Psoriatic Arthritis

1962sara

After months of pain and fatigue my rheumatoligist thinks I probably have PA - anything positive anyone can tell me? I'm only 45 and I want my life back! Ideas for living well would be most welcome right now.

Sara

frogmorton

Hi Sara
Welcome to the forum - you will be well-supported here. Anything you want to know, usually someone willl know the answer
I am sorry to hear of your diagnosis. I'm sure it's not what you want to hear, but lots of us on here are 'younger' too, so we do understand the issues you are facing. Maybe kids/work/Other halves etc.
I hope this means that he/she has put you on some decent medication to try to help?
Have you also had time to look back through the threads to find the 'old' PA thread? It has lots of useful information.
Again - you have all my sympathy, but you are in good company here.
Take care and i look forward to seeing you post in the future
Toni x

colinone

1962sara wrote:

After months of pain and fatigue my rheumatoligist thinks I probably have PA - anything positive anyone can tell me? I'm only 45 and I want my life back! Ideas for living well would be most welcome right now.

Sara[/quote

Hi Sara, I'm sorry to hear you have PA and hope your not having to bad a time. You have found a great site I only signed up a couple of days ago the people are great and supportive. I have RA and PA
i suffer from head to foot been like this for years. You eventually get use to a way of life and make your own ajustments im affraid its full of ups and downs. I recomend you tell your Rheumy you want the best thing to slow down the PA rather than try this that and the other. The only positive i can give you is that with me the drugs took away my psoriasis but sadly i still have the PA. You will eventually find other people on here who suffer the same illness ther is not much i can tell you as i never know if its the RA or PA thats causing me the problem. I know its hard to do but try and take it all in your stride nothing happens overnight with this illness it all takes time, and try not to worry that can make you worse, try to stay as stress free as you can.
Take Care
Colin

1962sara

Thanks to both of you. I had a pnuemothorax recently - is that part of PA do you think? Didn't get it properly checked out at the time as I thought it was spasms in my back and was in so much pain I couldn't be bothered with hospital - chest x-ray showed it after the event. I'm taking Diclofenic and co-codamol or the higher dose of codiene when I'm desparate. Should be having an injection in my thumb soon so that will help lots if it works. Rhuemy wants me to go for physio - I've agreed to go for one session and then I'll do it on my own as I'm not keen to have regular hospital visits to keep reminding me that all is not well. He wants to try and treat each bit that flares up instead of steroids at the moment to avoid me feeling ill from the meds - I think that's a sensible course of action for me as I really don't want to feel worse. Not a good two days - MRI yesterday and rhuemy appt today - feel emotionally drained! Feel a complete fool as I cried at the hospital today - not like me to be that weak normally.
Sara

magenta

Dear Sara,
I feel for you completely, you're not having a good time of it just now. Don't worry about crying, it happens to all of us. I cry at nearly every appt. even when I get positive news
Take care,
Magenta x

frogmorton

Hi
Magenta is right - snivel away lots of us do!!!
I hope the rheumy apt went well? Sounds as though they are trying to help you there.
Take care
Toni x

scarlett

Hi Sara

I'm 40 years old and have been diagnosed with PA for about 8 years but think I had it before then to be honest. I've been in some pretty bad places in my mind and body through the experiences of this disease but if it's any help to you I'm on a good regime of medication and seem to be quite stable at the moment. I have tried a lot of things but am steady on celebrex, methotrexate injection and painkillers. I did have a lifestyle change and changed my job and reduced my stress which helped tremendously and now I have a healthy diet and take regular exercise which helps too.

I really hope you get some relief, I've never had to have a course of steroids but have had lots of joints injected and have found that really helpful.

Scarlett x

1962sara

Scarlett that's exactly what I'm hoping for - no oral steroids just local injections. I am definitely going to try and start walking with my pedometre again (used to do 20 miles some days) my dog will be delighted. Walking is fine indoors at home or work but don't you find it's much harder outside? My legs are like jelly! Felt better this week so stopped all meds - OK for a few days but had a rough night and this morning I can feel it flaring up properly! Also unfortunate affects on my bowels :oops: one extreme to the other - don't know which is worse, this or the effects of the codeine! I'm still at the experimental stage I suppose - probably need to resign myself to taking the meds everyday instead of thinking I can dabble. Tempting when you feel better to think it's all disappeared though isn't it? Then I think I better stop the meds incase I don't need them anymore - then WHAM - Viscious circle! Waiting for a thumb brace to be delivered - hope it will make life a bit easier.

Sara

paulab

1962sara wrote:

Scarlett that's exactly what I'm hoping for - no oral steroids just local injections. I am definitely going to try and start walking with my pedometre again (used to do 20 miles some days) my dog will be delighted. Walking is fine indoors at home or work but don't you find it's much harder outside? My legs are like jelly! Felt better this week so stopped all meds - OK for a few days but had a rough night and this morning I can feel it flaring up properly! Also unfortunate affects on my bowels :oops: one extreme to the other - don't know which is worse, this or the effects of the codeine! I'm still at the experimental stage I suppose - probably need to resign myself to taking the meds everyday instead of thinking I can dabble. Tempting when you feel better to think it's all disappeared though isn't it? Then I think I better stop the meds incase I don't need them anymore - then WHAM - Viscious circle! Waiting for a thumb brace to be delivered - hope it will make life a bit easier.

