First visit to site - hello

janetA

Hello my name is Janet and it's my first visit to this site. I was diagnosed with Psoriatic Arthritis 5 weeks ago and am feeling wretched. It took my doctor 20 weeks to refer to to the hospital. First 3 weeks on steroids which did not touch the problem at all. I am now on Methotrexate and took my second dose last Thursday. It completely wiped me and the whole weekend out. The only way I can describe it, and I am really not exagerating, is that it felt like being buried in my own body. I was there but when I looked at my eyes in the morror there was nothing, no life just total blankness. This isn't like me, I am usually bright and bubbly and outgoing and it's really getting me down. I dont cy but I sobbed for 2 hours yesterday. My poor husband doesn't know what to do with me.

Will this 'tiredness' get better with time, will I start feeling like a human being again any time soon?

Thank you for your support

lindalegs

Hi Janet,

Welcome to posting on the forum.

Your tiredness should improve as your body gets used to Mtx as the side effects usually do settle down.

You'll get fatigue with your PA too but as the Mtx takes effect it will help to get this under control too along with your other symptoms.

Rest when you can whilst you're going through this. My mantra is 'do a bit and then rest a bit' and then on bad days 'do a bit and rest a lot'.

You will get to feel better and your tears are perfectly normal as you're on an emotional rollercoaster at the moment.

Others will come along and help to advise you.

stickywicket

Hi Janet and welcome from me too.

As Legs has said, both the arthritis and the meth can wipe you out, unfortunately. Meth can take some weeks to kick in, as I'm sure you've been told. I don't have any problems with it apart from the occasional 'exhausted' day, usually the day after I've taken it but sometimes the day after that. Were you OK with the initial dose? Was it just the 2nd? If you're very concerned about it you could ring your rheumatology nurse just to check but hopefully things will settle given time - and virtually all these strong meds need time.

If you're new to the whole arthritis stuff that's a lot for both body and mind to adjust to. Just try to take things as easy as you can and remember we're always here for a bit of moral support.

hileena111

Hi Janet
Welcome from me as well.....sorry I cant help with PA ...I've got OA but there are plenty of people that can help you on her
Love
Hileena

dachshund

Hi Janet.
welcome to this lovely forum the ladies and gents on here are kind and very helpfull anything you are worried about just say
and i'm sure some one will have the answer.
i cannot help as i have oa i know how you feel about being worn out.
take care. joan xx

frogmorton

Oh Janet

Bless you heart!!

this tiredness is part of what they want to help you with.....(unless it is only since teh mtx??? If so those effects SHOULD subside with time).

So so sorry to hear how poorly you obviously feel. You poor husband must be beside himself with worry for you too.

The idea of the meds is to dampen down your PA symptoms to the point ideally where they would call it remission when you feel very little pain or stiffness and you can pretty well go about your normal daily life

The problem is finding the right meds at the right dose for the right person as we are all individuals.

Please do keep coming on here Janet and we will do our very best to support you while this all gets sorted.

I expect these posts will make you cry....they did me when l first came on here. I cried because someone understood me and l didn't feel alone any more.

Love and HUGE real hugs

Toni xx

dreamdaisy

Hello, it's nice to meet you and I am pleased you have found us - but also sad that you have PA. I too have it (I am much further down the road than you) and I have no doubt that you are still struggling with the shock of it all. No wonder you have been crying - I reckon all of us do from time to time.

PA is foul (as are all the As) and the meds for the immune-based ones are strong because they have to be. I hope your body will adjust in time to the meth and that it does begin to help - it can be a very effective treatment if it suits you and I hope that in time it does, and it is. Tiredness is a side effect of the meth, it can also be a sign that the arthritis is active. One strategy for coping with it is to rest whenever possible, do not over-exert yourself.

You have had a shock, no doubt about that, but your GP referred you, you have been diagnosed and the meds are in place. Your emotions are understandably all over the place and may well be for some while yet. Accepting this disease is not easy, coping with it is not easy, dealing with the meds is not easy but the forum can help on all of those fronts.

