Zero pred?

I started pred almost exactly five years ago at 15 mg. At the time I knew nothing and my doctor didn't explain. Thought, after miracle of the trial week (I was then prescribed pred without a break so no return of symptoms) that I would be done and dusted within three months! And, like you, I've had to learn patience - hence my ability to take six months to taper only one mg! We are all different. I think I'm a lucky one who metabolizes pred well so have always done well on lower doses and had no difficulty, once I discovered dead slow method, tapering to 3 mg by end of first year. But it turned out that 2-2.5 was my "lowest best dose" to see me through the next three years, with the occasional unsuccessful effort to taper further. I know a lot of people get stuck at other levels, often around 7 or 5, so I do count myself lucky. As I write this I realize it took me a year after I started tapering to get to my lowest best dose, where I remained for three years. Then another year to taper from that lowest best dose to zero. To make the duration of PMR match more closely to the median duration, I actually remained undiagnosed for over a year prior to June 2015 so I've had a boringly classic experience of PMR!

I remember when you came onto the forum and how pleased we have all been with how brilliantly you did once you started your exercise regime and showed such rapid improvement!

Anhaga, and I thank you and the other members for your encouragement. I wish you well. The think I miss of the Northeast is the seafood although we do have some shipped in, but not since the virus. Stay WELL! 🙂

Michdonn, I was interested in what you said about not suffering from pred side effects, outside of bruising. Do you think that will ever improve?

I am down to 3.5 mg of pred, and all my side effects have vanished, except the thin skin and terrible bruising. It has not improved, in fact it might be getting worse.

I wonder if anyone has more information on this.

Depends on the person I think. I have periods of bruising but I also am on anticoagulant therapy. Some doctors say it doesn't improve - a lot of patients say it does eventually. Like everything else in this journey - patience!

Hi Patricia, I am on 0.5 I still bruising a little but not like I was, of course I am 82. And as we get older our skin is as robust as it once was. Plus we all are individuals and a little different. But I feel good and staying very active, always as usual some day maybe too active. Stay the course, you come out the other side we will be waiting to hear from you!!!! As always a 🙂

I still get the occasional little red mark on my forearm. However now that I think about it, haven't had any for a while. Of course that may be because I've not been doing anything which causes minor trauma, such as slinging a shopping bag on my arm, or struggling into a heavy backpack. On the other hand it was only a little over a year ago that I completely unknowingly caused a layer of skin to peel back, didn't hurt only noticed because blood! This took ages to heal, but there's no sign of it now. And since then my pred dose has gone from about 2 or 2.5 to zero.

We usually advise people to keep skin well moisturised and this of course means drinking enough water as well as applying topical moisturiser or oil. I've also heard people recommend arnica but haven't tried it myself, my condition was never to the point where I needed to seek out other treatments. Some people suffer quite severely and even use special forearm or shin protectors you can buy, which are like a second skin. I think gardeners in particular like the extra protection. 😃

Patience is the key! Good luck.

AllyCD, please don't think about a time to reach zero, look to get to your next dosage level. We are all different, but I am one of those who has had many flares. Some from a cold, stomach bug, eating wrong. Four years ago when starting on 20 mg my Rheumey told me I would be off Pred in two years. Ten months later I had a flare and ended up on 30mg. Since then I have focused on each step. Currently on 0.5 tapering to zero. I wish well, smooth sailing for the rest of your PMR journey. 🙂

thanks Michdonnn, for that reminder. Too easy to think I can run before I can walk. Going steady now. Have newly diagnosed friend whose gp told her PMR was local to where she lives - guess where I referred her!

AllyCD, I would imagine the forum. It is amazing how many Rheumeys are lost when confronted with PMR. The Mayo Clinic website is a good place to start. Location is not one of the factors list as I remember. Genetic is a fact viruses, some believe yes, another no. My father from Ireland, he was a type 2 diabetic, I am a type 2 diabetic and passed it on to my children, brother and family the same, oh none of us are or were overweight.

Genetics! Stay well keep active, positive and smiling. 🙂

What on earth did he mean by that? There ARE sometimes localised clusters but that just suggests there might be an environmental or infective cause but none has been identified.

I'm afraid I have no idea Eileen. I took it as an example of how uninformed some gp's can be. Next appointment she has she will be telling him more about what she has learned from forum. Extraordinary how many of us are having to educate those who are supposed to be treating us. Just remembered gp did say it was a Hampshire based illness.

What on earth is he on about? I think the incidence varies across the country - it certainly varies across Europe, being highest in Scandinavia and lowest around the Mediterranean. In contrast though it is highest in the south of England compared to the rest - but not specifically Hampshire! I knew Sara and Toby and co would have had a look!

https://pubmed.ncbi.nlm.nih.gov/30297332/#:~:text=The%20overall%20incidence%20rate%20of,PMR%20in%202015%20was%200.85%20%25.

Have forwarded the link, hopefully I may get to hear the outcome! Many thanks Eileen

I must ask Sara if they took previous location into consideration when they did the study or if they used just very basic figures. So many people move to the south coast to retire, especially Dorset, Devon and Cornwall - so over 60-65 getting there and the average age to develop PMR is 70+

My rheumy said that you find clusters of PMR, when I was first diagnosed. perhaps her GP had read the same article!

That may be the explanation, will let you know should I discover more. Meanwhile your thoughts are much appreciated. It is all quite a puzzle!