Sara

Hi Sara

I am 37 and have had PA for 10 yrs after first pregnancy but looking back I probably had signs of it as a teenager. After years of trying diff drugs I am now on Humira (fortnightly) and Methotrexate inj (wkly) and have never been better! I started HUmira in Mar 2007 and noticed a big imp within days and it has continued. It does take a while to find the right drugs to work and what works for some won't for others. Painkillers are sore on the stomach but unfortunately are a necessary evil! Hope you get sorted soon.

Take care.

Paulab

colinone

paulab wrote:

1962sara wrote:

Scarlett that's exactly what I'm hoping for - no oral steroids just local injections. I am definitely going to try and start walking with my pedometre again (used to do 20 miles some days) my dog will be delighted. Walking is fine indoors at home or work but don't you find it's much harder outside? My legs are like jelly! Felt better this week so stopped all meds - OK for a few days but had a rough night and this morning I can feel it flaring up properly! Also unfortunate affects on my bowels :oops: one extreme to the other - don't know which is worse, this or the effects of the codeine! I'm still at the experimental stage I suppose - probably need to resign myself to taking the meds everyday instead of thinking I can dabble. Tempting when you feel better to think it's all disappeared though isn't it? Then I think I better stop the meds incase I don't need them anymore - then WHAM - Viscious circle! Waiting for a thumb

brace to be delivered - hope it will make life a bit easier.

Sara

Hi Sara

I am 37 and have had PA for 10 yrs after first pregnancy but looking back I probably had signs of it as a teenager. After years of trying diff drugs I am now on Humira (fortnightly) and Methotrexate inj (wkly) and have never been better! I started HUmira in Mar 2007 and noticed a big imp within days and it has continued. It does take a while to find the right drugs to work and what works for some won't for others. Painkillers are sore on the stomach but unfortunately are a necessary evil! Hope you get sorted soon.

Take care.

Paulab

Hi Sara Cry all you want love this can be a most depresseing illness and it leaves me drained all the time. You will feel a little better once you come to terms with it , I Do, but slip back from time to time. What i do when I'm really depressed is read the kids entrys that sorts me out in no time. I think writing stuff like this is good one minute you can't help yourself and the next your offering help and support to others. However your in the right place to get all the support and encouragement you need, a great gang of people who you can talk to at any time as you can see. keep thinking happy thoughts and by the way santa will be here soon. Take care Sara
Colin

frogmorton

Also bumped up for Sabreena
Toni x

joyful164

I was diagnosed with this 4-5 years ago eventually after a previous 4 years of intense pain walking.

First being diagnosed with torn ligament and then various other ailments including Gout. Having to take drugs for gout for several months and theside affects these gave me wasn't pleasant

I was put on Methotrexate which, I was informed, would help put the disease into remission. Obviously, there would be occasional flare up. I had it in my wrists, hands, neck and feet at the time.

I am on Methotrexate injections 15 mg and also take lots of other medication also.

At present, my feet seem ok but I am going through a very bad time with my neck and arms and waiting for a Pain Clinic Flare up.


All I can say is that you learn to look at life in a different way. You have to learn when to rest and look at all the ways to help yourself. Get referred to your Occupational Health Dept for instance. Apply for Disability Living Allowance. Give your answers as if you are having a bad day. Apply for your blue Badge.
These are all ways to help you cope with your condition.

I was about your age when I must have been experiencing the beginnings of Psoriatic Arthritis and but it wasn't diagnosed propery at the time. This may be why I am suffering so much now.

You just have to think positively about everything you want to do and do it to the best of your ability. Good luck.

Joy

woodbon

Hello, Just to wish you well, I have OA and i'm 54, but I feel for you so much. Hopefully with the right treatment, you will get your life back, or at least learn how to do the things that you really want to do.

I cry a lot and feel sorry for myself. Sometimes I find it sort of helps me get rid of some of the anger and negative feelings. So I can try again. I hope our support helps a bit, some people will have more experience of your problem than me, I know. Love and my very best wishes Sue

helpful

1962sara wrote:

After months of pain and fatigue my rheumatoligist thinks I probably have PA - anything positive anyone can tell me? I'm only 45 and I want my life back! Ideas for living well would be most welcome right now.

Sara

Hi Sara

I really feel for you as I am 40 and have had PA for seven years now. But you really can help yourself - when you go to your rheumy exagerate your pain cos it always feels better when you are in the waiting room then when you are home. Also, listen to your body and dont overdo it. I always get flareups when standing and working too long.

I am on mtx and prednisolone and just started enbrel so hoping it will be good. In the earlier years my doctor use to put me on short doses of prednisolone and I alway found that it just hit the flareups and when I weaned myself off the prednisolone I was ok.

Look after yourself as you are very important, keep taking your meds as you need to keep the inflamation down not to ruin your joints - keep cheerful, life is still good - I can sometimes even forget I have PA

Keep smiling

Abi