Hi all

I went to see my GP about three weeks ago, with several problems associated with PMR/GCA. Briefly, he said I had tendonitis, wasn't really concerned and said it would last for quite a while and I could try a support. An actual support on the elbow is too painful, and now this pain seems to have gone to my shoulder too - has anyone else suffered with something like this and was it tendonitis?

Dentist thinks I have sjogren's - 

Still feeling generally exhausted and anxious, I think perhaps I am finally realising I need several months off work not just a couple of weeks, then I go back and struggle on. Currently having to take a weeks annual leave roughly every four weeks to re-charge as much as I can. 

My bloods are a little 'strange' he said so he has run another full screen for the usual and something else he was concerned about (he didn't say what)  and and I getting results tomorrow.

I also am seeing my Rhuemy this week - so will be interested in his comments. Just got down to 15mg preds this week.

How should I be feeling on 15mg?  (diagnosed last June) should I be still having the side effects of the preds (tinnitus, palpitations, trembles, sweats and all the other usual ones) - and still feeling exhausted. 

Thank you - sorry for another post but I have the habit of seeing my Rheumy (who I am sure is great, but does not make eye contact with me or really 'talk' ) and coming out none the wiser - and my GP who sympathises but when I said about being signed off he said you may never go back so I don't recommend it - hence I am struggling with a really stressful job and feel if I am not careful I am going to end up right back where I started from. 

Thank you

10 Replies

  • Hi

    I have replied to your post before

    Diagnosed with  PMR Aug 15 I hope your appointments go well and you get some answers. I work full time but manage ok but I ensure my day is planned in advance, so I have plenty of rest I am able to do this as I visit people in their own homes and ensure I do little in the evenings so I can recharge I used to bring work home but ensure I no longer do that.

    I had (tinnitus, palpitations, trembles, sweats and blurred vision some days till about 2 months ago but they appear to be a thing of the past now.

    At my worse had 4 months off work got diagnoses after 2 months but at times never saw returning to work as a possibility.

    If you need time off sick take it ,you need to allow the preds time to get the inflammation under control and the only way to do this is rest.

    Your health is important but you need to take charge of it and do your best to recover

    I know we all like to think we are indispensable but work will get by without you

    You have to decide for yourself but if you have GCA/PMR I would seriously consider sickness .I know at the start of this journey I was not fit to work I could not even get out of bed or dress myself at the start let alone go to work.

    Best Wishes


  • Thank you Rose. I will speak with GP today - I am on 24 hour call at work so unless on annual leave my phone can go at any time which is stressful in itself. The tendonitis is just making things more difficult. Thanks again 

  • I think you really do need to sit down and think about this and discuss it - possibly with someone with experience of counselling in chronic illness and certainly with the GP to find out what is concerning him and his lack of support about sick leave. I'm blowed if I can see why he came out with that sort of very unhelpful comment.

    If you have GCA it is a serious illness. If you have PMR it is a disabling one albeit not life threatening. Neither of them do well in response to stress - and if you have a stressful job it is likely to become a very vicious downward spiral. If you have tendonitis and have to use that limb it only makes it worse - tendonitis requires rest and management. It may respond to pred - or the pred may actually aggravate it.

    While getting from 40mg to 15mg is probably what most rheumies would like to see - I have a suspicion that a bit more pred for a bit longer at the beginning may achieve a better longterm result for many people. It sounds to me as if the PMR part of your illness is still very active - and not being helped by your situation. I would struggle with the sort of demands you are faced with and I am VERY well for a PMR patient at present! You are not alone in expecting to be able to cope with GCA and a stressful job - and there are several people on the forums who started off as you have done - but didn't get better until they had extended sick leave and considerable support from Occy Health and their employer. GCA does come under disability law and I think discussion with your union if you have one and Occy health is called for.

  • Thank  you so much for your advice PMRPro, I spoke with my GP who is lovely and very sympathetic, but not much else. I did say I am on annual leave this week - I will go back for 2 weeks to tie loose ends and will contact him to be signed off, which he said he would do - going to be bold and sign off for 3 months - which he has agreed. I think otherwise I am going to be up and down like a yoyo. We will look at it again then. Not sure how my work will respond and it may jeopardise my role but quite frankly, other than being paid well it is an awful job so maybe time for life change at the end of this?? 

    Yes my Rheumy appointment is tomorrow and he wanted me at 15mgs by this appointment, which I have got to but in all honesty - not sure the PMR is under control was on the dead slow method going to try 14mg, but had jaw pain and headache earlier (seems to have settled), so going to see if I can just sit at 15 for a while. 

    I have several raised markers on my bloods and  a low one, which the GP said he has sent to the Rhuemy because he is not sure about them. So will see how I get on tomorrow.

    But I think emotionally, I have crossed a hurdle by admitting I need more time off. 

    Thank you as always for your sensible advice.

  • Do try and find out what they are! And the numbers.

    There has been a mention of fibromyalgia on this thread - on another PMR forum a couple of people have found they have very low vit D levels, have been put on high dose vit D and found that after a few months the symptoms that had been labelled as fibro have gone. Not saying all fibro is vit D related but it is something that is easy to measure and rectify and takes one thing out of the equation.

    Being in an "awful job" is enough to make any PMR/GCA symptoms worse. I do realise the implications of leaving a job these days - but hang on to the GCA diagnosis as possibly instrumental in the process of attempting to recover.

  • Just a thought, my daughter was diagnosed with tendonitis and migraines.  She was treated for this for 4 or years and then a second specialist told her she had fibro myalgia!!  As I said , just a thought.

  • Thank you Lynne99 - will have a word with my Rheumy tomorrow. 

  • I've recommended before that when people are having communication problems with their doctor they could consider taking someone to the appointment with them, perhaps someone who could ask questions which you might be forgetting, that kind of thing.  And a witness to support you when you try to describe your condition.  A family member, a trusted friend?

  • Thank you HeroonNS, 

    I actually managed to speak up for myself, before, although he is lovely I seem to leave feeling I am being a moaner and need to just get on with it, but today decided enough was enough. So going back to work next week (I am off this week), to tie things up then going to ask him to sign me off for 3 months. 

    Thanks for you response as always

  • Good luck!

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