Yet more changes and still no further forward - FRUSTRATING!!

Hello all

To start the confusion - to post to GCA/PMR or NRAS - guess cut and paste to both with such a cross over of syptoms, all auto immune anyway..

GCA diagnosed some 5/6 weeks ago - and commenced on 60mg pred, had reduecd to 50mg which is where it was until yesterday. CT last Monday - normal (thank goodness). Diyhdrocodeine, plus MTX 20mg (inject weekly) and all the other RA dugs, Sulpz, Mobic, Omperpezole and paracetamol. Had RA 12/13 years - and still only 52!! Work full-time, but otherwise happy and healthy (got to be positive eh).

Saw Rheumy Consultant yesterday - 40 mins in his company and now so confused. I must say at this point he has been my rheumy since diagnosis 12+years, and he is great, no complaints about him, or the service I get from my GP or hospital, and for this I feel very fortunate.

The GCA has still not resolved, hence having had the CT, - the issue now being I am having left sided numbness - face and back of head, but now also having reduced sensitivity in my left arm and to a degree my leg, having the odd stumble. Also raised pain in my knees at night, actually having to be assisted out of bed on 2/3 occasions, this has not happened for many years! There is still a query as to it being GCA, but they don't want to say it isn't..

Rheumy now referred for 2 different MRI scan's - brain and neck/head. He did all the reflex tests yesterday and def reduction in the left side, even with the sharp thing run up the sole of the foot - feel pretty worried... Not used the word stroke, or obviously there is not a huge concern that it might be that or I would not be at home - I guess..

He now wants to reduce steroids by 10mg per week from where I am at 50mg down to 10mg within next 3/4 weeks - he really wants me to ride out the side effects of doing this - only reduced yesterday and feeling it today - so tired, so sore, chest and back pain, ache every where, even my eye lids - feel total rubbish.. Face so fat and swollen, and tends to swell during the day

Anyone else had these experiences

Any thoughts would be greatly appreciated as to how to manage/deal with this.. I am so fed up today - want some energy, have got the in laws staying near by for a week and all coming for roast tomorrow, which I really want to do, just need inspiration, energy and drive!!

Thank you for reading my moans and groans...

Hazel x

7 Replies

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  • Hazel i feel for you. Hope they soon sort you out. I have been on steroids for so long now. I take 10mg everyday and i don't know if or when they will take me off them. I have a moon face due to them and the weight that i have packed on is just awful.

    I can't say much on your other problem about whether it is a stroke or not. I wish the best for you. Sylvi..xx

  • hiya Hazel, I dont know the abbreviations of GCA or pmr. But I hope our doctors get to the bottom of our illness very soon. What is GCA/PMR?

    And can you add another 3 for the roast tomorrow lol :) Axx

  • Hi Allanah

    My apologies for the abbreviations - I try to be consceious of not doing that, it happens at work all the time and can be so frustrating. GCA - Giant Cell Artiritis (Temporal Artiritis) and PMR - (Polymyagia Rheumatica).

    Have had a half reasonable night until 3 - since having been struck with this other horrid diagnosis I have been having arthritis flares in my knees. WHY??? and the frustration, I am in such pain this morning. Needed pain relief at 3 and up by 6 as could not stand the pain in my knees, ankles and head pain with the GCA so in much need of the dihydrocodeine. Lets hope this is not how it's gonna be today.

    Need to be smiling for the family and doing the roast... sorry table not quite big enough for another 3!!

    Have a great day everyone.

    Hazel xx

  • hi hazel so sorry to here about this

    i find if i try to relax when im doing somthing it help

    ive sort of found out if i walk and think when is it going to kick me it usually does if i relax when im doing it its a little bit better but hard to stop thinking.

    have a good day i hope

    regards john

  • Hi hazel....feel so much for you. I too was diagnosed wi pmr two years ago(only ..48) agony! Also worried about the gca as jaw so painful and still is at times. Been up and down the pred scale and each time reduced the pain returns so fast. Have RA and on MTX. It's a horrible disease and takes over your life but we have to try and rise above it at its worse times and coming on here and knowing there are so many like minded people who understand has helped me so much. I so hope you can find a bit of energy to get you through. I cooked a big family meal on Thursday and my arms were hurting and felt so fatigued but I looked at them all tucking in (especially my 5 and 2 year old grandchildren) and felt so so lucky. Good luck with your lunch....it will be so appreciated. Sending you really big gentle hugs x Lynn x

  • Coming off steroids is always the worst low - cold turkey and cooking the Subday roast combined is pretty hard going I can see. Can anyone act as kitchen maid and soux chef I wonder? It will be well underway by now so hoping the stress you are under doesn't overwhelm and that they all understand enough about where you are to do the washing up for you at least? Tilda xxxx

  • I hope your Sunday Lunch went to plan and that other people did the clearing up for you. I do hope you feel better soon.xx

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