Has anyone been on steroids for PMR long term without much side effects (at what dose and for how long?)

[PMRinAVL]

I am trying to figure out if I should follow my Rheumatologist's orders to start Methotrexate (or if that does not work, then try Tocilizumab) in order to be able to get off of my 10 mg of Prednisone. I have been on Prednisone at varying dosages (never more than 10mg) for 10 months now. My Rheumatologist thinks I need to get off as soon as possible. I have some swelling in hands and feet (which might even be PMR) and no other side effects.

[fmkkm]

Hi,Six years on prednisone, started on 40 mg, now on 3.5 mg. I just had my yearly physical and my comprehensive blood panels are the same. I walk 4-5 miles a day. 10 months is a short time for a doctor to be stewing over the negative affects of prednisone. I see you are in the US and I am going to be really cynical and suggest that docs being paid off to prescribe certain drugs is rampant here. In the end, prednisone works and it’s cheap.

Sorry if I sound like such a downer. I will add, based on my research, I would trust tocilizumab(actemra), it does seem to help people get off prednisone. Best to you.

[PMRinAVL in reply to fmkkm]

thank you so much for sharing your experience!

[DorsetLady PMRGCAuk volunteer]

Unless you are having significant issues with Pred, and it doesn’t sound as if you are, then why add in another drug that may cause new side effects.

10 months is not long into your PMR journey, unless your Rheumy is a believer that everyone should be ‘cured’ within 2 years….

If Pred is giving you a reasonable QOL and controlling symptoms, stick with it.

[PMRinAVL in reply to DorsetLady]

thanks for that feedback.

[scrambledegg]

Getting on for 6 years with PMR and never successfully been on LESS than 10mg. But it’s under control on that and my GP is happy for me to do my own thing. 10 months seems a very short space of time to be taking what seems to be quite a drastic measure.

[PMRinAVL in reply to scrambledegg]

thank you!

[PMRpro Ambassador]

Oh dear - wonder what he'd do about me?

I have had PMR for nearly 17 years since the very first signs appeared (stiffness in shoulders) but it was some time before it hit hard. It wasn't diagnosed for 5 years but I have been on pred for heading for 13 years. I started at 15mg with a miraculous response in 6 hours but apart from about a year or so down to 5mg and slightly less before a major flare in disease activity, I have been on about 10mg and above for the majority of that time. For much of the last 2 years while I was sole carer for my husband I was on 15mg - and, towards the end, 19mg, to be able to function at all.

My bone density is normal and has changed very little (I have had 4 dexascans) over 12 years of pred, despite never having taken an so-called bone-protection medication. I have no sign of steroid-induced diabetes - my Hba1c is 36. I gained weight with undiagnosed PMR due to the disability and lack of activity (and comfort eating) and it redistributed with pred but I also lost most of it by cutting carbs drastically. I have slightly thinning skin on my shins and I tend to bruise easily there - but I am also on anticoagulant therapy for atrial fibrillation (almost certainly caused by the autoimmune part of PMR).

I had concerning effects when I was briefly switched to methyl prednisolone - I have had no problems with either prednisolone or prednisone.

I tried methotrexate - I felt worse on it than I ever felt with untreated PMR and my hair fell out in clumps - didn't hurt in terms of pain but it hurt my my self-esteem. I also gained weight with it as it created adverse effects that are more usually blamed on pred - it is said to increase the effect of pred as an antiinflammatory so you need less pred but they rarely mention it amplifies ALL effects of pred. I gained 2lbs in a month - and it took a LONG time to lose.

Tocilizumab is not approved for PMR - it IS approved for RA and for GCA because the clinical trials have been done and the documentation submitted for its use. There are rheumies in the USA who seem to manage to get funding for it for PMR, there have been a few pilot studies in PMR and there are odd patients with a PMR diagnosis who have had it. But it is a biologic, it is very specific in its action and its potential side effects are also not minimal and in the case of GCA it only gets half of patients off pred entirely, half of the patients with GCA continued to require a dose of (usually) about 8-10mg - GCA is not only due to the IL-6 cytokine that tocilizumab works on, it isn't known whether the same applies in PMR.

A study found the median time to get to 5mg pred is 18 months - some people take longer - so to be at 10mg after 10 months is perfectly within expectations. It sounds as if you have been lower? And symptoms flared? Which was almost certainly due to the doctor trying to reduce the dose too fast - you aren't reducing relentlessly to zero, you are looking for the lowest effective dose AT THE MOMENT. It doesn't mean you won't get lower, just not yet.

[PMRinAVL in reply to PMRpro]

Thank you, PMRpro, for sharing your knowledge, experience, wisdom and research. It is so good to know that there are people out there who have real not just theoretical knowledge of this disease.

[PMRinAVL]

Thank you that is such valuable information!

[Rugger]

I have been on prednisolone for almost 6 years, initially for PMR starting st 15mg. The dose went down and up with flares and then up again 2 years ago when I was diagnosed with GCA-LVV. My cumulative dose to date is 13,870mg! As far as I am aware, I have experienced few, if any side effects of pred. I have been very fortunate. My HbA1c is 36 and I follow a 'sensible' diet which is low in added sugars, with modest portions of carbs at each meal and this has kept my weight steady since diagnosis. My skin is probably no thinner than any other 74 year-old skin! I was diagnosed with osteoporosis 8 months after starting pred, but I will never know how long I had had it, so it may or may not be down to pred.

I have been on Tocilizumab for the last 2 years for the GCA-LVV. It is 'rationed' in the UK, so my prescription runs out in March. My Rheumatologist is planning to start me on Methotrexate. Tocilizumab has enabled me to taper the pred to my present dose of 1mg and I am continuing to taper at 0.5mg per month. If all goes well, I will be off both Tocilizumab and pred soon and on Methotrexate alone..... 🤞 Watch this space!

I agree with the other comments that 10 months is no time at all.

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

You have to go some with cumulative dose to catch PMRpro (still going) me (19,890)- I’m still standing thanks to new knee and hip - but they aren’t Pred related!

[PMRpro Ambassador in reply to DorsetLady]

Even at a conservative estimate, I was well north of 20,000 a year or two ago! And 2 years at 15mg (since OH was ill) is 11,000 - and for much of last year it was above 15. I haven't disintegrated yet!

[PMRinAVL in reply to PMRpro]

wow, that is quite impressive, that you are doing so well on such a high cumulative dose!

[PMRinAVL in reply to Rugger]

thank you for your perspective. I am very reassured that most everyone thinks that 10 months is very little time!

[LemonZest11]

I have had PMR/GCA for three years. You have probably gathered that TCZ has been a godsend for those of us on this thread who have tried it. In Australia we are limited to 12months supply, but not for PMR, in my case, it’s GCA-LVV. I managed to get to 0.5 mgs of pred before I flared, but that was because my TCZ jabs were spaced at 4 weekly doses, and that just wasn’t enough. I’m back on track but nearing the end of my allocation. Experience from those who know on here suggests that methotrexate comes with its own set of side effects that seem quite severe compared to TCZ. I experienced a low white cell count (neutrophils), but extending the dose to 2 and then 3 weekly solved this problem. Good luck with your decision, but as others have already said, 10 months is no time at all with PMR. Sounds like you are on track and doing well. Perhaps wait a while, if you can, before adding another drug into the mix.

[PMRinAVL in reply to LemonZest11]

thank you for sharing and confirming what many here have already pointed out!

[PMRinAVL]

all this is such valuable information for me, thank you!

[PMRinAVL]

the more I learn the more I think my brain is going to explode trying to process the information!