psoratic arthritis - questions

psyart

Hi I was diagnosed with suspected psoriasis arthritis over 2 years ago and have steadly got worst over the last year. I am on 20mls MXT injection once a week which has reduced the pain so that I am not living on pain killers or using my splint! Last week, after standing on my legs for quite a while, my daughter said that my leg and ankle were swollen, she is a staff nurse so i belive her!

but my blood results show no imflamation in the blood cells and they have never been high! my hands do not swell up like they use to, still get pain and stiffness, especially in mornings and after sitting for while, but have not needed my splints for while! I use to cry sometimes with the pain, so something is helping!!!!!

my questions is - anyone else with psoratic arthritis out there - if so, what are you symptoms, are the doctors fobbing me off??? There is something wrong and the pain use to make me cry before the MXT inj, but sometimes I get frightened by the type of treatment and wonder if some times its in my head!! does this make sense??

sorry if this seems a bit stange, but after getting the last lot of blood resutls, I just started to question things!! also, because I suffer from nausa for about 2 days, I do think about the treatment and what its doing to my body!!!!! :?

from a very mixted up Louise!!!!! :oops:

woodbon

HI, I've got OA, which is different, but, I KNOW about pain, and its not in your head. I know that I often think my pain is in my head and maybe if I tried harder I'd be fine, so I do. Guess what? I end up having a sort of flare and feel really bad! I think we all, well most of us, from time to time get down and wonder if we are making it up, but we arn't!!! :shock:
So, if you'r worried and in pain, see your GP, and take care of yourself!
I hope you soon feel better, sending you all good wishes, Love Sue
ps it is natural to feel mixed up at times, I wish the pain was in our heads, then perhaps it would go!

skezier

Hi Louise,

I am sorry you get frightened...... I do know what you mean though. I have had it a while but its only just been names, partly cus I didn't mention much to my Rumo. It doesn't show in blood tests, but mine has swelled my wrists and ankles up and I have pain in both elbows and shoulders that is a different to the ever present oa.

I think it's very unlikely they are fobbing you off. I know how you end up thinking that but keep taking the meds cus they will help. I am sending you a cyber hug ((( ))) and hang in there cus at least the Rumo is taking it seriously. Cris x

joyful164

Hello Louise
I was diagnosed with Psoriatic Arthritis 4 yrs ago, after years of suffering, being given different reasons for the pain. My Rheumy diagnosed PA. He had a load of students with him at the time, and I remember sitting there with him asking them all what they thought. They all came up with PA. My GP just seemed to call it Rheumatoid Arthritis on all my sick notes.
made life simple I suppose. There are so many forms of Inflammatory arthritis. I only use to get small areas of Psoriasis, not great big patches of it like a lot of people. I had painful heels, very swollen, and the pain use to feel like burning and toe and ankle joint did and still lock up occasionally now. I am on 20 mg of MTX. I took mine on Tues, but I am feeling a bit sick tonight and not too good. that's why I am sitting up with a cup of tea and doing theforum at 4 am in the morning.

Do you suffer from high blood pressure?

I did and it does cause concern at times, and all my meds made my ankles and feet swell up. A
Sounds like you need to see your conssultant again or the rheumy nurse good luck

joy

psyart

hi - thanks for replies and hugs!!

Joy - I dont suffer from high blood pressure or psorisis, which is why when they said PA I was completly shocked!! I have an underactive thyroid, which was diagnosed 6 years ago. I think that when I read the forum and people say about their high readings in the blood tests, which I presume shows inflamation, then I wonder??!!!
Maybe this is just part of the learning process of accepting arthur, but I have been feeling this for a long time!! And also, I do feel embaressed to talk to the hospital about it :oops: , but feel very comfortable talking here as everyone understands!!!!!

So thank you for listening!!

Louise x

psyart

Hi Joy - meant to say about you feeling sick - hope you are feeling better??? hugs to you anyway!! I hate the nausa that comes with the meds!! I have been trying different things to help - sucking on an ice lolly was recommened on this site!! I eat ginger biscuits or small crackers. I do find that when I managed to get a small amount of food down me, then it seems to settle my stomach!! this only lasts for about 1hour, so I have to eat something small again!!!!

I am on anti sickness tablets, but they have now been changed as stopped working!!!!! more pills to pop!!!

