Should I increase preds, is this a flare?

[lesley2015]

Hi All

Would be grateful for some advice please.

Coming up to 15 months since diagnosis of PMR/GCA - rocky first year up and down with flares and contined to work except for two small periods off. However, I am coming to the end of a period of three months off work.

I am now down to 10mg preds, (in my third week) I also take arcoxia for additional non PMR related pain. I was hoping to make small drop soon to 9.5mg. But I seem to be getting symptoms back, really sore back, shoulders, additional sweats, fatigue and now sensitive at my temples and a headache which, albeit is intermittent.

Is this a flare or my body trying to adjust, I have been like this for about a week or so?

So opinions please, should I return to a stressful job? (If I dont go back now I am not sure I will return), do I increased my steroids or wait and see if it gets worse.

I have tried increasing my exercise and try and manage about 2 miles a day, this can be made up of popping up to put horses out to the field or popping to shops, not actually setting out to do this distance - is this too much? (I am 57) I just am aware of keeping my muscles as healthy as possible.

I seem to tire after about an hour of any activity, however gentle.

Would be grateful for your opinions or own experiences.

Many thanks

[HeronNS]

Have been on pred close to the same length of time. Although I've managed to reduce a bit further than you I'm experiencing exactly the same thing with tiring. It's just part of the PMR package, I think. Something about pred does this to us. The only answer, in my opinion, is to not be active for more than an hour, sorry to say. As for your job, not knowing you, your job, your family or financial situation, I'd say if you want to keep working you may wish to start looking for something less stressful.

[lesley2015 in reply to HeronNS]

Thanks HeronNS - I think that is the conclusion I am coming to.

Thanks as always for your reply and support.

I hope you continue to progress well.

[DorsetLady PMRGCAuk volunteer]

Hi lesley2015,

I would say if pains have only come on in third week of being at 10mg then it is a flare. If it were just steroid withdrawal then pains would have come on in a day or two.

I see from earlier posts you started at 40mg, and you say you have already had a couple of flares previously. 40mg to 10mg with flares inbetween would indicate too quickly a reduction to me.

Wouldn't suggest you wait to see if it gets worse, if it's a flare it most surely will. Why not try going up to 12mg or 13mg and see if that helps. If not, then you may have to go upto 15mg.

As Heron says 10mg can be a tricky dose for some people, and you may be, without realising it, getting stressed about your return to work, which obviously isn't helping.

As for work, as already said, you are really the only person who can make that decision. Whatever you decide, you need to get yourself back on an even keel first, and unfortunately it would appear that an increase may be the only way to do that.

Hope things soon improve.

[lesley2015 in reply to DorsetLady]

Thanks Dorset Lady, as With Heron NS always sensible replys, which deep down I guess I knew, but always hope some may say something like ... have a good nights sleep and you will be fine in the morning!! wouldn't that be lovely?!

Will increase preds to 13mg tomorrow and see how I get on.

Many thanks - I hope you are well

[DorsetLady PMRGCAuk volunteer in reply to lesley2015]

Yes that would be lovely - but unfortunately only in fairy tales -and the movies!

I'm good at the moment, thank you.

[Celtic PMRGCAuk volunteer]

Lesley, those symptoms certainly do sound very much like a flare - the only way to know is to increase the dose back up to where you last felt comfortable, and the sooner the better so as to get on top of the increasing inflammation before it takes too much of a hold which could then entail increasing to an even higher dose. It's more unlikely to be your body adjusting to the 10mg dose after 3 weeks on that dose. Any withdrawal pain usually starts very soon after a reduction and then improves after a few days. Pain that comes on a week or two after a reduction usually points to a flare.

It isn't uncommon to experience difficulties with reducing from around the 10mg point (likewise it seems from the 5mg point), plus it isn't uncommon to have flares in the inflammation during the first 12-18 months of treatment.

As for returning to a stressful job, I know that I could never have done so whilst still on doses above 10mg. The stress involved is likely to further aggravate your present problems. A very personal decision that only you can make. Firstly, if it was me I would increase the dose by 2-3mgs and hopefully you will see an improvement in the next few days and that will at least answer one of your questions. Good luck!

[lesley2015 in reply to Celtic]

Thanks Celtic - I agree with what you have said, thank you.

Deep down I know I should not be working but it is a difficult decision to make. I think perhaps I need agree to give myself enough time to recover which may mean leaving this job.

I just find (as I know every one does) it so frustrating to be going back up again ... I really wanted to get below the 10mgs and lose this awful moon face and spare chins! Which I know sounds very shallow ..... when I should be considering my sight is fine so really I am very fortunate.

Thank you for your support and always, as with HeronNS and DorsetLady, very sensible advice.

Lesley

[Celtic PMRGCAuk volunteer in reply to lesley2015]

I can so understand that it is a difficult decision to make - I was retired so know I am blessed that I didn't have such a problem to worry about. Perhaps there might be a possibility of eventually returning to work on a part-time basis with another person taken on to job share? But, as I said previously, tackle the flare first and hold off making any definite decision until you feel better - easier to concentrate on making the right decision once on top of the pain and less tired.

[lesley2015 in reply to Celtic]

Thanks Celtic, have increased to 12mgs today as head now continuous - work is really complicated and will always be stressful, but at 57 its another 10 years before my pension, and the thought of appying for new jobs when I still have pred head (fog) and chubby chops is not appealing - so almost the devil I know etc. Will see how this week progresses with the increase and try and then sit at 12 then 11mgs if all ok. Hopefully decision, as you say will be easier when not in pain etc. Thank you

[IdasMum]

Early days for me and I am so pissed off with double chins on my double chins.

