Tapering question

[CycleCycle]

Hi

First time to post I am a 62 year old female I have had PRM for 20 months now, it has been an interesting journey, first coming to terms with having the condition and accepting that I had reduce the amount of activity I did each day. I have come to terms with this and now can still play tennis ( but a lot less), go for medium walks and discovered from taking up Yoga to just relax! . I also changed my diet to low carb, this working really well. I have been following this group since I was first diagnosed, it has been such a tremendous help, from the posts to the FAQs I have got most of my queries answered so thank you all you are a life line.

My question today is - I am currently tempering down from 4mg to 3mg (having successfully tapered from 5mg to 4mg) using your suggested tempering method. Week 1 was absolutely fine, very happy as this is the lowest I have have ever got. I am on week two and am waking up quiet stiff all over it gradually wears off by lunch time. The pain is mild I cope fine with it. So is ok to just continue keeping an eye on pain level and if it rising stop and stay at 4mg for another couple of weeks and try again? I had the Shingrix vaccination last Monday no reaction until Friday felt off colour and Saturday v unwell, arm swelled up slightly was very & sore & was very red & hot to touch, it calmed down on Sunday I am thinking the aches this week may somehow be a knock on due to the Shingrix vaccine reaction ??

Final question is about waking up Adrenals & do exercise to help wake them up. I do play tennis twice a week, sometimes I am very stiff when I get on court and by the time I finish I feel wonderful and all the pain has gone - I did read somewhere in one your posts that it is possible to plough through the pain to wake up adrenals and I have also read you should not do this as it may damage your muscles, interesting in any advice you have. Many thanks.

[PMRpro Ambassador]

Hi and welcome!

Remember that you are not tapering relentlessly to zero - you are looking for your lowest effective dose, the lowest dose that manages your symptoms as well as the starting dose did. I would say you have found that at 4mg and you are at the very least skating on very thin ice at the moment!! If the morning stiffness increases - back to 4mg and wait a couple of months before trying again. This is a lowish dose and to have got this far in 20 months is about par for the course - half of patients get from 15 to 5mg in about 18 months so you are slightly ahead of the curve. PMR does NOT only last 2 years - for many it lasts quite a bit longer so there is no deadline to meet.

It is also never a good idea to taper at the same time as doing something else - whether it is a jab or some other event!

A study did find that high intensity exercise did increase the production of cortisol in athletes - I am far from sure that that applies for getting adrenal function back to normal! If you can play tennis and not suffer for it next day in the form of DOMS, delayed onset muscle soreness, then you are probably fine to continue. But if you DO develop sore muscles because of doing too much you run the risk of the DOMS not resolving because of the effect of pred and PMR on your muscles slowing the healing process.

[CycleCycle in reply to PMRpro]

Hi

Thank you so much I fully understand exactly where you are coming from and it makes perfect sense to slow down and remain at 4mg pain free. I do admit I have been very driven to try to get down to zero by end of June and have spreadsheet outlining how I could do that!! I will now tear this up and take a more considered approach. I must admit it never occurred to me that the vaccine would affect tapering. It is also positive that I am making progress ahead of the curve so will take this as a win. I will also take on board your advise regarding DOMs.

You have really helped and given me clarity on best way to go forward and that patience is key.

Many thanks.

[PMRpro Ambassador in reply to CycleCycle]

"I do admit I have been very driven to try to get down to zero by end of June and have spreadsheet outlining how I could do that!!"

I'm delighted to hear you are tearing up that spreadsheet - the road to PMR hell is carpeted with those!! The "lowest effective dose" is the key - not getting off pred. But now you have a second consideration with the tapering - you not only have to keep the PMR quiet, you have to allow your adrenal function time to get its act together and do its job again. If the PMR is under control you can taper - but the adrenals take at least a few months to wake up from hibernation and function realiably again.

[DorsetLady PMRGCAuk volunteer]

The pain is mild I cope fine with it.

It might be, but not doing anything about it, is likely to allow it to get worse. so I'd go back to 4mg and nip it in the bud.. and then after a couple of weeks, id also suggest that you only drop by 0,5mg in future. many find below 5mg that's necessary.

1mg reductions at 10mg is okay - 10% of current dose, at 5mg it's 20% and gets exponentially larger as you drop down..invariably making it more difficult. Smaller drops will also nudge adrenals..and ploughing through has to be a very fine balancing act..

