I have been struggling for the past few days with some pains in my upper arms / shoulders and wrists, this is mainly first thing in the morning and last thing at night when Im sitting down. the pains have been bare-able but quite annoying.
I have been taking 12.5mg preds, this was after a reduction from 16.25 mg over 3 week period (by Rheumatologist request) , he actually wanted me to reduce further down to 10mg but I didn’t because I didn’t feel well enough to do so.
I have been splitting the dose by taking 7.5mg at 6 am and then 5mg at 4pm.
Last night, I accidentally took 7.5mg which should have been 5mg. I have woken this morning feeling much better than I’ve felt for a while.
I am toying with the idea of increasing preds to 15mg, I am a little concerned though, surely if I increase the dose it would make me feel better but would also compromise my immune system even further?
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Leepeelee
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15 Replies
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Hi, sometimes we find a split dose that works by accident. I take the majority of my dose at 10pm with a little 2mg kicker in the morning. My 5mg night dose is coated so kicks in for the 4am cytokine dump. Maybe you have just hit your correct split.
To be honest if a new split works because you are hitting the inflammation heavier at the right time, then you may not need to increase. I think that isolation/distance, hand washing and not stressing the best approach to covid. I will keep fingers crossed you have found your current dose. And don't forget you do have to rest and not force things too
If it works for a couple of days, I would. If you feel rubbish again you can reconsider. The point is if you can reduce the impact of the morning inflammation "dump" I have found it doesn't hit me so hard later. Once you know how long you feel ok then the second dose can be taken 2 hours before that if you want to split that way. But you do have to control stress and relax as much as possible...hard I know...but that will help too so you are not using all your fake cortisol up on fight or flight response to stress in current climate.
I saw a Rheumatologist under a private route (not NHS) he took me as far as getting a diagnosis for PMR and then told me that my doctor can take it from here.
From reading lots of the posts on here, it looks as if lots of you have ongoing contact with a Rheumatologist (or nurse)
Not necessarily. I think most can be treated by a GP. I was referred as 'atypical', whatever that means. I have been lucky he has been ok, but a goo gp is better than a "bad" rheumy.
No, many UK patients are managed by GPs and under the current circumstances you are likely to find it very difficult anywhere in Europe (and the USA as well probably) to see a specialist, Here all non-urgent appointments have been stopped. I had one on the 1st April - no more. Rheumies will be redeployed within the hospital I imagine.
If your GP needs advice we can supply links to info for them.
It's your choice - but until you are off pred your immune system is compromised anyway and it is the social distancing approach you must employ as best you can.
I think you should try Poopadoopy's suggestion first - but if you need more you need more. The drop your rheumy suggested was crazy - more than 10% of the current dose and over such a short time. Or try taking the dose you take later in the day even later, maybe immediately before bed and the rest of the dose later in the morning.
I am currently self isolating in my caravan on the driveway! Just had one child return from Spain and another is stuck in France, we are keeping our 11yr old off school now regardless of the advise!
I’ll probably have to stay in the caravan for several weeks!
I hope it's warm and comfortable enough in there , you don't want to end up catching a normal cold or other bug because you are having to self isolate , that won't be much help.
I'd be tempted to dump the Generally Healthy in the caravan !😋😂😂
Do take care .
And , if you do choose to return to a higher dose let you GP know as soon as possible to make sure that they give you the right amount of steroids on your next prescription. You can give them a message by phone via Reception you wouldn't need to go in.
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