I'd appreciate your views and experiences please - I've had PMR for 18 months, diagnosed (CRP 23, ESR 69) 14 months ago and started taking pred at 15mg. Immediate relief!
Been trying to taper for the last year with some success - got to 7mg - but keep having increase in symptoms and inflammatory indicators.
Nasty spell at the moment with pain in shoulders & neck causing vile headaches (especially early hours of morning) Talked through GCA but thankfully don't have symptoms. Anyway rheumy has suggested I look at moving to an alternative - Methotrexate (which he isn't keen on and having done some research I don't blame him!) or 'kinder' drugs like Sulfasalazine or Leflunomide. Idea being to up pred to 15 for couple of weeks then taper again whilst gently introducing new drug. I've looked at both and they don't seem great - but whats the alternative? I don't really want to increase pred for any length of time....
I'm pretty healthy, physically active 60 year old female
What do you think?
Thanks!
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MaltedMilk
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Bit confused - if it is PMR there are no alternatives to pred. Leflunomide does work for some people to get them off pred but you start with pred too and it too has adverse effects. Methotrexate also works for some but not all and mostly just to get to a slightly lower dose of pred but is the most commonly used "steroid sparer". Sulphsalazine has no record for PMR - so does he think this isn't PMR?
"Talked through GCA but thankfully don't have symptoms" - I beg to differ: PMR plus a vile headache would be enough for me to want it considered and investigated.
7mg isn't enough? Is 7.5mg? You would be surprised how much difference 1/2mg can make. But if it needs 8mg, accept that for now, it is a physiological dose and to have got to that in 18 months isn't bad. You will get lower - just not yet. Patience is the name of the game here.
The alternative to pred is pred. I do despair at the lack of knowledge that a lot of doctors have about drugs. I worked with the pharmaceutical industry for thirty years so I should not be surprised. They would be much better off asking a pharmacist who do know about drugs.
You're 14 months into a condition that on average lasts 6.9 YEARS, and your doctor is having you consider adding alternative drugs, and their side effects, to the regimen you're currently using in the hopes that you're going to be one of the exceptional individuals who beats the clock.
You're taking 7mgs now, which is a pretty low dose for this stage, and you're having a heavier load of symptoms. That's probably because your dose is too low to keep the inflammation at bay.
I'm not a medic, but if it were me, I'd back up to 8-9mg for a few weeks, try going down by 0.5mg for a month, and see where that takes you. Keep in mind that uncontrolled inflammation is far more damaging than the medications that control it -namely pred-unless there is another medical reason to banish the one proven treatment that works for almost all of us.
To counteract pred side effects, take your calcium and Vitamin D diligently, watch your diet especially around salt and empty sugar and carb calories, take gentle exercise, get enough sleep and deep rest on the regular, and try to stop stressing and fretting, which isn't helping.
I am only just at 7mg (monday 22nd) yet I was diagnosed 21 months ago. Unlike you I have had no flares and a straight forward but very slow taper. I dont have an issue with having to increase my pred should I need it as there is NO other treatment for pmr. I did accidentally underdose myself taking 2mg rather than 10mg for nearly a week and was quite happy to take 15mg for a few days till I felt ok to drop back to 10mg again. Going up isnt going backwards it's just dealing with stuff and accepting that's the level your pmr or gca needs at the moment. YBB
Let us assume that your headache does not mean GCA, although PMRpro is right that you need to keep an eye on that and if you get ANY visual systems hie thee to the emergency department asap. But I sometimes get morning headaches. Do yours go away when you get up and eat something? I discovered really by accident that my morning headaches were caused by low sodium. We took the salt shaker off the table decades ago and I always minimized salt as an ingredient when cooking. With the advent of PMR and my eliminating nearly all prepared foods, items like pizza, pasta, bread etc, my salt intake must have dropped below what was needed for health. During a chance encounter with a fellow traveller when on holiday she told me to taste a little table salt. If it tasted good it meant I needed more. I did as she suggested and found the salt was quite delicious! She told me to keep on licking a few grains off my fingertip until it didn't taste good any more. I didn't get to that stage that evening, but the next evening I had more salt and then, suddenly, didn't want any more. The thing is, after the first evening the rather debilitating morning headaches I'd been suffering from for quite a while vanished. A few other apparently unrelated symptoms also went away, including a "skippy" heart beat, my blood pressure, always low, had been creeping up and it normalized again, there were a couple of other things but I can't remember them now. So now I happily salt things, much to the shock of my fellow diners, and don't get morning headaches any more - or if I do I taste salt! Out of curiosity, using an internet tool, I estimated (generously) what my salt intake normally was when I was having these chronic headaches and it was probably less than half the already low recommendation.
My rheumatologist put me on Leflunomide over a year ago as a steroid sparing agent as I seemed unable to get below 9/10mg of prednisolone . I have some side effects with the Leflunomide but taking it allowed me to reduce my dose by 1mg a month down to 4mg. After 4mg I took the reduction much slower (DNS method) but I am now off prednisolone totally.
I am but at my last appointment when I had managed to get down to 4mg it was said that once I was off the prednisolone I could look at stopping the Leflunomide. Next appointment isn't till December due to COVID-19 etc unfortunately but I will probably contact the rheumatology helpline before then for advice.
I have some stiffness/pain still in my hip and shoulders but that could be down to more gardening, walking etc rather than the PMR as I've tried to keep busy and active in lockdown.
I was counselled before deciding to take the Leflunomide as it's not an easy decision to make ....side effects, lower immune system etc but on reflection it was probably the right decision for me but maybe not for everyone offered it.
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