Loss of strength

[JMT_hiker]

Been on pred for a little over 12 months. Tapered quickly from 20 mg to 10 and then slowly to where I'm at now 3mg. Feeling very weak, can't lift hardly anything over my head and almost impossible to get off the ground if I have to get down to do something. Lifting / pulling covers up at night in bed is even extremely difficult. My question: is my dosage too low or is weakness part of my new normal? I need to keep better records, but I believe I felt normal [strength wise] up until I dropped below 5mg/day. I worry that its not the dosage but the duration I've been taking the drug. Do people who are on pred long term get really weak? Or will I feel better if I go back up to 5 or 6 mg.

[SheffieldJane]

hi, before you even said that you had tapered quickly I thought that your dose was too low. The inability to lift your arms up and the generalised muscle weakness are typical early symptoms of PMR. You are still suffering from PMR symptoms and you need more Pred to control the inflammation, which is dangerous and under treating has consequences. I would try going up by 5 mgs and see if that settles it. I would leave it about 4 weeks and then reduce by no more than 10% of your dose. Have a look at FAQs for examples of a good taper. See below your post. Long term Pred can make your muscles weak but you haven’t been on Pred for a long time. This disease lasts on average over 5 years - no matter what some doctors seem to think. Our aim is to get to the lowest dose that relieves the symptoms. We need to go slow and steady to find that dose. Good luck! Most side effects can be mitigated but that needs a separate post.

[JMT_hiker in reply to SheffieldJane]

Thank you so much for your wisdom; I'm so glad to have people like you as a resource. Getting answers from the medical community is like pulling teeth.

[JMT_hiker in reply to SheffieldJane]

I have an endocrinology appointment on the 13th of April. Should i wait until after the endocrin appoint to up my pred dosage?

[SheffieldJane]

Perhaps check with the Endocrinologist . It is early to be seeing one for your Cortisol levels because you are so early in the disease. 2 weeks is a long time to suffer unnecessarily. What is the purpose of the consultation?

[JMT_hiker in reply to SheffieldJane]

I think endocrinologist is wanting to check my adrenal function. I can save them the time and tell them its not working properly. lol

[SheffieldJane in reply to JMT_hiker]

Mine too, I’ve just had one of those annoying email letters that you have to get a code to open. I don’t want to be moved on to 20 mgs of hydrocortisone instead of 5 mgs of Prednisalone because it may stimulate my adrenal system better to produce its own cortisol. I hope I don’t have that battle, he’s clever and very nice, but my Rheumatologist doesn’t always see eye to eye with him.

[Bcol]

Morning as SJ has said that is a remarkable quick taper for what is a long term systemic disease. The Pred doesn't cure the disease only manages it until it decided to go away. I would suggest adding 5mg to your present dose to get things under control again. Stay there for at least four weeks and then start to taper down at 0.5mg every five or six weeks. You need to find the best taper time to suit yourself as we are all different.If you have time there is plenty of information regarding flares, tapering etc in the FAQ'S section to peruse in your own time. Don't forget to keep your doctor informed unless they are happy for you to look after your own dosage.

[JMT_hiker in reply to Bcol]

I wish they would let me adjust my own dosage. I think I could do it more efficiently based on the info from this community.

[HeronNS in reply to JMT_hiker]

When I started pred my doctor told me that eventually I would have a lot to say about how I tapered, or words to that effect. She started me off, with a clear instruction to stop tapering if I felt any return of symptoms. When that happened I found a forum (not this one, found this a few months later) where I learned about slow tapering plans, and started using one of those, with my doctor's blessing. I brought in a copy, showed it to her, asked her what she thought and said I'd like to try it. I would have used it anyway, but she was perfectly fine with my giving it a try, and as it worked that has been my tapering method ever since. (For the possible edification of your doctor you can tell them I started at 15 and by using the slow taper method was able to get to 3 by the end of the first year. Not everyone can achieve quite that, but the chances of getting to a comfortably low dose are certainly improved if the taper is handled correctly! You don't need to add that I was at 1.5 by the end of the second year, and still on a small dose of pred near the end of the eighth! Sufficient unto the day, etc....)

