SHOULD I TRY TO TAPER OR WAIT@

[seamaid]

A tale of woe, I w

had tapered to 11 mgs pf my Preds and planned to reduce to 10 in Dec BUT then life took over, first |I had Covid= not very bad at all I swore it was a cold and took Lemsip !! , as Christmas was nearing , decided to forget the tapering until Jan , One family death then three family birthdays later I was having trouble breathing - I had been for a while- saw a dr F2F who referred me to Cardiac Unit, , next Video chat to Cardiac nurse who told me to go to out local hospital they will be expecting me if my son could not take me dial 999 , my Blood pressure was mounting. to cut long story short, nine days in Hospital angio , tests ( especially for my BP which as astronomical when I arrived there ,Systolic 255, now home worn out ,more bloods to be taken next week and an appointment for a pacing clinic next month with a view to having a pacemaker. Question is it is safe to stay on 11 mgs of Preds for very long, At the moment , surprisingly I am only getting some discomfort in one arm and am wondering should I in fact put the dosage up .! I have no idea what I am doing only been on here since August

Best wishes Pat

[PMRpro Ambassador]

Is it safe to stay on 11mg for very long Well, if it isn't there are a lot of people on here in a very lot of trouble!!! I've been on pred for nearly 13 years and for a very large part of the time at above 10mg - I have a bit of thin skin on my shins and really is the only identifiable effect. And people with GCA can be above 15mg for months, even years, having started at 80mg/day or so.

I, too, needed a pacemaker inserted nearly 7 years ago at the age of 63 - just stick where you are comfortable for now. It is very possible you might need to go up when they do it - it isn't too bad at all but it can be a bit sore when it is done for a week or two. You don't want to risk a flare. And the pacemaker does sort out problems

Have they said what they think the problem is?

[seamaid in reply to PMRpro]

Thank,s PMR pro I am usually quite laid back but this has shaken me a bit, I was too pleased with what I had managed up to now, Pride comes before a fall. basically I have " unstable Angina and a heartrate that likes to go disco dancing, " so can really understand what is happening , it would be fantastic to be able to breath again if nothing else ! 😀

[Nextoneplease in reply to seamaid]

Thinking of you seamaid and hope they sort that pacemaker for you soon 😊x

I don’t have a pacemaker myself but I have had various heart problems and I know how they can knock your confidence. Do stay the positive person you are, though. The good thing is that pacemakers can work wonders and it sounds like the medics are on to it. Good luck and keep in touch x

Hugs, Nextoneplease xx

[PMRpro Ambassador in reply to seamaid]

I think the thought of a pacemaker scares most people silly! I was in for a few weeks a few years ago when they identified my atrial fibrillation and there was a lady in the same room who was having syncopes - due to bradycardia events. The obvious answer was a pacemaker to prod it when it went on go-slow but she was utterly devastated and wanted to go home and not have anything done. I sat with her for ages a few times explaining it all to her - and she did in the end go off reasonably happily to have it done. I have seen it a few times - lack of knowledge I suppose, I couldn't wait for mine!! Nor have I ever considered it a problem - just very grateful I have it

[Blearyeyed]

Generally speaking , it is better not to taper from your current dose while going through any added Stress ( negative or positive extra activity beyond what your body can cope with ) or Trauma , like the events that you are experiencing in your Medical and Family situation at the moment.

you don't want to kick the bear while its sleeping , so tapering before you have your other medical issues under control could just add more medical problems and symptoms to the list you have already.

The only exception to that rule could be if the steroid dose you are on may effect your symptoms or your future treatment for your Cardiac conditions , but you need to discuss that with the Cardiologist and also ask for your Rheumatologists opinion about that. They may , of course, just give you the advise to taper because that is their preferred course for your treatment to take , but if that is the case , you would need to tell them you will need time to take that slowly , and you will need to keep your activity at a minimum and look out for any changes that mean you need to stop tapering as you go.

As Pro says , it is likely that you may be told to increase your dose after any type of surgery to keep the pain under control as you recover.

Hope things get resolved soon , take care

[seamaid]

Thank you very much for your replies I have calmed down now and just have to go with the flow . all best wishes to everyone x

[tangocharlie]

Never try and taper until you feel really well on the current dose, or things just get worse if inflammation builds up again. Winter is also a hard time to try and taper.