Does anyone have advice on the best way to taper down Depo-Medrone injections. Since last February I have been on 120mg starting on once a month, then every 5 weeks, this time it is 6 weeks and I am longing for it. Should I be cutting back quantity rather than time between injections.
I go to my GP not a specialist.
Not very many people use the injections - and to be honest, I suspect the concept may be good but the use not entirely thought through!
The original work by Dasgupta is here as a download and as a pdf:
ncbi.nlm.nih.gov/pmc/articl...
and they say that for the first 12 weeks the patients were given 120mg every 3 weeks. Then 100mg was given at 12 weeks, The injections were then given at monthly intervals with the dose being reduced by 20mg every 12 weeks up to 48 weeks. Thereafter the dose was reduced by 20mg every 16 weeks.
Logic also says the dose whould be reduced and not the time between extended - the depot injection will release at the same rate, leaving you without pred for the end of the interim period.
Thank you, yes I see the sense in this. will talk to Gp about it.
very many thanks
PMRPro that link doesn't work, please do you have an alternative?
ncbi.nlm.nih.gov/pmc/articl...
sorry - didn't realise the pdf link was timed.
Thanks, I've just skimmed through it. It mentions an injection every 3-4 weeks so how on earth my rheumatologist thought one injection was enough every 3-6 months beggars belief! I had the last one about 6 weeks ago and this week I've been feeling absolutely dreadful again, so I think it's worn off. Next appointment isn't until January. GP can't intervene as says I'm under rheumatology so stuck what to do next. Do you think I should I write to my rheumatologist saying the state I'm in, enclosing the guidelines and asking for more frequent injections?
I would certainly make contact suggesting more injections. I started with 4 weeks for 3 months, then 3 on 5 weeks now trying now on 6 weeks but it is painful.
I'd certainly provide him with the original work - the Guidelines just mention using the injections but there are no details about how.
It suggests to me that any doctor who tries to taper by extending the time between injections simply doesn;t understand how they work. Maybe at first but once you establish when the symptoms return, which will vary from patient ot patient, then you should be reducing the dose and sticking to the timetable.
Dear PMR PRO,
is it possible to have a print out or PDF of a thread of a particular chat?
if so, how do I access that?
Only as print screen or copying and pasting the text into Word as far as I know.
Yes just select all and cut and paste. If you save this post you will always find it.
Great info from Pro as usual.
If you look at your post page now , you will see a number of posts about these injections under the title , ' Related Posts' in the right hand side bar .
It might help you find more people to talk to and more information on people's experiences and doses by reading these old posts.
You could contact some of the old users by Private Message or ask a question on their original posts too , if you want to get specific things answered.
Good luck
Thank you I will look at other posts.
Following but don't have an answer. I'm on depo-medrone, had 2 now, 3 months apart and they work very well but run out just over 2 months. My rheumy won't let me have them more frequently which I think is wrong, so will go armed with all the info from PMRPro at my next appointment in January. As the overall dose is less than it would be if I was on oral Pred I can't see why I shouldn't have them every 8-10 weeks.
I wonder how much depo-madrone you are getting for each injection. I went for injections as I had seen the side effects of Pred both on friends and our dog.
I asked the rheumy and nure that question and nobody knows! I know it's a 120mg dose but what that works out to as daily equivalent nobody knows. One rheumy said it's less than 2, one said it's about 5.
This guy
healthunlocked.com/user/adm...
was on injections and did a lot of graphs and calculations to find how the dose varied over time. He reported that here
healthunlocked.com/pmrgcauk...
I'm fairly sure the figures are accurate - he seemed a bit of a nerd when it came to this!
It will not be accurate to work it out for the entire period between injections as the injection will release over a finite time. You have to work if out from the period for which it is effective. Medics are rarely good at science ...
Thank you, I've tried to read it a few times but it's all too technical and detailed for me.
