Hi everyone, Im new to this and am so glad I found it as I have Felt the only one in the world with Psoriatic Arthritis! I have no one to speak to who understands & im beginning to feel very depressed. I'm only 25 but feel I just can't do a lot without being in pain! I'm always making up excuses to not meet my friends because I'm to tired and to achy. I have 2 children, 5 & 1 (on Saturday) very active little boys and just feel I'm failing as a mother! & as a girlfriend. Doesn't help my boyfriend really doesn't understand either! I'm not writing this for sympathy, just for people to talk to who understands really. Iv just recently gone from methotrexate (made me very sick) to Sulfazalazine (don't know how to spell it) so hoping it begins to work pretty soon! Has it worked for anyone else? Thanks, Sophie.
Hello Sophie, I'm sure someone will be along soon, with the same disease as you.
I don't have PsA but have been on Methotrexate, haven't taken Sulfasalazine and am currently taking Mycophenolate Mofetil.
They usually tell you that these drugs take about 12 weeks to start to work. I know that I feel washed out a lot of the time & I admire anyone who manages to look after small children too.
You aren't failing as a mother & a girlfriend. You need support as a family. I wonder whether there is a support group on Facebook? I'm sure someone will tell you.
Good luck Sophie.
Sophie your not alone and this sight will help and support you when your feeling low and depressed, I don't have your condition but do suffer with other problems so I totally understand.
Is there no leaflets you could ask your partner to read just so he has some understanding of it or take him to your rheumy/doc appointments so he can explain how this condition effects you, I really feel for you Hun especially having little ones.
I hope you get sorted soon with the right meds for you as I have read on here what a difference it makes to your life once you have the right combo.
Always here to talk and listen when you need it, no one judges on here as where all in the same boat so do t feel guilty if you need shoulder to cry on, sending hugs 💞
Hi Sophie
You are certainly not alone there are many of us that have PSA as im sure your about to find out. The pain it can cause is horrible, I have been on Sulfasalazine which worked for a while then i was put on Methatrexate along side sulfasalazine, I am now on Cimzia (biotic injection) which is great its the first time in four years without any pain, I am lucky that my wife understands, I describe the pain as though I had been hit with a plank of wood.
Are you on any painkillers? I know how you feel with the pain i was in that much pain I was unable to work so I cant imagine what its like running around after two small children.
As you may be aware both Sulfaslazine and Methertrexate can take up to 3 months to work, I was on Tramadol, Co Codomol and Ibrupen with Sulf and MTX all at the same time, but since being on Cimzia I am only on MTX and the Cimzia now.
Get your Bf to read up on the condition he might start to understand,
All the best
Rob
Hi and welcome Sophie
you certainly are not alone! We all share pain here, there is no escaping it! In comparison mine is mild, I'm coping without painkillers most days.
I take my hat off to anyone suffering here!
Ive had PSA for some years, but only diagnosed recently. I am trying to search for alternatives to meds. I use acupuncture, yoga, Qigong exercises I found on YouTube and many many supplements.
My work are very understanding at the moment but I know my days are numbered.
You certainly are not failing, you are coping magnificently as not every mother has the discomfort like you!
You are stronger than you realise!
Stick with it girl!
Ian
Sophie,
I'm sorry you're feeling this way and I can relate. I'm new to the diagnosis and in some pain daily, some days are worse than others. I'm taking otezla, but have only been on it a few months, so no great results yet. I have a 9 year old boy who's super active. My husband is very understanding, though (it helped that he researched the disease to better help him understand) On bad days, instead of going outside, we all play board games or watch movies together, so I don't feel so absent. I carry a heating pad around the house and ibuprofen is on both floors of the house, so I don't have to climb stairs :-) working out helps me and I've found that drinking alcohol makes me ache badly the next day. This forum has been helpful for advice, understanding and the ability to just complain without judgement, but your rheumatologist might know of a support group to refer you to. Good luck and keep us posted.
Hi Sophie
welcome! You are no longer alone - you have found this forum and will make many friends who understand exactly what you are going through. We have our ups and downs (relapse and remission). When you are newly diagnosed it's very scary, all these new words and treatments. PAPAA as mentioned by MrsMop is a registered charity for people with psoriatic arthritis (PsA) and/or psoriasis. They are fantastic, please contact them as they have a great wealth of knowledge. They produce many leaflets both on their website and in paper format covering all aspects of this disease. I'm certain you will find answers to the many questions that will be running around in your head & your fella will find them useful too. If you phone them and speak to David Chandler, tell him Sheila from Carlisle sent ya!!! He is very easy to talk to and a fountain of info. PAPAA have a quarterly magazine and a monthly e-newsletter, I think. Days go by so quickly after a certain age! The annual subscription is £12 and worth every penny. They feature a variety of articles, reader letters and many helpful tips on coping strategies. And of course we are here at the click of a mouse.
As Robert has said, I'm full of admiration for you coping with 2 little ones. I hope your friends and family are supportive, talk to them, show them info. If it's possible I would ask your boyfriend /family member or trusted friend to accompany you to your initial consultations with your rheumatologist for 2 reasons 1. It will help them understand & 2. They can take notes for you as it's easy to forget what is said especially in the early days.
okay here's my list of practical suggestions, learned either from my own difficulties or from this friendly sad (occasionally) , bad (naughty is fun) and completely mad (i thank my God for the crazies who dont take tgemselves too seriously) bunch on this forum. Seriously, I've received tremendous support when low and confused, at times in despair. Here goes -
â– regular blood checks, initially monthly. As you have experienced, methotrexate (Mtx) can affect a small number of people very badly. I developed Mtx induced hepatitis in 2012, very nasty. In fairness it's an excellent Disease Modifying Anti Rheumatic drug (DMARD) and is very effective for most users. I will come back to other DMARDs if you read this without falling asleep
â– keep a record of your blood results yourself, if you ask your rheumatology nurse should provide one. Ask them to complete it for you. I find its useful as sometimes if you're feeling 'off' by referring to your blood results you can see possible reasons eg if your CRP (one of the measurements of inflammation in your blood) is greater than 3, this shows you have inflammation somewhere in your body, not necessarily PsA , it could be a chest infection. Your rheumatology specialist nurse should be able to explain what the readings mean. Remember, these are suggestions only, what works for me.
