I need a Plan please.

[Gunflash]

Back again for advice please.

History....

Started on 15 mg in early May. Symptoms went immediately overnight, woke up like a spring chicken,

Reduced to 12.5 after 3 weeks, all good no reaction.

Reduced to 10mg after 3 weeks and within a few days flare around 5am woken up with it, pain in both lower calf and ankle joints.

Returned to 12.5mg for two weeks made no impression still flare, woken at 5am cramp like pains, always in lower calves and ankles ok, it goes after 10 minutes walking around.

Returned to 15mg and after 7 days back to feeling good no pains waking me up.

Pains have only been there when I wake up and always have gone within 10 minutes, they I feel normal again.

Would be most grateful for advise please on how to taper from here going forward. Been back on 15mg for last week. Very wary at present to reduce again.

[SnazzyD]

Have you tried a magnesium supplement or Epsom salt (magnesium sulphate) baths? If I didn’t take magnesium is would get muscle irritability. It might be PMR but the fact that it improves with walking about makes me wonder if it is 100% that.

[Gunflash in reply to SnazzyD]

Thanks for the help Snazzy,

I have taken and been taking a magnesium tablet every day since the trouble first started. Minor improvement. I have been playing golf very regularly, played 3 times in the last 4 days walking 6 miles a day, no problems, no issues, feel great afterwards. Even when I was having the cramps it always went after 10 minutes of activity and never comes back until 5am in the morning, it wakes me up. Last night was the first time for a month it did not.

I find it all quite odd. Have never seen a doctor, been diagnosed over the phone due to coronavirus. Surgery gave me pred for a week, doctor phoned me back I said the stifness in all my arm and legs which I had had for a month, could not bend down etc, went overnight after taking the first dose of pred. Said come in for blood tests and a few days later after he had results diagnosed me with PMR and here I am!! I have to say, I don't know if I have PMR or not, I certainly have something as i could not lift my arms much above my head or bend down for a month, when I woke up. After a half hour or so it mostly all went away and I got on with life. My only other symptom was, my wife said, falling asleep every afternoon, just going spark out after 10 minues on the sofa. Since taking the pred I am not doing that any more, I am chatting away like a songbird. She wants me to stop taking the pred and to return to nodding off!!!

[SnazzyD in reply to Gunflash]

Ah, therein may lie the problem. Your sport schedule sounds hefty. One thing I noticed was that the Pred effect on the muscles and ligaments really started to kick in after about three months. Yes, high dose (60-30mg) made me weak and wobbly, but the intolerance of repetitive or strenuous sports and activities took a bit longer to really kick in. The effect was usually delayed by a couple of days too which is common. Also, PMR does make muscles less happy with it too. Your symptoms do sound PMR-like and the response to Pred is useful too. It often comes out of the blue and people feel they have had their life pulled out from under them with no warning. A common reaction is for people to feel soo much better through lack of pain and the Pred energy boost that they go back to normal life but the goalposts have moved. The normality is a bit ‘false’ which comes as a real blow to those many who were very active. In time you will get better but you need to slowly build up to a level where you don’t feel pain from activity. I think of it like pretending you’re getting over a broken leg or a month of flu.

[Gunflash in reply to SnazzyD]

Thanks and noted.

[DorsetLady PMRGCAuk volunteer]

Perhaps stay at 15mg for another week, and try magnesium as SnazzyD suggests.

Then maybe reduce by only 1mg a time - not everyone can achieve 2,5mg even though it’s a “recognised official “ taper.

And despite feeling like a spring chicken, unfortunately you’re not! So not too much rushing around, scratching the ground or whatever spring chickens do! Less 🐥 more🐔!

[Gunflash in reply to DorsetLady]

Yes Dorset Lady, I will take note, although getting loads of exercise on the golf course and enjoying it. See my reply to Snazzy. I shall follow your advice. Greatly appreciate your input and knowledge, thanks Gunflash

[DorsetLady PMRGCAuk volunteer in reply to Gunflash]

You might be enjoying your golf and exercise...but maybe your PMR isn’t? Just a thought.

[LWNE in reply to Gunflash]

Hello, I am a keen hiker, and I have been able to keep up my activity with no problems with PMR, what has worked for me is a much slower taper than the GP first recommended - I went from 15 to 12.5, and had my first and only flare...rang surgery and a different GP tutted and said to try reducing by 1mg a month. I have done that with no problems, now after 18 months Im on 5mg, and I have been reducing by 0.5mg at a time at these lower doses, hoping to go to 4.5 next month and so on. Exercise every day by walking has really helped me, but everyone is different! Good luck.

[PMRpro Ambassador]

I agree with everything they have said.

[Gunflash in reply to PMRpro]

Ta.

[yogabonnie]

so do I. good luck. try and be patient!!! it isn't easy I know. I was doing triathlons when this began and thought Oh I can still run and swim and bike. Nope. but I am walking. and tap dancing for my bones! crazy adult beginner. dont give up your exercise but be kind to your PMR and it wont be so mean to you!!

[Gunflash in reply to yogabonnie]

Thanks

[Hidden]

Hi I wonder what you are doing during the waking day? My thoughts are if 15 mgs is containing the pain in my experience rest is critical in the first few weeks until the condition stabilised then go slow with minor reductions of PRED 10%and small increase in physical activity until you get to the optimum going slowly appears to be the key good luck

[Gunflash in reply to Hidden]

thanks

[Viv54]

Hi Gunflash, i have problems with both calves and ankles ,its horrible ,my legs have been a huge problem with my PMR. Infact atm im limping alot !! pain has never really gone in my legs . After walking it gets worse ! My Dr advised very gentle stretching exercise . There are some really good ones on "You Tube " worth having a look.

[Gunflash in reply to Viv54]

thanks

[PMRpro Ambassador in reply to Viv54]

Has the blood flow in your legs been checked? It sounds as if it should be.

[Gunflash in reply to PMRpro]

👍

[alangg]

If you are not using a taper plan then I would do so - the sudden 'drop' may be what is causing the flares.

A 'dead slow nearly stop' (DSNS) plan worked for me and it is easily adaptable to be shorter or longer if you prefer. And when you've reached the new dose, stay there for a few weeks before starting the taper again to make sure that your body is comfortable with the lower dose.

Try this:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

[Gunflash in reply to alangg]

👍 thanks