PMR is not like other diseases for which pred is prescribed, and which doctors have more experience with. It doesn't cure our condition but controls the symptoms. Moreover we are all different. Patients with perfectly textbook symptoms may be perceived as "atypical" by a given physician! We each of us need what we, personally, need for our own particular experience of PMR and certainly once we are into the tapering phase we alone can judge how our body reacts to reduced dosage. Certainly the secret for all of us appears to be a slow taper and - this is important - the lower the slower, because each drop becomes a bigger percentage of the total dose, so it may be harder to drop half a mg when in single figure doses than it was to drop by 2.5 from a dose of 20, or even by 1 from 15.

[JMT_hiker in reply to HeronNS]

Thanks for sharing your wisdom; I hope my new Dr is as understanding as yours seems to have been. I hope that once they understand that we are very informed on the disease and the risks associated with it and prednisone, they will allow us to have a large say in our dosage and tapering plans.

[DorsetLady PMRGCAuk volunteer]

Could be too fast a taper, but also could be adrenal insufficiency- have a look at this post-

healthunlocked.com/pmrgcauk...

Would suggest you speak to your endocrinologist asap -and explain your symptoms…..

[JMT_hiker in reply to DorsetLady]

Do you know how low of a dose you need to be on in order for the endocrinologist to get an accurate measure of adrenal function?

[PMRpro Ambassador in reply to JMT_hiker]

Most endocrinologists do not consider the result to be at all reliable until you are at least under 5mg and preferably down to 3mg. Even then, there are people on the forum who had poor results at 3mg and better results at 1.5mg, Really, the only reliable result is once you are off pred altogether.

[JMT_hiker in reply to PMRpro]

I appreciate the help you given me and so many others; thank you

[DorsetLady PMRGCAuk volunteer in reply to JMT_hiker]

PMRpro replied -agree

[JMT_hiker in reply to DorsetLady]

Your help in greatly appreciated; thank you

[123-go]

Please see my post: “Lack of understanding PMR and prescribing Prednisolone”.

I’m sure a lot of this will resonate with you. I’m pleased that you are finding the forum and advice from the experts valuable.

[PMRpro Ambassador]

I think a lot of that is probably your adrenal function lagging behind the speed of your reduction. But it could also be the dose is borderline for controlling the PMR inflammation. As suggested, you could add 5mg and take 8mg for a week to deal with that and then return straight to 5mg where you say you felt OK. Then taper from there MUCH more slowly, 1/2mg at a time and using a slowed taper to give your adrenal glands a chance to wake up without you feeling so weak and feeble.

You aren't heading relentlessly to zero, you are looking for the lowest effective dose that gives you a decent quality of life and you have overshot that a bit. The lower you get, the slower you taper,

[JMT_hiker in reply to PMRpro]

Thank you for the sound advice. I will try to follow it; but it is so difficult to get prescriptions for higher doses. One of the reasons for my quick taper is pressure from my medical providers. They behave as if prednisone is going to kill me .

[DorsetLady PMRGCAuk volunteer in reply to JMT_hiker]

Many do -unfortunately 😳

[PMRpro Ambassador in reply to JMT_hiker]

Instead of which it is a life saver! Having had 5 years of PMR without pred, I can tell you that that doesn't do your mental health any good at all. Having had PMR as long as I have - without pred I'm pretty sure I'd have topped myself. Now what would they say to that I wonder ...

[HeronNS in reply to JMT_hiker]

I think that attitude is a hangover from days when people might indeed have been kept on high dose pred for too long and it caused some debilitating side effects. There are a lot of us in this community who have been on mostly low dose pred for years and enjoying far more benefits than ill effects. Almost any medication can eventually cause some unwanted side effects, but the thing about pred is it's the only one which works consistently to relieve the symptoms of PMR and it's both unkind and unnecessary to deprive a patient who is doing well on pred.