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Date: 06.06.2013
From: Christine

Subject: Hello

Hi all, I was diagnosed in April 2012 with PA aged 36, I had P in my teens and back problems from early 20's. Doctors always told me to lose weight! I lost a lot of weight when I was 30 but this did nothing for my pain. Saw an ortho doc for my back, had various injections and pain relief, the injections offered very little relief and I reacted badly to a lot of the pain medication. My finger began to swell and became extremely painful but my doctor didn't agree that it was swollen, fat fingers! Eventually referred to rheumy who diagnosed PA. Started on Methotrexate and Folic Acid which I am still on now, and only over the counter pain killers (which do nothing for my pain). The methotraxate makes me feel awful, but I generally go to bed not long after taking them. At my last visit my rheumy suggested moving onto sulfasalazine but wanted to try some physio first. My areas affected now, 1 year on, are lower back, shoulder, neck, hip, knees, ankles, toes, feet, achilles, wrists and fingers. My left side is the worst. I go back to see my rheumy at the end of June and am hoping they offer me some other pain relief.
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Date: 06.06.2013
From: Deborah

Subject: Re: Hello

Hi Christine,
Sorry to hear you have been diagnosed with PA so young and by the sound's of it you have had it a lot longer but it is that hard to diagnose.
I have PA for 13 yrs now (had it since age 33) I know exactly how you feel and although PA is rare in the back I have it too in my lower back and am laid up at the moment with it in fact if it's not better tomorrow I am going down to a&e as the pain is quite unbearable. Although I think my body has got used to my drug's and I need another change so will have to see my Rhumy as soon as.

It will take time to try various drug's that will suit you but you find something that will help a bit. The methrodrexate when I started it was a small dose and over the year's was increased to 25mg and I have been taking this dose for 9 or 10 yrs can't remember exactly but I felt very sick with them and found the injection even worse but they gave me anti sickness tabs which has really helped with the sickness so you should ask your rhumy nurse for them. I found the methrodrexate was very good at the start but the last couple of years it has not been so effective but again that is maybe just my arthritis getting worse as it is quite severe in our family and everyone is different.

Just wanted to ask you what did the ortho say about your back and what kind of injection's did you get as I have a funny feeling that is we're I am headed next. Also I was only 7 and half stone when I was diagnosed in the beginning so I don't think weight make's much difference.

So let us know how you get on and look after yourself Deborah x.
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Date: 07.06.2013
From: Christine

Subject: Re: Hello

Hi Deborah, thank you for your reply. Sorry to hear that you are suffering at the moment, hope your back eases soon for you.
When I finally got referred to physio for my back problems the diagnosis was facet joint problems, so the first injections were in those joints, but that had no effect, my pain was more in the left side and I had further injections there, some steroids, which helped for approx 3 days but nothing long term. This treatment was in one hospital, but when I started with pain in my fingers I was referred to another hospital. When I told my ortho doctor about the possible arthritis I received a letter from him to say that nothing they were doing was helping and therefore they could not recommend any further treatment and discharged me. So now I am just under the Rheumy doctor/nurse. I've had a bone scan and a few xrays with them, but would like to have further scans because I feel that the arthritis is more advanced than when these were originally done.
I've not had my methotrexate for 2 weeks now because my white cell count and neutrophil count was low, I can really feel the difference already from not taking them. Just waiting for my gp to ring with the results of my latest blood test.
I cried when I was first diagnosed with PA because I thought I was far too young to have arthritis, but reading about everybody on these forums shocked me, so many people much younger than me going through it.
Take care x
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Date: 08.06.2013
From: Deborah

Subject: Re: Hello

Hi Christine,
Sorry to hear that you have not be able to take your mtx but hope that your blood test will be ok so you can take it.
You have really been through the mill from your experience's and I am sure you are nearly at the end of your tether too.
I too got so shocked by how many young people on here have rheumatic disease's it is so sad.

From your experience I don't think an ortho doc will be much good for me.
I cried too when I was first diagnosed it's a horrible disease to have, and I too thought I was to young and to be honest we are as we still have a lot of living to do. I think the only thing that keep's me sane is the fact I am not alone.My son who is 27 has arthritis has had it since aged 23 had to give up his full time work and take part time work he is terrified that he will not be able to keep it up.
We are both on bio logics and to be honest not helping us much although I suppose if we were not on them it would be worse.what a life you just get so fed up not being able to help yourself by going out to work making your own money and leading a normal life meeting people etc and living with so much pain all the time it can get you down because it's not to say that you can find thing's to keep you occupied as I am limited to what I can do.

Sorry if I sound a bit down but had it in my head that if there was something else wrong with my back it could be fixed but wishful thinking.
My son and husband made me go to casualty today the usual tablet's etc it's just a flare up of my arthritis so just have to take it easy but have been doing that for year's.

Christine thank you for your reply and letting me know your experience with an ortho doc and chin up look after yourself and we will hope that they can invent something that will help this disease by a least half anyway.

If you feel like a chat I am here good luck with your blood test Deborah x
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Date: 10.06.2013
From: Christine

Subject: Re: Hello

Hi Deborah, bloods ok, so back on the MTX!
Hope you're feeling better today and are taking it easy.
It's awful that your son has it too, that is my worry, that my children get it. I think my mum suffers with PA also, but she was always told that her joint pains were wear and tear. I believe that she is getting worse but I am not in touch with her at the moment so cannot advise, not sure she would listen anyway.
I'm having a better day today, had a really rubbish day yesterday, but we have to take the rough with the smooth.

Take care xx
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Date: 12.06.2013
From: Deborah

Subject: Re: Hello

Hi Christine,
I am so relieved to hear your blood's are ok, which Mean's you can go back on mtx again because I think if it was not for mtx we would be in a lot worse shape.

Glad to hear you had a better day yesterday I think that with an illness like this you have to look forward to the good day's it's what keep's me going.

I know it is a worry with this form of arthritis that our children do get but I am the only one of my sister's who have it and my other son is fine so I think it's just whoever's gene's we inherit.
So really hope your children don't have it but it is still a worry I know.

Hope your mum does not have pa but then again we have to get it from some of our parent's as it is hereditary.So if you get to see her just ask her.My mum was crippled with it too in fact my son is the fifth generation to get it that we know of.
Sometime's wonder how my great uncle coped with the pain in those day's I think it might have been around 1910 to the twenties so would not have much treatment in those day's.

Speaking of taking it easy I am moving house next week can't wait to get into it but I am the dreaded packing stage so am just doing a bit and then stopping as my back get's so painful and I know to stop but at least I have a bit if time.

My back is ok if I don't stand for to long so it has eased a bit thank goodness thought cannot understand why it has got so bad maybe the arthritis is just getting worse but a least I don't have the real bad pain which is good.

So a least we feel a bit better so take care and I promise I will be taking it very easy over the next few week's Deborah.
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