Hi everyone! I saw my rheumatologist yesterday and got a renewal on the 5 mg pred with refill! She's "ok" with the method I want to use to slow taper but it's "not what she normally does." She wants me to be tapered down to 7.5 mg by Sept 15, I'm at 11 mg currently . She's very concerned about being on such a high dose of pred for too long. I was diagnosed in March, 2020 with PMR, is that a long time? I tried to bring up the fact that there are plenty of others, like those with GCA, who are on much higher doses, much longer, but she wasn't going to budge. My intention is not to be on the pred either but I feel she is more concerned about my getting off the pred than controlling the PMR. I think she wasn't happy because I went up to 15 mg for about 4 weeks due to a relapse and she only approved of 10 mg. I didn't call to ask her permission.
She did order blood tests for inflammation markers as well as for the potasium, magnesium, etc. and iron, incase I'm annemic. We'll see what those say before I start to taper, but I finally have her on board for testing first at least. I'm a little concerned about when I get to the lower dose, that she is going to push the other drug(s) on me to help me off of pred. "Ultimately I want you off the steroids." I thought the idea was to get to the lowest dose that doesn't trigger a relapse and stay there for a bit before trying to taper completely off?
Written by
catdance
To view profiles and participate in discussions please or .
"I thought the idea was to get to the lowest dose that doesn't trigger a relapse"
It is - but there are a lot of doctors who believe the claim that PMR only lasts up to 2 years and then it is gone so you don't need pred any more. And that's obviously her belief, you've been on pred for 2 years but you are still at 11mg, she probably thinks you aren't trying hard enough.
Is 2 years a long time? Not according to a lot of us! I;ve had PMR for 18 years now, been on pred for 13 years and a lot of that time at above 10mg. I probably nearly got off it once but had a relapse - a proper return, just as it was at the start. There are others at 10 years and more. There aren't many of us that long but quite a bulk at about 4 or 5 years. Some studies think fewer than 1 in 3 get off pred in 2 years.
I have read a lot of the posts on here about being on pred for a lot longer than I have and sure there are side effects but they don't out weigh the pain or fatigue that you get from relapsing or going without! I understand that part of the issue when I got down to 4 mg probably had to do with the adrenals but this was going on for quite awhile. I was at 4 mg in Nov 2021 through Mar 2022 and I was miserable! I think at that point I had gotten beyond the dose that controlled the inflammation and for far too long.
Almost certainly - you should be at a dose where you feel as well relating to PMR pain and symptoms as you did at the starting dose. As soon as you feel more pain at the end of a taper step than you did at the start - you have probably gone too far.
Just to let you know that I have had PMR for just over 3yrs now. I'm currently on 5mg pred daily but during my first year, tapered right down to 2.5mg from 40mg. I thought I would work towards coming off steroids asap but unfortunately I experienced a massive 'flare'... mainly because I was reducing far too quickly and had no real understanding of my condition! I had to increase back to 15mg and that was at the end of 2019....it's taken me since then to get down to 5mg!
You seem to be rather more clued up than your GP so perhaps it might be useful to show her some of the relevant information in FAQ'S... particularly the bits that talks about duration of the disease.
Thank you for both of you for sharing. PMRpro, 18 years is a long time to be struggling with the issues you have! I read all of your posts that I can because your advice and experience is so important to us "newbies!" Kendrew sounds like we had simular experiences.
The Dr I saw is my rheumy and I did bring a print out of the FAQ Is it a flare or is it a relapse? She didn't read it. Like PMRpro said, a lot of the doctors beleive the 2 yr myth. I even quoted the Mayo Clinic on the "goal is to get to the lowest dose that doesn't trigger a relapse." and she reacted funny and said her ultimate goal is to get me off the steroids.
Haha!..... In an ideal world, isn't that the ultimate goal for all of us with PMR too though!!....which is why our tapers must be slow, steady and well thought out.
Exactly! She's so worried about the side effects of the pred, which I understand, but I am not currently having much. Let's see: Osteoperosis: had osteopenia before I started on the pred and as of last BD test I was down graded back to Osteopenia and improving! Hair falling out; growing back, wild and crazy but growing! Bladder leaks; improving. Cramps; taking supplements & drinking water is improving the situation. I don't really see an issue of staying at the level that controls the inflammation for a while if needed!
I'm very similar. I put 7lbs on in first year until I learnt I needed a low carb diet. Weight now stabilised. Was osteoporotic but now back to osteopoenic. One or two other niggles from time to time but I've done my research, taken the advice here and work hard at preventing any side effects from emerging. That's as much as anyone can do isn't it.
