hi, I’m feeling depressed today . I was diagnosed with PMR in July 2023 ,Been on prednisone since then . When I started to taper and I feel really terrible. I’m currently on 12.5 and reducing by half a milligram weekly. I’m also on methotrexate 25 mga weekly . Also had a Dexscan and have osteoporosis in my lumbar spine. Of course the rheumy wants me off prednisone.
I had a recent cortisol level which was low so I’m off to an endo now.
Problem is I did a bit of washing and folding clothes when babysitting my grandsons for the night. I felt really shattered when finished and had pain everywhere and shortness of breath . Next morning felt so terrible would have been in bed I think but I up and took an extra 10mgs of prednisone.
I’m sad because I felt alive again , no pain or shortness of breath and I know I can’t stay on that dose .
I felt like me again , it is such a rotten disease .
Hope the Endocrinologist will help with my adrenal insufficiency 😢
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Elvied
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If you are on 12.5mg your adrenal function is likely to be rock bottom. Not because there is something wrong but because there is an expected suppression of the adrenal axis by the Pred. Normally the adrenal glands need to start to switch back on around 7mg. However, even then the dose can still be high enough to suppress cortisol so any test could still poor function. I really don’t now why they are bothering at this stage.
Reducing at 0.5mg per week would put me in a permanent state of withdrawal. By this I mean the body that has got used to a certain level of Pred is upset by the sudden lack. You can feel tired, achey and off. Weekly reductions give you no time to stabilise. You need time for you body to take stock because just because you are on Metho’ it doesn’t mean you are flare-proof and has it’s own side-effects. Just because the doc wants you off Pred doesn’t mean you can tolerate the drop. I think an extra 10mg is overkill. Try rest first and then perhaps 5mg or less.
My heart goes out to you for the disappointment of getting such payback for feeling alive and useful for a brief time. I do understand that sadness as you creep back into the shadows. For now you can’t reduce at speed and do these things as well. Also, you are dealing with another powerful drug which can also knock you back. Your PMR activity could still be very much present even if the inflammation is being dealt with. It won’t always be like this but currently there’s an absolute symphony of changes and challenges going on internally. If you hear, “but you look so well!” Don’t take that as you should do better than you are.
No wonder you feel depressed. The Rheumatologist has done that thing that bad doctors do ie frightened the life out of you about the dangers of Prednisalone, then somehow make it all your fault. Not the disease, not the doctor, not medical science but all your fault. A lot of depression stems from powerlessness and he has put you in that place between the devil and the deep blue sea ie powerlessness. Prednisalone is the only drug we have to effectively combat the damaging inflammation of PMR/GCA. It doesn’t cure it, but it makes life liveable. I guarantee that your doctor‘s attitude would change pretty quickly if they had experienced that pain and disability themselves. Methotrexate ( with pretty alarming side effects itself) is only an effective steroid sparer for some people, it also takes at least 6 weeks to start working.
What was your start dose of Prednisalone? It doesn’t sound like it was high enough. The range can be 30 mgs down to 15 mgs, with most people finding relief at about 20 mgs. I needed 6 weeks before I felt able to begin tapering, never more that 10% of my dose, often less and I used the dead slow method outline in FAQs accessed on this page. Has the doctor prescribed Calcium and vit D? They should. Do a separate post if you want to talk to people about Alendronic Acid or similar ( serious bone medication).
You need to get the management of these conditions right, they can last for years and you want your quality of life to be the best it can be. You shouldn’t be tapering in your present state. You need to find a dose that controls your symptoms and to stay on it until everything settles. It seems to me that you have found that dose. Or at least you are nearer where you are meant to be. Stay on it for a week or two then creep down by half a mg at a time using a tapering method outlined in FAQs paying great attention to your symptoms. This way you will find the lowest possible dose that gives you relief.
Consider 2 things, is this Rheumatologist adding any value to your experience? Is Methotrexate helping you to reduce Prednisalone more easily? If this answer is no, seek to change your doctor. If you have PMR and a good GP, they can manage it or help you with another Rheumatologist- people on here might be able to recommend one.
Do not persist with Methotrexate if it is not helping you. Seek medical advice. Only a lucky few are helped by it. Did you mean diagnosis in July 2023? I assumed that you did.
Stick with us, there is a lot of knowledge and experience on here and friendly people who are keen to share it. It has been invaluable to me for the last 8 years, initially with PMR and then with GCA/ LVV.