There is one paragraph in that first thread:
"We also determined the daily doses (from day one to seven) would be approximately: 20mg, 15.3mg, 13.7mg, 10.3mg, 8.4mg, 6.4mg, and 5.9mg."
So having had an injection, on the first day it was the equivalent of 20mg that was released, each day after was less. once it got below 6mg, symptoms returned but there was still a little bit of steroid being released when the next dose was administered - the baseline always rose a bit.
I think you could happily show your doctor that post - if he doesn't understand it, you need a new doc!!!
No wonder I feel so well when I first have an injection, though it does take a couple of days to kick in! I find it hard to believe the tail-off is that rapid as I've felt well for about 4 weeks, and the first time it lasted longer than that. Is that why with the injections you don't have the problem of the adrenals switching off as the dose is only high for the first week?
I think so yes. Those figures may be for a different dose to you but the concept is the same. If the depot injection clears out all the accumulated inflammation, it will take some time for the inflammation to build up again.
Did I read on here about people taking a large weekly dose of oral pred in a similar way?
Never heard that - but it doesn't seem to work going by people whose symptoms return in a couple of days.
I will have a poke about my files. But I think the value of it wasn't good.
I thought that as I read it, and if any research has been done. I've read all the guidelines now and wondered how they came up wth them and whether any alternatives have ever been compared. The aim has always been to get people to as low a dose of Pred as possible as quickly has possible because of the potentially damaging side effects. But relapse rates are very high on the standard regime, and the average time to have PMR is I think 5.9 years with the current guidelines, so maybe there is a better way? For example 5 is a stumbling block so maybe leaving people there for longer rather than trying to get them down to 4 within a month. Or longer at a dose of say 10 to mop up the inflammation? If rheumatologists know the disease lasts at least 2 years, why rush to an ineffective dose after about 8 months when the inflammation is still rampant? It's bound to come back and bite you again, I think I remember a dragon or scorpion tail analagy in Kate's book.
It is not a very rational approach is it! I think my rheumy will be glad if I get to 5mg and will leave me there periodical testing lower. I know I have read the big oral dose thing somewhere.
I'd be willing to try it. I was even pondering whether 15, 12.5, 10, 7.5, 5, 2.5, 1 on a 7-day weekly cycle would work! If there are any rheumatolgists out there want a guinea pig let me know!
It has set my mind whirring. 😳
It isn't quite the same because the injections are 100% bioavailability and all the dose gets into the system, oral doses don't and it can be anything from 90% down to only 50%.
I suspect they don't think laterally - and tend to see each patient in isolation whereas on the forums we see detailed stories from dozens, even hundreds, with stories that have commonalities that I remember - I have a memory like an elephant! Unfortunately I don't have time to keep detailed records of the sort you need for research! But there are doctors who listen to me when I say "I wonder if ..."
I wonder what the HPA response would be with the cycle Tangocharlie set out IF it managed PMR. If you were asking for some adrenal action every cycle I wonder if shut down would happen or is it just the long term pred regardless of cycling format that the body response to. I had coffee this morning so brain whizzing. 🤣🤣🤣
True, with what I've learned from this forum and my work on the Helpline, I bet I know more people with PMR and the problems they have than the average rheumatologist does, certainly more than the average GP does! I'm so glad you get to influence and dare I say educate the rheumatologists, you've helped so many of us over the years.
And we have a better grip on what works to manage things ...
My last depo medrol injection wore off about 10 days ago and ever since I've felt increasingly tired and unwell, and it got really bad on Saturday. EXTREME overwhelming fatigue, the feeling of 'impending doom' like I'm going to black out or die, dizziness and nausea, can't get warm. I think I recognise these as adrenal fatigue symptoms (I had it 3 years ago when I came off Pred). I think it's possible the injections have affected my adrenals even though I've read it shouldn't. Reading the EULAR guidelines and the original Dasgupta 2009 paper I should have injections every 4 weeks so why on earth my rheumy said every 3 months is beyond me, it'll just result in a yo yo of steroids. I took 5 Pred on Saturday and again yesterday and feel a bit better. I'm staggering off to my GP later today to try and get the next injection brought forward.