Yes, it is. I forgot, I did gain quite a bit of weight, 26 lbs, even with already being on low carb/keto diet. I've stabilized but I'm also getting out and being able to take walks more. I was not hardly getting out of bed before so I'm certain that had a lot to do with it. I wasn't really eating much for awhile either.
Sorry, I should have explained that my initial DEXA scan after my PMR diagnosis showed I had osteoporosis. I therefore felt I had no other immediate option but to accept the biphosphonates (Alendronic Acid) the specialist prescribed.
This medication has obviously contributed to the overall improvement but I was told it was a very significant improvement and more than one would normally see. So maybe other things also contributed, such as:-- yoga for osteoporosis
- calcium supplements (but only for a while. I stopped them and repeated blood tests showed I was sustaining adequate levels through diet alone)
- calcium rich diet
- Vit.D3 and Vit.K2 supplements
- other bone & muscle strengthening exercises
I researched osteoporosis quite comprehensively and took on board lots of advice from here too. I've worked hard at trying to do all the right things to minimise the impact of the steroids on my bones and to now be back in the osteopenic range is very encouraging.
OTOH - were the 2 scans done on the same machine and by the same person? Even a small change in the direction of the beam and the result can be very different ...
I think you are correct there. My second Dx was carried out by someone different. She didn’t ask me any questions at all. The scan was much shorted than the first too. My results were worse than the first but not so bad
It was done at the same hospital in same scanner room but no idea if it was same radiographer. So I can take from your information that I either was osteoporotic before and probably still am... or I wasn't osteoporotic before and probably didn't need biphosphonates! 🤔 😄
Thanks, still osteopaenia with marginal decline over 2 years. Already d3, k2 & weight bearing . Endocrinologist suggested risedronate until pred down to 7.5 as it had shortest hangover. Are u still taken AA or did u take for short period. I was already AI before PMr
I'd had a DEXA scan several years prior to diagnosis and the results had suggested osteopenia then but I'd refused to start taking biphosphonates....choosing instead to try and manage it myself first. To be honest, I didn't really do enough and became too complacent, so when I had my post PMR diagnosis scan, it came as no surprise to hear that the condition of my bones had deteriorated further. I began biphosphonates in May 2019 and I'm still taking them 3yrs later. I intend to incur a full review about the need to continue with them though at my next rheumatology appointment.
It is our ultimate goal too - no-one WANTS to be on pred any longer than they must. But you need enough pred for long enough as long as the underlying disease is active. Does she tell her RA patients they must get off their DMARDs? No, because she knows they are needed longterm. Pred is our DMARD - since they won't let us have tocilizumab.
I suppose it might be in the USA - but it isn't approved by the FDA or their equivalents anywhere for use in PMR so it is used off-label which usually requires special funding and some fundholders won't pay for it as it is very expensive, iro $17K per year I think. Dad2Cue has been on it with a diagnosis of PMR but he was at a high dose of pred and been on it for many years.
I don't know the figures for PMR - it is trialed and approved for GCA everywhere but it only works for half of patients to get them off pred altogether, the other half need a much lower dose of pred, 8-10mg is quite common.
Interesting, I just googled TCZ and they had in parenthasis Actemra. I mentioned that to her and she said it might be a possiblility we can talk about when I get to the lower dose. I didn't know TCZ and Actemra were one in the same.🤔
TCZ is the substance name, Actemra is the brand name. All substance names ending in -mab are a class of drugs called monoclonal antibodies and some of them have some very strange and unpronounceable monikers. The pharma company tends to choose something a bit catchier for advertising purposes!
Can we call it that we are looking for remission of the disease? You've brought up a very good point! What about those of you who have GCA? Don't you also need the pred long term as well?
I was on Pred for 4 & half years until it went into remission - starting on 80mg.
I have been off them for almost 5 years -and despite what some doctors might think I’m still walking, talking and living a good life….thanks very much. 😊
Well yes - but no drugs guarantee that, and it will burn out on its own eventually for most patients. The hope with TCZ is that when it stops the production of the inflammatory substance IL-6, eventually it dies out altogether by resetting the immune system,
Catdance your post described my first meeting with a rheumatologist in 2019, after 5 years of PMR and at 10 mg, down from 40 mg. She absolutely freaked out! “PMR only lasts a maximum of 2 years!”. “I want you off prednisone in 6 months!” Try as I might to explain the newer research, my history with flares, etc., she would simply not listen.
After meeting with her, and against my better judgement, I did speed up the reduction, resulting in a massive flare. I went back to her once gain, and although she showed more consideration for my situation and said “I’m willing to work with you”, I decided I didn’t need the aggravation.