Before I say ANYTHING else - I suggest you seek another rheumatologist as a matter of priority. I'd go so far as to say they need some retraining.
I base that on the "I had a recent cortisol level which was low so I’m off to an endo now." comment. OF COURSE your cortisol is low, you are on a dose of pred that is well above the level that will suppress adrenal production of cortisol. The physiolgical level is usually said to be equivalent to about 7-8mg pred. The body knows there is that much corticosteroid present and that more than that is what causes trouble of the sort we call side effects and it doesn't produce any cortisol. Think of it as like having a central heating boiler and a woodburning stove in the room the thermostat is. When the stove is lit and pumping out heat, the thermostat controls the boiler producing more heat as it isn't needed.
I'm appalled the doctor who ordered the cortisol level isn't aware of that, whoever they were. They won't get a reliable figure for cortisol until you are at under 5mg and possibly even then. What a waste of resources - especially the referral to an endocrinologist. They can do nothing at this stage.
The evidence of the rest of the tale suggests to me one of two things. I doubt that the 15mg pred you started on was enough to get the inflammation under control. Until that is achieved and all the accumulated inflammation is cleared out, it is next to impossible to taper the dose and as soon as you reduce, all the symptoms are back. The second option is that this isn't PMR but that I think is a very minor runner in the question here.
Many rheumies seem to think that MTX is a wonder-drug. Well it might be for RA patients (and even that is debatable) but it only works well for a very small cohort of PMR patients, For the rest it either doesn't work at all or only achieves a small reduction in dose or it makes them feel so rubbish they can't tolerate it and give up. You sound like a mix of it doesn't work and it makes you feel ill. The fact 22,5mg pred made you feel so good underlines that.
Did you go straight on to 25mg MTX? That is actually a pretty high dose for rheumatology and it isn't uncommon for patients to feel rubbish on it when they are put on a high dose straight off. Some do better when they start at a low dose and build up slowly. But the bottom line is, it probably ISN'T the drug for you.
I don't know enough about the Aus system to advise how. But you need another doctor. You needed more pred to start before being asked to taper. The starting dose recommended in the 2015 Guidelines is "The lowest effective dose in the range 12,5 to 25mg). 15mg is at the low end. The MTX is probably doing nothing and you would feel a lot less fatigued without it and maybe 20mg pred would have you feeling human. That is where to start,
My ankles started aching so decided I had RA .but no swelling or heat in ankles. I think it is a red herring but that’s why she started MXT and I did gradually increase . I felt it helped but still can’t get off prednisone feel terrific on 20 mgs .my CRP is down but symptoms bad
Nothing to add to others… and yes you will feel terrific on 20mg… but that’s a Pred induced high, and obviously not sustainable - but you do need to be on a high enough dose to control your PMR…
.. and it’s not so much the disease being rotten as those who are treating you. 😊 .. that you can do something about - might not be that easy, but certainly necessary.
My ankles ached with PMR so it really isn't a confirmation of RA, especially since it was totally untypical of RA joint pain. Usually they look for it in more than one joint and heat and swelling as well. You are only 8 months in and have been very poorly managed by someone who is making stabs in the dark if you ask me. Use MTX if you must - but it obviously isn't doing much, you would expect several months of pred to have helped some anyway. One study found 75% of patients responded well to 12.5mg in a month. YOu needed more than that but it will have helped a bit.
All the MTX in the world isn't going to get you off pred in 6 months even if they had done about more sensibly - it takes at least a year for a difference to be noted. You haven't failed so don't look at it the way you are at present, "I still can't get off pred". The chances of that in this time scale, even if MTX is working for you, are very small.
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I agree with you. I am only on pred. Methotrexate and hydroxychloroquine did not help, but caused pain in my right side. One concern I have is my heart. I read that MPR can impact the sinus node in our hearts. Anyone else had any palpitations or afib after having PMR?
PMR and a/fib started at about the same time for me - and when it was eventually diagnosed several years later the cardiologist agreed with me when I asked if it was linked. He is confident the underlying autoimmune part of PMR caused damage to the sinus node. It does happen but not to everyone by any means. Pred can also have palpitations as an adverse effect but mne had started long before I was put on pred.
If you want replies from others you will need to post as a new thread - few will see it here because of the way HU works.
Not that much really. PMR doesn't cause GCA, it can be a precursor to it, a symptom.
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hi, has it been explained that PMR lasts for an average time of 5.9 years, so some for longer some for less. It goes into remission when it is ready and rushing to zero doesn’t work I am afraid. Have you been given any medication to help with your osteoporosis?