They sound adrenal to me yes - if you feel REALLY ill don't hesitate to call 999 and explain.
Thanks so much for the concern and advice. I took 10 more Pred this morning and am feeling a bit better. Went to my GP and she said to go to A&E now if I wanted to and definitely to do so or ring 999 if things get worse and said it would be a faster route to endocrinology than a referral. BP, pulse etc all fine and no abdominal pain or vomiting so am not panicking, will see how I feel tomorrow. I wonder if what triggered it bad on Saturday was going from the freezing cold into a warm shop. I'm guessing if your adrenals aren't working properly any shock to the system like that is harder for your body to cope with? I thought it was just 'normal' fatigue at first but looking back it's far worse than normal.
They'll possibly say they are risky for joints/cartilage - that is for intraarticular shots (into the joint). Deep i.m. are the same as oral pred but you need less total pred because it is 100% available unlike oral which isn't all absorbed.
Tango Charlie, you sound like a twin. I started my PMR journey with a private London rheumotologist who gave me a 120mg injection of D-M last September. I was not told how often I would be given these. I had many unpleasant experiences on this dose, and so I did not return until I couldn’t bear the pain, until January 8 this year. At this appt he administered an injection of 80mg and that took away all symptoms with no side effects. By this time I realized I could not continue paying such high costs for this treatment and managed to find a NHS Rheumy who agreed to continue the injections but the appointment to have the next injection in March was cancelled due to COVID-19. Ive not heard from the rheumatologist or her secretary since despite putting out a request. My GP will do nothing until we hear from her. By now I’m desperate as my body is seizing up with stiffness and pain. I don’t want to use Preds orally. The injection method bypasses the digestive system at least so far in my case. Preds orally delivered go straight to the digestive system. But finding trained people to give the injections is a big barrier. What has your experience been?
GPs can also adminster a depot injection - possibly even the practice nurse.
Hi, I love Dep-medrone injections, they have worked fantastically for me and none of the side effects of oral Pred like weight gain and insomnia. My only problem is I've had to educate my rheumatologist about them. At first he wouldn't give me them often enough, erroneously saying I could only have them every 6 months. With thanks to info from PMRPro I showed him various papers by Dr Dasgupta et al and in Dec last year he agreed to try a regime as set out in that paper, ie monthly injections starting at 120 mg per month, reducing every 3 months by 20. They have, as I said, been amazing and have brought symptoms under control and reduced inflammation levels, CRP down from a persistant 25 ish to 9! I really thought I'd gone into remission at last. And I have so much energy and all the stiffness and swelling in feet, legs and ankles had gone as well as the hip and groin pain, it really was miraculous. Unfortunately due to CV19 I haven't been able to see my rheumy who I normally see every month. I did manage after a few phone calls to the hospital and the rheum's secretary to get my last injection 2 weeks ago, this was the first at the reduced dose of 100mg which the rheumy nurse told me is the equivalent of about 4 Pred. It hasn't worked very well at all, all the stiffness and swelling is back and I'm back to hobbling and terrible fatigue has returned. I'd like to go back up to 120 as it was working so well but I suspect I'll have to battle for it as rheumies always want you to reduce. I'll keep you posted. If you can't get a response from your rheumy pester your GP to get the injection. They can't just leave you untreated.
I will, Tango Charlie.
I’ll get back to you once I speak with the rheumatologist, then my GP tomorrow and this week. I’m interested in the relationship with the adrenals, too.
My understanding is that the injections don't affect the adrenals which is another bonus.
That is relieving to hear - but, are preds by mouth implicated in adrenal issues?
The rheumatologist was too taken up by NHS hospital work to call me as arranged by her secretary this morning. It looks like more waiting and being patient.
