Tapering experience

[Specialised]

Hi All,

I haven’t posted for a couple of months but have been reading the site everyday and gaining valuable information while trying to come to terms with and manage this illness.

In order to provide context to my questions I’ll quickly update you on my situation.

I developed PMR symptoms in Dec 2023. In Jan, before starting steroids my ESR was 78 and my CRP was 144. I had a poor response to 15mg of prednisone. GCA was considered and I was referred to a rheumatologist. My GP increased the prednisone to 50mg. I had no symptoms for GCA and a Temporal Artery ultrasound was negative. As you would expect I responded well to 50mg and slowly started reducing.

I changed Rheumatologists, closer to home,. I was on 35mg and making slow reductions. My new Rheumatologist was keen to reduce the steroids much faster and has me dropping 5mg every week. This seems like a big drop based on what I have read on this site. It was going ok until I reached 20mg. I find now that I have pain and stiffness in the lower back and across the top of my shoulders. After I take my prednisone it resolves but I can still feel its presence.

I am due to reduce tomorrow to 15mg, but I am reluctant to do this so soon. In fact I’m frightened. My next appointment with my Rheumatologist is on 9/5. I don’t know whether to drop the dose and see what happens or keep to the 20mg until I see her. I even wonder whether to increase slightly given my symptoms.

Another question I have and I’m not sure if anyone can answer this, but is there any correlation between the level of inflammation before starting treatment and the response to steroids. I feel like my inflammatory markers were high. Maybe it takes a much larger dose of steroids to bring it under control and a slower taper to manage the ongoing illness.

I appreciate your thoughts.

[DorsetLady PMRGCAuk volunteer]

hi,

5mg a week is quick - but doable [perhaps] until you get to around 20-25mg - with or without GCA - but then you need to go much slower. ..as you discovered.

You should never attempt a reduction when you have a return of pain, and like you. I’d be thinking about returning to 25mg [the first advice is to return to previous dose] - and explain why you did that.

From 25mg down to around 15mg, it needs to be 2.5mg drops and at least 3 weeks intervals [although 4 would be better] - then smaller steps. However you may have a difficult discussion with your Rheumy on that.

As for blood readings and amount of Pred required to control things - not sure it’s an exact science - they just show raised inflammation but not what is causing it.

However, the more inflammation that has built up pre diagnosis, it’s reasonable to assume the more Pred you need and maybe for longer.. but from people’s experiences on here not sure that’s always the case. Starting on same dose, some have almost instant response to Pred, for others it takes longer .

[Specialised in reply to DorsetLady]

Thanks for your advice. I feel like it makes a lot of sense. I know the doctors are keen to minimise the steroid load, it is a shame that over the years it hasn’t really translated into any new treatments.

Hopefully I can have a frank discussion with my Rheumatologist about the speed of my taper. She needs to convince me that a fast taper is the way to proceed. It is easy to say that it should proceed a certain way but the reality is a different story.

I will see how I feel tomorrow. I am thinking of increasing the dose by 2.5mg.

[DorsetLady PMRGCAuk volunteer in reply to Specialised]

Okay -2.5mg might be a reasonable choice.

Trouble with Pred is doctors don’t like it -and we know it had side effects but what drug doesn’t… plus rheumatologists have a different view of drugs than cardiologists or oncologists…

[PMRpro Ambassador]

If the pain is just there in the morning and goes after taking the pred and since it is only a few days until you see the rheumy, I would stick at 20mg until then. He obviously doesn't think you have/had GCA and may even be sceptical about PMR.

As far as I know there is no correlation between markers and dose required at any stage - the acute response that results in that rise in markers differs from person to person and is not as meaningful as many doctors think. Your numbers are strange - are you sure about 144 for the CRP? Neither of them are specific for PMR.GCA and there could have been something else going on in the background. Have they been checked ongoing while you have been on pred?

[Specialised in reply to PMRpro]

The CRP was definitely 144 before treatment commenced. It then dropped to 14 and I have been having blood tests every 2 weeks and have the results have been good.

In hindsight I feel that the inflammation was slowly brewing for some time and then developed into the classic PMR presentation. I don’t know if that can even happen, everything about this illness is unpredictable.

[DorsetLady PMRGCAuk volunteer in reply to Specialised]

Many of us who took a long time to be diagnosed definitely knew something was brewing .

[PMRpro Ambassador in reply to Specialised]

I think it does - certainly tends to look like it whatever doctors say. There is a theory it happens overnight but I think that in most cases if they had known what to look for they would have identified it far sooner before all of a sudden the house of cards collapsed and they couldn't move.

