Hi I joined in jan with suspected pmr but am still awaiting my rheumatologist appointment in a couple of weeks. I have just filled out my profile which sorry is quite long but i wanted to give as much info as possible. I have a feeling my appointment will be cancelled so would love to hear any advice as I have been managing this by myself and reading up on this site which is brilliant. If anyone has any time I wonder if you would be so kind as to have a read of my profile and let me know if you do think this is polymyalgia and that I am doing this right with the amount of pred I am taking. I read that if I wasn't on the right amount of pred then they wasnt worth taking. I have just taken 7 days of 30 mg and now need to taper so would love to hear from you. Sorry if this isn't the correct way of doing it but I'm just learning and working my way around this site. Thank you.
Amount of prednislone and tapering: Hi I joined in... - PMRGCAuk
Amount of prednislone and tapering
After just a week of 30mg I would try dropping to 25mg and see how you get on. It should be fine and still plenty for PMR. And try to not overdo lifting chairs and things!!! Then stick there for a few weeks.
Ok thank you will do I got a bit panicky wondering if I should have upped them. I know I can't believe the normal things i could do like lift a chair or even making a bed with a heavy cover now feels like i have lifted a lead weight! Even when we are doing well with pmr will the inflammation ever go completely or will i always be left with slightly inflammed ankle pouches and knees, is that just the norm now? Thank you for your reply and help.
Just be patient. 25mg should be plenty to manage PMR - but it doesn't happen in a couple of days for everyone and you have to do your bit too. With patience the inflammation will be got under control but as I say it may take a month or so. But do keep an eye on how you feel. Your GP may be able to do the blood tests again - and that would be useful.
Ok Brill thanks for advice and yes I'm going to source a less risky blood test with my doctors. Thanks again for taking the time to read my post. I have read about vitamins needed with pmr should I be on any at the moment? Is this something the rheumatologist prescribes or do I ask my doctor? I'm thinking in case my appointment is cancelled as I have been on steroids now for three full months.
You should be taking Calcium and Vitamin D to help avoid side effects of pred. Take your pred with food and a good bit of water to help avoid heartburn. Skip the spices and the coffee. Try to avoid carbs and sugar, because pred changes the way we metabolize them, leading to weight gain. Cut the salt to avoid water retention and swelling.
You should also start taking it easier, even as you feel better. PMR makes us more prone to injuries because we're moving in awkward ways to accommodate our aches and pains. Pred makes us more prone to muscle and tendon injuries, and lengthens the recovery period. And then there's the "pred head" which makes us feel like we're in a fog.
Take everything down a few notches. Your body needs deep rest, not only sleep. This can be hard with pred pepping you up, but it's true none the less. Give yourself a break from physical and mental stress as much as possible.
This is no time to give yourself an injury, when there are no medical resources to spare.
Thank you for the advice much appreciated. I think I need to accept I can’t do certain things now or at least at the moment - so hard when you are really active and so used to doing everything for yourself. To be honest I have only just realised that this neck pain comes on and stays for the day after I have lifted something and obviously done too much. I will get myself those vitamins too. PMR is actually quite technical isnt it! Thank you
Yeah, we've all been there. It's hard on all of us. I don't recall anyone on the site ever saying "Oh, this is a piece of cake!".
Early on, I had A LOT of pain. My hands and wrists and legs hurt so much, and were so stiff, I couldn't reach across the tub to turn the water taps located, for some reason, on the back wall of the tub enclosure. So I sat myself down to figure out how to make myself a tool to extend my reach. What I finally came up with was a large plastic bottle from mouthwash, which I emptied, and experimented with filling it to a level that wasn't too heavy for me to lift, but was heavy enough to move the taps without damaging them. It worked, and I used it until I didn't need it anymore.
Use the time you're resting your body to think about how to break down jobs into small parts, and figure out how you can handle doing them in pieces until they are accomplished. Do a few steps, then rest. Rinse and repeat. Figure out f you can use a tool or an implement to help you, and either find it or make it. Right now, it's going to be hard to have people come and help you with anything inside the house. Save your energy for the "must do's" and let the rest go. My motto is "My idea of cleaning is to sweep the room with a glance". I name the dust bunnies, watch them grow, and when I have a good day, clear some out so there's room for their babies.
You're gonna be fine. There's a lot of solid information and hard won wisdom on this site, and among the members. We're all in this together, so ask about whatever is on your mind. Some old souls here will have some wisdom to share, whether it's about PMR or your fears. We support each other in our successes and in our failures, in our progress and setbacks. Welcome to the club, even if you never wanted to join.
Haha nice message made me smile! Thank you so much. Yes I have read lots on here and very helpful as not getting a rheumatologist appointment for over three months I wouldn’t have known any of this info without this site. I just couldn’t get my head around me going from being really strong and healthy to having a cough and virus to this! But like you say time to admit and rest up. I’m a childminder but since I got ill I employed an assistant to help me as I wouldn’t have been able to do it on my own. I have been shut down now with this virus so no excuse for me to not rest. Thank you once again and hope you are a lot better now too
And forgot to say...don't take pred and calcium at the same times. Pred for breakfast and calcium for lunch and, usually, the daily dose of calcium should be split in two, so calcium for dinner. The body can only process a certain amount of calcium.
And keep those legs up to help control swelling and as others say....little or no salt.
My neck is a fragile part of my body anyway but yes, any weak spots will kick off if you do too much. In general if you overdo it in the first stages of PMR you will most likely to suffer from delayed onset muscle sore (DOMS). The lose ligaments etc have been mentioned, but doms is like having those sore lactic filled muscles after serious sustained exercise. Except I got them from working in the garden for less than 30mins. The next day it was like someone had kicked all my muscles. I learned to start at 5mins then rest for no more than 30mins and built it up times and intensity wise and then had a rest day, the next day to let my muscles rest.
Brill yes I will use those timings for vitamins. Yes I had a bad shoulder pain and this strange neck pain but shoulder gone now so seems this neck pain will be my tell tale sign - I'm learning every day Haha strange question probably but does these steroids give anyone a running nose just a slight one almost continuously since this PMR started and both times on upping the steroids I have had bad chesty coughs both when I increased from 15 to 20 and then again 20 mg to 30mg. Not a Good time to have a cough x
I have been bunged up and have had sinus issues for years. Steroid used in steroid sprays etc to reduce inflammation and for reducing inflammation elsewhere in lungs etc. If you have a runny nose and post nasal drip that will make you cough. Perhaps there is a residual load of mucus left up there from the flu and it being an indoor season running into isolation. Try a sinus spray or something.
Someone else may be more helpful! But my final thought is to obviously keep a watch for GCA symptoms this early in. It sounds like your initial cough was productive? A dry, persistent cough can be a symptom of GCA so any vision symptoms need an emergency response. 🌻👍
Yes both coughs were slightly chesty and I have been to the opticians and all good. She wants to see me in 12 weeks so I'll make sure I go. Thanks
What work are you doing?
A good read thank you and a few more things learnt x I think I will buy the book mentioned tomorrow and have a read with my feet up. Interesting re cold/flu symptoms as I often have these like today and only last for a day or two not sure if PMR or steroids
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