Yes, over a certain amount/time your adreanals shut down because the Pred provides enough cortisol. They should start to work again once you get down to a low dose, somewhere around the 5 mark, but many people have problems and sluggish adrenals and for some they never start up again. If you want to know more best to search old posts for 'adrenals' or 'synacthen test'. I'm waiting for my rheumy to get back to me too, I'm sure they have a lot of patients to deal with as rheumatology clinics have mainly been cancelled. I could really do with a phone appointment in lieu of the monthly face to face ones I usually have.
But surely that happens with depo too? It's still a sytemic drug ? A few things I have read says it acts exactly the same as other glucocorticoids. Even on Wikipedia says...(sorry don't usually like quoting wiki but other more research based papers mentioned it too.)
"Long-term use of methylprednisolone, as with all corticosteroids, can be associated with hyperglycemia, decreased resistance to infection, swelling of face, weight gain, congestive cardiac insufficiency, fluid and sodium retention, edema, hypertension, increased eye pressure, glaucoma, osteoporosis, and psychosis, especially when used at high doses.[13][14] The most serious side effect occurs after the adrenal glands cease natural production of cortisol, which methylprednisolone will replace...."
But I am not that worried at this stage (7mg) and will ensure I dsns to slowly poke the adrenal beast into action.
Is that referring to the methylprednisolone injections or the oral tablets?
The injections that I read about. This is one of the general discussions, but there were a few different "proper" papers that came up when I googled i.m. depo medrol and adrenal suppression/function even in injected in different places for different functions...
netdoctor.co.uk/medicines/a...
pubmed.ncbi.nlm.nih.gov/631...
Thankyou, these are useful articles. It does seem odd that there are no long term studies, and these articles seem to contradict the Dasgupta paper. I felt like I was having adrenal problems when I had to wait 3 months between injections towards the end of last year, but my concerns were dismissed.
Long term studies cost money - a commodity in short supply in the field. It isn't sexy enough - no cuddly babies involved ...
True, but you'd think the drug companies might have pushed for one if they could sell the vaccines for more, or is it one of those where the patent has run out and anyone can make it? Also I would have thought rheumatologists might be more interested if it vastly reduces the cumulative steroid dose? Instead they push MTX for refractory patients.
Tocilizumab is the new baby - so the company wants to get it spread about. Everything else is ancient, the only plus would be increased sales.
Yes I wondered if TCZ might one day be used for PMR, but not until the price plummets.
Which it won't if it turns out to work for Covid-19! There are rheumies in the US who use it
It may be relieving to hear - but it isn't correct. Repeated depotmedrone injections given over a long period also can lead to suppression of adrenal function.
It isn't a real problem to worry about - the adrenal glands produce cortisol in the same sort of way your central heating boiler works. It requires a lack of heat to trigger the thermostat to switch it on, the adrenals react to a lack of cortisol to know that they need to produce cortisol (rather more complex though as it involves several steps). If there is corticosteroid present, it won't produce more just like your heating boiler stops when the thermostat isn't triggered.
Cortisol is the natural version of a corticosteroid and is essential to life but the body doesn't care if it is natural or synthetic: if there is enough present at midnight, the adrenals say fine, don't need to get up early and work tomorrow to make cortisol. In the first days of a depot injection the steroid level in the blood remains steadily relatively high but slowly falling off over the following weeks. It isn't 80 or 120mg delivered all at one go, it is that much delivered over an extended period, leaking it into the system slowly. It's like the difference between a balloon that is blown up and popped with a pin that deflates in a split second and one that is left lying in a corner and deflates slowly as the rubber lets the air out. So for those days the adrenal function is suppressed. It may stir slightly towards the end of the injection when the level is lower but if I remember Admiral06's posts, it rarely falls below about 4mg before the next injection is due. If it did, the PMR symptoms would probably resurface.
If that is repeated time after time, there will be an effect on the adrenal function. Maybe not as blanket an effect as taking a pred dose of 10-15mg every day over months - but eventually it will be there. The main reason that side effects are claimed to be lower is that you do usually need less steroid overall. The injections may avoid any GI effects but not everyone suffers them anyway. Weight gain can be managed even with oral pred - and so can most other adverse effects when you know how. But I have only every had oral pred - I would say that in general I have no identifiable adverse effects. I did for a time with oral methyl prednisolone but never with prednisolone or prednisone.