[Specialised in reply to PMRpro]

True. If I had known what was brewing I would have sought help sooner. I had no prior health issues and put the aches and pains down to getting older. I delayed going to the GP because I thought it would go away. I also thought they would say “well you are 60 now, what do you expect”

We don’t know, what we don’t know.🤨

[PMRpro Ambassador in reply to Specialised]

I got that response from a GP when I was 51!! It is far too easy for GPs and patients to blame advancing age - although I'm not sure what decade my young-ish GP was living in. I was at the gym a few times a week and did other movement classes too - so it wasn't due to inactivity and being unfit!

[Specialised in reply to PMRpro]

It is ironic that we are struck down by illness that affects our muscles. I have always been incredibly active most of my life.

It seems like you are damned if you do and damned if you don’t, with regards to keeping active. Although I know PMR affects people with all levels of fitness. It doesn’t discriminate. My GP told me it was exercised induced, but my Rheumatologist said that was rubbish. There is no answer really.

[DorsetLady PMRGCAuk volunteer in reply to Specialised]

As we always say, your PMR is your PMR…. Not anyone else’s on here, and inevitably not what your doctors think it should be!

[PMRpro Ambassador in reply to Specialised]

Lord only knows where the GP assimilated that idea - there is a paper somewhere that feels that extreme exercise can trigger PMR because that can affect your immune system but not one you might come across in general reading. Professional athletes are capable of catching all sorts of things as a result. Now what extreme exercise MAY be a moveable feast and extreme for ME or you may not be what a professional would classify it as. However, I had had niggles that in retrospect were the start of PMR and it was after a day in the mountains that my muscles developed DOMS that was way in excess of what I expected and which lasted a lot longer than usual. But it didn't cause the PMR - that was already there,

[Specialised in reply to PMRpro]

Same goes for me. I am not an extreme exerciser. I am regular and moderate. I too developed what I thought was DOMs, which at the time was out of all proportion to the activity level I was at. This was obviously PMR, but I did not realise this at the time.

I feel it is important for me to keep active even with the illness. It is a fine balance between what I can do and what I can’t. I am learning though.

[DorsetLady PMRGCAuk volunteer in reply to Specialised]

I had known something was brewing, but unfortunately my GP veered off in the wrong direction - and blamed every new symptom on her ‘diagnosis’ - and yes, in relation to fatigue, did suggest age and being a carer.

I spent a lot of time at the GPs surgery with my ailments - but as you say ‘we don’t know, what we don’t know’ - and 14 years ago I had never heard of PMR let alone GCA. Had I not been fully occupied and worried about my OH’s health, I might have spent more time investigating my own issues, but that’s water under the bridge.

[Specialised in reply to DorsetLady]

Me too. I tell you what though, I know a heck of a lot about it now!! This forum has been my go to for information, especially from people with the lived experience. I have read fact sheets, listened to podcasts, read all I can and followed this site everyday. Some of what I read and hear is depressing, some is encouraging but I am the sort of person who likes to know as much as I can and then work out how to deal with the situation.

Thanks so so much to all of you for your knowledge and support and your prompt replies to my posts.❤️

[DorsetLady PMRGCAuk volunteer in reply to Specialised]

As yes - I know a heck of a lot as well… from the inside out, got the t-shirt, wrote the book, starred in the film.. Still came out the other side bloody but unbowed…😂🤣

If you aren’t a strong person before, you certainly will be afterwards…

[Specialised in reply to DorsetLady]

😘🙅‍♂️🙏

[PMRpro Ambassador in reply to Specialised]

I think the lived experience is greatly underestimated by those who believe a medical degree is the only thing that qualifies someone to express an opinion. I did some of the same courses as my medical peers but seem to have retained more of a questioning mind than some of them!!!!

[Lickle in reply to PMRpro]

I agree there. Your comment about knowing something was coming rings so true here. I started back in about September last year with horrendous tooth ache and what I thought was a root canal needed attention. It was right at the back and was removed, but even with pain killers it felt like the next 2 teeth roots were also infected and my Dentist was concerned enough to try and refer me to the hospital but it eventually settled down. Then in November shortly after that settled down was my first ever attack of Gout. It was very soon after that and the treatment that I thought I'd pulled a back ligament and had acupuncture and many herbs from the acupuncturist, who told me that I was out of balance because of the colour of my tongue! After we got my back moving the PMR seemed to creep in, from feet upwards until in December my new GP diagnosed PMR in January. I felt that I'd let myself go previously and was told I was approaching Type 2 Diabetes and I was also anaemic by the previous GP. Somehow, I have a perverse thanks to the PMR for kicking me into action, going on the No Carb diet, getting back into the gym, to do lots of cardio work and am now down next week to 8mg of Pred per day. Feeling fairly fit though still listening to my body more. The only thing apart from the tapering that now seems to happen is a cracking sound as if I have a vertebrae that is clicking in and out right at the back of my head. Just praying that is not GCA from what I read, but so far its intermittent. I may seek another Chinese for a head massage.