Hi I've been on pred for 18 months started on 15mg and been reducing , I've got down to 1 and 0 alternate days but started getting pains in the top of my legs and stiffness as well also pain in my shoulders. What is the best thing to do ?
Your starting dose was at the lower end and 18 months is not terribly long in PMR terms so most of us on here would say you have done very well. It took me three years and five years to get to nil Pred. ( Ive had two sessioins of PMR )
Not qualified to say what dose, of course, but I'd certainly up it and see if that fixes the pain. If it does then you could slowly reduce again.
Good luck.
wow from 15 mg to 1 in 18 months that was quick, well done you. but it seems to me you are starting with a flare. but then again it could be withdrawl symptoms
give it a few more days if it gets worse go up a mg. i hope thats the correct advise.
it wont do any harm good luck x
Request a CRP blood test, which would indicate inflammation in your body...I reduced prednisone too quickly , pain returned , just had another CRP test last week.... it was 18 (should be 1) so Rheumetologist put me back on 10 mg prednisone for two weeks then we'll do another CRP test...if it is still high we'll increase prednisone....Rheumitologist explained to me that the damage being done to the inside of my arteries from the inflammation is very dangerous, so staying on enough prednisone to eleviate that inflammation is imperative.
Wendy, you have reduced from 15 to 1mg in record time. As you say, pain and stiffness returned. Why risk full flair at this point, which would require you to go to 5, 10mg and then you would have to start all over? It is better to prevent problems. One way to do it is to increase the dose to 3-5mg for just few days (2-5 days) to flush the system and then go back to whatever dose you felt comfortable ( assuming 1-2 mg)... That is what I do.
Go back to the last dose you were comfortable at, 1mg every day at a guess. You wouldn't be the first person to discover that tiny 1mg dose was enough to keep PMR symptoms at bay!!!! But if that isn't enough - go higher. It isn't worth it to risk a flare for a couple of mg of pred. How quickly did you reduce from about 3mg?
Eileen, you've heard this before ( more than once very likely as I never remember who will have seen what. ) I think it reinforces what has been said about even apparently tiny doses of Pred. being significant.
In exactly a week's time it will be four years since I had a hip replacement. At the pre-op interviews one of the professionals was the hospital pharmacist. I told her I had reduced my Pred. to 1mg. She said that on no account should I reduce any further until I was discharged by the consultant six weeks after the op. Obviously she thought that the 1mg. was significant.
I read that you said that going from 15 to 1 mg is fast, but my Dr. Took me from 15 to 7 mg in 2 months do you think this is too fast? Cause I still get a lot of pain but it's not only on my shoulders and my hips but also my back and sometimes all over my body, but I've gained 25 lbs. Don't know what to do. I'm feeling very frustrated. And at that I'm taking hydrocodone for the last three months. Any body has any answers, Help!!!
Woman of sense IMHO! Like you!
Far too fast - if it works it would be fine but it obviously didn't - he has taken you to a dose that is too low to manage your symptoms.
You can lose weight while on pred and often avoid gaining it in the first place by cutting carbs drastically. I started to lose weight while still at 15mg and lost the best part of 36lbs before I got to about 7mg. It can be done - but you have to be consistent and honest. No junk carbs, and very little fruit - it has loads of sugar and whatever sort of sugar it is, it is carbohydrate!
You know Eileen, I am very confused. My wife has suffered from migraines for almost 14 years. Been to doctors everywhere. The last two doctors told that Western Medicine had no more options for her. A friend gave her a book and said I think you might find this book interesting. She read a portion, said what do think. To which I said "like a smart ass read the book". Told me when she finished, he says we have to eliminate, dairy, meat, go gluten free, she was, eggs and all process foods. What no pepperoni, cheese and pepperoni, I could live on it. Okay, I will try, but my sugar readings have been off the charts for me since Phredsone, if they go higher I am finished. Agree, agree! Now fun thing happened, the reading started to improve and getting better all time. How could this, at first only fruits and vegetables, double checked, my readings were the lowest I had seen. Now, the great news she not had migraine since three days after we started the diet. She has been a stained glass artist for over 14 years, the migraines started a year or so after she started. No more cheese and pepperoni for me, if it wasn't for PMR, I would be on top of the world. Even without my pepperoni. Eating fruits in the morning for breakfast and Blood Sugar goes DOWN!
