Hi - Diagnosed with Psoriatic Arthritis April 2016

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SewingSue
SewingSue Member Posts: 4
edited 28. Nov 2023, 14:10 in Living with arthritis

Treatment:

May 2016 - Methotrexate and Steroids. Side effect of Methotrexate Migraines. Dose increased and platelets dropped very low so had to stop then take reduced dose.

April 2017 - Sulfasalazine. Allergic reaction, covered in rash over body, itchy. Not on face. Told to stop drug.

June 2017 - Started Etanercept weekly injections along with methotrexate 12.5 mg. Drug worked well. Pain gone and hands, knees back to normal. Body not swelling.

February 2020 - hands swell. Due to Covid only telephone appointment to discuss changes.

March 2022 - Consultant trying to reduce methotrexate, now on 10mg.

July 2022 - new Consultant. Knee painful to walk. Body swells by evening. Pain from hips down. Prescribed methotrexate injections 15mg as less side effect than tablets.

October 2022 - Methotrexate injections not helping. Migraines daily with wiggly vision and pain in forehead. Difficult when you run your own business.

October 2022 - Consultant telephone appointment on 31st. Went through issues. Fitted in for face to face emergency clinic appointment.

November 2022 - Saw Consultant. Told to stop Methotrexate. It was decided to move me to Upadacitinib (Rinvoq) after having necessary tests.

13 Jan 2023 - stopped Benepali injection. Two weeks cold Turkey until starting new drug. Awful without anything. Psoriasis in places that are very painful. Joints bad.

28 Jan 2023 - started Upadacitinib and statin tablets as this drug increases your cholesterol levels and mine are naturally high.

3 Feb 2023 - Joints improved, more movement in feet joints without any pain. Downside - red lumps appeared on right side of face and between eyebrows.

20 Feb 2023 - Rash and lumps but now itchy, stinging and burning. Sore throat. Rang Doctors given cream.

7 Mar 2023 - Doctor face to face appointment. Face so painful keeping me awake and spreading. Sore throat worse with right ear and gland painful. Doctor rang Rheumatology as unsure and thinks reaction to new drug.

8 Mar 2023 - Rheumatology Nurse rang - stop taking Upadacitinib. They sent photo's of rash/spots to Dermatologists for help.

17 Mar 2023 - Dermatologists diagnosed rash/spots as Rosacea Acne. Given prescription for 3 month course of tablets and cream. Sore throat gone.

Consultant to decide what drug they can give me.

Comments

  • Ellen
    Ellen Moderator Posts: 1,628
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    Hello @SewingSue a very warm welcome to the online Community. This is a lovely safe place where you can talk to others who understand your pain without judgement.

    I see from your post that you have Psoriatic Arthritis (PsA), but so far your treatment for your condition has really not gone well.

    Are you still taking the Upadacitinib (Rinvoq) or did it get stopped when the Rosacea Acne started? I hope you are not going 'cold turkey' again while they consider what you can try next.

    While you wait for some of our members to come along and say hello I will just add a link to 'Paul's story' about his PsA journey.

    https://www.versusarthritis.org/news/2020/december/busting-the-myths-of-psoriatic-arthritis/


    Now that you've said hello and introduced yourself so well maybe you'd like to look around the rest of the forum and join in wherever you feel comfortable. Living with Arthritis tends to be a very popular category.

    I look forward to reading your posts in future.

    Best wishes

    Ellen.

  • SewingSue
    SewingSue Member Posts: 4
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    Hi Ellen,

    One of the side effects of Upadacitinib (Rinvoq) according to the leaflet with the drug is "acne". I am currently going "cold turkey" while they consider what to do next and fit in seeing me. Trying to stay positive but finding the whole process of changing drugs when your original one stop working, slow and frustrating. Psoriasis back over scalp and joints not good.

    Kind Regards,

    Susan

  • frogmorton
    frogmorton Member Posts: 29,425
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    Nightmare @SewingSue Susan

    My daughter when she had cancer was put on dexamethasone as well as all the chemo drugs for 2.5 years. It gave her acne too and raised her cholesterol.

    It's so tricky trying to get the balance right without causing other problems for people.

    We had to wait years for her to be able to have treatment for the acne while her body recovered.

    Stupid dermatologists telling her off for eating too much unhealthy food - she is vegan!

    Best of luck

    Toni x

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