I am so annoyed with myself: yo-yoing,i would value your thoughts

[allofaquandry]

I am so annoyed with myself!

I’ve been on prednisolone for nearly 5 years years now since I was being diagnosed with GCA and PMR. I have had two relapses, (when I ended up in A&E), and several flares. So, I have yo-yoed quite a bit over the years. A year and a half ago, my Rheumatologist advised that alternating 7 and 7.5mgs alternate days would be my upper limit and if I couldn’t manage tapering down lower then that’s where I would be long-term;, that was before I discovered this group and the very slow tapering method!

I have since been following the very slow taper approach, 0.5mg over 7 weeks. I got to 7mgs, stayed there for a couple of weeks and then started to taper down to 6.5mgs. After getting to two days (not consecutively) of 6.5 and (with the rest 7mgs), I started to get aches in my ankles, then my knees and hips. I thought this might be arthritis and thought “ok, this is something I have to put up with.” ( - I didn’t recognise the significance of this being matching aches either side of my body). I Started to get tired very easily and thought that I had just been over- doing it.

Then the evening before last I started to recognise the old aches and pains creeping into my legs and shoulders and felt absolutely wiped out with, no energy, so I increased the dosage to 12 mgs yesterday. I felt more like my old self and thought that maybe I had been rather drastic in going up 5 mgs, so today I dropped it to 8mgs and I’ve been suffering for it. So I’ve and gone back up another 3mgs about two hours ago, thinking I need to stay at a higher dose for a few days to recover before going back to 7.

I feel in a right pickle!!! I realise I am at risk of more yo-yoing. In 2 weeks’ time I have some family celebrations and I want to be on good form and here I am messing up my dosage.

The responses here to other group members problems all seem to be so helpful and sensible. I am feeling in a dilemma and isolated and seem unable to reason and make good decisions. What I think I should do now is stay at 11 mgs for say 4 more days and then drop back to 7 mgs and stay put at that for a month or two until hopefully it settles and also life quietens down once more.

I would so value your thoughts.

[PMRpro Ambassador]

You can't just use more overnight once- you need at least a week of the higher dose, the "add 5mg to where you flared" quoted in the flare advice. You can stay at that higher dose for up to 10 to 14 days and go back to where you were last good, i,e, 7mg maybe.

But you appear to have a sensible rheumy - he isn't on your back to taper below the lowest effective dose, however slowly you do it, you won't get past that. And that is 7mg at best for you still. It took me over 4 years to get under 10mg. Some of us need more and some need it for a lot longer.

Stop planning another attempt. Stop for more than a couple of months - you may even find taking that stress off yourself lets you get a bit lower - in 6 months time, after the winter. Every time you yoyo, the harder it will become to taper again and it isn't worth the agony.

[allofaquandry in reply to PMRpro]

Thank you so much, very helpful. Such a relief to have you out there.

[DorsetLady PMRGCAuk volunteer]

Usual advice for dealing with a flare contained in this link -and as stated by PMRpro you need to be on the increased dose long enough to get things back under control properly - and one day isn't going to do that -

healthunlocked.com/pmrgcauk...

.. just for info, many of us don't think that an alternating way of trying to reduce is the way forward.. so when you consider tapering again- try one of the slower tapers we always talk about -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[allofaquandry in reply to DorsetLady]

Thank you. It was my rheumatologist that advised the alternating and indeed keeping the 7.5 and only tapering going down on the 7mg, but the tapers were to be in one day go down by 0 .5 mg, ie 7 to 6.5 for every 7mg day, stay there and then down again from 6.5 to 6, alternating with the 7.5 on the other day. It proved to be too fast and I was becoming reconciled to the 7.5 and 7 mg alternating dose not aware of the very slow taper approach (I thought I was on slow taper!)

On joining this group I did see that many of you didn't think the alternating was the way forward and so decided to slowly taper as advised, slowly dropping the 7.5 to 7 first. I was feeling really good at 7! I should have held off much much longer.

I will now follow yours and PMRpro's valuable advise. Thank you both for listening and helping.

[DorsetLady PMRGCAuk volunteer in reply to allofaquandry]

You’re welcome -it’s why we are here… Many people find tapering a lot more difficult than others - a fact of life which not all doctors fully appreciate. .. and your history of flares confirms that.,

You are now at the dose where your adrenals also need to start working again, so that can make it even more difficult-and another reason for a very slow taper.

[Woodly]

I was diagnosed with GCA in 2016 and have always followed the advice given by the rheumatologist who I am in contact with about every six months. I was down to zero prednisolone for a brief period. but have been on 3mg alternating with 2mg for quite some time. My GP has treated attacks of gout with a short increase for a few days which have been successful. I do have a lot of lower back pain and discomfort in my legs but am assured that it is not PMR but caused by Spinal Claudication. That is too complicated to explain but this tells you all about it:- ncbi.nlm.nih.gov/books/NBK4... It is all age-related but at 91 no one has said "Well what do you expect at your age" to me or not since I was suffering from pulled hamstrings playing hockey when I was nearly 50.

[potterylady]

I don't have much to add to Dorset Lady and PMR pro, because they're so good at this. My only input is that when I tapered too low, too fast, I had a terrible GCA flare. I tried increasing by 5mg which wasn't enough. I increased a little at a time and ended up from 12.5mg to 35mg. I was wishing I had gone up higher faster, but didn't know the flare was as bad as it was. That flare lasted between 2 and 3 months. I don't know if that's normal or not? Anyway, back on the taper train again!

