PsA - realistic expectations

Posted Sat 4 Jul 2020 7.40pm by GS

Hi,

I am very glad to find this forum, and as a new PsA patient I am hoping to find out how fellow sufferers have responded to treatments to get an idea of what to expect in terms of working and quality of life.

I started with PsA about 5 months ago. I have had tiny, very temporary psoriasis patches in the past. The PsA onset coincided with a very stressful event, and at the time of diagnosis I also had extremely low vitamin D levels, so perhaps these were triggers. I am 31 years old. The pain started in my toes. It was so severe I thought I had somehow broken or dislocated several toes. However, within days I also had severe pain in 1 shoulder. A few weeks in and it was also affecting my wrists, spine, knee, hip, ribs/sternum, 5 months in, my affected toes are at strange angles, I can barely raise my arms and also struggle to walk.

The rheumatologist said to me "these days PsA is so well treated that you can't tell someone has it". Initially that made me very optimistic that eventually I would feel normal again. However, I am starting to lose hope. I have been taking sulphasalazine for just over 2 months, but have had little improvement. Should I expect a lot of discomfort to be my new normal? I am also frequently nauseous and becoming very depressed, and don't know if this is being caused by the sulphasalazine.

I would like to try and get an idea as to what to expect in the future. How effective have you found treatment to be? How have people found PsA to affect their work? E.g., have you found the option to work from home beneficial, or have you still managed to do a more practical job (such as working in a lab)? Have you had to give up certain hobbies?

Any advice, info, or just your own account of PsA would be very much appreciated :)

GS

Posted Sat 4 Jul 2020 7.48pm by PsA@32

Hi GS

I'm a similar agent you and diagnosed with PsA about 3 and bit years ago, I was in a similar position with the pain, had many days where I couldn't physically move or get out of bed. My morning routine with take a few hours just to get to the point of getting myself to work.. I was prescribed methotrexate and the meds you are on and as I understand it these are the cheapest drugs to start patients on and it they work great, keeps cost down for NHS, in my case and I believe many others they didnt/dont! I am now on Humira a fortnightly injection/EpiPen and I feel great, as if I havent got the PsA. So hold in there, get on to the better meds as soon as you can via your consultant and you will be back to normal/full health. Hope that helps you

Posted Sat 4 Jul 2020 8.33pm by GS

Hi there,

Thanks so much for your reply, that makes me feel so much better to know it is possible to feel normal again! I have my review in a couple of weeks, I really hope I can get on to the biologics soon.

Thanks again! :)

Posted Sun 5 Jul 2020 11.35pm by patis

Hi. I started with psoriase about one year ago and develop artrites 2 months ago, Due to the side effects I been trying to avoid medication. The pain was getting worse on every joits and especialy on my toe nails.

Since the artrites started been trying different aproches CBD oil etc,

About a week ago started following a diet AMY Myers book (she is a doctor ) . Very simple just cutting all the grains (including rice, oats, quinoa), cuting all the pulses nuts and eggs and dairy. Basicly we have to cook all the meals at home from scratch to guaranty that we not consuming any gluten or corn etc. Diet consist in meat/fish protein and vegetables for about one month to 3 months, after that we can start healing our gut and then start having have here and there some gluten free grains, eggs etc.

In just a week Iam not feeling any pain on my joints or fingernails. Its amazing, it requires a litle bit of work but we feel the difference in just a few days. On the book the author report some patients living with different types of autoimunes for years that went out of medication in just a couple of months.

Posted Mon 6 Jul 2020 0.16am by LadyJay

Hi GS

Yes the sulphasalazine is the cause of you feeling nauseous and depressed.

I couldn’t tolerate sulphasalazine and told my doctor that I wasn’t going to take it, we have a voice and shouldn’t just take drugs that make us feel worse, I am two weeks off all my drugs, just felt so bad all the time, but maybe it’s short lived as the Methotrexate was making a difference for my very painful hands and feet.

I was taking Methotrexate weekly 20mg and Biologics Amgevita 40mg fortnightly, so early days yet.

When you have your next appointment ask about stopping the sulphasalazine, (or just stop), and say how this makes you feel, I always write down my pain levels and other symptoms to take with me, because you never remember everything at the time, ask about Methotrexate at your appointment.

Recently I had a ‘flare-up’ and just cried for two days, and said to my GP about coming off my meds and all that happened was I was given more drugs to take, they too made me feel worse, so I’m not taking them.

Yes my hobbies are difficult I live cross stitch but can’t hold the needle for long and recently the strength in my grip is less, I get very frustrated which in turn make me cry, and so on and so on, I do believe that food plays a big part in how we feel, I will check out the book that was mentioned in the post from patis above.

Sending you hugs and truly hope you feel better soon, good luck with your next appointment, let us know how it goes x Sue

Posted Mon 6 Jul 2020 4.21pm by CBMan

Oddly enough my experience was almost the exact opposite of LadyJay's.

