Hi, new here and having a browse through old posts.
Newly diagnosed with polymalgia and have been started on 15mg of pred. The medication label says to reduce to 12.5 after only 3 weeks.
Yet all Im reading on here is horror stories of people being on it for up to 10 years. Why is that? Is it because of other underlying illnesses?
I was fairly fit and active until this hit me, now Im scared stiff Im going to be crippled with this pain for years and not be able to sleep properly, having read about insomnia being one of the side effects.
“Yet all Im reading on here is horror stories of people being on it for up to 10 years. Why is that? Is it because of other underlying illnesses”
Slight exaggeration- PMR lasts between 2-6 years.....and those that have an easy journey probably don’t see the need to be on the forum - more’s the pity because their absence skews the overall picture.
As most members are over 50, then yes some have other illnesses, but maybe no more than the same demographic without PMR. Although autoimmune illnesses do like friends to join the party.
You will not be crippled for life if you take the correct level of medication your illness requires.
You may need longer than 3 weeks on15mg, see how you are - and the drop to 12,5mg may or may not be okay....it’s not a race!,
You may like to have a read of this post...and the replies-
Take a breath. Most of people’s time on Pred is on low doses as a whole, not this level. Of course you get those who buck the trend and do take it for many years but that’s the same for any illness; you’ll get rapid resolution in a few and protracted symptoms in a few. Most of us are in the middle section, as DL says, 2-6 years and I repeat, on lower doses than you are now. The one warning I will give from personal experience, is that you should not expect to take Pred, be pain free and see that as a signal to whip that body back into shape. Pred is not curing this, it’s just holding back the inflammation; you are still attacking your own tissues. Both PMR and Pred affect muscles and ligaments, so it is wise to cut right back to walking or very gentle versions of your usual exercise. By very gentle I mean it seems almost like an insult to your previous fitness. For now just keep moving and wait for the dose to get under 10mg and then you build slowly. Posts turn up regularly where people try to do too much activity and then think they have a flare or pull muscles etc.
So, for now you are in the acute phase with the side effects of insomnia and mood effects and pain from active disease, so you just have to play the long game. Rest, look after yourself and the dose will come down as your body dictates. Contemplating disaster scenarios won’t help but patience will.
Hello and welcome to the forum. I hope you find it as helpful as I have over the years. I think horror story is too strong a term for tapering too steeply or quickly. Experience teaches us that a gradual taper like the dead slow nearly stop one outlined in the pinned posts is more likely to work. It is best not to reduce by more than 10% of your dose at a time. If you are in a lot of pain, it suggests that you may be under treated and might need more than 15 mgs to settle the inflammation. I found that I needed 20 mgs initially, that I stayed on for 6 weeks. I then began to taper, I think by 2 mgs,once a week, then twice, then three times, until I was on 18 mgs all week. If I settled on that dose I would continue with the process by reducing by 1.5mgs over a 4 week period ( using a pill cutter). The aim is to get to the lowest possible dose that controls your symptoms. Coming from a fit base is bound to help.
There are indeed people who have been on treatment for PMR for over 10 years and not always with underlying health conditions, although, in our age groups it is unusual not to have the odd bit of arthritis at least.
I think that is quite rare though, the average time is 5.9 years. Some patients are lucky enough to have the disease go into remission after as little as 2 years. It is perfectly possible to lead a relatively normal, pain free life if you pace your activities and taper Pred. gently.
Insomnia is a problem with steroid medication. I found that 10 mgs of Amitriptyline, taken one hour before sleep helped me in the early days. I also need an after lunch nap these days. The forum is a great resource , populated by friendly, supportive, knowledgeable, people who are glad to answer the many questions you will have.
Based on the content of your comment you have done absolutely the right thing by turning up. I probably more than most have gained a tremendous amount of knowledge and support from the people on here who give their time answering questions and providing advice.My very first comment over a year ago makes me laugh when I read it now,such anger and ignorance. Like you I had the fear that my super active life was over .......... well it is ! for now but it will come back with a better balance at some point but in the meantime I have a meeting with a disease that I need to learn about and learn to live with.
My best advice ? Read as many comments as you possibly can on this forum,they are priceless.
I was told to reduce 2.5mg when first on pred and found it was too big a jump for a delicate little flower like me. Some people have no problem. I have found 1mg over 10mg and 0.5mg under 10mg works better for me. Normally you wait four weeks before reducing each time. My rheumie pushed me to start reducing at three weeks too.
One thing I did learn PMR is life changing and you need to learn to slow down and also to say NO. On the other hand pred is a wonder drug.
Different for everyone I guess- I have had a relatively straightforward journey as started on 15 mg sept 2019 and took my last pred December 2020. Very aware that I could have a relapse but have been helped so much by people on this forum, the Kate Gilbert book, my oestopath, my physiotherapist, my Bowen therapist and dietatican, my rheumatologist, acupuncturist and family and friends. Depending on what appeals to you there is a lot of help out there, best wishes
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tapering after 8 weeks on higher doses of pred.
PMR myth busting #3 - that there's only one set of symptoms and treatment plan
GCA diagnosed 3 weeks ago
TO INCREASE PRED OR NOT? 3 WEEKS IN BED.
Well, here is a thought: Could a weekly dose of the steroid prednisone combat obesity?