This is also a shock for your husband: men like to fix things but arthritis is one thing that cannot be 'fixed' as such. Arthritis not only affects the person who has it, its ripples spread throughout. Most of us on here will have navigated (or are navigating) difficult family relationships so we know about that too.

Give yourself time, give the meds time, be kind to yourself, come and talk to us. We know what it is like. Take care. DD

Ankyspond

Hi,

Well the peeps above have said it all but just wanted to say welcome, stay with us as you will get lots of support from people who REALLY know what you are going through.

Keep talking to your husband and friends, when you get your meds right it will hopefully get better. As for the tears I think i am safe in saying that eveyone of us on here still gets tearys so don't worry about that 'better out than in', I am on Meth and it can take up to six months to get into your system to don't give up on it.

Hope you feel better soon, Anky 43 with AS but feel like 93 ha, ha. xx

debsmartin

Hello Janet and welcome, I do hope that the methotrexate side effects settle down for you soon and you start to feel alot better. I know it can be very yukky to start with but it does settle down.

debs

woodbon

Hello, I'm glad you've found the forum. Sounds like a rough old time you've had. Anyway just to say welcome and love Suexxx

magenta

Hi Janet,

I'm sorry to hear how ill you've been over the last few months-it must have been quite a shock to discover you have PA.
You will have days like you wish you could stay in bed all day but you will also have many, many good days. We are all here to help and support you.
I don't have PA but fibro, OA and sero-neg arthritis, but I know exactly how you're feeling as will everyone else on here.

You will get through this, promise
Take care,
Magenta x

valval

hi no advice just wanted to say welcome and hope it settles down soon val

suzygirl

Hi and welcome to the site. I am sure you can see what a lot of support this site provides. Keep posting and let us know how you are doing. It helps to share with others who understand, and I have found it stops my poor hubby from being overburdened!!

Its hard to come to terms with a chronic illness, it takes time unfortunately. A lot of emotions are expereinced and it can be quite frightening. I hope the meds can be sorted to give you some relief soon. That too takes time to get the right mix of meds, once that is sorted some sort of normality can be resumed.

Take care

janetA

WOW, wow, wow. Thank you all so very much, I am over whelemed. What lovely people you all are. I thought I was and felt so alone.

I rang my specialist nurse at the hospital yesterday to talk to her about how I was feeling.

Without boring you all with all the details before I was diagnosed the doctor was pumping me full of anti inflammatories and tramadol. The tramadol caused severe constipation to the poin that when I did manage to go to the loo I tore myself and lost over a pint of blood and ended up in the emergency room for 5 hours. That has now sorted its self. I had blood tests yesterday morning to see how I was coping with the meds (listen to me using the jargon already!!) and it has show that my iron level is dangerously low which can be part way accountable for the severe tiredness. The nurse said that if I was to have another bleed it would be dangerous for me. I now need an iron supplement (which will make me constipated!!) She wanted me to stop taking the Methotrexate until this is sorted and I have said no, have I done the right thing??? I dont want to set myself back by 2 weeks only to go through this again when the iron is sorted. She has agreed and is increasing the folic acid to 6 times a week. Oh and to top it all my filling has dropped out so an hour with the dentist today - Hayho as my grandad used to say just keep never minding. Thanks again to all of youxxxx

traluvie

Hi Janet,

I am sure i posted yesterday to welcome you, but by the looks of it i never..So welcome from me too..
Looks like your going through the mill at the moment, but this forum is a great place to talk as we have an understanding..
Regarding the meth i am not sure if you have done the right thing or not as i am unfamiliar with it, i am sure someone will be able to advise you on that..
It can take a while for our body to readjust and to find the right balance , hopefully with the right support you will get there..
Feel free to post any questions you want to ask..there are lots of people on here with a good insight into arthur and have many years experience..
Wish you well and keep us posted on how you are..x

janetA

Thank you Tracy. I am trying to stay positive but it's not easy. I just dont recognise myself at the moment and I wish people who dont have this and have no perception of what I am going through would just shut up. I know I should eat better, I know I shoul drink more, I know I should rest I know I know so stop telling me then expect me to do the ironing!!!!!
I sound like a right miserable old **** dont I - sorry!! My mums answer to it all - take a tonic, it worked in my day!!!