Louise x

dvaidr

I have PA - was diagnosed about ten years ago. Have had P for 30 years.

Taking MTX, 25mg by syringe weekly and Solpadol/Naproxen/Folic.

I'm no expert, but I can't understand why you we're diganosed with PA when you have no P. My rheumie tells me there is little difference between the two.

Good Luck.

joyful164

I don't know if I heard it wrong or not, but apparently if the Psoriatic Arthritis goes into remission, then the psoriasis will come out, in other words, it makes itself noticiable and irritation will commence. I get psorisis in the groin, round my hands and around the waist but not too bad. I just put some of the cream on and it subsides. Since being on MTX though, the psoriasis has not appeared. I'm just lucky that I don't have it all over my body like most cases I am aware of.

Have been waking up with morning sickness all week this week. Is it all in the mind because I read about others being sick on MTX?

josiec

Hi, I've had a query over a diagnosis of PA for 3 years, although it is very debatable as no obvious evidence of inflammation. Anyway, my consultant did say I could have it as my mum has psoriasis, and apparently the genetic link is there. I don't know if this is a widely held belief, and others may disagree?? Regards, Josie

milmandy

josiec wrote:

Hi, I've had a query over a diagnosis of PA for 3 years, although it is very debatable as no obvious evidence of inflammation. Anyway, my consultant did say I could have it as my mum has psoriasis, and apparently the genetic link is there. I don't know if this is a widely held belief, and others may disagree?? Regards, Josie

Same with me, query PA for 3 years..ESR and CRP only once shown as very high and not since. Hardly any visable swelling except my finger joints a bit.The symmetrical pain around joints and in tendons is real enough.I have sligh Psoriasis and my mother did(but she died when I was 12). An underactive thyroid was picked up when having these other tests..also a dry eye and I developed hay fever and other sesnitiivitiy at same time but I remain a mystery woman..join the club!All best, Milmandy

northumbrian

A small percentage of PA sufferers develop pA before P. It may be just a matter of time before the P surfaces. However the treatment for PA and RA is very much the same, MTX is a standard treatment for both. It sounds like the MTX is helping you, it did nothing for my PA and just made me sick to the point I could not function on a day to day basis. PA is very difficult to diagnose as not much shows up on the blood tests, eventually the pattern of the disease gives them a clue. Small joint problems rather than large joints and in my case tendon and connective tissue problems. It was over two years of pain and frustration before I was diagnosed as I had hand, wrist ankle and feet pain but nothing showing in the bloods, no swelling and no inflamation. Oh and don't forget the real killer of severe fatigue. According to the Drs. it was all in the mind untill they could see the swelling and feel the heat. The fact you are on MTX means the Dr's are taking your symptoms very seriously. I am a middle aged man and find it difficult to pour out my feelings to the Dr's. I find I have to be very detached when see them and now tell them everything, and persist until I get the treatment I need.
Best of luck
TP

valval

josiec wrote:

Anyway, my consultant did say I could have it as my mum has psoriasis, and apparently the genetic link is there. I don't know if this is a widely held belief, and others may disagree?? Regards, Josie

hi find this interesting as not got rhumy yet doc thinks it is oa i have but getting lots of flare ups and my mum has psoriasis quite bad so will ask if posibility for me keeps moving around body and do not think it would be like this if oa which is wear and tear this might help me a lot thanks was getting to think i going mad lol

c4thyg

Hi Louise,

I have PsA and have had psoriasis for years as well. What you describe does sound like PsA. There is no blood test for PsA and it's a diagnosis of exclusion. You will be negative for rheumatoid factor as well and not always have a high inflammatory marker. I have to point out a few things though. You don't have to have psoriasis to get PsA, it is not symmetrical like RA as it doesn't always affect the spine. The treatments are similar but be careful as not all RA treatments work for PsA. Unfortunately we have fewer options available to us.

you mentioned feeling nauseas after the Mtx. I used to feel a little sick the day after taking mtx in tablet form and I changed the way I took the folic acid to go with it and it really helped. I took my folic acid every day except my mtx days and it eased things for me. It 's worth knowing as well the the anti-TNF therapy which I now take is more available for PsA because we don't have as many other options. You only need one examination for example.

