i need help understanding what my body will feel as I continue reduction in predinsone. I'm presently at 5.5 mg but physically able to do so much more than just two weeks ago. I can garden for two hours and walk for 45 minutes and the fatigue seems to be lifting.
I was diagnosed two years ago in May, had one flair. My CRP has returned to normal. But I'm two years older so I can't tell age from PRM.
In the recent past, I've been slowly reducing by about one mg/2 mos. Because my body is functioning better does this mean I'm going into remission? What do I need to be aware of, as symptoms as I still want to take care og myself? How long until complete remission? I understand relapse is possible so I want to take it slowly, but how slowly. The prednisone has done it's damage.
I will be interested to read what folk have to say as I am in the same sort of situation.
Am down to 8,75 mg after trying to get down for the last couple of years.
Side effects of prednisolone are slowly disappearing - I hardly dare believe that I am on my way out of the woods.
Like you I feel like doing more - the inclination as well as the energy - I still seem to feel the need to sleep during the day - so I take a nap! Then I also wonder - is it an age thing?
I am just living in hope that this time I get the dose down without a flare - last time I felt this way and mistakenly thought that I was doing better - turned out that it was just the lower dose that was making me feel better - the blood tests showed otherwise!
So I have my fingers tightly crossed - I will cross them for you to.
How old were you when you developed PMR 2 years ago and what makes you think you should not be running a half marathon at your age - does not say because you are older you should expect pmr like pains.
Now you are down to 5.5mg, take it even more slowly 1/2mg at a time.
Talk to your GP about a Synathecan Test to see if those Adrenals of yours have begun to wake up and/or are fully functioning.
Let us hope you actually fit the statistics of 2-3 years.
Hi all; I think we would all like to know the answer....as you may have read before, I am not a sufferer of PMR, but am really interested in this condition, (not sure why...but maybe because I didn't know much re same before joining this site, and started hitting my Inquisitive mind...like to learn????) will keep looking for what answers come up.....Bron
morning twigjean.I have in the last few weeks gone solo of the pred,so far so good,I still suffer with the fatigue, that is down animea, which i am having test for.Like you i love gardening plus walking,I would just add slowly does it, i reduced by 1/2 mg, useing the very slow plan adviced on the the forums,I also still read all the post for any good advice,please dont be tempted to rush this last stage. The sun is out so back to my gardening.All the best. Dave.
Barb, good to hear how much better you are feeling, but still don't be tempted to rush your dose reductions because the 5mg point has proved a stumbling block for many in the past. Also don't be in a hurry to overdo things at this stage - PMR still needs respect. Following a severe flare at the 5mg dose, once under control and back at 5 after a hike to 10, I continued in just half mg decrements, tapering slowly over 7 weeks to each new dose and eventually reached zero Pred. I did have the occasional scary day even on the low doses when stiffness and pain would return in my lower back and legs, which saw me asking for repeat blood tests (my bloods had always corresponded with my symptoms) but resting up always resolved it. Importantly, please be aware that even when PMR goes into remission and you are off steroids, it can take a year or so for our bodies to fully recover. Good luck and I hope you continue to do well.
I am eager to see the responses to your post, Barb. and good for you for being aware of the pitfalls. My timeline is similar to yours and I reduced from 10 to 2 at what I thought was a slow pace. I was at 5.5 a year ago and felt marvelous. My daughter got married in July and I weathered the excitement and stress without incident. I didn't reduce again until fall and again incrementally. You are ahead of me in that you had a flare and knew to be wary! I did not. The story of my relapse is elsewhere on the forum but I would say at lower doses, be careful of overdoing, It seems like you can maybe "get away with more" at higher doses. That may not be the right way to say it. Know that I am cheering you on. (I'm back at 10 for 2 days now.) What kinds of damage do you have from Pred and what was your highest dose?
The only way you can tell you are in remission is if you are able to reduce the dose of pred and the pain does not return. A few people have said they woke up one day and felt different - and subsequently were able to reduce to zero and stop pred.
Your CRP/ESR should be normal when you are on a high enough dose of pred - it is no indicator of the being in remission though some doctors will try to tell you that.
How long it takes is an impossible question to answer - how long is a piece of string? It can be anything from a year or so to life-long - and the year or so people are at a higher risk of relapse at some point than others. And relapse may happen in a few months or a few years - or more.
As you reduce the dose of pred you will also be able to do more - I certainly have. But for me 4mg just manages things, 3.5mg doesn't and I feel much better at 5mg. In the context of PMR, half a mg can be a LOT!
To be honest I feel it is a slightly pointless exercise to speculate "Has it gone?" - you will still need to reduce that pred dose very slowly or you will have other problems. As long as you are able to reduce the dose in small steps and steadily you are on to a good thing - the whole idea of the "Dead slow and nearly stop" reduction scheme is to allow exactly that. Below 7mg or so you must be careful to allow your adrenal glands time to get their house in order and functional again - so slow reduction is still the order of the day. That way if your longerterm dose is as low as 3 or 4mg - which often happens - you won't miss it. Plus, there are quite a few people who are great at 1mg, have a rheumy rush them off it because "1mg can't be doing anything" only for the symptoms to return within a few months - and you can't falsify an ESR result either!
My PMR journey started 21/2 years ago and I was fortunate to be diagnosed early. I've been on pred for 26 mths and have had 3 flares. One because my GP had me reduce too quickly and the second because I was impatient. At the time of my third flare I was at 4mg and had been there for a couple of months and felt great. I have also talked about this on other discussions. I really felt that I was winning the battle using the DSAS method and decreasing 1/2 mg at a time. My body thought otherwise and I had the worst flare yet. I am now working at reducing to 9 from 10mg.
I wish you success and hope you continue to feel great but, from my experience, I urge you to go slowly, slowly.
i do do go slowly. When I begin to reduce I go down .25 mg, my body seems to do better than at .5 mg, for a few days to a week. Somehow I do feel differently but I can't explain. It's hard to not want to keep dropping and move on with my life.
i live in the states and have never heard of the Synathescan Test, exactly what is it. I think the adnerals are awake because below 7.5 mg one starts to make one own cortisol. And I don't seem to be having any problems. Around 8 - 7 I did have adnerals pain. Eileen explained the difference.
i sympathize with you all who have flares at these low levels of prednisone. I'll keep it in mind to keep stress low. I don't travel far because it is stressful.( oh for the youthful time of travel and independence).
Someone asked my age at diagnosis, just short of 72.
MyCRP returned to normal last month. It moved down slowly over the last 18 months. I have a monthly standing order at the lab. As I am a diabetic my blood glucose have decided to go wacky. Managing two convictions get complex. Many of you have more than two - my heart goes out to you.
i love the different phases we English speaking people use - what does Belt and Braces mean?
thanks again and let's keep talking as our doses get lower.
Belt and braces .... means you are twice as safe or double insured!!
I am english but live in Denmark - they think I am nuts when I on the odd occasion use an english saying translated in to danish .. things like "it's raining cats and dogs" for example - problem is they then ask why cats and dogs - it isn't always easy to explain where the old sayings come from - gives them a giggle though!
The synacthen test is one where they take a sample of blood at 9am to measure the cortisol level. Then they give you an injection of something that stimulates the adrnal glands to produce cortisol - and they measure the level a bit later to see if it has worked properly.
"Belt and braces" is an expression we use to say you have taken all the precautions you can - you wear a belt to stop your trousers (pants to you) falling down but because you want to be sure you also wear braces (suspenders to you I think)!
Just different names - because in the UK if you say pants you mean underwear and suspenders are what ladies used to hold up their stockings and men sometimes use to hold up socks!