Is it end of summer blues, low mood about having a chronic disease or a decline in my health and is it wise to taper?

[Siena62]

I have been taking 10mg of Prednisolone since the beginning of June, reducing from a starting dose of 20mg in April. Within a few days of starting the Prednisolone I saw a dramatic improvement in my symptoms. From being virtually unable to walk I was able to sightsee ‘normally’ on a city break less than three weeks later. I was absolutely euphoric having had a miserable winter and early spring. However, I don’t feel that I have improved since then and the last few weeks (some of which I was on holiday and sightseeing) I have felt slightly less well. I can’t decide whether it’s just end of summer blues, slight depression about having an illness which I’m likely to have long term or an actual decline in my health. Of course it could be a mixture of these things. I was planning to try to taper down to 9mg but I’m wondering how wise this is.

I suppose that my question is how much discomfort should one put up with? I can certainly function very well (I can undertake daily activities and go out, walking and taking public transport) but I do have stiffness and some soreness (but no fatigue). I do improve quite a bit throughout the day but the symptoms never actually go away.

My rheumatologist is keen to get me off the Prednisolone (and onto Methotrexate) but has accepted my suggestion of trying to taper first, although I get the impression that she thinks that I won’t be successful in this.

It’s hard to remember what I was like before my problems started. I had some trouble with my hips from last summer but could manage. It was only in December that I started to have pain and stiffness in my knees and legs, which were unbearable.

[Grammy80]

Clinically, I'm no expert like a few of the gals who will be along I am sure. When I read your post, it struck a chord with me. I just returned from a holiday of nine days, which was so uplifting. Despite the fact the five months ago I would have bet you money I couldn't do much of anything...while there I was busy all day long but surrounded by positive people which made me feel better physically. I'm presently reducing my prednisone and just dropped to 6mg, my rheumy has be decrease by 1mg every six weeks. I think I may be cutting by just .5 next time. I've been on pred and Actemra for three years and this is the lowest ever...I have GCA and am almost 82.

I kind of lost my point.... I think the mental aspect of a chronic illness is something we all experience and maybe sometimes don't give enough attention. I talk to a therapist on Zoom almost every week and that helps. I try to embrace as many positive people as I can. I lost some sight so I don't drive which is a bummer but my husband will take me anywhere. I'm going to try to get involved in something outside the house now. You are smart to address these issues and KNOW that you are never alone AND there IS light at the end of this journey....sometime it stinks...but it gets better.💕

[DorsetLady PMRGCAuk volunteer]

I wouldn’t be considering reducing feeling as you are…..can you recall the last dose you felt okay.? If so, might be worth going back to that for a couple of weeks and see if things improve.

I did say in reply to previous post that you had reduced quite quickly from 20mg to 10mg, so maybe a tad too quickly…and you do have to remember that you do have a chronic autoimmune immune illness, so you do need more rest than before.

I think a small increase may sort things out, you are only a few months into a new situation, and things take time to sort out physically and mentally.

[Siena62 in reply to DorsetLady]

I have never been completely symptom free since I started the Prednisolone but that hadn’t concerned me too much because I was so relieved that my health was so much better and I could resume a near normal life after a dreadful few months. However, I suppose that recently it’s been dawning on me that I’m in this for the long haul and that I may never really get my symptoms until control. I’m terrified of feeling ill again and so I don’t want to ‘rock the boat’ but I’m also worried about staying on a relatively high dose of Prednisolone long term or going onto Methotrexate. I feel that I’m caught between a rock and a hard place, like most of us, I suppose.

[DorsetLady PMRGCAuk volunteer in reply to Siena62]

Yes many feel like that -and although Pred isn’t a pleasant drug, it’s not as bad as some paint it…having been on high doses for GCA (no choice) almost 6 years after coming off it, it’s left me with no long term effects… Maybe I’ve just been lucky, but the thought of it is often worse that the actuality.

[Siena62 in reply to DorsetLady]

To date (and very much with fingers crossed) I haven’t had any side effects with Prednisolone as far as I am aware but doctors seem very worried about patients being on it for long periods. A friend of mine developed Diabetes whilst she was on Prednisolone and had to have both hips replaced due to necrosis caused by it. Admittedly, she was being treated for cancer rather than PMR and presumably her dose was higher but this does play on my mind.

