Strange Development: Good morning all, it's a... - PMRGCAuk

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Strange Development

Gunflash profile image
27 Replies

Good morning all, it's a lovely day on Englands south coast and the sun is shining. Getting to my question, I need advice please.

Newly diagnosed in early May with PMR. Put on Pred 15mg all symptoms and pain disappeared the following day. Felt great and after 3 weeks tapered to 12.5mg. No issues. Further 3 weeks tapered to 10mg no issues for 3 days. Then 1 week ago woken at 5am in the morning with what felt like cramp in BOTH legs just above the ankles in the lower part of the leg calf. Painful so I rubbed it and it went away fairly quickly. No further reactions. For the following past 6 nights it's been the same. Woken at 5am with painful cramps in both legs rub it and it goes away. After 3 days I went back to 12.5 it has made no difference, woken this morning again with painful cramps above ankles at same time 5am.

Yesterday at Lunchtime holding a knife and fork both of my index fingers went stiff with cramps briefly, it was weird. I would be most grateful if I could have some advice on what to do.

Medical history. Male Aged 77. 5 feet 9 inches tall, 171 pounds. Fit and walking 20 miles a week playing golf. Diagnosed pre diabetic, on low carb diet and condition is under control. Daily blood sugar around 6.0. Very occasional Afib, not had it for 3 years. Gout.

Medication. Pred currently 12.5. Metformin 500mg twice daily. Alendronic acid 70mg once a week. Lansoprazole capsuals once a day, Adcal-3 D lemon tablet twice daily. For Afib I take Sotalol 40mg twice daily. Rivaoxaban blood thinner 20mg daily. Losartan 100mg daily for blood pressure control. Plus Allopurinol 150mg for gout. It seeems a load of stuff to me, however I feel fit and have no daily issues which affect anything I do. Blood pressure average 120/75 pulse 60bpm.

Should I go back to 15mg a day? Is the cramp feeling likely a flare? Your advice would be greatly appreciated.

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Gunflash
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27 Replies
Rache profile image
Rache

Good morning, I’m sure the more knowledgeable ones will be along to advise soon. Just an idea - I believe magnesium can help leg cramps and calcium supplements are better balanced with magnesium. It can be taken as tablets or a spray which can be massaged into legs. Not sure how compatible it is with your other meds - others may advise.

Gunflash profile image
Gunflash in reply to Rache

Thanks Rache, I have been taking a magnesium tablet daily.

SnazzyD profile image
SnazzyD

Hello. The PMR people will comment but that sounds like a very fast reduction with not much time at each dose to really know if it is ok. If the PMR is active, which it probably will be at this early stage, the inflammation may take a few weeks to build up to a level that give you pain. Rushing down the ladder may mean you don’t know when not enough Pred was because of that lag and what constitutes not enough depends on the person. Don’t forget, the Pred is not a cure, just something to stop the damaging inflammation that occurs while your body goes into remission usually over years not months later. Also, when people say they felt great, the old hands usually think, “oh dear, so what did they do as a result?” Sorry, if are wrongly tarred with the same brush, but if you went back to even half your normal activity, it may well have been too much for the muscles. Another easy thing to look at is check you are getting enough potassium through your food and take a magnesium supplement. Pred depletes these and muscles can be extra crampy.

Gunflash profile image
Gunflash in reply to SnazzyD

Thanks Snazzy, I am taking a Magnesium tablet daily. Appreciate your reply

Rache profile image
Rache in reply to Gunflash

Looking at your reductions again, I agree with Snazzy that it may be too fast and possibly too much activity to allow your muscles to recover. I know men seem to be able to reduce faster but rarely as quickly as this. When I tried to reduce from 15mg to 12.5mg a year ago, (although this drop may be suggested in the NICE recommendations) it was too fast and I had to backtrack to 13.5 which resolved my issues. A year later and I’m still on 9mg!

Gunflash profile image
Gunflash in reply to Rache

Thanks, I am simply following the plan I have been given from my Doctor. 3 weeks from 15 to 12.5 another 3 weeks and reduce to 10, then every 6 weeks reduce by 1.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Gunflash

Although the plan given to you is a recognised one, it cannot be achieved by everyone - and is only a PLAN, it's not set in stone.

Have a read of this for a bit more info -

healthunlocked.com/pmrgcauk...