[allofaquandry in reply to potterylady]

Oh how awful for you, to get so far and then right back up again! It's such a fine balancing act and the frustration at losing all the ground you have gained. Within the first two years, of being diagnosed with PMRGCA, and, following the rheumatologists tapering instructions I ended up in A&E twice with relapses and put right back up to 40mgs. I hadn't realised that what I was experiencing were flares and not bad withdrawals. I just thought that I had to push through it all. Experience and now having discovered this forum I have learnt differently.

In the light of your experience i'm hoping that I have caught it in time, fingers crossed. Still too early yet, with some improvement but anxious also that it may not be enough.

Good luck with your tapering journey and thank you, it is helpful to hear of your experience.

[potterylady in reply to allofaquandry]

Thank you so much, it helps me to hear about your journey too. Best of health to you!

[DorsetLady PMRGCAuk volunteer]

That flare lasted between 2 and 3 months. I don't know if that's normal or not?

No, not that normal so would say you were unlucky and probably a much higher increase initially would have been better… but no one wants to take more Pred than is absolutely necessary.

However, you are still within the first year of GCA, and although on TCZ you still can’t reduce too quickly despite what some doctors think… your illness is still very active.

[potterylady in reply to DorsetLady]

Dorset Lady, I totally agree! I should have gone higher faster, but I didn't know and yes didn't want to go higher either. And I agree that my disease is still very active! I was in a bad way for those months. It was also perhaps triggered by stress I was having at the same time. I appreciate your input so much. I really need it. Thank you

[DorsetLady PMRGCAuk volunteer in reply to potterylady]

Hope you’re not so stressed now and feeling better.

[potterylady in reply to DorsetLady]

Thank you, much better now. Revisiting old traumas can really activate the PTSD. That's what happened. My daughter's wedding, where I had to be around her abusive birth father, and an old court case where I was sexually harassed by my employer. Such fun. All's calm for now though thankfully. My sweet husband of 25 years and I went to Hawaii for 10 days, just got back on Monday. It was so relaxing. Hope you're doing well too.

[DorsetLady PMRGCAuk volunteer in reply to potterylady]

Fine thanks…my son’s birthday today so off to spend weekend with him & family …. Not quite Hawaii -but on the coast…

[potterylady in reply to DorsetLady]

Nice! So great to have a change of scenery, especially if it's pretty!

[PMRpro Ambassador in reply to potterylady]

Probably had you not been so fixed on NOT going up, you would have sorted it quickly and actually been down to a lower dose sooner. I know it sounds strange but it does work.

[potterylady in reply to PMRpro]

I totally agree!!! I was inching up a little at a time, instead of hitting it on the head! Then when I tried going down, the GCA headaches would not allow it. So, slowly I go.

[allofaquandry in reply to potterylady]

As there is so much learning for me I thought maybe it might also be helpful to others to give update on my temporary increase by 5 mgs.

I think I may have reached a turning point. It has been several days now since I increased the prednisolone and each day I seemed to have got worse, with more and more aches and pains and less and less energy, doing the absolute minimum each day. I thought I have really messed up for the family events in a weeks time. I also started to get very occasional stabbing pain in right side of chest (a trigger point for me 5 years ago) and then occasional sharp pains in head. The hot weather has not helped. This morning having my morning coffee at 7am, having taken my prednisolone at 2am, I felt worse than ever! Really tight, heavy, aching legs and joints. I could almost feel it creeping up my legs, getting more and more a hold of me and I got very hot. Everything seemed to be building up! And then....it was as if a bubble burst and it all started to dissipate. It was quite dramatic. I also find i have some energy. I still have aches and stiffness and am slow, but so very different from what was going on before. its difficult to describe the feeling and difference.

Anyway, I know its early days yet, but hopefully prednisolone is fighting this inflammation and is getting back in control 🤞.

Sorry this is so long winded and I am not out of the woods by any means yet, but such an improvement on yesterday.

Thank you all for being out there. Good luck.

[PMRpro Ambassador in reply to allofaquandry]

If you want a lot of people to see this you would be better posting a new thread, Because of the way HU works only people who actively followed the thread will be told about it - which is basically DL and me and maybe a couple more! Many look at the post when it is new and not again unless a comment is directed at them.

[musicality in reply to allofaquandry]

Hi, the advice on this forum is very sound, i.e. Dorset Lady and PMRpro, so hope following their advice you will continue to feel better. I always feel that it is more beneficial to wait until the Spring when things are awakening, and not shutting down. That way you can get the stress (if any) of Christmas, etc., out of the way, and then concentrate on you! Yes DSNS usually works for most people - good luck! Been on Pred over 15 years, so experienced flares and yo yoing, etc. Now on 2 1/2 mg Pred, but pains have come back, and am so tired all the time - heart failure exacerbates everything too, but keep hoping that things will die down. The change in your dosage takes a while for your body to adjust to slowly.

[allofaquandry in reply to musicality]

Thank you musicality. The big learning for me is I must be patient!!! Once I got to 7mgs I should have stayed put for much much longer than 2 weeks. Just hoping I haven't messed up, time will tell.

Today was a wishy washy day, but never sure what is arthritis and what is the PMR and also the heavy weather doesn't help. I am due to go back down to 7 or 7.5mgs in a couple of days and will have to be patient to see if the temporary increase has worked.

We did indeed have a stressful Christmas. I wished I'd known about upping pred even 0.5mgs to help counter stress impact, but I do now. I think the suggestion of waiting for spring is a good one. It is a strange psychological business, having been pressed for so long to get down on the prednisolone the message re getting to a level that controls the PMR had been lost.

So sorry that you are struggling and hope that it does settle down for you soon.

Best wishes.

[allofaquandry]

👍