Actually, I think that the Prednisolone has given me a bounce on top of treating the PMR symptoms and that has definitely been a bonus; I feel that I have had more energy than I’ve had for years.

[PMRpro Ambassador]

" I don’t feel that I have improved since then"

You wouldn't really expect to IMPROVE - but to maintain that level of relief while reducing the dose of pred. It has cured nothing - it is a management strategy to keep the inflammation at a level that doesn't give rise to symptoms and allows you a decent quality of life in the meantime until the underlying autoimmune cause of the inflammation has burned out and gone into remission.

Whatever your rheumy thinks, to get from 20 to 10mg in 3 months is pretty good - half of patients take more than 18 months to get to 5mg so you are well on track. One of the really good PMR rheumies in the UK, unfortunately now retired, kept his patients at 10mg for a year and found that reduced the incidence of flares/relapses from 3 in 5 to 1 in 5. His junior who wrote the paper on their study is now professor at Luton hospital in the UK, specialising in GCA, and is still using that approach.

researchgate.net/publicatio...

Why is she so keen to get you onto MTX? There is no evidence it reliably replaces pred - if there were they would use it routinely and they don't. It works brilliantly for a small number of patients - but it does nothing for a lot and makes another group very unwell. There is about to be a study on its use in PMR = hopefully it will identify a cohort for whom it is useful - but at present it is a case of trying it to see if you can tolerate it and if it works for you. A lot of promises are made that it can't fulfil. You won't succeed if she tried to make you taper faster than your body is ready for. It becomes a self-fulfilling prophecy.

[Siena62 in reply to PMRpro]

My rheumatologist, like many doctors, is concerned about the long term use of steroids and believes that, overall, Methotrexate is a better drug with fewer risks if monitored correctly.

[PMRpro Ambassador in reply to Siena62]

Possibly - but the question is not that but whether it works for PMR and more often than not, it doesn't. A study also found that the opinion held by rheumies about how well it is tolerated isn't shared by patients - even RA patients where it is more likely to work.

[Ozziedays]

Hi Siena, I moved on to MTX alongside tapering pred about 9 months ago. I’d had two flares at 5mg (blood markers, no symptoms) and like yours my rheumatologist didn’t want me yo-yoing on pred any more, or being on it longer than necessary. I’d started on 25mg in December 2020, so with the two flares taking me back up to 7mg, it’s been about 20 months for me to get to this stage.

I’ve had no side effects on MTX and no flares, now on 1.5mg pred with a taper plan of 0.5mg monthly. I must be one of the lucky ones where it seems to work with no adverse effects, although of course it’s entirely possible I’d have got below 5mg on a third attempt without it. It seems to me that it’s a very individual thing, our genetics, other health conditions, even psychology as to how we cope. And although I’m feeling good physically, have come through covid and wisdom tooth extraction and other health issues alongside PMR and pred/MTX, that’s not to say I don’t have days when I’m tired and / or feel blue. It can be dispiriting but I just run with them, if I need to rest, I rest, and am usually better next day. Hope this is helpful.

[Siena62 in reply to Ozziedays]

Thank you very much for your reply. It's good to hear that someone has had a positive experience of Methotrexate. I'm probably going to start tapering the Prednisolone and see how I go.

Personally, I generally find that being active (I don't mean doing 'proper' exercise) is helpful. I tend to feel less stiff and sore after a trip out. If I'm sitting for long periods then I stiffen up. I have been at my best sightseeing on holiday. Seven hours at Versailles was not a problem! I have had more energy on the Prednisolone than I have had for years. I don't know how long this 'bounce' will continue.

[Ozziedays in reply to Siena62]

I find I can be more active on holiday too! There must be some psychology in it, for me, I don’t want to miss out on seeing things. I usually check out that there will be rest points / stops on guided walks and that gives me confidence to do it. We’re currently based in Australia (home is UK) and so I’ve been doing things like rainforests, scenic viewpoints, coastal walks, caves etc as well as cities, sometimes in quite a bit of heat and humidity. I’ve never had to give up, although sometimes I’ve taken the easier / shorter route back!

As for tapering, once I got to 10mg, it was 1mg every 3 weeks. After my first flare, it dropped to 0.5mg every 4 weeks. I slowed it down a bit more when I got to 5mg, cutting up tablets so that my first week of supposedly 4.5 was nearer 4.75. I learned this from this site. I also learned about adrenal insufficiency, the effect on your adrenal function as you come off prednisolone. Have a read of the various links / FAQs, I’m certain that’s what was causing my tiredness & feeling depressed once I got under 10 and at various points since. It passes, and knowing that helps.

