Hiya! I'm a recently diagnosed sufferer of PsA (only diagnosed earlier this year and been having symptoms since 2014). I'm 24 years old and from Northern Ireland. I've already graduated from University but I'd like to go back to get a PGCE at some stage in the relatively near future. This, for me, depends on how quickly my PsA can be managed.
The most difficult part for me about having PsA is the exhaustion! While I would never had deemed myself active by any stretch of the imagination, it was nice being able to do many everyday things without feeling fatigued. Sleeping away the day is not as fun as many outsiders would think.
I find myself being bored even though I keep up with several hobbies. There's only so many hours that can be filled with certain activities. So I've taken up to playing more games or watching movies/documentaries (though I recently deleted my Netflix as I feel as though I've watched everything worth watching). Really hoping I can get back to working soon.
Fortunately, I still live at home but I'd like to get my own place to live some time soon. I'm going on holiday from mid July until early Sept which means my medication will be stopped until I return. Which only prolongs my 'gap' period. I was on sulfasalazine before but took a really bad allergic reaction to it. Now I'm on Methotrexate.
Dunno what else to say, not really keen to bore you and I've already gotten an essay here. Feel to free to ask me any questions, more than happy to share & reply.
I am on the other side of the world in Australia. I'm also damn near old enough to be your grandma. However - You have definitely found the right place. My son who is just a little older than you is currently going through investigations to see if he has this 'charming' disease so I understand your frustrations.
You will find so much information on treatments and support and if you just want to rant. When I first started on Methotrexate (MTX) it was the guys on here who told me I needed to up my fluid intake on my med day. They also made sure that I was taking Folic Acid as well.
You sound like someone who would read, so can I suggest a great book which was recommended to me "Psoriatic Arthritis Facts"
This is the place to have a rant when you are having a bad day because you are with people who understand fully what you are going through.
I guess most people would want to know if you have psoriasis on your skin or have ever had it. Maybe if you have nail involvement and if you have an other co-morbid auto immune conditions as well. Lots of us have myalgias, ceoliac disease and assortments of auto immune conditions.
We hope you have a fabulous Rheumatologist who you can now call your 'Rheumy' :)
Thanks for taking the time to reply. I drink a lot of water already so hopefully I'm on the right track with that. I don't like drinking what we call over here 'fizzy juice' all that often (cola, sprite, fanta etc). If anything, I'd go for diluting juice first. My medication is prescribed with folic acid already! So luckily, I remember to take it too. I take my MTX on a Friday, and my FA on a Sunday. Seems to be the easiest way for me to remember.
Thanks for the book recommendation too. I'll definitely look into it and see if I can pick up a copy.
Yes, I have skin psoarisis. It's never been truly bad, mostly on my scalp but some random spots have developed over my arms, legs and back recently. Also have it behind the ears. I do have nail problems too. Pitting, white chalkiness under the nail, nail warping. Dunno the medical terms for any of those, sorry! But I'm a prolific nail biter as well and still can't be able to stop.
Don't seem to have any other immune conditions or any other illnesses aside from the psoriasis and psoriatic arthritis. No one else in my family has either condition or any form of arthritis.
I'm also a vegetarian (was vegan for a short while but it's very expensive to even maintain a vegetarian diet here) but my diet is definitely suffering due to my exhaustion and I've noticed I don't eat as often. I think 1-2 times a day, if even.
I actually have a fantastic Rheumatologist! The only frustrating thing in relation to anything medical wise would be the receptionists at my GPs office! Haha, but that's neither here or there.
Thanks again for posting! Hope things are going well for you too! Teddi
Becstar said:
Hey there Teddi - Welcome.
I am on the other side of the world in Australia. I'm also damn near old enough to be your grandma. However - You have definitely found the right place. My son who is just a little older than you is currently going through investigations to see if he has this 'charming' disease so I understand your frustrations.
You will find so much information on treatments and support and if you just want to rant. When I first started on Methotrexate (MTX) it was the guys on here who told me I needed to up my fluid intake on my med day. They also made sure that I was taking Folic Acid as well.
You sound like someone who would read, so can I suggest a great book which was recommended to me "Psoriatic Arthritis Facts"
This is the place to have a rant when you are having a bad day because you are with people who understand fully what you are going through.
I guess most people would want to know if you have psoriasis on your skin or have ever had it. Maybe if you have nail involvement and if you have an other co-morbid auto immune conditions as well. Lots of us have myalgias, ceoliac disease and assortments of auto immune conditions.
We hope you have a fabulous Rheumatologist who you can now call your 'Rheumy' :)
Welcome Teddi! You have found a place you can truly fit in and honestly express yourself to people who get it all. I too have no one in my family diagnosised with this and had never even hear of it until my PC referred me to my rheumy. This site is a godsend!