dreamdaisy

Anaemia is a factor with arthritis, I don't see why you have to stop the meth, so if you have the iron tablets begin taking them, increase your iron intake in your diet and ask your GP for something like Movicol or Docusate. Movicol is a powder which you mix up with water for a small fizzy drink, docusate comes in little yellow and white capsules which are easy to swallow and you take four a day: both gently ease constipation (it troubles me from time to time due to the cocodamols, I have docusate and can usually cope with just two a day when it's a bother).

Have you also heard of a prescription pre-payment certificate? This can be bought annually, paid for three monthly or monthly and it saves those who have to pay for their prescriptions an absolute fortune. Your chemist will have the details and there must be info on the web somewhere. I am not tecchy enough to provide a link. :oops:

traluvie

It is hard to stay positive, i understand that,, no1 expects you to be smiling and jumping for joy..
I just wanted to reassure you that it does get easier, i have been in the dark place you are now when the person looking back at you in the mirror is unrecognisable..in time you will find the right balance and at least you can talk to us on here anytime..
Not sure if you have heard of it but there is something called the spoon theory that myself and many others have used when trying to explain arthur..have a look and maybe print a few copies off and give to family and friends you may be surprised by there reaction..

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

janetA

you are all just lovely. The prescriptions have cost me nearly £400 so far and I only work part time. I am trying tokeep working, giving myself a reason to get out of bed and get dressed but it's getting harder. I work for a very small family company and they rely on me to do all the office admin but sometimes I just want to sit here and either go to sleep or just cry

stickywicket

Ah a tonic! Yes, I remember the days when ‘a tonic’ was allegedly the answer to most things (And the cure for none).

The iron’s more likely to help and, in more recent times, I’ve found they neither upset my stomach nor constipate me though, as DD has said, the latter’s soon sorted.

You’ve a lot to take in, JanetA. Give yourself time. The Spoon Theory is a good way of explaining to others. And work out just how much ironing is vital – and who can iron their own stuff.

janetA

first time I have laughed in weeks and weeks - love to you all xx

janetA

I have just read the spoon theory, cant cry as I am at work!!! I have sent it to those closest to me and never mind it explaining things to them, in my early days of diagnosis and trying to come to terms with PA it helped me too - thanks to those of you who told me about it xx

dreamdaisy

Please find out about the prepayment certificate, you need one by the sounds of things. I think its £104 per annum, £10.40 per month and I can't remember the three monthly charge. I think if you google help with healthcare the scheme should come up.

I am not doing my meth this week as I have started a sore throat: my hospital have always told me not to meth with a sore throat so I shan't. I hope you are feeling as OK as you can be. DD

dachshund

Hi Janet.
how are you today.i take fybogel its a orange powder you mix with water its for constipation.
how are you getting on with your meds.
take care and have plenty of rest.
joan xx

julie47

Hi Janet

Just want to welcome you to the forum and hope you start to feel better soon.
Take care
Juliepf x

tillytop

Hello Janet

Welcome from me too.

I am so sorry that you are having such a wretched time of it at the moment. I have had RA for nearly 16 years but I can still remember what a physical and emotional roller-coaster it was at the beginning.

As the others have said it can take a while for the meds to kick in and to find the right combination of meds for you and I know from experience how easy it is to be overwhelmed by it all at the beginning. But if you can, try to focus on just one day at a time, without allowing the "what ifs" and "how will I manage" to crowd in on you. I know that probably sounds barmy/impossible at the moment but I reckon that, by doing so you will be saving what little energy you have for the really important things.

In case you haven't got to it yet, here is the link to the prescription pre-payment card website (hope it works).

http://www.direct.gov.uk/en/Dl1/Directories/DG_10011173

Thinking of you.

Love Tilly xxx