Good luck with your decision....and I hope you're soon back on track

[PMRpro Ambassador]

The tiring isn't necessarily just the pred - PMR will do it all on its own! Do as much exercise as you like - providing you don't get overtired. If an hour is too much at one go - do two lots of 1/2 an hour. That worked for me.

And I'm dropping in to also say the same as the others.

The fact you have returning pain after 3 weeks of 10mg suggests that whatever the previous dose was was enough to manage each daily extra bit of inflammation - 10mg isn't. The dripping tap has filled the bucket and it is about to overflow. Don't leave it or you run the risk of a major episode and having to raise the dose a lot more than if you acknowledge it.

If you can manage without the income - do consider not going back to a stressful job. If you are flaring now after 3 months of rest then who knows how working again will affect you.

I lost my moonface and chins at 15mg - but only by being really consequent with my diet. It can be done - reducing carbs drastically will make your body burn the fat for energy and reduces those fat deposits.

[lesley2015 in reply to PMRpro]

Thanks PMRpro, felt it was definitely the TA this morning, so upped by 2mgs, not sure yet if it has made a difference - doesn't appear to have so will see how I am in the morning.

I Try and cut out most carbs and my face has reduced a little, but weight static, not gaining but not losing. I think I may have been eating too much fruit so have tried to switch to more veg this week and protein - so hopefully may see some results.

Work is tricky, I do not really want to go back but financially it would give us a better quality of life and secondly, the staff keep saying they are counting the days until I come back, so I sort of feel responsible. Although, really I know my health must come first.

Thanks as always for your sound advice!

Hope you are doing well

[PMRpro Ambassador in reply to lesley2015]

If you can afford to live without the income - your quality of life without the stress will be worth far more than the money. We retired early on a greatly reduced income compared with what my NHS consultant grade husband was on. We have never regretted it for a moment. You spend far less when not working - you have time to save money, no travelling and no expensive clothes to buy are just 3 items off the top of my head! And health is worth a LOT!

My granddaughter, on anything up to 40mg of pred for asthma when wheezy, said today: "Embrace the face"

[lesley2015]

Thanks PMRpro,

Sensible advice, its is doable if things stayed the same..... hubby had heart attack 10 years ago with two stents and has had two further stents a year ago, so just the ongoing realisation that things can change very quickly - if he was not to work we would be in a right old pickle, having said that health is definitely more important.

Its a bit of a conundrum!

Embrace the face , bless her - children are so much more accepting than us oldies I think.

[PMRpro Ambassador in reply to lesley2015]

She's 16 - very very pretty and has gone from a UK size 8 to 16/18 because of pred. But it has kept her alive...

[lesley2015 in reply to PMRpro]

Well - we have to keep it in perspective - it's a wonderful drug in many ways - it's easy to feel frustrated when we bloat and the pain has diminished - but it definitely helps so many people and either keeps us alive and/or a decent quality of life. Well done to your neice it must be even harder when you are young.

I took the advice and went up 2mg - pain gone - so will sit at this level for a wee while - good old steroids 😉

[PMRpro Ambassador in reply to lesley2015]

2mg is a very low dose - if it is enough to make life more pleasant, don't worry about it.

[lesley2015 in reply to PMRpro]

Thanks PMRpro - hoped 2mgs would do it but went up another 2.5 today, headpain, temporal tenderness with dizzyness (which is new). So feeling frustrated but poorly enough to accept the increase.

[HeronNS in reply to lesley2015]

I expect that your worry over work situation isn't helping. Hopefully once that is sorted you'll be able to relax and the disease will retreat somewhat again. 💕

[lesley2015 in reply to HeronNS]

Thanks HeronNS - I am sure you are right. I have decided to give my notice in this week - or I think the condition will drag on even longer. Financially it will mean we are tight, no holidays or breaks or luxuries ..... but feeling like this I cant go anyway and don't need any luxuries, my health is the best luxury I could be given!

[PMRpro Ambassador in reply to lesley2015]

If you have head pain and temporal tenderness - don't ignore it. That low dose won't manage GCA rearing its head. Discuss it with your doc if it doesn't improve.

[lesley2015 in reply to PMRpro]

Thanks - did today and have increased preds xx

[christine2715]

Have you thought of asking if you could go part time re work. Maybe a job share. You could offer to train your work partner.

[lesley2015 in reply to christine2715]

Thanks Christine - they have already put a temporary manager in who manages completely differently, I have about 7 staff members threatening to leave already, so I think I would be better on my own.

The heat this week seems to have upset me, not sure if you are struggling with it too? (head ache and dizzy)

[christine2715 in reply to lesley2015]

Yes, the heat doesn't help but I am going through a bad phase anyway with flares. Headaches, sinus, oedema, joints suddenly fixing, cramp, Leg weakness, aching neck, a feeling of having a removal firm in my head etc. then there is weight gain, hair thinning, getting facial hair, I seem to have it all at the moment!!

[lesley2015 in reply to christine2715]

Aw bless you - I don't have the sinus (yay!) but have all the rest and tinnitus, palpation's and other bits.

Have decided ( after great deal of thought and problems making a decision - preds can do that too!) to resign this week. Just don't think with the daily changes this condition offers that I can realistically carry on working at this level - so going to give myself a chance.

As you have said there are so many extra side effects in addition to the condition - its a challenge just getting through someday without having to work.

Best wishes - hope you feel better soon.

[christine2715]

Good luck, I gave up my part time jobs - just one small one now.