Thanks for taking the time to reply. I drink a lot of water already so hopefully I'm on the right track with that. I don't like drinking what we call over here 'fizzy juice' all that often (cola, sprite, fanta etc). If anything, I'd go for diluting juice first. My medication is prescribed with folic acid already! So luckily, I remember to take it too. I take my MTX on a Friday, and my FA on a Sunday. Seems to be the easiest way for me to remember.
Thanks for the book recommendation too. I'll definitely look into it and see if I can pick up a copy.
Yes, I have skin psoarisis. It's never been truly bad, mostly on my scalp but some random spots have developed over my arms, legs and back recently. Also have it behind the ears. I do have nail problems too. Pitting, white chalkiness under the nail, nail warping. Dunno the medical terms for any of those, sorry! But I'm a prolific nail biter as well and still can't be able to stop.
Don't seem to have any other immune conditions or any other illnesses aside from the psoriasis and psoriatic arthritis. No one else in my family has either condition or any form of arthritis.
I'm also a vegetarian (was vegan for a short while but it's very expensive to even maintain a vegetarian diet here) but my diet is definitely suffering due to my exhaustion and I've noticed I don't eat as often. I think 1-2 times a day, if even.
I actually have a fantastic Rheumatologist! The only frustrating thing in relation to anything medical wise would be the receptionists at my GPs office! Haha, but that's neither here or there.
Thanks again for posting! Hope things are going well for you too! Teddi
Becstar said:
Hey there Teddi - Welcome.
I am on the other side of the world in Australia. I'm also damn near old enough to be your grandma. However - You have definitely found the right place. My son who is just a little older than you is currently going through investigations to see if he has this 'charming' disease so I understand your frustrations.
You will find so much information on treatments and support and if you just want to rant. When I first started on Methotrexate (MTX) it was the guys on here who told me I needed to up my fluid intake on my med day. They also made sure that I was taking Folic Acid as well.
You sound like someone who would read, so can I suggest a great book which was recommended to me "Psoriatic Arthritis Facts"
This is the place to have a rant when you are having a bad day because you are with people who understand fully what you are going through.
I guess most people would want to know if you have psoriasis on your skin or have ever had it. Maybe if you have nail involvement and if you have an other co-morbid auto immune conditions as well. Lots of us have myalgias, ceoliac disease and assortments of auto immune conditions.
We hope you have a fabulous Rheumatologist who you can now call your 'Rheumy' :)
Keep in touch and Good luck <gentle hugs>
Oh - I forgot to say - the book is available for only a few $$ as a Kindle edition if you e-read :)
I'm truly laughing out loud, Teddi, 'difficulties' with doctors receptionists goes with the territory! I reckon they REALLY are another form of life put on earth to act as gate-keepers ;)
It's never happened yet but I reckon the day I can't face the inevitable battle will be the day that I didn't need to see a doctor.
Anyway, hang in there and let the methotrexate get to work. As Bec says liquid, liquid, liquid makes a huge difference and something else you may not have picked up yet is that the folic acid dose can be increased as well if you do develop sides effects.
And I'm in the same club as you with the sulfasalzine!
Hey, Teddi, yes, learning how to deal with doctors’ receptionists is one of the skills that you have to learn! When you have a diseasse like ours, there are all kinds of skills that come in handy.
On your profile, you mention that you are going on holidays this summer. I didn’t quite understand why you would stop your meds during that time. Or have I missed something?
There are a lot of great people here: you’ve already met several lovely ones, and although they live on the other side of the big blue marble from you, they are as close as your computer. That’s the beauty of this site: whatever the time of day or night, there’s always someone to talk to who understands, and who has been where you are trudging now.
Becstar mentioned “The Book”. As she says, the Kindle edition is a bargain:
Thanks for taking the time to reply to me! Yeah, I'm really enjoying the site so far, though I'm still trying to get to grips with everything. Yeah, same with me. I've had my psoriasis since 2011-ish but I never knew there was PsA until I ended up with pains and swollen joints etc :(
Teddi
Rachael said:
Welcome Teddi! You have found a place you can truly fit in and honestly express yourself to people who get it all. I too have no one in my family diagnosised with this and had never even hear of it until my PC referred me to my rheumy. This site is a godsend!
Oh man. Doctor's receptionists... I used to work in customer services so I get dealing with members of the public. But last week I had to call for blood test results and it took 21 times before they would pick up the phone. On the 21st time that they did pick up the phone, the phone had been ringing for 3 whole minutes. Talk about frustrating.
And the sulfasalzine as well... Ugh, that weekend I had my allergic reaction, I thought I was going to die. Never felt so sick in life.
