Send Help. And Cookies.

Since my last blog post, a lot has happened. So much, I’m not even sure I know where to begin.

I came off methotrexate. Within 2 days I went in to the worst flare I have ever had. I was back to being practically bed bound. Swelling, stiffness, more swelling, more stiffness. The pain was intolerable and sadly, the arthritis undeniably both felt, and looked, like it was spreading to new joints, including a thumb and a wrist.

So I started sulfasalazine. Full of hope. Maybe this medication would be the one! Only it wasn’t. Despite having very few side effects after my first couple of dosages (mild headache and nausea) I broke out in such a severe reaction head to toe rash that I was taken off it immediately only after 6 days.

Only it wasn’t a rash.

It was psoriasis. And I am now covered, there is hardly an area of skin not affected by plaques. Hands. Feet. Both legs. Both arms. Boobies. Bum. Torso. Tummy. Face. EVERYWHERE.

I am now medication free. Covered in psoriasis. Unable to use my left thumb, which is swollen beyond recognition. Unable to apply much strength with my right hand because my wrist is too weak. Worried sick that my ability to write will soon be gone. My right foot, untouched by arthritis, now rapidly affected in each and every toe. A failed trip to podiatry in which the woman called me a liar and made it clear that she would go out of her way to prevent me having the surgery I both need and want. A comical trip to the doctors for a steroid shot which ended up with me going on a tour of the Aberdeen pharmacies, nobody knowing which pharmacy I was supposed to go to. A call to NHS 24 late one Friday night asking them to administer a direct to joint steroid shot to my ankle as it was so swollen it had absolutely no movement, only to be denied because shots are only available on a Wednesday (Lol wut?!) More time off of work. More time asking people for help. More time spent crying and feeling sorry for myself and feeling utterly fed up. More time spent locked away in the flat, not able to face the world. More time asking JP for constant reassurance that I’m ok. That I’ll be ok.

But coming off of methotrexate was the correct decision. Right? I have to keep telling myself it is. It was.

Who knows. I certainly don’t know. I can’t make sense of any of it. I don’t know if I’m coming or going most days. I’m barely getting by. I have still 4 weeks until I go back to rheumatology (to see Dr Evil Liar, but that’s a whole nuther story) and I can only hope that better medication is offered to me. Physically, and mentally, I cannot continue like this.

It is not all doom and gloom though. My Mum (also a cripple) and I enjoyed the most fantastic holiday in Slovakia and Austria and if you’ve never been to Vienna you really should. We were overwhelmed with help and support from people across the entire city. My bedroom was finally decorated. A fantastic day was had by all at the Braemer Gathering. Sure the payback for all of this has been immense, and trying to balance out what energy I can expend v what I should conserve is still a constant battle, but again, I’ll get there.

If anybody has had similar experiences after methotrexate, sulfasalazine, rapid guttate psoriasis break outs then pleaseeeeeeeeeeee get in touch with me and give me your advice!!

In the meantime, send your healing thoughts. And send cookies. Cookies make everything ok.

Author: sensibleshoesociety

Just your average 30 something trying to bumble her way through life with inflammatory arthritis.

4 thoughts on “Send Help. And Cookies.”

  1. I was on methotrexate and sulfasalazine and I hated them both. Worked for a bit but they stopped after a while.

    What you need to do is to go back to rheumatology at the hospital and tell them to put you on Biologic medication. It’s very expensive for them to prescribe so they can sometimes be hesitant to prescribe it but you need to be firm with them. Lay it on thick with them, show them how bad it’s got, how its affecting you physically and mentally, stopping you from going to work and that you’ve tried the Meth and Sulf and it hasn’t worked and that you want to go on Biologics.

    Honestly, Biologics are the serious psoriatic medication. There’s many different types, Humira, Stelera etc I’m on Humira and its a self injection but it’s worked wonders. Don’t be scared of the injection part its not like a hypodermic needle, its a pen that you just click and you don’t feel a thing.

    Do your research before you go, give biologics a google so you’re comfortable with it as they are very powerful medications and the doctors can tell that you’ve put a lot of thought into it and that you’re serious about it.

    Hope this helps and that things work out for you and make sure you keep us updated on how you get on!


    1. Thank you so much for your words. Does Humira work for you? My rheumatologist is so stubborn he’s always been like it’s methotrexate or nothing. I had to beg and cry to come off it to start on sulfa….what a decision that was!! I go back to hospital in just under 4 weeks so I don’t have much longer to keep hobbling around and just have to hope that I get a totally different med this time!!

      Liked by 1 person

      1. Honestly, as I say, take your mum or boyfriend with you and lay it on thick and show him how bad it’s got and that you’ve tried the other stuff and it’s not working and that you want to try Biologics. He sounds very stubborn so you need to make sure he knows that you’re not leaving the appointment without being put on it. Don’t be a dick about it obviously haha but as I say they can be hesitant to prescribe and they usually don’t even tell you that it exists. I found out about it myself, researched everything and had to bring it up and tell them to put me on it. I don’t think they would have even told me about it otherwise.

        If you want any more advice or just to chat about Psoriasis in general then it’s totally cool to drop me an email, just let me know, I’m happy to help!


      2. And yes, sorry Humira does work for me but with a lot of these medications they can lose their effectiveness over time. It’s about finding one that works for you and changing if it stops being as effective.


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