Hi all, I had a repeated high potassium blood test recently, and thinking it might be linked to some of my meds (propranolol/ etoricoxib) I decided to take a break from most of my meds, including pred. I've had a synacton test a few years back and always seem to retain decent adrenal response, so ceased from 5mg 2 weeks ago. I've never had raised inflammatory markers so the 'best' diagnosis I have had is spondyloarthropy in 2019 from Leeds. I started with classic PMR symptoms in 2015 IE couldn't raise my arms, roll of the bed etc. So far I have mild stiffness in my upper arms, and a lot more in my lower back, but surprisingly coping just about. certainly wouldn't say I feel better for being mostly med free (just statin / blood pressure and 100mg tramadol otherwise would be completely non functional IE pain would be too much to work etc). I work from home since COVID which has made life much more bearable, heated pad on my chair etc.Think I'm going to stick it out for a few weeks to see how I am pred free but not afraid to go back to 5mg as quality of life is critical at 58.
Interested in any thoughts and experiences, I trust this group more than drs as I don't think they will have any more ideas.
Cheers David
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David-F
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I do hope you had doctors approval to stop meds, although it doesn’t sound like it…..and I think the high potassium was more likely to be linked to your BP medication. I had similar last year with my candesartan, and resolved the issue by cutting down on potassium rich foods, mainly bananas.
Stopping Pred at 5mg could lead to adrenal insufficiency - which could be very serious - have a look at attached for general info on adrenals/Pred -
Like DL, I hope you sought permissiona and advice before stopping your medications. Above all, suddenly stopping pred when still at 5mg is very likely to lead to problems in terms of adrenal insufficiency. A synacthen test "a few years back" is hardly representative of their function after a few more years of suppression and even at 5mg, that can be considerable. An adrenal crisis can be life-threatening so please do be careful.
It also occurs to me, raised potassium can also cause muscle problems. I think you may be confusing the issues and the solutions
Hello, what did the doctor say about it? From what seems like a go it alone approach it seems the doctor just shrugged their shoulders? If they did, either it wasn’t very raised at all or they are a bit cavalier. If Pred messes with potassium it’s usually the other way with a rise in sodium. BP meds are the most likely culprit especially if they are potassium sparing. Stop them with the doc’s knowledge so they can warn you are any issues you need to be aware of.
Interestingly though, low adrenal function can cause raised potassium. A Synacthen test a few years ago may well not be a reliable guide to now either because bodies change, circumstances change. What dose were you on back then if you are still on 5mg now? Were you lower but have had to go back up?
Your discomfort is a worry. Don’t forget Pred is keeping inflammation at bay so it isn’t about toughing out the pain, it’s stopping the damage the inflammation could be causing. Tramadol is just obliterating the pain not the cause of it. If you are just about coping I’d be worried about a full blown flare developing with a need to go even higher in Pred to get it under control which would really be a backward step. Also, there is the risk of development of GCA or large vessel inflammation which makes 5mg look like child’s play.
Completely agree with the experts.You should not just go from 5 mg to " cold turkey".
It's not just the inflammation that steroids effect and even if you had a good test years ago , your body will not react well to such an abrupt change , even a healthy body wouldn't.
It can take time to show up , but even if your adrenals are in working order they aren't prepared to go from 0-60 after standing unused in the garage for years.
This can cause a bad reaction in your Autonomic function not just cause the chance of a return of inflammation or adrenal issues.
If you want to come off the steroids more quickly and think you are capable you would be better tapering down 1 mg a time over a quicker period, even dropping 1mg a week if you feel you must go that quickly, while preparing your body for the change and extra work it needs to do, with good hydration , a high nutrient diet , and some exercise within your comfort zone to help your joints , muscles , adrenals and nervous system to cope.
Otherwise , you have the high probability of needing to do an unnecessary Yo-yo.
At the moment your Tramadol will be dealing with the nerve pain but if you are already beginning to feel some stiffness this is an indicator that some inflammation could be building up. You may not have high inflammation markers for some time but that could just be because some people don't. Especially those with nerve pain issues because they often feel the pain much earlier than those without nerve sensitivity and often react quicker with a dose change before the inflammation has built up to produce the higher markers normally expected in blood tests.
As others have said , if Potassium levels are the issue blood pressure medication and conditions are more likely to be the medicinal cause for that and it is better to discuss this with the GP and also look at your diet, and reduce the intake of potassium rich foods until the balance returns and improving your water intake to improve your kidney function and general healing as your rapidly taper. As well as , looking at the diet in general to ensure you are eating a diet for life rich in the nutrients you do need to cope with recovery after reaching Club Zero.
In simple terms , stuff like this needs careful preparation , so be a boy scout and Prepare.
