Having visitors over the next few days I decided to double my pred (4-8 mgs), Cocodamol 1 tablet every 5 hours, for three days.
End of second day not much seems to have happened! Pred has just just made me excessively tired - Cocodamol helped the PA 'slightly'. Not worth the effort I think!?!
Even after 7 years I don't understand this pesky illness.😏😏
It is weird isn't it. I started a med for neuropathy at 60mg and it really helped. The full recommended dose is 120mg, so I increased as prescribed but it didn't make the neuropathic pain any better, but I had doubled the chemicals. I suppose sometimes less is more and more is less. Unfortunately we don't know which way it's going to go.🌻
🙄🙃
Well, there's an example of what I posted a couple of day ago I said would never do - increase pred "just in case". On the other hand, have you done this before? Did it make a difference then? (And what is PA?)
Not done it to that extent before!
Poly Arthritis!
Maybe it just means you are at your optimum dose right now?
I wish you could just stop all tablets for a few days and see how you feel!! Don't suppose it would kill you, but I wouldn't dare do it!🤨
I know what you mean!
Sometimes that feeling is overwhelming for me. In the short term I think the pred most dangerous one to stop sharp. But it would be nice to see what is your body and what is a side effect or interaction of drugs.
As you say, can be done with some medications - but wouldn’t recommend with Pred!
Many people have done it by accident, but probably not longer than 24hours - and I doubt the full effect would be out of your system by then, but enough to know it’s probably not a good idea!
Obviously you have to take a punt when you get very low - 1mg or 0.5mg - but not sure I’d want to do it much higher!
I definitely wouldn't stop the pred. Even the withdrawal symptoms when you forget and take it later in the day tell me it's not a good idea. The rest I would probably suffer in the medium or long term but don't have the potential to cause a crisis in the same league as pred from 6mg plus dosage.😱
It might not kill you but it could make you extremely ill as your own adrenal glands will no longer be working. Too big a risk.
I know, I know!! Don't worry, as I mentioned, I wouldn't dare!
Always 'thinking' of doing daft things, but I never do them.🤓
I am with you there...daft things my middle names..😃
That's a reliefxx
Not a good idea to stop the pred - I know you said you won’t anyway...but just saying.
Were you able to enjoy your visitors?
Son & family are here till Monday (5 days), Half brother & sister with spouses (10 days)!!! Not staying with us thank goodness but I get pretty tired with all the nattering. My sister never closes her mouth!!!!🥴
I remember years ago we had a visitor like that. Wife of hubby's best friend from high school, visiting from the States, he was godfather to one of our kids. I went across the street to a friend's house to seek refuge for half an hour!
I disappeared into the bedroom for a few minutes - quite often!!! I don't suppose she even noticed .😂
🤣
😂😂😂😂😂😂
I think it was why I enjoyed cooking , so that I could escape to the kitchen , it's nice that vegetables don't talk back 😋😁
I preferred the bed!😂😂
She's just pleased to see you! Count the days and try to Enjoy!
I've had to taper many of my medications , or stop certain things for a short time for tests or to work out if something was causing an intolerance , believe me if you need the medication it's not a thing I'd wish on anyone.
I agree with Heron though , upping the dose " just in case " when you haven't already begun to have new PMR symptoms and pain is not really advisable .
If you haven't already got any symptoms it would not be suprising that you didn't feel much difference.
After the initial " Energiser Bunny" effect when you first start Pred you don't usually get the same rebound of energy when you up a dose . The speed of change and recovery from new pain is usually slower each time you increase too.
Sometimes you feel more tired because of the increase not just your activity.
That's why it helps to hold onto doing the increases when you know you need it , so the time it takes to control the new inflammation and pain doesn't keep taking longer.
Hope you enjoyed your visitors though , enjoy your rest when you can get some x
The only thing is Bee I am in pain almost 24/7. Most of it is Polyarthritis (fingers, base of thumbs, wrists, elbows, hips, knees and ankles)!!!
I really only want to know just how much of the PMR is still active. That was why I posted a few days ago.
