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Newbie looking for help

Hello I am new to this site and am looking for some advice.


I have psoriatic arthritis without any skin lesions and had not been using any medication except pain relief and anti inflammatories for several years. My flares were sporadic and usually in my right knee and left foot and occasionally my toes however in the last year my right foot and left knee took bad flares.

I developed septic arthritis in early December 2020 in my left knee and ended up having keyhole surgery to wash out the knee and was on IV antibiotics and then oral antibiotics for several weeks. The swelling has never fully subsided and it has been in my feet and toes as well. I started 10mg of methotrexate weekly with folic acid in between and each time I took the methotrexate my knee would swell terribly I was due to have my dose doubled to 20mg next week.

I have been told to stop taking the methotrexate as my white blood cells are too low and I’m seeing my specialist tomorrow as my rheumatologist nurse advised that due to the surgery and my blood levels she doesn’t think I’ll be allowed a steroid injection in case it introduces infection into the knee. She suspects they will try me on sulfasalazine as even though the dose of methotrexate was so low the effect on my bloods means they won’t continue.

I feel like the methotrexate made no difference whatsoever to my joints if anything it merely irritated them and my fear is that the sulfasalazine won’t have any effect either. I have been dragging my leg for months now and I really want something to hit the arthritis hard without knocking my white bloods off.

I’m sorry for the long post but the watch and wait approach is no longer an option for me as I am at the end of my patience. Any advice or suggestions I can take to my appointment tomorrow would be greatly appreciated x

Comments

  • Shell_HShell_H Moderator Posts: 250

    Hi @Cribbo17 - welcome to the online community!

    I see you have had psoriatic arthritis for a few years, and then last year you were diagnosed with septic arthritis in your left knee and it's been getting worse since then. You're worried as you've been taken off one medication - which you didn't think was helping much anyway - and are now going to be trialed on a different medication as your white blood count was low.

    There is some information on specific medication for psoriatic arthritis in the link below. Have a look at the section labled "Treatment" - both methotrexate and sulfasalazine are covered there.

    The good news is that there are different options which can be explored for drugs and treatment, so have a read and see what makes sense to you. It will give you a better understanding when you have your appointment tomorrow.

    Sadly having to try a few different drugs until you find the one which works for you is common - every human body is different and reacts differently to others. This doesn't make it easy when you're going through the process of finding the one which will work for you, but do hang in there. There are many options so you will find the one which works for you.

    I'm sure there are

    Let us know how it goes tomorrow!

    Shell

  • Cribbo17Cribbo17 Member Posts: 8

    Thank you for replying Shell I will try and get some better pain medication while at the appointment this is the longest I’ve ever had a flare before without relief and it’s so worrying to think that it could continue for weeks or months.

  • Hi Cribbo17

    Thank you for posting on the forum, I’m sorry to hear that you have been going through a challenging time. I have read Shell’s response which seemed really helpful, including the link to our information on PSA. I hope you manage to get some pain medication to give you some relief.

    If at any point you would like to talk things through you are very welcome to give us a ring on our helpline: 0800 5200 520 (weekdays 9am – 8pm) here we can take our time to talk informally and in confidence.

    Just for your information I wonder if you have heard of PAPPA (The Psoriasis and Psoriatic Arthritis Alliance) They are a charity for the condition and may be useful for you to know.


    I hope this is of some help.

    Best wishes

    Lynda

    Helpline Advisor

  • Hi cribbo17


    First of all talking about all this helps with what's going on inside your head atm and just posting things here will help loads.

    I also have psoriatic atheritis and I'm currently struggling with it as I think my meds are starting not to be so affective as they once was, I am currently taking 25mg of methotrexate via weekly injection and daily sulfasalzine tablets to try and keep me in some normality but I feel the more time that passes the less it seems to be working, I suffer with it in my fingers, wrists, elbows, knees and back and on some days I struggle to get my socks on but the world just will never understand how difficult it is on a daily basis as its not something people even know about, I also struggle with the side effects that the drugs give us I take my injection on a Friday and I can pretty much bet I will be feeling unwell over the weekend with sickness and feeling not with it. The good news is the sulfasalzine gives me no side effects so this is a massive plus.

    I habe been talking to my specialist and I am due to talk to him soon and see what other options are open to me.


    They is lots of different options to treat this disease it is just all try and change untill they find what's good for you.

    I hope they sort something out for you very soon but make sure you talk to people on this group and read the story's as you can see things that will help you deal with our problems a lot better.

  • Cribbo17Cribbo17 Member Posts: 8

    Hello and thank you for your reply.


    I am so sorry to hear you are still struggling even with the combination therapy and I hope you get to see your consultant and get to try something different to give you some relief.

    I had my appointment today and we went over everything that has happened in the last 3 months he advised that my bloods that were taking at my ortho appointment last Wednesday were absolutely fine but when they were checked on the Friday my white blood cells had crashed. The only thing that happened differently was that I had my covid vaccine on the Wednesday and took a fever that evening but he advised that should cause my white blood cells to go up not down. However he aspirated my knee for me and gave me a steroid injection into my knee to give me some relief and said it should kick in within 48hours but honestly I felt a difference even with the aspiration. My bloods have been repeated and he will call me tomorrow with a new plan and new prescription of meds he advised if my white cells have come up they may continue with a higher dose of methotrexate and combine it with another drug but if they are low then methotrexate will not be an option. However he has promised that regardless I will have a treatment plan in place by the end of the telephone appointment. My mood has lifted so much just with the thought of getting my mobility back although I am still fatigued I will accept that as long as I can move when I do get little bursts of energy.

    I really do appreciate the reply and have found even just writing into the forum therapeutic. Please let me know how you get on.


    Cribbo x

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