Unsure what to do: I’ve had a return of arm and... - PMRGCAuk

PMRGCAuk
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Unsure what to do

Blackcatlover
Blackcatlover

I’ve had a return of arm and butt pain. I’ve been using the DSNS method of tapering and have over many months gone from 7mg of Prednisone to 4mg just this week. Started feeling weak and tired around 5mg so had my adrenals checked and found they have kicked in. Due to liver problems I can’t take Tylenol to figure out if this is Prednisone withdrawal or the beginning of a flare. Pain is not horrible but just always there. Pain is bilateral. Tried adding another 5mg to my 4mg yesterday but didn’t see any improvement. Afraid to add 5mg again today until I got your advice. I have been doing lots of yard work- much of it on the ground digging holes. I’m 74 and just wonder if I did too much. Have rested for a couple of days and still feel achy. Would love your expert advice. Afraid to let this get out of hand.

32 Replies
oldestnewest

Stop digging and take 5mg for a three or four days and see what happens, if the pain stops, then reduce back down by 1 mg per week till you get back down to where you where.

Someone should have explained to you, that although they have woken up and started working it can and does take up to one year for your adrenals glands to get up to speed. You must carry your Blue Steroid Warning card for a whole year, once you get to zero.

If you must dig, then 4 spadefuls and stop. Anyway if you are a gardener check out 'no dig' it works.

Thank you Jinasc. You are so right about overdoing it. I spent two days digging and planting. I’ve learned my lesson. Hands were so sore I couldn’t open a water bottle. Knowing the side effects of Prednisone withdrawal,it’s so hard to know what’s going on. Adrenal problems, over doing it and PMR make it all seem so hard to figure out. Thank you for your kind reply. I’ll be making lots of changes.

Kymandbob
Kymandbob
in reply to jinasc

Also I find that if I overdo the activity it takes my muscles, particularly my shoulder muscles, much longer to recover than before I had PMR. I am in my second year of PMR and am on 8mg prednisolone at present, tapering onthe DSNS method.

Hidden
HiddenModerator
in reply to Kymandbob

That's the delayed onset muscle soreness.....doms....it's a sneaky thing.

PMRpro
PMRproAmbassador

No, no, no. If it was a synacthen test you had done, then it shows they are CAPABLE of working, not that they ARE doing so, They can produce cortisol when kicked - but under normal service conditions there are a lot of other things that have to happen for it to happen reliably.

And please - you have delicate muscles after all this time with PMR and being on pred. You have the classic signs of DOMS - delayed onset muscle soreness. When you have PMR then DOMS is worse than would expect and can take far far longer to resolve than normal. The only way is to pace your activities and do what was a day's work over several days, in small bites and with more rest than work. It is possibe Tylenol might help - but obviously pred isn't - and that is what I'd expect in DOMS.

But also, I would go back to 5mg and wait there a couple of months before trying again. This isn;t a race and one top PMR rheumy likes to keep his patients at 5mg for up to 9 months - and finds the rest of the journey is easier... But often a lot less is enough.

Thank you PMRpro. I definitely set too high a goal for myself. The damn flowers could have been planted over a week and still been fine. I’ve learned my lesson.l didn’t know about DOMS and it sure sounds like what is going on. Just emptied out my pill box and replaced my 4mg count with 5mg. I know it’s not a race and I’ve been tapering oh so slowly but I think 5mg is what my body needs now. Thank you as always. What would we do without you!

You sound as if you have done brilliantly so don’t be upset at what may be feel like a backward step but actually isn’t - it will liberate you! Like you I overdid the gardening, so easy to do as one task leads seductively to another 😀😈. But the muscle soreness will improve and I was certainly much more careful second time around. We live and learn and these are frustrating times but you sound to be well in your way. Tally ho! 🌺

Thank you Thelmarina. Being heard and supported by all the wonderful people on this site truly helps. Feeling like you’re not alone and can get answers from others who have been on this journey means a lot. ❤️

DorsetLady
DorsetLadyPMRGCAuk volunteer

You’ve been given good advice - so won’t repeat.

But in future it might be worth tapering by 0,5mg a time rather than 1mg - at such low doses you’d be surprised how much difference 0,5mg makes.

Thanks DorsetLady. I have been tapering by .5mg but you’re right. Seemed fine at 4.5 and not so fine at 4. Will be happy to stay at 5mg for many months.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Blackcatlover

At such low doses you tread a very fine line with Pred......there’s very often no spare to juggle with...so slowly, slowly does it!

Hidden
HiddenModerator

The problem is some days you might feel like you can dig holes or do full blown gardening but your muscles scream in submission if you push them too far. I had a couple of good days and got in the garden. I was a little stiff today but in my old mind I thought I can paint a couple more fence panels today. In my PMR mind a voice screamed don't don't be an idiot...you squeezed 2 good days in don't push me. So today I have almost done nothing. Potted seeds, watered with the hose and rested. I have done my stretches that keep me mobile but no work work whatsoever. I can feel tomorrow will be a doms day already so I am glad that finally after 4 years and at 7mg with a dmard I am trying to listen to the PMR mind rather than the old mind. Usually Tylenol would be the advice, perhaps a warm shower and gentle stretches and 2 days rest will help. 🥵🌻

Blackcatlover
Blackcatlover
in reply to Hidden

Thank you Poopadoopy. You are so right. I need to learn when my body has some extra energy, I need to stop before feeling exhausted. It’s a whole new mindset that I should have mastered by now. I put out a yard swing and have made a pact with myself to rest and listen to birds more often. Thanks for your kind message.