EileenH, need some advice, I am schedule to reduce from 30 mg to 27.5 on Saturday. I called request at what pain level I reduce the Phed. The nurse answer was, when you have more good days then bad days in a week. Well not happy with that answer. I would much prefer reducing after normal lab work and a stretch good days. Why drop when you are in pain. What your thinking?
Thanks
Depends how you look at it I suppose - if you have eliminated pretty much all processed foods your overall sugars should improve - fruit or not. And not everyone has the severe sugar problem with pred.
But what DO you eat? Vegan obviously - but what do you use since most vegan products are wheat-based. If you are only eating fruit and veg - do be careful about B vitamins. It is the one thing I know my vegan mates have problems keeping up with - there was panic in the UK a few months ago when Tesco refused to stock Marmite because the manufacturers put the price up. Marmite (similar to Australian vegemite) is a love or hate substance but the easiest dietary B vit source and vegan. I'm a hate person...
The best result you got at the very beginning should be a guide - if you haven't got to that then you have to ask questions. I have to admit that the fact you have needed so much to get it under control does bother me a bit and the fact your nurse is telling you to reduce while you still apparently have more pain than you did then isn't confidence-inspiring! Are they confident it is "just" PMR?
We have said all along - if you have more pain than you have been used to - don't reduce. And if your inflammatory markers are above where they used to be - same again. If they work for you, use them. They don't work for everyone because sometimes they don't rise or rise again when on pred. But if they are high because of a flare and not something else like a chest infection or trauma - wait.
Good morning EileenH, at least it's morning here. Crazy weather though has been high 60s low 70s, they predicting snow tomorrow into Friday.
Food, morning shake, wild blueberry, coconut milk based, other fruits plus Spirulina, then another mid morning shake similar, salad for lunch, green leafy vegetables, lots of spinach, maybe some black beans. Drink cilantro juice, Jan adds drops in water. Fruits and veggies through out the day, dinner sweet potatoes, home made Salas on potato, can Salomon or Sardines. I eat a lot of Radishes and have done so for years. All foods are either organic or wild.
I thought my blood sugar readings would fly through the roof, but they fell. I couple of years back, I went on a no carb diet, lots chicken, eggs, cheese, fish the only fruit was an orange after a hard ride. BS numbers were higher, no carbs, but that orange. I did diet for six months, no better numbers, Jan was saying all along she thought it was unhealthy. I had a nice steak, baked potato and a couple of beers. I don't know that product you were speaking about. Jan was a vegan a number of years back, I was traveling and never was. Good day with the PMR, going for a walk. Keep smiling, I got a smile on my face.
Thanks EileenH, that is exactly what I feel, if I am not feeling normal I am not reducing. This flare up seem to have started right after I had a sore throat and head cold. Just like the original episode started after intestinal virus.
I am going to let my body tell me, do not need another flare up!
Thanks again for your wisdom!
Normal? Or normal for PMR? Not quite the same!
Marmite is a very salty yeast extract, used as a spread on toast, or to flavour foods like soup. I suppose the closest thing to compare it to is a beef extract, but marmite and vegemite have no meat component. If you live in the US you probably have never heard of either. If you are in Canada and consume it (I do, but as Eileen knows I always was strange ) then you are almost certainly of British extraction. Yes, it is supposed to be a good source of B vitamins.
Sadly, for me, it's on the NO list if you have gout. I'm tossing up whether to resume my Marmite toast after a very painful and, I hope, isolated, attack.
Any novice thinking of giving it a try, you must use it very sparingly. Don't be tempted to use it like chocolate spread.
I cannot bear marmalade. We all have our funny ittle ways!
Another food I remember form childhood which I can't get here is Patum Peperium or Gentleman's Relish. I think it might be anchovy based. And I do like marmalade, probably because it is slightly bitter.
What is it about marmite which is bad for gout?