Doing quite.well reducing Preds very slowly. Had to raise them a couple times again but Dr now got me on 10mg one day & 9.5 next day for a month then try 9mg a day again. Have a upper respiratory infection of some sort at mo & feeling rather unwell, my PMR pain & stiffness really bad again. Could this be because of this other infection?
Hi Marian
Sorry to hear you are feeling rotten, I'm new to all this having been diagnosed 4 weeks ago, but I've been reading everything I can find and getting great support from this forum.
It seems to be any change is bad for PMR, I suppose our bodies are busy coping with all it can throw at us and any other illness tips the balance.
Hope you feel better soon.
Jan
Thanks Jan. Yes it seems anything can knock you backwards! You take care. Best wishes Marian
Yes, Marian, unfortunately the stress of the infection on your body could well be aggravating your PMR. Some medics actually recommend a slight increase in steroid dose to cope with the returning pain and stiffness, in your case perhaps returning to 10mg daily until you have completely recovered from the infection would relieve your pain. Certainly, don't attempt to reduce any further at this stage. I hope you feel better soon.
Thanks for your comments & advice. Will certainly not reduce my Preds at mo. Best wishes, Marian
I just got over a very very bad upper risportory and sinus infection, which threw me into the worse flare I've ever had; I've been using a cane and/or walker for last 4 days. My new GP (she has PMR) told me treats hers, with what she calls "steroids brust", jumping dosage up 5 10 or even 20 mg for 3 or 4 days and then dropping back down to regular dosage; AND she never messes with anything under 5mg, after a month or 3 on 5, she stops taking the steroids completely, and resumes them when the PMR starts up again. She says she sometimes is off them for months, and it works for her. We are going to try this method; she will write prescription for 10 & 20 prednizone, as I need them. The rest of the time, I will follow my RAs instructions.
I just got over a very very bad upper risportory and sinus infection, which threw me into the worse flare I've ever had; I've been using a cane and/or walker for last 4 days. My new GP (she has PMR) told me treats hers, with what she calls "steroids brust", jumping dosage up 5 10 or even 20 mg for 3 or 4 days and then dropping back down to regular dosage; AND she never messes with anything under 5mg, after a month or 3 on 5, she stops taking the steroids completely, and resumes them when the PMR starts up again. She says she sometimes is off them for months, and it works for her. We are going to try this method; she will write prescription for 10 & 20 prednizone, as I need them. The rest of the time, I will follow my RAs instructions. Hopefully, I'll be able to get below 20mg, sometime been unable to do.
Hi Jeanne
Your GP has an interesting approach, maybe it's something to investigate? Please let us know how you get on, I'll follow your posts.
Regards
Jan
I think it is too, I'm definitely going to try it. I did 30mg for 3 days now doing 25 for 3 days and then will be at my normal 20mg. I will keep you and forum infomed on success or lack of. I'm a more difficult case of PMR, as I had a massive viral or bacteria infection back in 1999, which left me with inflammation thru out my body, and damaged my heart, lungs, kidneys, and thyroid. Since that time, ive had to take medicines for each health issue , plus potassium, and calcium, and allergy medicines. In the Fall of 2013, my parathyroids went bad, totally shutting down my kidneys, consequently I now have moderate to severe heart valve leekage. I'm living on borrowed time, I've died 4 times, I think our local ambulance drivers, draw for the short straw, whenever they get my call. Hahaha. So you see, at my age 75 years old, staying on higher dosages of steroids, and not worrying about the side effects, is a no brainer for me. Plus when I'm on a higher dose, my chipmunk cheeks get fuller, and the winkles dissappear, and it helps my eye retina problem. Hahaha ..