I was first diagnosed with PSA about ten years ago, having already had Psoriasis for at least 15 years. I'd had some of the same symptoms that GS described, intense pain in (in my case fingers) which made me think they might be broken, but which went away quite quickly. I'd never heard of PSA at the time, so didn't follow up on it.

However, I started getting significant morning stiffness in in my ankles, knees and hips and was referred to a specialist who diagnosed PSA.

I first went on Sulfasalazine and once they got the dose right I was pretty much back to normal. I played cricket, competed in triathlons and other than occasional stiffness, which responded well to Ibuprophen, didn't have any significant issues.

However, my rheumatologist thought that I shouldn't stay on Sulfasalazine (at the dose I was taking) for much longer and suggested I try Methotrexate. For me that was a disaster. Not only did it have almost no effect (I started to have trouble just getting up and walking around), but it also was having a negative affect on my liver.

I'm now back on sulfasalazine (albeit a lower dose) and am waiting to go on Humira (I've been approved, but my rheumatologist suggested now was not a good time to start the treatment).

The lesson is that responses to PSA medications are quite individual and it is quite common to have to try different medications and different doses before finding what works for you.

It's the same with diets (following up on what patis said). Different people have different triggers and what works for one person often seems to have no effect for others.

Posted Wed 8 Jul 2020 4.53pm by Mac

Hi GS.

Medication is going to be trail and error sadly, and to add more to the sadly part, takes time too know is it one working and two agreeing with you' it's not a fast process. As for me and sulfasalazine i was only on it for six months or there about's if memory serves, and it did not agree with me at all, and i also got no relieve out of it either. In saying that about the no relieve part, i was only starting to learn/deal with PsA, as in using other things such as the right exercise, cold and heat treatments to help the medication, so abit unfair maybe too say no relieve, plus i was in bad place.

Rheumatologist telling you it's so well treated that you can't tell someone has it. LOL. I don't know about other's but if you seen me getting out of a car, up from a chair, out of bed to name some of the things you'd know something was off. I remember one time going to Spain on holiday's, getting of the plane this old gent asked if i need help. LOL.

My wife enjoyed that one more than me i can tell you.

Should you expect discomfort too be the new norm, i can only answer from my own experiences, and for me i would be happy with only discomfort, pain and not being able too achieve your daily goals is worse for me.

Feeling nauseous i'm lucky this one has give me a miss ;). As for depression, oh boy, i was going too skip that one, as it's an open ended one, with so many different factors. I would be a positive person, but i do tread on the dark edge so to speak, not being able to do certain things because of PsA can bring you down if you let it, also if i'm around negative people, but the later i can do something about quite easily.

Work. Sadly i'm not working anymore, i was a builder and had PsA for a good lot of year's before seeking help, had i sought help sooner would i still be working i don't know. Pity we couldn't go back change things/decissions see if the out come would be different, that play's on my mind alot, but it is what it is. I did retrain, and my friend got me cushy number, sadly it didn't work for me. Try to make things easy for your self in work GS, and try to keep in work, believe me you need work more than work needs you.

Hobbies. I have alway's loved steam trains and i'm a 00 model railway modeler. Has PsA effected my hobby certainly it has, but it hasn't stopped me. Just not able to spend as long at it as i would want. Also there's day's where i'm not able to work on the finer stuff, but the day comes when i'm able to get the finer stuff done. The bonus comes when you can sit listening to the radio with a few beers at the weekend, watch my achievements chug a round the track. Not too mention when the grand children come round, their eye's nearly pop out of their heads :0, so hobbies are worth the effort in my oppinion.

Sorry for the rant GS, good luck and keep work as long as you can.

Posted Fri 10 Jul 2020 3.56pm by CLK

I have a more positive story for you. I was diagnosed with psoriatic arthritis aged 34, 14 years ago, after a similar stressful life event. I went on sulfasalazine and methotrexate which completely took care of my arthritis (although it took about a year to get the dose right).

After a number of years being completely symptom free, I came off the medication. Since then I have had occasional flare ups, and have recently decided to go back on methotrexate. I am hopeful that that will control the flare ups and allow life to get back to normal.

There are many effective drugs out there, and most of the people I have met over the years with psoriatic arthritis do get their symptoms well controlled. It seems awful when so young to feel like an old person, all creaky and painful, but there is a very good chance that the doctors will get this under control for you. Hang in there.

Posted Wed 22 Jul 2020 3.27pm by Jamie89Ward

Hey,

I was diagnosed with psoriatic Arthritis when I was 24, I spent a lot of the time between 19-24 in severe pain and struggling, the doctors weren’t interested for a long time until my partner at the time (now married) demanded that I get looked at by a professional, they were very reluctant almost argued with us but finally agreed, I’ve been taking Sulfasalazine now for the past 6 years and honestly it’s made such a big difference, I’m on the maximum dose of 6 tablets a day and I regularly have to take vitamin D supplements as well but my quality of life is so much better. What I would say to anyone is keep pushing your doctor if something not working or it’s effecting you wether that be mentally or physically! I’m now just concerned about my diet and lifestyle as I want to hopefully reduce my tablets!

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