That was three years ago. Since then, I’ve had several flares and currently reducing from 13.5 mg to 13. If I don’t stick to .5 reductions and the DSNS plan a flare will happen. I’ve had flares for other reasons, some known and others seem to appear out of the blue. Do I have a recurring type of PMR? Do I only absorb 50% of the medication? Who knows? However, I do know that I have to manage this condition based on my body and my symptoms. Fortunately, the GP who made the referral is understanding.
I have had a similar experience with rheumys. She was relentlessly pushing me to zero and eventually I fired her and begged my GP to take over my care (GPs don’t usually do that in the US). He said yes. He trusts me to taper as I can. Under his care I have gotten from 7mg to 2mg and even though I have been stuck at 2 for a couple months, I don’t think he will give me a hard time. He has mentioned he has another patient who is on a 2mg maintenance dose. I will keep trying to get to zero as PMR allows but I am in no hurry. And if I ever have to see a rheumy again for anything I will travel farther to find a different one! I just passed 3 years since my diagnosed, 20mg to 2mg so far.
Haha! I refused to at this point. I told her if I had issues when I got down to the lower dose I would consider it. She said she will insist on it. Next time I'll come in better armed with more info printed off instead of quoting! Lol! I'm just glad she agreed to the blood tests and allowing me to taper at my pace! I thought about giving her the link to this group so she could read some of the posts and maybe get a better understanding of what we all actually go through. We are real people not just statistics! The struggle is real and shouldn't be ignored.
My GP has been pushing Alendronic Acid on me for over three years. Every time we had any contact he brought it up. I had a Dexascan recently and the radiologist said everything was tickety boo, so he has been a bit quieter!
She sounds like another arrogant docto/rheumie...I don't think she will read anything you present to her....why would she...she knows it all...no doctor would tell me they "insist on it".....I would insist on getting another doctor.....
It’s truly amazing how similar our stories! Saw my rheumatologist this week and he told me all the same things. Won’t even prescribe 5mg tablets anymore. I think I go into a flare every time I see him. He pushes every other drug under the sun except prednisone. Sounds a bit naive, but can’t we all send an open letter to them. Someone should publish their story in the NYT. As PMRPro says, it probably wouldn’t matter. They won’t listen. Thank goodness for this forum.
In my experience I find a lot of doctors are not very good at reading things. Some are pretty bad at arithmetic too! I will not comment on their writing!
Stress was a huge factor for me as well. 4 months after my husband died I had the symptoms but thought my neck was out and needed to see a chiropractor. I bought special pillows thniking that would help but when the hips started to get sore I finally decided to see my doctor. 5 months later, diagnosed with PMR. So you're still on TCZ? Did you ever develope side effects from the pred that were permanent?
You've gotten some great input...I just wanted to say, I've been on pred and Actemra since 2019. I have GCA and started at 80mg of pred for some time. I'm now down to 8mg and have always used Actemra weekly with no issues. Sure, I have the usual side effects of pred, but the benefits outweigh it for me. I think you have a wonderful attitude and are an ecuated patient, not afraid to speak up~!💕
Hello catdance, I have gone from 25mg to 1.75mg in 4 years 3 months - very slowly but no major setbacks, just some minor ups and downs along the way. Most of the side effects have gone but still waiting for the thinning hair on top of the head to return. All the best and stick to your guns. 🌻
TY, but not the only one....but wasn't hassled by a Rheumy with his/herown agenda. My original GP ( who didnt have a clue about GCA early days) learned together...
And that is why I changed physicians. I never had high lab #’s, but yet the Dr and his NP used low numbers against me. The NP tried to shame me at one point, and this is where the Fabulous hubby jumped in and told her that was enough. For the 57.5 years before PMR & Fibro, I was wildly independent and active. Going to a Dr appt that I’m paying for, only to be shamed that my body doesn’t want to taper as fast as they want, led me to a new Dr that would cheer me on as I could tell him with each appt that I’d lowered my dose. Shaming patients to get them lower, and faster is sad. Having a cheering squad in a white coat is much better. Keep going! You’ve got this!!
I am truly sorry your rheumatologist is so out of touch with the reality of living with PMR. I am going on nearly 7 years with PMR and I’m currently at 5mg prednisone. The lowest dosage I have gotten to is 2mg but then I flared… certainly not the first! Over this past year I have had a total hip replacement and just 2weeks ago a total left shoulder replacement which will be followed by a total right shoulder replacement in September… 40+ years as a dental hygienist did them in! My rheumatologist understands the stress of these surgeries and wants me to stay at 5 mg or whatever I will be comfortable at to get not only through the surgeries but through the recovery process and then we can resume a very slow taper to hopefully at some point zero prednisone but in any case the lowest dosage I’m comfortable at. She is beyond wonderful as a rheumatologist and I only wish more were like her in understanding and treating this disease. All my best to you. It is a journey of many ups and downs for sure.