Gunflash profile image
Gunflash in reply to DorsetLady

Thanks, very interesting and informative.

PMRpro profile image
PMRproAmbassador in reply to Gunflash

Very likely - but did the GP cc the PMR with it? PMR has its own rules to play to and they often don't align with the doctors' desires when it comes to reducing the dose of pred. All the tapering recommendations to be found in the medical literature come with a codicil to this effect: "This may require to be adjusted to the individual patient and their symptoms" Strangely, almost no doctors remember that bit....

PMRpro profile image
PMRproAmbassador

My suspicion would be that you are absolutely at the tipping point in terms of managing the inflammation and when the new batch of inflammatory substances are released in the early morning it is enough to cause symptoms until the pred works. No scientific basis really, just the physiology.

Gunflash profile image
Gunflash in reply to PMRpro

Thanks PMRPro, what dose do you think I should take? Currently on 10 then the problem. I have gone back to 12.5 but still have the 5am problem. Shall I go back to 15 for a week? then try back to 12.5? Does this sound sensible.

PMRpro profile image
PMRproAmbassador in reply to Gunflash

No idea - but I would run it past the GP. Have you ever tried splitting the dose? That can improve the early mornings a lot.

Gunflash profile image
Gunflash in reply to PMRpro

Thanks. Will split tonight and take a 5. Then 7.5 in the morning and if still have cramps will phone GP Monday.

Gunflash profile image
Gunflash in reply to PMRpro

Thanks for the splitting tip Pmrpro, I think it has helped. Taking 5mg before bed now and 5 in the morning. Shall continue to monitor.

Viv54 profile image
Viv54

Hi ,ive just been talking with a lady on her about the very subject, I have had exactly the same as you describe , but not in my fingers ! Dr say its Tendinitis , a side affect of Pred ! , So painful ! When my dose drops down so does the swelling of the tendons ! Seems to be very common side affect with people on here . Hope this helps !

PMRpro profile image
PMRproAmbassador in reply to Viv54

The tendinitis I had had nothing to do with pred - it is also part of PMR. It improves at higher doses because the inflammation due to the PMR reduces.

Viv54 profile image
Viv54 in reply to PMRpro

Now you've got me wondering😲

Lindalang profile image
Lindalang

I take Quinine tablets for cramp when it comes mostly in calves- horrible pain ...only way I can deal with it

Gunflash profile image
Gunflash in reply to Lindalang

Noted, will try it. Thanks

S4ndy profile image
S4ndy

Just a thought as my hubby is on the same meds as you for gout, diabetes and high blood pressure. He gets early morning leg cramps which seem to be related to how much fluid he has drunk. If he doesn't drink a lot of water during the day he gets night cramps in his legs. Don't know if you can relate to that in any way but just thought I would mention it. He doesn't have PMR though x

Gunflash profile image
Gunflash in reply to S4ndy

Thanks

PMR2011 profile image
PMR2011 in reply to Gunflash

Would be hesitant to increase Pred for leg cramps. I used to get them pretty bad, had me hopping right up and out of bed in lots of pain. Magnesium lotion worked best. Also took it as supplement. Both my father and brother have night calf cramps too and neither are on Pred. Interesting tho, once I came off Pred they more or less stopped. I do get an occasional but a good calf stretch usually manages it.

Gunflash profile image
Gunflash in reply to PMR2011

Drinking water before bed has improved the situation by around 75%. Doctor advises me to go back to 10mg and see what happens. She also said drink tonic water. She said they are advised not to give out quinine tablets, can too dangerous. So I shall give all this a try.

Songbird69 profile image
Songbird69

Hi. Just a thought, but I have been suffering with cramps in the feet and also my hand seized up last week. I was told by the GP that Prednisolone affects our potassium levels. So, I have been drinking coconut water regularly and the problem appears to have resolved. Might be worth a try?

Jsb1961 profile image
Jsb1961

Hi There

I was told by my doctor to drink tonic water as it has quinine in .

It has helped me to avoid what felt like cramp to me

Good luck

Stay safe

John

PMRpro profile image
PMRproAmbassador in reply to Jsb1961

It is generally accepted that the amount of quinine in modern tonic water is too low to have much effect unless you drank litres of the stuff!!!

Gunflash profile image
Gunflash in reply to PMRpro

Doc wont give me quinine says its too dangerous, so I might try a couple of tonic waters.

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