Good luck to you and I hope you can get a new doctor
So sorry you are feeling so miserable. Patience is the order of the day ... it is hard. Get a new doc and get these meds straightened out .. and if necessary refer them to the recent post of PMRs with excellent info re PMR. I intend to give to my Doc who is a Prince already.. then breathe and read all you can on here. It will help. I am at 6.5 years but feel good and tapered to 2 ..with flares along the way. Here is a link to my Yoga- relaxations... made for a school I worked at. do whatever you can. . hope it will help. All the advice I have read given you so far on your post is valuable. Good luck!!! sending big energy your way. sites.google.com/a/apps.hop...
Hi Elvied. I sympathise with you. This is a very confusing condition not helped by the medics who offer such different treatments!! I have had PMR for nearly 3 years and pred worked well. I was on 7 mg last year when my rheum added methotrexate at 15mg per week. She also wanted me to take bisphonates as I have osteoporosis in my spine but I have refused those. The metho knocked me for six - I was so tired for three days after taking it I could hardly function. I then picked up a nasty cough so phoned the rheum advice nurse. She increased the folic acid I take from 5 to 15 mg a week which has helped and paused the metho until the cough cleared. I've just restarted the metho. None of the medics I've seen have suggested taking Ca or vit D - I've done that from info on this site, adding in K2 and Mg also suggested on here. I pace myself with the gardening, walking and tennis to try not to overdo it, frustrating but I'm learning it doesn't pay as I'm wiped out the following day if I do too much. At (almost) 75, I suppose I'd have to slow down a bit but I don't have to like it 😅. Very best of luck to you with your PMR journey
I empathise. Been reducing also by .5 weekly but arthritis is an issue. Made it down to 2.5 but was in such trouble skiing with my grandchildren that I upped it to 5 with immediate relief. Back down to 4 currently. Tricky balancing act between determination to kick Prednisolone versus quality of life. Good luck.
Sorry I'm a little late to the discussion but wanted to add my experience. I got my PMR diagnosis mid 2020 and was blessed to find this group during one of my many attempts to research and learn about this condition. I was lucky to have a GP who let me set my pace at tapering after my Rheumy. pushed to get me off of Pred. quickly. I did flare once trying to get below 8mg of Pred. and decided I didn't want to go there again so slowed down my tapering. I have been successful at getting down to 2mg by going veeeerrrrrry slooooowwwly. I drop .5mg one day the first week, then .5mg 2 days the second week like Mon. and Thurs., then 3 days the third week and sometimes a fourth week too, etc. Then I stay on the new dose for a few weeks just to make sure before dropping another .5mg the same way. If I have any stress in my life, or projects that have to get done then I delay tapering till things calm down. I haven't had another flare and it appears my adrenals are finally coming back onboard. Like others have said, don't be in a hurry, it isn't a race to zero Pred. but to the dose that keeps your PMR under control.
I would just like to add that if you are concerned about the effect of pred on your bones there are things you can do which can help. Have a look at my story, there are some ideas there. Please feel free to ask any questions you may have. I'm also adding a link to a site about "secondary causes of osteoporosis" as pred is not necessarily the cause, or the only cause.
Dear Elvied, Yes, it is difficult--- it is true--- and depressing sometimes
just wanted to share with you that there is light as you make progress a day at a time---I was diagnosed in 2019--- and with the support and wisdom and hope shared in this forum and that of my doctors--- I get hope here that little by little my body is healing and more and more I am listening to it---
before tapering I check my ESR and CRP levels--- and I taper 1/2 mg every 4 to 6 weeks, at 12 mg I tapered by 1 or 2 every four to six weeks when the withdrawal symptoms have settled and depending on my blood levels. According to the advice from this forum, I now take my prednisone at 2 am ( after 12 midnight) making this change made a big difference on how I feel during the day.
At 12mg, I finally made peace with the fact that my adrenals were "asleep" and my inflammation was controlled by the prednisone --- as I slowly have been able to taper to 4 mg. I realize that my adrenals are still waking up and not always very efficient--- which means to me that I have to be careful not to overdo--- which I am so used to do--- but not for now---
Just know, the people in this forum are rooting for you and your continued healing!
Of course the cortisol is low - above 10mg pred the adrenal function is almost entirely suppressed. Most endocrinologists will not approve wasting money and time on a synacthen stimulation test until the patient is on a pred dose under 5mg. Think your rheumy needs a physiology refresher - if he ever knew any.
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