I hope you are feeling better and it really is good news that you have found a treatment that works for you. It sounds like it might just need a bit of tweaking. Take care, Cathy

butterfly1

Hi Louise

I was diagnozed with PA about 3 and a half years ago. Like you, my ESR and CRP never rise and I struggle getting the medical team to believe me when I say how much pain I'm in because my blood does not prove what I am saying. My GP is great but it's limited what she can do for me. In the beginning I was put on MTX but had to stop because it started to damage my liver. After a break I then went on Sulpha and had to come off that because of a bad reaction when my legs and ankles swelled up so much I had a haematoma and had to be hospitalized. Since then (2 years ago) it's been just anti-inflams and painkillers and the odd steroid injections, the last of which ruptured my tendons in my shoulders so never ever again. Since June I've been in the most awful pain in my neck, shoulders and back (I do have the PA all over) and have been off work for 7 weeks and only went back last week on half days because I was going nuts at home and getting very low. My Rheumy appt has been brought forward from December to this coming week and I'm really hoping they put me on the Anti-TNF as I simply can't take anymore. I think those of us with PA are considered the not so serious pateients but from wht I read we experience just as much pain as those with RA and PA seems to spread more throughout the body.

Good luck to you.

Tracy x

sharmaine

Hi
I'm sorry that you're suffering so much. I hope your GP sorts out your meds soon.

I know absolutely nothing about Psoratic Arthritis. How does it affect you? Is it something to do with your skin?

Having OA is bad enough. I've had some rough times with this and it makes me weep at times. I have high blood pressure too - it was abnormally high for months until my GP sorted it out with the right balance of drugs. I often wonder if pain elevates your blood pressure.

Take care. Hopefully you'll get some relief soon.

Warmest regards and cyber hugs
Sharmaine

psyart

Hi to everyone who replied - sorry not been on for couple days - sundays are normally a wash out!!!! I have been back to the docs and got more antisickness tablets, but they knocked me out!! still - better sleep than feel sick!!!!

The comments you have made have made me feel so much better and that its not just in my head - some of the things said are excatly what I have been feeling - the pain in the joints, with little swelling etc. I have been having problems with my ankles - they have swelled and felt hot, but some joints just hurt right inside??!!!

Milmandy, I was told when diagnosed with underactive thyroid that this was the begining of the end!!!!! thyroid affects everything in the body and I believe this has assisted the PA!!!!!
northumbrian and c4thyg - you have both hit the nail in the head, so to speak!!! I was told that 7% of people who get PA dont have P, and they wont as the treatment will stop it!!! I know what you mean about fatigue - but one specialist said this was in my head!!! luckly I have a good OT who listens to me!! but I do find it hard to understand what is going on as I expect to have swollen joints and readable blood results??!!! thank you for putting my fears at ease!! I have also been changing the way I take folic acid, due to other remarks on here and this has helped!!!

butterfly1 -my heart goes out to you re the lack of treatment that has worked - I hope and pray that your next appointment will enable you to get help and support you need - let us know how you get on and cyber hugs to you!!

sharmaine - PA affects the joints and tendons, sometimes ever the joints in the face!! most people with PA get problems with the skin, but there are few of us who are different and get the PA 1st!!! as the above replies say - it is difficult to diagnose and I think this is why I have found it difficult to accept things. but putting my feelings and fears on here has helped me so much - I feel more settled now in accepting 'arthur' and the problems than I have done in over 2 years - so THANK YOU TO ALL OF YOU AND HUGS AND CYBER KISSESS TO YOU ALL!!!!!

I am better than I was, probably the best I have been for over 1 year, but I have been off work for nearly 5 months!!! I will have bad days - re yesterday, but everyday I try and get into a positive mind when I wake up and just listen to my body!!!!! but some days I just want to stay in bed and hide from the world!!! thankfully these days dont happen so often, so I am lucky!!

again - thank you all for listening and replying

Louise xx

joyful164

josiec wrote:

Hi, I've had a query over a diagnosis of PA for 3 years, although it is very debatable as no obvious evidence of inflammation. Anyway, my consultant did say I could have it as my mum has psoriasis, and apparently the genetic link is there. I don't know if this is a widely held belief, and others may disagree?? Regards, Josie

I have heard this too. Unfortunately not know what was the general health condition of my birth parents, I shall never know.
My foster mother had high blood pressure, so do I.
she also had arthritis, so do I.
the list is endless. so, what do you make of that?

joyful