Hallo everyone. Will try to be as brief as possible. Diagnosed summer 2019 and started on 15 mg Pred reducing 1 mg every 6 weeks. Was OK until I reached 8 mg and had a few problems so after reading all the advice on this brilliant site decided to start DSNS which was successful until I reached 3/1/2 so went back to 4 mg for a few weeks. All OK getting to 3 but going to 2/1/2 has been problematic. Extreme aches & pains in upper arms, neck & shoulders, tired and feeling generally unwell. Went back up to 3 mg but no easing of the aches etc. What would your advice be?....not sure whether to go up by 1mg or perhaps even 5mg before I start to reduce yet again. Was going to get in touch with doc but then decided your help and advice would be so much better. I haven’t spoken to a doctor for over 2 years as you have all been so knowledgeable and reassuring. Many thanks.
Should I increase Pred?: Hallo everyone. Will try... - PMRGCAuk
Should I increase Pred?
You are NEVER reducing relentlessly to zero - you are looking for the lowest effective dose at any given time. To have got to 4mg in about a year is excellent - the median time to get to 5mg is just under 18 months. I'd suggest taking a bit of a holiday at the dose you are comfortable at nw. If 3mg was OK - stick, maybe have a few days at 5mg to clear things out but you can go back to 3mg quickly if you can. Prof Dasgupta told us last summer that he often keeps patients on 2 to 3mg longer term as that reduces the chances of relapse. Another very good rheumy likes to keep patients on 5mg for up to 9 months (maybe less) as it allows the body to catch up with adrenal function and seems to make the onward journey easier. There is no desperate hurry - PMR came when it wanted to, it will go when it wants to and nothing you can do will hurry that up. When it is gone and your adrenal function is ready - you will get off pred.
Thanks so much for reply PMRpro your advice to others over the last two years has been so reassuring. Because it’s actually taken me over 2 years to get to 4mg. I wasn’t sure which direction to go in.
You will get lower, just not quite yet - so keep trying 1/2mg at a time very very slowly - if it doesn't work, don't worry. Stop and stay where you are for a month or two and try again. Eventually it will work - at this low dose you can take your time so you feel well while doing it and if you try forcing things you just end up taking more pred in the end because you flare up and need to get that under control again.
Once again.....you are so reassuring...many thanks!!
I am on the lower doses. I find if I go up to 5mg, see if that works and stay on it for a week or so, then drop down to 1mg or so above where I was when I had problems and see if that is OK. Then stay on that for a while until I am sure I am OK. Then start reducing again.
Definitely food for thought piglette...I was thinking of going to 5 mg initially but just wanted to know if that would be OK. Thanks for your advice.
It is so frustrating when you start getting PMR pain after a small reduction, but it is never worth trying to stick it out, PMR always wins in the end!!
So glad you said that....I feel I know which direction to go now.
Best of luck Tapestry. Just remember the lower you go, the slower you go. 🌻
Thanks Meggsy.....it’s definitely now a case of dead slow and hopefully eventually stop!!
Yes! I had weeks of trouble & some new symptoms at 3mg...I stuck it out for 3 weeks, then consulted my doctor, who said to go back to 5mg (where my body was last happier) & stay there for a month, or even two, then reduce more slowly. It’s taken a couple of weeks to see the benefits, but it’s definitely better. I was too determined to ‘ off the pred’ after 18 months...now 20 months after diagnosis. My body just isn’t ready & the doctor said inflammation was showing in my blood test results. I was disappointed, but it’s life! He said he keeps some of his patients at five for years, if necessary (nit me, I hope, but need to get more realistic)! I overdo the exercise, life, I’m too busy, I don’t pace myself & don’t rest enough, so some of it is my fault!!
Sounds as if you have a sensible doctor Pixix..... thank you for your advice.
Well from someone who was also diagnosed around the same time as yourself, I think you have achieved great things in your reduction and shouldn’t worry now or give yourself such a hard time.I’ve only managed to get down to a 8/9 reduction with one flare up during this time & its a case of learning each day what I’m able to do
As you say, this site is the best for reassurance, knowledge and guidance, so take comfort in what your fellow survivors are telling you
Keep smiling thru it ……..
Your last paragraph is SO true!! I feel now that I’m ‘not stuck in the mud and going nowhere. The help that you get from people on this site is invaluable. Good luck on your PMR journey.
I am just like you. Im now on 7.5mg but I've gotten back some aches and pains. Was so good at 8mg. Was going to go back up to 8mg for a few days, then back to 7.5mg and DSNS from there. So Im now very interested in the advice you get here and how you will fare out. Is there any end to it?? Best of luck ❤
Was in two minds whether to post here or not but I am SO glad I did as the help and advice I’ve received has been so helpful. Hopefully that advice will help you Ikreedon. Good luck.
Thanks Tapestry 1057. Feeling rotten today so back up to 8mg where I will stay fro at least 5 days and if improved then, I will drop back v sliwly to 7.5mg. Id be list without this forum too as Im pretty much managing my condition on my own, like a lot of people here!
All the best, have a nice day 😊
We’re on such a roller coaster ride aren’t we.....physically and mentally!! Keep telling myself it’s mind over matter but some days that doesn’t work!! Hope you have a better day tomorrow.
Agree completely! We just gotta keep going. Fhfnever I tell someone Im doing ok, within a day or two I end up in pain ... annoying. Thank you and mind yourself. All the best Lucia
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