first post, hello all. sorry for long post!!

philozz

Hello everyone, first time I have posted here.
I am 37 and have psoriatic arthritis. I have had this for around 9 years now.
I am getting a bit lost and depressed about things and felt there was nothing I could do. I am glad I have found this forum
I was put on methatrixate at first but it made me ill and depressed with bad mood swings. The consultant would not listen and jsut said it will pass.
I stopped taking these after around 8 months and just got on with things.
Around 3 years ago I went to see the GP because my fingers were getting worse and my knees were sore.
Was sent to a new consultant at darenth valley hospital.
They gave me an injection that seemed to work very well and agve me a different drug.
Since then my follow up appiontment has been put back 5 times.
I am taking no treatment at all and my fingers have all swollen up, I cannot wear a wedding ring anymore. My wrists are starting to hurt and swell as well now.
I read that doctors can refere you to physios etc, but my gp has never mentioned any of this.
How do I go about getting help?
I am trying to ingnore it and just get on with life but my arthritis is really starting to effect my life now.
My wife says I am just complaining when i mention things hurting, so I stay quiet about the pain most of the time.

Thanks for reading.
I think I probably just need a goo kick up the ****!!

lindah

Sorry don't have p.a but just wanted to say hi and welcome.
Someone will be along shortly who can relate to your problems and they are a great bunch of guys and gals
Come on here and moan,groan or occasionally to pass on good news and the support is brilliant
Linda H

mistywillow

philozz wrote:

Hello everyone, first time I have posted here.
I am 37 and have psoriatic arthritis. I have had this for around 9 years now.
I am getting a bit lost and depressed about things and felt there was nothing I could do. I am glad I have found this forum
I was put on methatrixate at first but it made me ill and depressed with bad mood swings. The consultant would not listen and jsut said it will pass.
I stopped taking these after around 8 months and just got on with things.
Around 3 years ago I went to see the GP because my fingers were getting worse and my knees were sore.
Was sent to a new consultant at darenth valley hospital.
They gave me an injection that seemed to work very well and agve me a different drug.
Since then my follow up appiontment has been put back 5 times.
I am taking no treatment at all and my fingers have all swollen up, I cannot wear a wedding ring anymore. My wrists are starting to hurt and swell as well now.
I read that doctors can refere you to physios etc, but my gp has never mentioned any of this.
How do I go about getting help?
I am trying to ingnore it and just get on with life but my arthritis is really starting to effect my life now.
My wife says I am just complaining when i mention things hurting, so I stay quiet about the pain most of the time.

Thanks for reading.
I think I probably just need a goo kick up the ****!!

Hi Philloz
Welcome to the site it is such a helpful place to talk about your worries and get some really valuable information. Everyone understands here how difficult and wearing it is to be living in constant pain. It may be that because your wife can't help your pain she dismisses it as she does n't know what else to do.
You should not ignore your pains, arthritis needs treatment not only for pain control but also to prevent as much joint damage as possible.
I think you need to hot foot it back to your GP and explain the situation. perhaps you need to tell the clinic that you will accept a cancellation appointment at short notice as they often have these. Either way be persistent. There are many different drugs to try if certain ones do not suit you, and frequently there is the initial period of getting through the side effects but there will be one that helps you without the side effects being worse than the disease.
Physio will not necessarily help with the pain but will help with joint mobility and also give you some ideas as how to manage your situation. (I used to be one in my working life) but i know there are often long waiting lists. It is still worth while asking your GP to refer you to physio AS WELL as trying to get your appointment brought forward, NOT INSTEAD of.
Hope this helps. I am sure others will come along soon and give you their advice, it is early on a Sunday morning and we did lose that hour
All the best take care and keep in touch
Gill

colinone

Hello Phil
I have PA to, along with RA just to keep it company. I think most people who find this site are going through a bad time hence the search for help you sound really p---d off mate but it can get you like that that. Gill has made some really good points that should help you in the right direction. Sadly you cant just get on with things or your condition will worsen. You have to be pushy and forward with the GP and the rheumy, phone the rheumys secretary and tell them you are desperate for help and tell the GP the same thing but keep on pressing them until you get it. I know its not the way it should be Phil but !!! Regarding the drugs I have had the PA for 30 years and taken many many drugs I don’t think there is one that does not have side effects. I have been on methotrexate for years and just been taken off it so I know how you feel about that. But all drugs don’t effect all people the same way, and what doesent work for one will work for another. With most arthritic conditions it is trial and error to get the drug that suits you best. Once you get back into the system and get some help you will start feeling more positive. I know it all takes time and at times it seems like a long and difficult road but you will get there. The other thing you find as I did is that when you get on the right course of treatment your Psoriasis will also go away that was fantastic for me. Regarding the swelling your GP should be able to give you something to reduce it. It happens because your PA is becoming more active and some of your joints and bones become inflamed it can also give you lots of muscle pain. I am not suggesting you ask for this drug but you might ask your GP about PREDNISOLONE it is often used as a tide me over drug similar to that injection you had it can have one or two side effects but they are outwayed by the relief you get. I have been on this for over a year. Regarding your wife LOL the biggest problem with arthritis sufferers is they don’t look ill and most just try to get on with things despite the pain and the ill feeling you can get from it. I think this clouds peoples perceptions. Try not to overdo things things and take it easy when you can infact you need to make the time to look after yourself if you rest you often feel better. Well I’m sorry for such a long post if you need to know anything drop me a line. A few lines away from your post is a post called (Hi )it’s a woman in the same boat as you who is also new to the site, might be a good idea to drop her a line Keep your chin up and take care, Keep us up to date with whats happening to you.
Colin

