Frustrated

After a positive app with the Rheumy Nurse last week where she agreed the mtx was not sufficiently managing my PsA, I am still waiting for a phone call from the hospital.

They were due to confer on Monday with my consultant to discuss changing me over to Leflunomide and possibly going back on steroids. My Nurse then said that she would ring me with a prescription. I did contact the unit on Monday after not hearing from them which the receptionist said that they would email them and I'm still waiting.

Today I am going to contact my GP for an emergency prescription of my mtx as I don't have any left.

I'm seeing my OH doctor Friday then next week I am going into work for my official written warning about my absence hence I am feeling rather frustrated and stressed !

I need to get this disease under control to allow me to get back to work before I lose my job and my sanity!

7 Replies

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  • I don't understand why your having official written warnings if your seeing works occupational health doctors, they are the people who advise your HR and manager regarding making any changes to your workplace and how your health is affecting you. hope you get this sorted soon especially with your meds.

  • It's because I have been off work now for 6 months and protocol with the County Council. I'm taking my unison rep with me. Will know more on Friday hopefully after seeing the OH doctor. Will let u know how I get on

  • That rheumy dept. need a kick somewhere! Are they aware of your situation vis a vis work? They should be hyper aware of it and pulling out all the stops to get your disease under control.

    If you feel they are not factoring in the seriousness of the work situation or, come to that, the fact that you are being left stranded without drugs at all, then contact them to spell it out loud and clear in words of one syllable. I know which words I'd like to use, but being polite and firm and very definite might well shift something.

    None of this is okay & I really feel for you.

    Is Mtx the first DMARD you've taken? Because if you've failed two and meet certain other criteria you could be considered for biologics.

  • You have made me laugh Postie! The nurse was appalled that I am getting a warning when I explained and kept reminding me that I am ill although I don't think of myself as being ill just Monumentally dibilitated.

    I was started on sulphasalazine in January when first diagnosed but reacted badly to that. Had high hopes on mtx but after 16 weeks not much difference. My DAS was 14 last week the highest it's been

    The nurse did say that when I go again at the end of the month they would discuss biologics with me but I'm hoping it won't come to that. Will keep you informed with my progress x

  • Some of us think that bios may actually be a bit easier on the body, if anything, than the DMARDs are. And there's a school of thought that for moderate to severe PsA, they are very much the way to go.

    Mtx was a 'feel good' drug for me, which obviously isn't everyone's experience, and if anything I've had more ups & downs with Humira. But to date Humira is turning out to be even more 'slow release' than mtx - a year on I find myself with NO joint pain, though a big psoriasis out-break. Before Humira I had swollen joints for 3 years +. After a month or two all joints returned to normal. Worth considering if you qualify.

  • Hang on, how come they're assessing your PsA using DAS? I thought that was only for RA. The criteria for bios with PsA is a bit more 'liberal' although what we get in one way, we lose in another, for example it is harder to get a second bio if the first doesn't do the trick.

  • No idea. Thought that was the case with PsA and RA. Hopefully it won't get to biologics. Fingers crossed.

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