Remember , it's the tortoise , even if you choose to be a tortoise on roller skates that wins the race not the crazy hare. Take care , Bee
Thanks for everyone's helpful comments. I've been mostly on a lot less than 5mg over the last 6 months, more like 1-3 mgs, and am aware of the adrenal crisis symptoms etc. Potassium is now back to normal, my main aim was to cease propranolol and etoricoxib as I think these may have been the cause. I've now switched to short release propranolol as I do need it at time for migraine relief, which works very well. I've been considering a break from pred for some time as my 'diagnosis' has been largely inconclusive and I'm not convinced pred is helping as it should. I appreciate it's not an easy diagnosis to make but am wondering if I even have PMR as such. On balance I've felt that side effects are outweighing benefits. I generally get v tired early evening and it's really getting me down tbh. I'm back to swimming and some light gym work and I'm trying more active healthy eating approach for the next few months to see if that helps.
The tiredness will happen anyway even after you get down to Club Zero because it takes time for the body to completely recover after a long term illness or a medication that changes your Adrenal function.Those symptoms continue to happen for as much to a year after getting off the steroid entirely , even if your tests show the Adrenals are functioning because of general state of health and because the Adrenals may be working but the entire system , and Autonomic responses are not as fast or efficient.
It were pacing yourself is key and working from your comfort zone slowly is important.
The tiredness will happen anyway even after you get down to Club Zero because it takes time for the body to completely recover after a long term illness or a medication that changes your Adrenal function
Not everyone is the same, can’t say I was particularly tired after I came off Pred -think all of that came during the previous year during my taper from 6 down to 3mg.
I certainly found a very noticeable change in my overall mood and body about 6months before I took my last Pred -at the time I think I described it as having a weight lifted off my shoulders. Whether that was down to adrenals or GCA waving goodbye - or both- I shall never know
Yes I agree, I know it's a long slow road but the high potassium was a tipping point to try a slightly different approach. Bit like a reset then review over time.
Thanks once more for the support, I think I posted initially as the inflammatory pain was returning and wasn't sure what to do next. I've resumed 5mg pred and will try a long slow taper. I'm pleased I've reduced my overall medication intake and bloods are normal now. This condition of gets very frustrating at times being so limited in what I can do in the evenings. I guess one difficult question is how to distinguish steroid withdrawal from actual inflammatory pain/ fatigue, as they seem very similar?
Using one of the seriously slow approaches for your taper is one eliminating factor - the smaller the change in dose and the more gradually it is introduced, the less likely withdrawal symptoms are. They tend to be much the same at any level - and usually appear immediately you change the dose and then improve in the following days. A flare of the infammation symptoms usually take some time to manifest, days, even weeks, and once established get worse with time. It is important to get to know YOUR version of PMR and how YOUR body responds to pred or the lack of it since everyone is a bit different, Keeping a diary helps there.
Because they can be similar, the timing is really the key…if pains return immediately after a reduction and last a few days before disappearing that’s usually steroid withdrawal. If they don’t appear until about a week or even longer after the date of your last reduction, that normally indicates a flare.
Thanks both, that s really helpful and makes sense, I'll start tracking my symptoms against a slow taper. I never need more than 10 sometimes for a few days after being on less than 5 for a few weeks, but this will be more accurate I think
That sounds as if 5mg is just very slightly too low to manage all the inflammation each day so it is building up again. Then you clear it out again with the 10mg for a few days and start the process over again.
Further to PMRpro’s comments, if 5mg is slightly too low (and I agree) it might be sensible to take a little extra - say 6mg for now. That might stop you having to go up to 10mg on what sounds quite a regular basis. That’s really not the best way to approach it. Your PMR needs what it needs..
Just thinking back the first week not taking pred was ok, which makes me think this is the inflammation coming back rather than withdrawal, so your advice makes perfect sense. Just going back to my raised potassium I also take candersatan ( along with propranolol and rosuvastatin) for my cardiovascular health. I had thought it might be the propranolol and / or etoricoxib but hadn't thought candersatan might be the cause?
Well that’s what definitely caused mine, not on anything else,.. and it’s listed as a common side effect…GP didn’t want to change it because it’s keeping BP well controlled. So I printed off some info -and adjusted diet a bit - didn’t take much to reduce it. Second test was fine. Will see at next annual check up if I’ve kept it okay.
If it’s only slightly raised doesn’t need much changing.
Sometimes the potassium can be raised because of mishandling of the sample - so it should always be checked. but that was fair enough. I wonder which it was!!!! Better to change one thing at a time then you know which did what.
I guess on balance I'm reassured that the medication prescribed is needed and doing it's job. I feel much better after 2 days of 10mg pred, slow taper to come but not going to far or fast this time. Appreciate all your help.
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