In answer to all of you: Thank you so much for sharing your experiences! It is not an easy road and for a lot of you much more so and longer than I have had to deal with. So thank you for your help, concern and strength that you offer through this sight. Fortitude and Attitude!
I was on the Alendronate for about 3 months when it was first perscribed at the onset of PMR and the 2nd bone density test I'd ever had. My first BD test showed minor osteopenia and they were just going to "keep an eye on it for now." After PMR and pred they decided I needed the Alendronate to prevent any further damage, at that point I was progressing to osteoperosis. I took it but then discontinued due to having some major dental work done, which took about 5 months. During this time I was taking Calcium, Vit d3 and Vit K, drinking milk more faithfully and of course walking, occassionally dancing. I reached 4mg and was doing OK but after a couple of months I know I was in relapse and needed to up my dose. About that same time I had my last BD test which showed not only that I was healing and back to osteopenia but improving in the areas where I had it. My spine was really good but still had issues with my hip area. Over all it was great to hear I was improving. They wanted me to go back to taking the alendronate since the dental work was done. I did for 2 months but I quit because I was having an issue with trying to take it as my "1st medication of the day" since I was taking the pred at 3/3:30 am for awhile. I just couldn't keep up that schedule and I now am taking the pred as late as I am up, between 11 pm/12:30 am which helps with the morning pain and stiffness. I'm also tired at night so I do actually get some sleep, about 6 hours or more. I am debating on taking the alendronate again since I have shown improvement without it. Not sure I want to take it if I really don't need it. Any thoughts?
It actually is not compared to a lot of others in this forum. You, however, have been on it a relatively short time if you started Dec of 2021. I hope you have continued success!
Thanks but like everything else in life Pred is not the only answer. I put myself on a keto diet, have lost 50 pounds and am exercising 7 days a week. ? This condition needs attacking from all angles.
I was on a keto diet just prior to and in the beginning of my diagnosis of PMR. In my case the diet didn't prevent nor did it help once I was diagnosed. Recently I hadn't been eating hardly at all, nothing tasted or sounded good and I still gained weight! I also walk every day and do stretches as well. Sometimes it feels like I'm taking 3 steps back for every 2 going forward! You are very lucky and I hope you continue on without any issues but for most of us it is a struggle.
There is no award for -zero- pred. You have the right idea, for sure. Fortunately, my rheumy would like me off, but listens. I've been of steroids and Actemra for 3 years with GCA. I just got into single digits 60 days ago. My rheumy, Indiana US, has even said I may have to remain on a low dose. Sure, he wanted me off too because of the side effects but he knows you have to listen to the body.
Do you think your rheumy has a crystal ball? How can she pull a date out of the air for you to be at 7.5 pred? Truth is, she can't. So glad you are here!💕
We're practically neighbors! I'm in Michigan US. Thank you for your input. I'm hoping I'll be able to show her that I can accomplish gettin down to the 7.5 mg, maybe 7 mg, all be it a bit slower than she would like but with the method I'm using, the schedule has me beginning the taper to 7 mg right around my next appointment. So, crossing my fingers and hoping it works! I am so very glad I have this sight and the expertise of this sight. Everyone is so kind and willing to help it feels more like they're family! 💗
I've picked lots of fruit in Michigan, we used to have a small blueberry farm and sold Michigan fruit in season...beautiful state.I would have been lost without the wonderful support and knowledge on this forum~!! When I would say GCA, most everyone, even some nurses, would say WHAT???? When you hear some of the stories and what folks go through; it is inspirational and so encouraging. Helped me be a stand-up patient too. Welcome to this family~!💕👩🏾🤝👨🏻👩🏿🤝👨🏿👬👨🏻🤝👨🏽👨🏼🤝👨🏾👨🏾🤝👨🏻👨🏽🤝👨🏼👨🏽🤝👨🏼👨🏻🤝👨🏿👩🏿🤝👨🏼👨🏻🤝👨🏽👨🏻🤝👨🏿💕
Pred does not make you gain weight. Eating more calories than the body burns does. I wish you well.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Reducing from 10mg to 7.5!
GCA SYMPTOMS RETURN AFTER REDUCING PRED 60 TO 55 MG
how to begin a slow reduction from 20 mg?
Stuck on 13 mg for 4 months, not sure what to do