[Siena62 in reply to Ozziedays]

That's all very interesting. You are much more active than me. I'd be dubious about going on a long walk in case I couldn't get back.

[Ozziedays in reply to Siena62]

No stretches longer than 2-3km on the flat, and I check out that there will be rest points, options to get back if I need to. Prior to PMR I could do 10-12 miles without thinking and had completed a couple of Munros in Scotland, you need to adjust mentally to this new situation and take it gradually. I’m doing about 2km daily now, gentle flat neighbourhood strolls, and plan to build on that.

[Siena62 in reply to Ozziedays]

That sounds good. I wasn't very fit before I developed PMR and so I haven't given up as much as others have in terms of being very physically active. That's not to say that I don't enjoy a walk but it wouldn't have been a very strenuous one.

I think that until recently I hadn't given much thought to the long term. I was focussed on a number of events including two graduation ceremonies and some short breaks and two holidays. My aim was to remain well until 27 August when I returned from my second holiday. I managed to achieve this (in my first post I meant to say that I had been feeling slightly less well the last few days rather than the last few weeks) and actually had a really good summer but the summer's over now and I have to make plans about the management of my PMR. I have stayed at 10mg for nearly three months now and hadn't thought too much about my dosage or the future because I was managing very well and enjoying myself again after four months of absolute misery when I was virtually housebound. I think that the reality of having a chronic, hard-to-manage disease is only really hitting me now and that's pretty depressing.

[Ozziedays in reply to Siena62]

Maybe you need to discuss current symptoms and tapering with your doctor, who will know where you were before PMR and what other confounding factors might be around. In the run up to one of my rheumatology reviews I had noticed some aching in my neck and was thinking oh no it’s back again….. bloods were normal but doctor ordered X-rays and it turns out I’ve got early degenerative disc disease. So, physio / advice for that, and pred taper continued. Not that we want to have other health issues, but an accurate diagnosis is essential if we are to make informed choices and decisions.

I didn’t have a lot of knowledge when PMR first struck, I’d never heard of it, I’d no idea about timescales, I’d picked up from somewhere that it might take up to a year (in fact, two is very good). I was also in a new country and navigating a new healthcare system. The early months of pred had me bouncing off the ceiling, full of energy, feeling hyper, euphoric and generally great other than developing a fat face and extra fat elsewhere. Coming off it has been more challenging, it’s only in retrospect that I now realise bouts of tiredness, sweats similar to peri menopause , feeling very tearful / low etc were most probably adrenal insufficiency. It was only once I’d got through the worst that I found out via this site, and mentioned it to my GP who confirmed that I’d done very well managing it all on my own!

Wishing you all the best x

[PMRpro Ambassador in reply to Ozziedays]

This is for both of you - read this profile and posts:

healthunlocked.com/user/Ski...

You CAN get back to where you were, and you can improve on where you were if you want to. You just have to go about it te right way - and slowly and patiently

[Nextoneplease in reply to Siena62]

Hi Siena 😊Know what you mean about that ‘end of summer’ feeling…..although for me it’s starting to pass as I think about autumn! I too worry about starting out on walks or days out in case I get stuck or can’t make it back, so sometimes I probably do less than I perhaps could. Holidays seem to motivate me to get going, if only out of anxiety that I might let others down.

It’s early days for you, you’re doing really well I think. Perhaps pause the taper for a couple of weeks, cut yourself some slack and come back stronger 💪

All the best to you xx

[PMR2011]

“so relieved that my health was so much better and I could resume a near normal life”...you may feel better but the disease is still there. Pred only treats the symptoms, it is time that causes the PMR to burn out. So strap in and hang on for the ride because despite your Doc wanting you off Pred you can expect to be on it years not months. I made the mistake of pushing myself to live a “normal” life despite PMR. I worked full time at a stressful job, remained physically active and pushed through the ongoing lower level of PMR pain. At times I think that’s why I ended up with GCA after 6 years of PMR. You really have to partner with PMR not battle it. Please read the FAQs on here, you will see that your Pred taper has been rather fast. Learn from the experience on here. You’ll get there, just need a bit slower path, despite what the Doc says!