Update of the week..

Morning everyone.

Being a night owl yet again - will I ever have a nights sleep. Just only ever seem to get a few hours at a time, the most I manage is 3/4 hours.

This week has bought some surprises - after last week and being told by rheumy to drop steroids by 10mg each week until down to 10mg per week - started quite difficult. Real side effects of the first big drop - acute tiredness, stomache pain, breakthrough headache - need I go on, so many of us have these horrid experiences.. But then visit to GP on Wed... and..

Started with I wanted a 'moan' and I think he took it the wrong way - was not moaning about the service from him or the hospitals - just wanted to let off steam - think we sorted this. I was/am fed up and guess just want answers, which I know there are at this time no definates... I then said ok - cards on the table, as he had mentioned on a previous visit that he thought I may NOT have GCA, so asked what do you HONESTLY think.. Well I asked - he then told me he had thought my CT was going to have shown a brain tumour (should say it did not, thank goodness).. he then went on to say the MRI's that are still to be done may show other changes - is he saying be prepared. But even so there will be nothing serious, this would have shown up on the CT. Discussed possible MS - things not really adding up to this, but, possible TIA/stroke (could be), MRI might show eschimic changes.

I am fed up of waiting, and I know this is not an exact science, and it maybe I just have an ongoing auto ammune breakdown with no specific diagnosis - a neuropathy of no known origine. Being impatient....

Just feel there are so many subtle changes happening, but then when I tell the doctor it sounds almost like I just keep adding things.. typing (get spellings wrong - not like me), dragging my foot as it's SO heavy, left hand less and less grip - left side aches, can't carry anything in that hand or bag on my shoulder. Not able to 'hold' when I need the loo - to the point of having the odd accident (sorry).. Ulcers on my tongue, the effects of steroids.

Have now had to increase pain relief - on 120mg dihydrocodeine slow release twice daily with paracetamol 4 times a day - rheumy has stopped my moloxicam and sulph, but still injecting MTX, omeprezole, folic acid and 30mg of steroid, until next Fri and then down to 20mg for a further week and drop again to 10mg and stay on that. Trouble is my head still hurts - been really bad today - kept finding myself near to tears at the drop of a hat!!

Thank you for reading - anyone else facing similar, any advice/views would be appreciated.

Hope you have a good weekend out there in our support land of Health Unlocked - thank goodness you are there, it helps so much to do this. I have been keeping a diary, it helps, but getting feedback and support is brilliant. Thank you.

Hazel x

[Celtic PMRGCAuk volunteer]

My goodness Hazel, poor you, you really are going through it. So many medications too - I suppose you've checked with the pharmacist about the compatibility of all those meds? Perhaps you'll feel some improvement now you've cut out a couple.

With regard to "not being able to hold when needing the loo", I went through a period of that and at the time wondered whether it was down to the high dose steroids or the inflammation. In the end I decided to blame it on the inflammation as the inflammation of PMR affects the muscles and the bladder is a muscle...... But what do I know?!

Very wise to be keeping a diary and I hope that very soon you will be able to record that the MRI leads to a definitive diagnosis and treatment to make you feel better.

[janimaths]

Truly feel for you Hazel with everything you have to endure.

Some of what you write has reverberations in me - especially your total exhaustion, heaviness in limbs and of course the pain. Getting fed up waiting for results is such a rotten thing - I'm in that situation with MRI scan results right now too, while my life goes on by me and I can't engage with things and steroid seems to put a block on my memory and a white fog in my head. Saps my motivation too, although that is now getting better as time goes on.

One thing I do worry about for you is the intended drop from 20 to 10mgs of steroid which is a 50% drop. Do other people feel OK with that for Hazel? Maybe your high to low dose has to reduce down more rapidly, and might not have the steroid withdrawal symptoms which I am experiencing right now, but then I have been on them for longer and your body may not have had time to become habituated. I don't know much about it.

After 8 months I notice an overall improvement but PMR sure as hell carries on dominating life. But for the first time and very recently I can now look back and acknowlege how terrible it was at the start with colossal abdomen from huge fluid retention, headache and skin eruptions etc., but now I feel that there may really be the start of some possible cure somewhere in the future, and I most sincerely wish you get some relief from all the things which plague you. And a diagnosis would be a fine thing!! Hang in there fellow sufferer. Wishing you strength.

[shania]

My PMR is holding it,s own on 10mgs prednisilone daily, I would have had a reduction to 7.5mg two weeks ago but in the meantime, because of tiredness and pmr, had a nasty accident in my garden and fractured both my ankles, fibula,'s. Now in two casts and a wheelchair, although might be able to manage on a walking frame tomorrow. No point complaining and moaning about it, life is what it is, so might as well get on and deal with the day. None of this is pleasant, but life has to go on. Personally, have found, the less I moan and bitch about illness the happier people, friends, family and professionals are to help me. I am not complaining, just making an observation. There is life with or without PMR, we just need to learn to deal with what the day throws at us.