Hi,

Can't tell you how many times I've been told off by my wife for doing too much in the garden over the five and a half years of PMR.

It's nearly always because I want to get a job finished, and I feel fine at the time.

Usually, I'm knocked out (polite language!) for at least a couple of days before I'm reasonably mobile again. I guess most of us do it from time to time, but turn a blind eye to the consequences!

Anyway, you've had excellent advice so hope all goes well for you now. Don't forget to take it easy.

Good luck

Paddy

Thank you Charlie1boy. I’ve learned my lesson. My gardens look great but I’m in too much pain to enjoy them. Did some light watering and sipped coffee in my swing. I know tomorrow will be better. Thanks for your message. Happy gardening.

PMRpro
PMRproAmbassador
in reply to Blackcatlover

"I’ve learned my lesson"

Until the next time ;) That's what they all say

Love your sense of humor. My husband flies and they say there are two kinds of pilots - those who have landed with the gear up and those who haven’t yet. Guess with me I landed with my gear Up!😏

Thank you for your question and all the replays, as I for one can relate and need to take on board all the useful advice. It is hard though, when there is so much you want to get done but can't at the speed you normally would. Xx

dphu
dphu
in reply to Tawnyowl1

Ditto Tawnyowl1.

Very difficult to make yourself stop when the sun is shining and you feel fine ~~ until 36 hours later. :(

I'm finding it a difficult learning curve.

Tawnyowl1
Tawnyowl1
in reply to dphu

Same here. Sorted out round our pond last week as feeling good, still recovering!! Hope your aches and pains settle back down soon xx

I am in my second year of PMR. I have tapered down to 3mg for last 60 days. My leg muscles are what bother me. As an ex competitive runner, they were strong until PMR and prednisone. My leg muscle extreme soreness is what sent me to the doctor about 18 months ago. During my taper I have gone back up on dosage for a while without any benefit. Consequently, I just try to limit the strain on legs. If I take Lily dog to the park in the early morning and walk, I limit my activity for rest of day. I find that little or no activity does not help. I tell myself, "do not sit or lie down for more than an hour, get up move around before sitting again." The days I don't walk in park I do some mild exercises, mostly stretching. Hope you get to feeling better, remember what the experts on this site tell us, "pace yourself." :)

Thank you Noosat. I’m learning day by day. I think I keep trying to get back to normal but I needed to learn that for me there has to be a new normal. Pace myself and rest before I’m in terrible pain. A gentle walk early in the morning always makes me feel better. Makes me feel like a rest and that second cup of coffee is what would feel good. Carry on- just a little slower.

Another thing that helps me is that very hot shower in the morning. I direct it on my lower back, I have osteoporosis, and touch my toes 15 times, and then let the heat pour over my shoulders. Yes, I am afraid I don't know any longer what "normal" means. I have to be grateful for being able to function on my own each day. Right now I am trying not to automatically look for all the aches and pains when I get out of bed. Instead I want to just assume I am OK and go from there. Have a great week-end !

Thanks Noosat. I usually take my shower at night but it makes sense to loosen up in the morning. Weather is gorgeous here. Enjoy your weekend.😊🌻🌼🌸

I am in U.S. also. Live in Texas Hill Country. This week the temperature is very high, but my house including my big deck has trees all around, which helps.

I’m up north on Cape Cod In Massachusetts. Weather is perfect! Warm days and cool nights. The ocean keeps us cool. Stay in the shade of those trees and enjoy the beautiful weather.🌻

I envy you the ocean. I was born and raised in Sydney, Australia. At night in summer we always had the southern breeze from the lower Pacific. My daughter, living very, very near me, is hungry for a trip to the sea. We are hoping, if situation is better in September/October to go to the Gulf. Not the ocean, but better than nothing.

I am having the same achy issue today, I think from doing too much organizing in the attic over the weekend. What is a Blue Steroid Warning card?

PMRpro
PMRproAmbassador
in reply to PMRinUSA

In the UK a blue card is issued to people on long term pred to carry to inform healthcare staff of their medication history. It is still avaioable - although it may take some pushing to get one!

I’m in the USA and don’t know what a blue steroid card is either. I do carry a list of all my medications and how much Prednisone I’m on in my wallet. I’ve had a mastectomy so I can’t have any IVs or blood pressure checks on my left arm. I’m also allergic to penicillin. All that info is on a card in my wallet. I’ve also filled in the health app on my IPhone. Better safe than sorry. If you’re in an accident, it’s important for first responders to know about the Prednisone. Take it easy today. Don’t be foolish like me.🌼

Hidden
HiddenModerator
in reply to Blackcatlover

You might want to consider an SOS type band on your non test arm too. I have a couple of things going off too and have an SOS bracelet I have had for 20years and 2 silicone bands with key medical issues on. You can get more tasteful things but I don't do much that's tasteful! I like in your face if I get unconscious or something. I do have a blue card in my purse too.

Blackcatlover
Blackcatlover
in reply to Hidden

Thanks. A silicon band sounds like a great idea. I think bright orange should do it!😊

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