Next steps!

[Griggser]

No pun intended by the title but I'm wondering what my next steps should be as I am really struggling and especially with the walking? Up hill is a complete killer and I ache for days after. Currently between 19mg and 18mg on the slow method of reduction but I am in constant pain in the hips and some discomfort in the shoulders with no energy or any get up and go. I have been on half days at work for about 6 months now and still very tired all the time with aching eyes. Not sure if I should be asking to see the Rheumy again or wait until September when I'm due my 3 month check up. Just fed up with this horrible illness. There is so much I want to due but cannot or if I do I suffer the consequence. Very frustrated!

[Celtic PMRGCAuk volunteer]

Griggser, I can both sympathise and empathise with the body complaining bitterly if asked to tackle a hill - even a small incline would feel like Everest! My best advice if affected is to avoid them and stick to flat ground to avoid payback.

I see from your previous posts that you have been on a bit of a roller coaster ride with your reductions and your treatment, and started with an unnecessarily high dose for PMR which may not have helped. Plus you have to work, and I've always been in awe of those of you who work whilst battling PMR.

Is it possible for you to take a period of sick leave rather than continue to work even half-days to see if that helps? Also, are you taking Vitamin D as any deficiency can cause pain in similar areas to PMR. A Vit D blood test can show up deficiency. If it was me and I was continually unable to reduce from the high doses in spite of following a slowly slowly approach, and all other possible illnesses had been ruled out, including LORA late onset rheumatoid arthritis, I would be seeking a second opinion.

[Griggser in reply to Celtic]

Hi Celtic, Thanks for the reply. I know that taking periods of sickness or holiday help for sure but after 6 months of half days I'm in danger of running out of sick pay! Not sure what to do to be honest but stopping work does seem like a plan. I am also concerned that if I give up work and then feel better I would want to work again but would not find such a good and well paid position. I suppose I need to be really bad and not be able to cope at work which will then force the issue. I guess the Rheumy will give me a steer but has already said that I should think about permanent reduced hours or retirement. Once I have seen the rheumy the company Occupational practitioner (Dr) will also advise my company of what he thinks is best. I just feel too young to stop work and worry about how I would keep sane!!! Not sure about vit D deficiency, I get outside a fair bit and have a fairly balanced diet of freshly good food with plenty of veg and have increased my fruit intake as well. Still finding it hard to resist cakes etc but keep trying. Certainly cut back on coffee and potatoes, white bread etc.

[Celtic PMRGCAuk volunteer in reply to Griggser]

The question of whether to battle on with trying to work whilst PMR runs its course or to retire is a very difficult one, and one that only you can answer. My feeling is that our health is so important and should come first, but I realise it is a very personal decision.

Do ask for a Vitamin D blood test. Even if you have been prescribed the usual calcium + Vit D pill alongside the steroids, it will not be sufficient Vit D to restore levels to normal. Only a 3 month course of high dose Vit D (Colecalciferol) will do that, and then the usual calcium + Vit D pill should maintain that level.

It sounds as though you are doing well with your diet (well, apart from the cakes, that is!). Including plenty of oily fish is good as it is known to be one of the best anti-inflammatory foods - good for your bones as well.

[PMRpro Ambassador in reply to Griggser]

Diet does not contribute to vit D - less than 10% and even that requires you eat a lot of oily fish, eggs and mushrooms. There is none in fruit and veg! The skin factory is unreliable as we age, making less and less, and if you use make-up or sunscreen you make even less.

In the UK this summer it has been recommended people take supplements because the weather has not been conducive to production of vit D from sun! Even where I live in northern Italy where theoretically you can produce vit D from sun all year round (you can only do so between May and September in the UK and similar latitudes) about 80% of the population as vit D deficient!

I can recommend early retirement if you can afford it - it is always possible to find something to occupy idle hands! And it does allow you to have a life with PMR - you don't have to keep all your energy for you employer's benefit!

[11caroline29 in reply to Griggser]

Hi Griggser. Unfortunately feeling so like you at the moment. Hills and steps are a no no. I feel this is due to muscle weakness caused by 13 months of steroids. Started on 40mg and the reduction from 17.5 to 15 has been very difficult over the last 6 weeks even with the Mycophenolate which I would now like to stop. I seem to have had so many flare ups on reduction. As for work and retiring it is a very difficult decision which was really made for me by my Occupational health doctor. So at only 50 I am waiting for my ilł health pension! However I miss the routine and company at work but need to put all my little energy into dealing with PMR & GCA as well as family life. I am sure you will eventually make the right decision for you.

[Griggser]

Hi Caroline, sorry to hear you're finding it so difficult. I hope you start to see an improvement once you stop working.

I have made an appointment to see my Rheumy in two weeks as I'm not in a good place and hope he can suggest something to help. I really don't want to try any other drugs but it might be I have to!

I have also been suffering for a long time, pre steroids, with numb/tingling toes and feet. Lately if I sit for a while, especially after a long drive, it feels like someone has hit my feet under my heel with a hammer. Seeing the doc next week about this as the last time I spoke to him about it he said lets sort out your hip and shoulder pain first! Well we are no further down that path so I might as well try again as the cumulative affect of this with Fybromyalgia and Polymyalgia is getting me down.

I think what will happen eventually regarding work is the decision will be made for me i.e. My employer will not sustain my sick leave! I have been on half days and doing some work at home for 6 months. Today I just couldn't face going in as feeling rubbish. My eyes really ache as well today!

Off to get some blood test done in a min and will ask about vitamin D levels.

I feel really bad for my wife who is so fit and active, we are the same age, as I stop her from doing so much. We have always done things together so it's difficult to do separate things now and I find walking, which we both enjoy normally, so difficult.

Anyway good luck with your recovery.

Brian

[HeronNS in reply to Griggser]

Brian, I see this post is nearly three weeks old. I hope you got some good outcomes from your tests and are feeling better

[Griggser in reply to HeronNS]

Anhaga,

Thanks for your concern. I put a newer post on headed No Pain No Gain!! Basically I have agreed with rheumy to drop from18/19mg to 15 for 2 weeks then 12.5 for two weeks the 10mg. This is to see if I get worse as I have questioned if PMR is the right diagnosis. I also am going to have an MRI scan.

Hope things are good with you.

Brian