petmad

Hi philozz, welcome to the forum, I have OA, but like you found the forum when I was at a very low ebb and in need of advice and support.
As the others have recommended I would head off to your GP and start requesting appointments. I asked mine to refer me to the Occupational Therapist for splints as my thumbs and wrists are useless and sore. Make sure to ask them to include the information that you have arthritis.
as for your wife's sentiments, I think it is very difficult for non sufferers to understand the impact of arthus. They think it is like a headache and if you take the tablets all is well. I know from personal experience that it is not and indeed domineers our every day activities.
You have arrived in the right place to receive the support we all so badly need. Linda

colinone

Phil one last thing I thought I best point out to you before you go running to the GP asking for prednisolone lol. Prednisolone is not considered a long term drug although it has been affective in the treatment of arthritis for many years. Long term use ( I don’t know what long term is I’ve been on them for over a year just had the dose increased ) I know one or two been on them for several years. They can cause tummy problems and softening of the bones, You need to take a type of antacid tablet for your tummy and after a length of time you have to take a calsium tablet for the bones. Oh the joys of Arthur take care mate and don’t forget to keep us posted.
Colin

livinglegend

colinone wrote:

Prednisolone is not considered a long term drug although it has been affective in the treatment of arthritis for many years. Long term use ( I don’t know what long term is I’ve been on them for over a year just had the dose increased ) I know one or two been on them for several years. Colin

Medicines and their possible side effects can affect individual people in different ways. Prednisolone is a long-term drug, I have been on it for over 9 years now and Rheumy says I have to take it forever.

If you take it for longer than 3 weeks, then you can't just stop. You have to have the dosage reduced over a period of time as the body needs to start up its own supply.

More info at http://www2.netdoctor.co.uk/medicines/100002901.html

Joseph 8)

colinone

Hi Joseph I think we all worry about the long term effects of drugs and i have met others who have been on prednisolone for years. I know that in the 50s it was the answer to arthritis like some modern drugs. My rheumy said if i was new to arthrits today they could do more for me with the drugs they have now. but alas 30 years into and not being so young anymore i offten wonder what long term is. For me the prednisolone does have some effect and it can get me through best part of the day but i do suffer with side effects and my surgeon wants me off it. The rheumy started reducing it and i got down to 6mg a day but he put it back to 25mg a few weeks ago. the problem is the effects of the drug on the pain outway the the side effects. Take care
Colin

elnafinn

Hi Phil

I am sorry to hear that you are in a dark place at the mo and no wonder. I would be feeling the same too in similar circumstances.

It is good you have found this forum, it is the best thing since sliced bread for a many of us, at least here we feel we are with like minded people and we all have that bond - "Arthur" aka arthritis in one form or another. All ages too and we try to help out and if we cannot we know where peeps are coming from with how they are feeling. Sympathy is dished out in bowlfuls here.

You must get back to your gp and get a reaction to your problems. You talk about a consultant you have seen. Have you been referred to a rheumatologist? This is the person you should be seeing and often there is a rheumy nurse that you can contact inbetween appointments if you are worried about anything or have questions that need answers.

There is no need to struggle on alone. You should be on medication to slow down the arthritis as well as making life more bearable.

I am sorry to hear that your wife is not too sympathetic but you have found this forum now, so you will no longer feel so alone with all this.

The one thing you do not need is a kick up the backside! Some TLC more like!

Look after yourelf,
Elna
Elna

lindalegs

Hi Philozz and welcome to the forum,

Don't be hard on yourself the only one who needs a kick up the jacksy is arthur and there're a queue of us waiting to do that :shock:

The problem your wife has is that she can't feel your pain, I would think the majority of us keep quiet about how bad the pain is, I suppose we just grit our teeth and carry on.

You must be feeling a bit grim if you're on no medication and I worry that when you came off the Mtx they didn't put you on another Dmard as these help prevent the awful deformities we get with arthritis. You need to go back to your GP/Rheumatologist and get something sorted out - you're a young man and don't want arthur taking over your life if you can help it

Hope you get some help soon.

Luv Legs

vonski

Hi Philoz

Welcome to the forum. All I can say is go back to your Dr. and explain the amount of pain you have and the swelling too. Tell him/her that it's now harming your quality of life. Hopefully he/she will then say we can do?????

You can always come on here and moan at us, other halves don't always understand, it takes a while

Good luck
Vonski x

hezmarie25

Hi
I dont have PA but just wanted to say hi to you.
Keep smiling
Heather

woodbon

Hello, I have oa, but whatever the cause pain is pain and it gets you down sometimes. I hope you soon start to more able to cope and positive, I'm sure you will . This is a good place to moan, we all do! Love Sue

jackie1955

Hi philozz,

Just saying hello and welcome. I'm due to start methotrexate soon - gosh had better warn OH I may get 'mood swings'........ :!:

Jackie x

marie48

Hi

I hope you feel better soon. Sorry to hear your wife is not sympathetic. I find it is the same with my husband, he tells me to stop moaning, there are some people worse off than me. I think you should be able to talk about your pain to people. This forum is great for you to moan and complain as much as you want. We are good listeners and loads of cyber hugs from yur fellow suffers. Take care. Marie X

plmb48

hi phil
welcome to the fourum i think people dont understand us with RA/OA and all sutch things because everyone i know allways seems happy me i am happy just to get through the day popping pills is now a way of life spraying sprays being constipated having the runs blood tests DR app hos app.
if we didnt smile and laugh when we can we would spend a lot of time crying not that we havent all done that from time to time but then you think you have to make the best of our lives and we smile get on with it and see what the next day brings may be a good day pauline

philozz

Hi all thanks for your kind words. I will phone the GP monday and get an appiontment.
Let you know what they say.
All the best
Phil