Here's to a good New Year for everyone

This is really an update on me but also a bit more advice needed I think. Following my flare/reduction issues about a month ago I have been on 12mg pred. My inflammatory markers were normal but my rheumy nurse said I could go on 10mg and stay on it until Christmas. After a few days on 10mg I felt no better so increased to 12mg. I haven't told them but my GP says to adjust it myself according to my symptoms!! I still don't feel brilliant...I feel like I am permanently getting a cold but not severely! It's weird. My shoulders have stopped aching since I upped the pred, so that's good, but I am still so tired and am still getting the odd headache, although not the same as pre diagnosis. These headaches involve a tenderness over the back of my head and are treatable with paracetamol. My eyes feel really heavy and my eyesight has deteriorated a lot since diagnosis almost 2 years ago now. I now need my 3rd pair of specs but before that I have been referred to the eye hospital for further tests. I also get the odd touch of jaw ache but it seems to be toothache too. A general feeling of 'unwellness' is how I would put it. I think I have coped reasonable well so far but it is now starting to get me down a little because there always seems to be something else and I can't keep whining to my friends!!!

At the moment I am on 11.5mg of pred and am still taking the Alendronic Acid, Vit D3 and Calcium , along with Omeprazole, Aspirin.....oh and levothyroxine and my inhalers!!!

Sorry to be a bit of a moan...but it does help to write it all down.

10 Replies

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  • Dear Altywhite,

    Whenever I read others posts such as yours I honestly feel as if I had written your note. Except I am stuck o 16mgs with my temporal headache still present .

    I get a screech in my ears when I bite or clasp my jaw which is still tender. The thought of going back up in dosage just undoes me.

    Today is my regular pop off to store, library and pharmacy then visit an older friend. I simply can't get past the tired out feeling so I basically kept going back to bed today.

    I truly do not know what I would do if this forum wasn't here. Knowing I am not simply lazy or crazy has changed my life. Everyday I read the new posts and then start my day.

    Oh and we get to whine and moan all we want here.

    God bless

    Linda

  • Hi Linda, bless you.....hope you have a better day tomorrow. I thank my lucky stars I don't have PMR as well. I'm a Linda too, by the way!

  • Hi altywhite

    It does help writing it all down, I've done that before then not actually posted as the writing helped!

    I think knowing you're not alone helps, I can't advise re your headaches but I too have had changes to my eyes. My optician made me some 'Middle Distance' Lenses up & they were a god send when I was on higher doses.

    I'm currently back up at 7mg after getting down to 5mg but that had something to do with Chemotherapy, Breast Cancer is not a route I'd recommend! 🎀

    One of the more expert contributors will be along soon to advise re your next step.

    Meanwhile, I'd like to Wish You a Very Happy & Healthy New Year 🥂

  • You know MrsNails....I have done exactly the same thing...written down but not posted!! I was thinking about getting standard distance lens specs for now...they're cheaper...until my eyes are sorted!! I'll see what they say at the eye hospital.

    I would imagine chemo really messes with the pred dose although my friend wa actually put on pred during her chemo. I hope you're doing well and all the very best for 2017.

  • I have distance specs and computer specs, both standard lenses. I have used the same computer ones for almost the entire time I have had PMR, they just get moved up and down my nose! I am very short-sighted so reading is not usually a problem but the computer specs double for that if necessary. I couldn't be bothered with variofocals when my eyes do change subtly from time to time.

  • That is the way for me to go I think..I'm short sighted too and I hated wearing reading glasses so had varifocals. But I think I'll forget about those until things settle down.

  • you're not being alone at all this is just how we feel and some days are better than others. But isn't that why we're here for everyone. I keep thinking that there's going to be some miraculous cure and this can all go away in the next 30 days but in reality it's not the truth this can go on for a long time. I've become a bit of a Hermit, I'm embarrassed about my face and I feel very self-conscious around people. My poor husband has to listen to me everyday look at my fat face, oh I don't feel good, so my shoulders oh my wrist I'm boring myself to death with my health issues. I'm still at 27 mg prednisone I want to start moving downward but it's such a long process and I have to be careful with what I'm feeling as I'm progressing through this, and some days are better than others. My shoulders click my hips click my knees click absolutely no energy I can put a load of laundry in and I could sleep for an hour. Been working my arse off since I was 14 years old I thought by this time in my journey life would be smooth sailing jokes on me. But the great news is I'm alive, I will get through this, I love my grandchildren, I have an amazing spouse, and the weather is going to slowly get warmer as I progressed through this journey. Each and every one of you has added to the quality of what I'm learning and I just want to keep on learning I'm always here whining is not a problem you can put it all on my shoulders and I will listen no matter what.

  • I banned mirrors - I stood with my back to the only one in the lift! I took my specs off for the one in the bathroom - and dreaded the hairdresser asking if I liked what she had done.

  • Hi...I absolutely hated my moon face!! My friends used to tell me it wasn't that bad but it was!!! I also was 'lucky' enough to get the 'buffalo hump'....now that really depressed me, as well as all the weight I put on!! I think we all go through the same thing..and it doesn't matter if we were slim beforehand or carrying a little extra weight anyway. There is a light at the end of the tunnel though....my hump started to lessen as I got down to 20mg a day and now has almost disappeared. My face is looking more normal for me now too although I am still carrying some extra weight....so things do get better in that respect. I have also learnt to live with myself as I am...good luck.

  • I am so glad that I found this site. I had never heard of PMR and you all seem to know so much about it - more than my doctor - and it is definitely helping me come to terms with how LONG it takes to get better. Your advice is so useful but having gone from being a very active 75 year old who still acted in the chorus of musical shows, singing with 2 other choirs and performing in concerts for charity and doing the odd bit of fashion modelling and enjoying travelling the advent of PMR really hit me. Reading your posts and advice keeps my pecker up!!!!! Happy healthy New Year to ALL!!!!

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