â– make sure you receive your flu vaccination each year, especially important for you as you have children & children at the age of 5 contract all types of infections, you must take can as the Sulphate zine supreme your immune system and makes you vulnerable to infection
â– get a pneumonia vaccine - PLEASE!!!!! No one told me about this; in April 2915 I contracted severe pneumonia and almost died at 50 years young. It's a lifetime vaccine, one off injection. I beg you, if there's only one thing you get from my ramblings - make sure ìts this one
â– contact the Disability Employment Advisor at your Jobcentre, you are entitled to PIP or Universal Credit, depending where you live.
â– if you drive or are a passenger in a car apply for the Blue Badge scheme, contact your county council.
â– you are entitled to a disabled rail card which reduces rail fares for you and one other to a third off travel. I think you pay £20 per year
â– discounted or free bus pass, apply county council
â– if you pay for prescriptions apply for an aannual card, cost is £104 pa. This saves me a fortune
â– fatigue is a huge part of PsA. I was a horrible nasty person who thought people with fatigue were wagging it or wimps. Boy o boy, did I get taught a hard lesson. I explain to others (usually cynics, as I was) the difference between feeling tired ( a nice drowsiness at the end of the day) whereas fatigue is sitting watching crappie TV and you cannot be bothered to change channel, it's too much effort. Also paradoxically I find it difficult to sleep when fatigued. Payback for all my criticism dished out over the years! Best advice I received to deal with this is to go to bed for 30 minutes or so daily, just lie on the bed and rest. My OT believes it's so important that I should consider it part of my prescription. This doubting Thomas eventually (cos I thought I knew best in my arrogance), it really works
â– learn to pace yourself, VERY IMPORTANT. Gosh that's going to be tough for you with your little ones but you must or you will frazzle. It doesn't matter about dusting, it doesn't, it doesn't matter if the windows don't get cleaned or running the hoover round. Harking back to what I said several pages ago, that's why you really must ask someone to attend appointments with you.
Accept that you have a chronic progressive disease; there's no shame in asking for help. I learned the hard way, many tears and tantrums, you don't have to make the mistakes I did. PsA brought me to my knees, physically, mentally and spirituality. The friendship I found here, the love and understanding rebuilt me to a humbler, kinder, much more compassionate person. I learned the posh car, my oh so important career, all the materialistic crappie long gone. Tolerance, love and understanding came my way when I became a flaky, wobbly old crip it doesn't matter anymore, as you can tell I can go on for hours but I really want to pass on the help that was freely given to me. If you want to natter, moan, scream "why me?' I would be delighted to help in any way. I have many tales too of being asked to leave a swimming pool in case "it was catching". Her hee hee. A final word, depression is a symptom of this disease, be mindful of your mood and ask, ask, ask for help. I hope to hear from you soon. And we come to this exclusive club, we are very special people cos we have been given the gift of true, understanding and loving. Be Good to yourself YOU ARE REALLY WORTH IT !!!! Sheila x
Ah Sophie do feel for you my PSA started with the birth of my son who is now 22 like you when he was young I felt useless no one understands as it's an illness you can't see! I went through the drugs your taking and yes methotrexate is awfully I was sick every week with it. I am on ant TNF drug which I inject weekly speak to your Rheumatologist about it it gave me a new lease of life at the age of 35 I an now 55 if you need to chat more contact me I've only put a little of what I've gone through and what drugs I have taken over the year's xx
Shiela thank you so so so much for this comment I am nearly in tears it's really touched me that u have taken the time to tell me all this, this will help me sugnifently! I applied for PIP and didn't get it but I'm going to try again as it was a few months ago when it wasn't as bad as it is now. Iv had to drop my hours at work so am now finding it hard to keep my car running etc it is just so stressful. I can't thank you enough for this xxxx
Thank you so so much for your lovely comment. I'm so glad I have found this site, I feel better already 
xxx
Thank you to everyone who has commented I'm so grateful xx
Hi Sophie
I am going to Private message you
Thank u so very much xx
I drink alcohol very rarely but when I do it definitely makes my joints hurt terribly the next day!! I wonder why? Iv not tried the heating pads, do they make you feel to hot? as I get so agitated if I am hot... I take tramadol as that's the only pain killer that really helps but I generally only take it couple hours before bed as they make me feel funny. It's just getting used to it all and my change of life, I'll get there evenualy :-) thanks for your comment xx
try cocodomol not as aggressive as tramadol
Hi Geraldine, thank you for your comment. What is this TNF drug? Not sure what I am currently on is going to work 100% because i keep forgetting to take them!! I have to take 2 in morning And 2 at night, the only thing I liked about methotrexate is I had to remember once a week!! Where I'm so fatigued my memory is terrible also! All I think about at the moment is 'is it bedtime yet' lol I need to get a life xx
Iv tried that and it didn't work Rob, and codiene, naproxen, everything really
I don't know why alcohol increases the pain, either. I haven't met with my rheum yet, but I'll ask. Two weeks! The heating pads help only immediately. It doesn't last and it can make me hot but I just remove it then. someone actually mentioned cool packs, since it's a type of inflammation. Haven't tried that yet. This is all just a big change.
I might be wrong but I think it has something to do with yeast and or sugar?