Thanks again, Teddi
Jules G said:
I'm truly laughing out loud, Teddi, 'difficulties' with doctors receptionists goes with the territory! I reckon they REALLY are another form of life put on earth to act as gate-keepers ;)
It's never happened yet but I reckon the day I can't face the inevitable battle will be the day that I didn't need to see a doctor.
Anyway, hang in there and let the methotrexate get to work. As Bec says liquid, liquid, liquid makes a huge difference and something else you may not have picked up yet is that the folic acid dose can be increased as well if you do develop sides effects.
And I'm in the same club as you with the sulfasalzine!
Oh! My holiday is to South Korea and Japan, so my doctor felt as though it wasn't a good idea for me to continue on my medications as I only started it in May. So I wouldn't be on it long enough or monitored for long enough on it, for them to be comfortable for me to stay on it.
I found the book via iBooks for my iPhone and read the sample so I'll be considering buying it. Thank you for the link as well! I used to have a kindle but due to unfortunate circumstances, no longer have it.
Thanks again for the warm welcome! Nice being here! Teddi
Seenie said:
Hey, Teddi, yes, learning how to deal with doctors' receptionists is one of the skills that you have to learn! When you have a diseasse like ours, there are all kinds of skills that come in handy.
On your profile, you mention that you are going on holidays this summer. I didn't quite understand why you would stop your meds during that time. Or have I missed something?
There are a lot of great people here: you've already met several lovely ones, and although they live on the other side of the big blue marble from you, they are as close as your computer. That's the beauty of this site: whatever the time of day or night, there's always someone to talk to who understands, and who has been where you are trudging now.
Ah, I get it, Teddi. When you first go on MTX, they want to keep a close eye on your liver with regular blood tests. They do blood testing in Japan and Korea, but that is probably not the holiday adventure that you are looking for. LOL
I’m on my fourth Kindle. Unfortunate circumstances indeed! One was an old model that I gave away. Two, I fell on and broke the screen. And number three was stolen while I was in the hospital … talk about “unfortunate circumstances”! But seriously, the book is well worth getting.
One of the cool features of this site, if you haven’t found it already, is the chat capability. At the bottom right of your screen is a “Members Online” panel. If you click on the person’s name, you can peek at their profile, or choose “Chat”. Try it sometime: there are lots of friendly people here.
Yup! That's basically it. While there is the option to be monitored on holiday, my doctor would rather not. I'll just take a load of painkillers with me and hope for the best even though there will be a lot of walking involved!
I can't believe someone would steal from someone else, especially in a hospital. What? That's really sucky! I liked what I read of the first few pages in the sample. Looks like the sort of book that will very helpful for me to understand my condition but also to explain it to others!
Seenie said:
Ah, I get it, Teddi. When you first go on MTX, they want to keep a close eye on your liver with regular blood tests. They do blood testing in Japan and Korea, but that is probably not the holiday adventure that you are looking for. LOL
I'm on my fourth Kindle. Unfortunate circumstances indeed! One was an old model that I gave away. Two, I fell on and broke the screen. And number three was stolen while I was in the hospital ... talk about "unfortunate circumstances"! But seriously, the book is well worth getting.
One of the cool features of this site, if you haven't found it already, is the chat capability. At the bottom right of your screen is a "Members Online" panel. If you click on the person's name, you can peek at their profile, or choose "Chat". Try it sometime: there are lots of friendly people here.
You’re right about the theft in hospital. I believe it was the old lady in the next bed: she had dementia, so I didn’t want to raise too much of a stink. And I got out of hospital alive and I recovered, so hey …
Yes, the book will help you understnd your condition. But helping others understand … oh dear, this place is full of stories about others simply not gettinng it. Yes, their grandmother has arthritis, thy know all about it. Oh bummer, they have arthritis in their little toe and it has wrecked their golf swiing. Have you tried apple cider vinegar? Ah yes … Jules has a great blog post:
I'm with you on the exhaustion! I think that after disabling joint damage fatigue may be the most difficult aspect of PsA to handle. I was so fatigued during first big flare that I could not find the energy to smoke and as I was seriously addicted at the time I think that says something about the difference between fatigue and normal tiredness.
However fatigue was one of the first things that responded to treatment with Methotrexate. I was elated even though things like walking took a bit longer. My joints are pretty damn good now. I do hope that your fatigue improves just as quickly and that you get a good result all round. Meanwhile, have a great holiday despite PsA!
Also, just a thought from an ex-teacher in the UK .... I reckon that in the teaching world, if you don't ask, you don't get. And that self-confidence & knowing what you want tend to get a good response seeing as these are key qualities in the classroom. So might it be worth asking about a slow-track approach to your PGCE with a view to speeding up when you are able to?
OHHHH Apple Cider Vinegar and Tumeric. The number of people who have told me I should try it because it worked for their cousin's, uncle's, brother's cat or some such twaddle.