Jeanne, I'm afraid I don't see the point in your GP's approach. To accept that she can stop taking Pred at the 5mg point, be off them for months, and resume them when the PMR returns in itself would mean the PMR never really going into remission. The reason being, that she isn't allowing time for her adrenal glands to slowly 'wake up' again after having been suppressed by the long-term, higher dose steroids. The adrenals can be expected to start kicking in again with their natural pre-steroid (cortisol) production around the 7.5mg steroid level, but this takes time and we can have a shortfall of natural steroid in our bodies until our adrenals catch up, thus leaving us at risk of flaring inflammation, fatigue etc. With a very slow reduction in steroids, even slower from the 7.5mg level than previously (each drop being a higher percentage drop than at the previous dose), our adrenal glands are given the best opportunity to get back to normal production, making flares less likely and sort of tricking the body into not noticing the gradual withdrawal of Pred.
Far better to follow the slowly slowly approach all the way to remission and zero Pred, giving the highest chance of complete remission, rather than coming off treatment at 5mg and accepting the likelihood of continuous relapses of PMR.
She said it works for her, but I doubt it will for me. I don't think with all my other health issues, I will ever get below 20mg. But I know that using the burst method will help control the flare. I'm having a very severe one now. I was on 20mg went down to 19mg and ended up with congested lungs and sinus infection (happens every time I try to reduce but this time I'd only got down 1mg the last 3 times I was able to get to 18mg) which then lead to this flare.
Jeanne
I agree, from what I have read you need to allow your own adrenal glands time to restart otherwise you would have a 'flare' due to withdrawal symptoms from the preds.
MrsO
I agree, from what I have read you need to allow your own adrenal glands time to restart otherwise you would have a flare due to withdrawal symptoms from the preds.
But I'm interested to learn more about the "burst" method of overcoming flares because of other infections, do other members have any views?
Jeanne, many experts recommend increasing the steroids by around 5mg to deal with flaring inflammation, so your GP's "steroid burst" in that situation is in line with their recommendation. It's just her routine of stopping her steroids at the 5mg point, accepting PMR returning and resuming steroids that flumoxes me.
It sounds as though you have had more than enough to deal with without PMR on top of it all, but with your amazing spirit and positivity, I wouldn't be so sure that you will never "get below 20mg". I do hope that you soon recover from the latest episode with your lungs. Good luck!
Jan, yes the "burst" method of managing flares, whether due to other infections coming on board or just the inflammation of plain PMR rearing its ugly head again, is recommended by many experts, usually 5mg doing the trick unless the returning inflammation has been ignored and allowed to take serious hold again, in which case a higher dose may be necessary.
Hi Jeanne, i like your attitude, though i'm sure you're not always so happy go lucky. Your GP's advice seems to go against everything that's advised on here, but then so is just about anything my GP says. I think the proper thing is to do what you think is right for you...if it doesn't work then don't do it again...it's all a bit trial and error as we're all different and what works for one doesn't neccessarily work for everyone. Anyway...more power to your elbow...you're a super trouper xx
Hi Mariam I will follow this discussion as many of us will do too!
Keep safe🍀😊
I definitely have my trying moments, but I try to stay positive and accept my limitations. This last 2 months has really tested me and now this flare is really setting me back .. I did the 30mg for 4 days and I'm now taking 25mg and I can feel my lungs starting to fill up already .. more than likely I will have to go on a 40mg 4 day taper to get things back under control .. I can barely walk, the pain is tolerable but the weakness and stiffnes make it so hard to move my muscles .. you and I both know, there are times you just want to quit fighting and give up but I keep on fighting .. this group helps cuz they understand what I'm going thru .. but sometimes other people look at you as if you are faking .. example: When I'm leaving a grandchilds ballgame and I'm just hobbling along with my cane or walker and then I get on our Honda Tryke with absolutely no problem .. can you figure that one out .. I'm using different muscles .. hahaha
Wil keep forum updated on success or lack of with ths method
Morning Mrs O. Jeanne's doctor is only 50, perhaps she knows her adrenalin glands are kicking in and that is why she has such an unusual approach to Pred reductions😏😏. We all cope with this pesky illness as best we can, but she shouldn't really pass on this info, it could be very dangerous (especially for newbies to PMR!).
Regards fr Constance. 💐