Downward Spiral

Diagnosed with PMR 8 years ago and stabilised with Prednisolone what joy!. With the passage of time and constant flares I was subsequently diagnosed with osteoarthritis and then rheumatoid arthritis if that is not enough I have osteoporosis and AF.

The pain I am experiencing is getting progressively worse and affects neck, shoulders wrists and thumbs.

I have been treated with a host of different drugs sulfthalazine, methrotrexate, enbral.

Recently prescribed an infusion monthly. Called Tocilizumab; after the first infusion no after effects. Three days after the second one I was right back to square one, the pain is dreadful. This was explained to the consultant before my third infusion and I was given a steroid injection.

The pain has continued unabated in spite of the injection and is intensifying by the day.

I wrote to the consultant a week ago and have not had a response. I had hoped to have had a phone call with the purpose of reviewing my treatment?

So far as pain management is concerned I am taking Paracetamol 2 four times a day. Tramadol was tried but made me sleep all the time. Amitriptyline set my AF off.

So that's my story.

I stay as active as I can but certain things are dreaded; dressing in the mornings; Lifting or reaching above shoulder level, towelling after a shower; donning/ removing coats going out/coming home.

I know there are people a lot worse than me but I am fiercely independent and just want the progress of the disease to be brought under control and pain managed in a way that makes it tolerable

3 Replies

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  • I hope the consultant makes contact soon. Do you have a rheumatology helpline you could ring? Or could you contact the consultant's secretary to get a message to him? In the meantime I would go back to your GP for better pain relief. There are other drugs available such as co codamol and BuTrans patches so you should not have to suffer this much. Best wishes.

  • Thank you for your helpful suggestions

  • So sorry 4 yr pain, i have 'progressed' from PMR abt 14 yrs to RA sero +ve so can empathise and have a couple of suggestions which may / not work 4U.

    4get hi cpboards - imagine you are under 5' tall and bring as much as poss to counter level. If u use havy pans consider micro and plastics pots steamers etc. easier to lift..

    i don't towel dry i ease into xxxtra towelling robe [not my size lol] and then use hand towel wherever.

    i slip into coats one arm first holding tother sleeve then other arm behind u to avoid lifting arms - can't xplain that sorry...

    b4 getting up elec blankie on for 20 mins or so and gentle stretching. good luck - sure others will have more ideas than me as newbie