Thankyou for that. I tried to research it but there isn't much information out there. My understanding, I think from reading Admiral06's very detailed posts, but I may have got it wrong, was that the injections deliver an initially high dose for about 5 days which doesn't last long enough to switch the adrenals off (like how you can take Pred for just a few weeks and then stop), and that the effect wears off rapidly, a bit like a half-life, so that by the end of the month you are getting a very low daily dose of about the equivalent of 1mg Pred. Which is pretty much as you described with the analogy of the slowly deflating baloon. Your key point is that done repeatedly there will be a more serious effect on the adrenals. I only read in the Dasgupta paper 'The treatment was efficacious, safe, well tolerated over one year, and showed no suppression of the hypothalamic pituitary adrenal axis at 12 weeks after initiation of treatment'. The crucial bit there is 'at 12 weeks' it doesn't actually say long-term. The paper said they intended to do more studies - do you know if this ever happened?
My PMR symptoms do start to resurface if I go over about 5 weeks between injections. I was on and off oral Pred for about 5 years with terrible side-effects, hunger, weight gain, Cushingoid, insomnia, brain fog etc, and for me the depo medrone injections work MUCH better and I haven't had any of those side-effects. Maybe it's absorbed better by my body or something. With the injections my legs get back to normal whereas they never really did on Pred. I just feel great on them, and they seemed to be working, CRP was down to 9. I really wouldn't want to go back to Pred and hope I don't have to if I continue to get good results I may actually, finally, go into remission!
PS for those following this thread in years to come the original article by Dr Dasgupta can be found here ncbi.nlm.nih.gov/pmc/articl...
I don't know of follow-up work - if there were there might more enthusiasm for using them. I assume Prof Mackie doesn't know of any, we have discussed the concept.
My g'daughter had adrenal suppression after repeated tapers of pred for asthma. Poopadoopy has a link about them - and it says they do cause adrenal suppression. It is immaterial really - they are really good and useful for patients who have absorption problems with oral pred. Which may be the case for you.
I know my rheumy, Dr Dass, discussed the idea with Dr Mackie and Dr Pease but I'm pretty sure I'm their first case and we're allfeeling our way here. It's a shame it's not more well known as an option as it's potentially very promising. To get CRP down from 25 to 9 in 12 weeks is amazing, it was never that low when on pred for 5 years.
I received a Depo Medrol (U.S.) injection from my new rheumatologist back in the middle of August. Not sure how many milligrams. What a life saver! I've been virtually pain free and have had a lot more energy. The stiffness in hips and shoulders is just starting to creep back in. Are you still taking oral pred? I'm hoping that by getting the shot every now and again, I can ween off the 2 or 3 mg I take to maintain. I thought about asking him if he could reduce the amount, but get it more often. I'm not sure which is more detrimental to your system, the pred or the D.M. If I don't get another shot at my upcoming appt, might have to up the pred.
The injections are a huge help, aren't they?!
I am only on DM, unfortunate as now, a week before injection I ache all over. I shall try to get more frequent, less high dosage.
Once you are below 5mg per day of pred the side effects are minimal. I have to say - at the level you are at, I would have thought the use of the injections would slow the full return of adrenal function which would be starting to wake up at 3mg.
Perhaps you should consider the advice of a rheumatologist. I was told to continue taking the prednisone even after I received the injection, although I was advised to try to reduce the pred afterwards. Maybe get the prescription for something to hold you over until your next shot, at least. Those injections are fairly powerful and when they wear off, you're back to square one. Best of luck to you on your journey.
I will try again for a rheumatologist, but last time I was turned down. will manage the next week, fortunately my husband is around for the next week to do up my bra.
Thanks
Penny
You are very fortunate indeed!
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