For some reason both the doctor and rheumy have refused to do an adrenaline test - but both say "keep taking the pred"!!
Doing better than I thought with the visitors. Normally I can't 'cope' after a couple of hours but I have managed double that (for them)!
Life is still good.💥🍾🍸🍷🥃😎😎
Hi constance, have you tried kinesiology tape for your hands. I tried it for a shoulder and my hands and it really helped. Sadly I am allergic to the adhesive but the price has come down and there are videos on YouTube of how to place it for different things. My thumbs are my worst most frequently. I now use cohesive tape which doesn't stick and can be reusable. Some days it's painful putting it on but just having it on for 15 mins somehow helps.
I'm also allergic to 'tapes'. I have professional braces for knees and ankles. I use support gloves for my hands. (You should see me before I go for a walk).😂😂😂 Thank goodness for long trousers!😂
In bed I use tubular bandages (from Boots) these are comfortable for the night. In the house I try to go bandage free.
I know what you mean my knee brace, elbow brace, and what my sister calls my "sex gloves". The neoprene fingrless glive with like a black lace pattern. Although i can't get those on and off lately. I feel for you if you have the same thumb pain but in other places too. Even the gentlest touch can feel like someone has stabbed you with a red hot knife. 😣😲😱
Not so much "touch" thank goodness.😊 It's movement that does me in!
😱 indeed then....
You wouldn't believe that I am practically crippled with arthritis and PMR would you?
Look at my avatar photo! This was taken last year when we moved into our new flat. It's the view we have from our windows too.😎
I just hope you get some relief. So glad you have the lovely view. I remember a nice photo through your window a while back..🌻
Me too , plus with the EDS , I find most tapes also pull my skin off .
Wish I'd known I had Ehlers Danlos in my youth when I tried to wax my legs , not just once, but twice!😨😨😨😨
I think my Mum just got her own back the second time for the years of torture!
You are like me !
I am just waiting for my last set of measured knee braces then planning to take a photo in the full kit ( which adds about 40 minutes on the time to take a walk!)
Can't wait for the waterproof ones to come so I can get back to a bit more swimming .
I am going to dress in black and then do a pose like a superhero to make myself feel better about it all.
I am hoping I will look like Black Widows older, wobblier distant relative and will call myself .....Auntie Venom !! ( Get it?!!😋)
😂😂😂
I understand completely because I'm in the same boat , except I'm on an enforced lower dose of Pred until I can get signed onto using another drug.
I, like you , am in alot of pain not from the PMR and have been for over a decade , that is why I do sympathise so much with you and others , because I know when it's not controlled any day is too much.
It feels like you are a prisoner of war being tortured everyday , but the thing torturing you is your own body , I'm not suprised that some people with Chronic Pain can end up with PTSD , I wouldn't wish it on my worst enemy for a day , let alone as long as many of us have to struggle with it.
You , are also similar to me , and alot of forum friends , because we often don't know exactly which of our conditions is causing us the most pain , especially when the pain we often get from more than one condition happens in the same places.
The Hairy cherry on the upturned cake being that one condition can then trigger the other!
I mentioned tapering off and how horrible that is because two of my sudden tapers included Pred and lovely GCA Flares to follow , one included everything , at once !!!
I can feel the fellow Fibro and Neuropathy sufferers shaking in their boots thinking about that one.
I want to help , if I can, to get you to a point that you can find comfortable , as I know medication , with conditions like Fibro , Hypermobility Disorders and the Arthritis Group you are looking for comfortable and managed , and not 100% pain free as the good daily goal. It's the point that allows you the greatest quality of life everyday without triggering Flares in any of our conditions that we can sustain long term, that is the key .
So the " just in case " medication method has been tried by us all in the hope it might work , but it's not a long term plan , and if we are having to try it , without being told to by our Doctors , it isn't a plan that does us good long term .
It is proof , not that we aren't good of taking care of ourselves , but that the Medical Team looking after us are often letting us down in the advice and drugs protocol they have given us.