Would also add, the vaccine plus slightly too big a reduction probably both colluded to cause the issue.

[CycleCycle in reply to DorsetLady]

Hi

Thank you also very solid advice about pain levels, I will drop back to 4mg and once I am ready to drop down I will do it by .5mg. Your advice has made me feel all is achievable but it is not a race so I will slow down and take it at a slower pace. It is great just to have the reassurance I am so glad I sent my post as other wise I would just have kept going thinking the pain is ok when I know in the long term it could cause me more problems so very grateful for your advice, many thanks.

[DorsetLady PMRGCAuk volunteer in reply to CycleCycle]

Just a comment on spreadsheets... they can be very useful in all forms of life including PMr/GCA to monitor anything [plus my tapering plans of course!] - but they are there for information and to help you... not to rule you! 😲.

A plan is only that, a plan - open to change, not set in stone..

[PMRpro Ambassador in reply to DorsetLady]

I'm just so glad that spread sheets are a closed book to me!!!

[InTheMoors]

The pain is mild I cope fine with it. So is ok to just continue keeping an eye on pain level and if it rising stop and stay at 4mg for another couple of weeks and try again?

Sounds like the problems that have when trying to reduce. My consultant told me to take painkillers rather than up my dosage of prednisolone. He said that the prednisolone was a great painkiller and could be masking something else (still waiting the results of further tests). I was prescribed co-codamol 15/300. I try not to take too many.

It seems to be working for me.

It might be worth giving it a try.

[PMRpro Ambassador in reply to InTheMoors]

Pred is only "a great painkiller" if the pain is due to inflammation. If cocodamol is dealing with pain, it probably ISN'T due to PMR and I can accept that. However, I would dispute whether 1mg extra pred is riskier than 15/300 cocodamol on a regular basis longterm!

[InTheMoors in reply to PMRpro]

The consultant suggested that something else was going on and that is what I've recently been tested for.

The prednisolone is interacting with Rivaroxaban and giving me steroid purpura on my forearms. One of these 'split' the other day leaving me with an open wound that is only just healing.

I don't use co-codamol on a regular basis and in the last week I've taken 2.

I had my last lot of tests yesterday so I may get a clearer picture of what is happening soon (with a bit of luck).

[PMRpro Ambassador in reply to InTheMoors]

Pretty much ALL of us have had purpura and petechiae due to pred - whether or not we are on anticoags or not. I am on dabigatran, they were bad at higher doses of pred but my skin has improved no end since being well below 10mg.

I would suggest that they check your rivaroxiban levels - my husband was on apixaban and because noone told him not to take it at the same time as a specific other medication, it wasn't being excreted in the normal way so he had an ever increasing baseline, resulting in a blood level of 10x the therapeutic level. Which of course nearly resulted in him bleeding out. Our surgeons were aware but the risk apparently hadn't been communicated to the medics. I and our head of Lab Services did a personal experiment. It only requires a slightly too high dose for this effect to build up over time and the concept of a "One dose fits all and no need to test" is an absolute piece of nonsense. Even the manufacturers who claim that, know from a study that if you check blood levels, you can cut the bleeding event rate but at least 20%. But that removes the USP - no testing so very convenient for the patient. I'd rather be tested than bleed to death ...

[InTheMoors in reply to PMRpro]

Thanks PMRpro. I imagine that I'll be seeing someone about the tests and x-rays that I have recently had so I'll mention anticoagulants and see what they say.

Presumably the bloods that I gave yesterday will highlight any problems?

At the moment I feel that every 'answer' that I get creates more questions - every solution creates a new problem.

Very frustrating!

[PMRpro Ambassador in reply to InTheMoors]

"Presumably the bloods that I gave yesterday will highlight any problems?"

Not necessarily at all, depends what they asked for, Things like clotting times are separate and blood levels of DOACs are not routinely tested - it is just nerds like our lab boss who are interested. And when he circulated the medics who were committing the sins, all he got was an "Oh, really ..."

But you can't blame the DOAC entirely for the purpurae - we all get them!

[CycleCycle in reply to InTheMoors]

Hi

Thank you interesting approach but I have decided to slow down and stay at 4mg. My husband suffers from major back problems and has taken co-codamol in the past when things were very bad, but the side effect are very severe so I wouldn't consider using it all. Good it is working for you.