high doses of steroids since I was 14. It isn't nice but if the doctor didn't think that it was safe he wouldn't give it to us! Hope you're okay xx
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