I will offer to be your pain buddy if you want me and you can contact me anytime by PM for support as well as still posting on the forum for all the help you can get here too.
I don't know if you are being given any other drugs or support for your other health issues and PMR , or offered other alternatives.
But I think one step you might want to try to get to , after you have had a good rest after your friends have left , is to get a conversation going with your GP and Specialist about what medications you are on , not just for PMR, but any other conditions like the arthritis and anything else and finding you all the additional support you need to help get to that Manageable level of pain.
In the meantime , enjoy your weekend , you deserve a bit of " Normal" , just try and rest as much as you can through the day , especially after alot of activity on your feet , as that will help prevent any inflammation from stirring up from the extra physical stuff these visitors bring.
And , just because they are visiting , it doesn't mean they can't do the tidying , carrying and washing up , they are having the pleasure of seeing you in your own home , chores in the house is " mates rates" for your hospitality!😋😂😂😂😂😘
Seriously big but gentle hugs , and contact me if you ever want or need me, Bee x
Yes! And it is not only understanding the disease, but the medications and the changes in our bodies that go with the disesase, the medications and age.
You and me both....it still baffles me after 7 years what it throws up, went from 8to 12.....still struggling, each day different....and this heat is a struggle too!!....
The heat is awful. My blood sugar all over the place too.
I bet it is....I'm having sweats all the time without this heat, would just like a night's sleep!!
Temperature should drop at weekend...🙏
My OH is the same , new batch of orange juice and electrolytes ice lollies have just gone into the fridge for the lows .
All that extra blood testing to make sure he isn't getting high.
Touch wood no hypos yet😉
Just put tomorrow's lollies in the freezer. It's the fact that I test, take insulin then sit to eat meal and with the heat and a slight tummy issue I have, I don't seem to be able to eat enough. Had a couple of night time hypos and some low readings. Usually glucose tablets as standby but took a while to remember where they were in The night. 🤣🤣🤣 I was a bit 🤪 by the time I found them. 🌡️⛑️💉⁉️❓❓🚷🏳️🌈🏳️🌈🎂🎶📺🥕🍊🥬👣🥵🥵🤤🛌
Yes the OH was close last night but the lolly did the job ( funny way to cool down in bed too , reading a book and licking an ice lolly).
The heat certainly doesn't help your tummy issues or nausea , I have had to increase my anti nausea medication at the moment.
The heat just strips you of appetite too , I get that full feeling even quicker than usual in this weather.
Yes nausea in and off all day but that least I didn't vomit in Tesco yjris time..
What do the lollies have in them?
I have various versions but the easiest one you could make possibly from what you already have in the house is
Glass of pure orange juice ( I use freshly squeezed with bits),
Glass of water ( I use mineral water , you can also use coconut water or tap) ,
lemon juice or lime juice or a dash of two of both ( this can be optional),
eighth of a teaspoon of Himalayan pink sea salt or any sea salt and the same amount of losalt ( that is the salt that is more potassium than sodium) .
If you only have seasalt use that , if you have high blood pressure or water retention it is better to use all low sodium salt ( losalt).
A teaspoon of local honey ( for taste , helps Fatigue and summer allergies)
Basically put it in a bottle or jar with a lid and shake to mix and the salt and honey has dissolved.
You pour this into ice cubes trays to suck or add to drinks or use an ice lolly tray .
You can use mini plastic cups and put the sticks in them .
Freeze .
If there is more than you need for your tray just put the bottle in the fridge it keeps for a week and you can refill the trays or take some in a drinks bottle on a walk or while doing exercise.
Enjoy!!
I forgot to take my tablets with me when I went away for the night. So took them when I got back around 3pm, found I slept a lot better than taking them in the morning. So now take them 3pm each day to get a better nights sleep.
Most of us find our own 'time' for taking tablets. For some it's late in the evening, others in the morning, etc etc. So 3pm might be 'your' time.
Building up my strength
4months since I took my last steroid tablet
Upped my prednisone no results!
Sickness and diarrhoea- what do I do about my tablets please? 
PMR and coated Prednisolone tablets
