just found out it is pa

[Tracykim8]

i have been getting treatment for inflammatory arthritis for a year now.doctor told me a year ago i had inflammatory arthritis but never put a name to it.i had seen him 6 months before but he was not sure what it was as my swelling had gone down and with no visible signs apart from high esr levels.so he sent me for tests and to come back in 6 months.by that time i had more swelling and a sausage toe as he called it.he gave me a steroid jab and Sulfasalazine.by the next time i saw him my knees were bad and my thumb was twice the normal size.he then give me mtx as well.as time has gone on i am feeling better  but esr levels are still high.i guess i will never be back to my old self due to the number of years the doctors just fobbed me off.it took then two and half years (which is good going after reading some of the posts om here)i went to the hospital last Tuesday and saw a women doctor .she looked at my hand and saw a mark on it .that was when she told one i had pa and then everything fell into place.i came home and looked it up and then came across this web site.i have had bad skin around my navel and lower back for years but never went to the doctors about it.when i first went to the hospital he asked me had i had Psoriasis and me not really knowing what it was said no.i now realise you have to tell the doctor every little thing even if you think it is not important.we have to give them all the information and let them decide.i feel so much better knowing what i have .in the beginning it was very hard and with the doctors fobbing me off i would go away and try and get on with things.which was hard trying to bring two kids up on my own.the rheumy never saw me when i was at my worst.in the 2 years before i saw him i was barley able to climb the stairs at times.i thanked the lord for my kids and my ex husband .sorry if my post has gone on a bit.i am so glad i saw a very good rheumy who knew what it was without me giving him all the facts.i still never told her about my Psoriasis when i was at the hospital as i dint realise until i got home .i must sound so stupid.will tell rheumy nurse next time i see him.the doctor told me to keep an eye on my hand.i wish i had told her about my Psoriasis now.but as i said i did not know what it was until i got home.is it that important that i phone my rheumy nurse or can it wait until i see him in two weeks .sorry to be asking all this.

[TJB]

Hello Tracykim and welcome!
I always ring the Rhuemy when i have a query, especially as its all still new to me too!
You could also ask your GP, now you have been diagnosed, he will be able to advise too.
Hope you get on ok.
Tracey 

[scozzy]

Hi tracykim,

Ring him & get answers! no question is to silly or naive & now you know what you have you can educate yourself & maybe him/her a bit too! you'll know better than anybody whats going on with your body so tell them & give them a chance to help with all the facts at hand,hopefully you can develop a relationship where you both benefit...

good luck

[LondonKate]

Welcome to PHO Tracey! ..I'm so sorry you went through that all on your own, it must have been very difficult. But you can get PA without the skin disease as I have, and a handful of others so this should not have been a problem so don't beat yourself up about that!

Alas for us,  doctors are human, just like the rest of us have imperfect knowledge and what they have is sometimes applied incorrectly....PA is finally receiving more research attention and so hopefully its profile will increase and Drs will cease to be quite so wilfully ignorant. That doesn't help you at all though  but thank goodness you have met a consultant who knew what she was doing.

What treatment does she propose for you? Or are you still in the investigative stage?

Here are a couple of leaflets which will help you one which is about psoriatic arthritis generally, and another about the drugs that you can be given for it.

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The same site has information about specific drugs when you know what you're going to be prescribed. Finding the right drugs for you often requires a lot of patience and more time than you would like. But mostly everyone here with the exception of a few unlucky souls, have benefited from the drugs so there may well be some alleviation of your symptoms and the level of inflammation in the not too distant future!

Do you know what your information level is? ESR ? It pays to be an educated patient when you have a chronic and potentially progressive disease, something which you may not be quite ready to hear yet... but all of us will help answer questions or point you are appropriate sources of information

Welcome on board, glad to have you here and you need never be alone with your PA again!

Kate

[Tracykim8]

thanks for the replies.first doctor gave me Sulfasalazine about 8 months ago.could only Tolerate 4 per day and as my esr levels were not going down i was given mtx as well.i am taking 20 mg a week.esr levels not going down as they would like.they keep going up and down between 69 and 51.i dont know if that is high or modrate.it is like a guessing game every fortnight to see what they are.i would love to know what there were at my worst but never saw the doctor at that point.i am getting better but still get bad days.thats way better than bad months on end.guess we all have to take each day as it comes and there is light at the end of the tunnel.

[moanalot]

Hi, welcome to the patch. Its all a learning curve as they say and most of us here have had the short end of the stick. Fel at home and yak away. we are all ears and open hearted.

[flecksable_flyer]

Hello! Welcome to PHO. Like you, I had P, but it was diagnosed after I thought I was having an allergic reaction. The derm neglected to tell me that there was any connection to arthritis. Several years later the arthritis cropped up after carpal tunnel surgery. I think that when derms diagnose P, that PA should at least be mentioned, or it should be mentioned in that stack of pamphlets they all seem to want to hand out. I'm sorry it took so long for you to get the right doctor and the right treatment. I hope things start going up from here.

Sabra & Surrido

[LondonKate]

Hi Tracey, those are quite high inflammation levels and would seem to require more aggressive treatment than you're currently receiving! I'm not surprised that you're sore!
I think you should probably pressing for the next step in treatment, which will be the addition of enbrel to the mtx. Combination therapies can be very effective according to research literature

Here is a link to give you some information on the medication. This is one of the new biologic treatments and it's something of a palaver to start as it's quite expensive. But your continued inflammation levels would seem to indicate it. What was your GP say on the matter? Are they happy with the continued high inflammation rates? it's perhaps worth discussing with them?

What size of hospital are you attending? And how many rheumatologist are there? it is a small hospital and not used to this type of arthritis it might be appropriate to ask for second opinion in a much larger teaching hospital. But this is something to discuss with your GP

If you have the time messages that you browse through the information that is held under PA links above? lots of information there which might help information there