PMR for nearly 4 yrs down from about 40 pred to 5. I'm in a lot of pain. Both Rheumy and Dr say I should now come off pred at one mg per month !! The Dr agrees with the Rheumy as they know best. Does this mean I will be in pain for the rest of my life, now 78. I still work as a tutor 3 days a week, through necessity. A struggle the way I feel now let alone without any pred at all.
Do as Rhuemy and Dr say re reducing pred ? - PMRGCAuk
Do as Rhuemy and Dr say re reducing pred ?
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Quinacridone
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PMRproAmbassador
I think you need a different GP and a knowledgeable rheumy who realise that PMR does NOT work to a fixed timetable and if you are in pain at 4mg you will be in a lot more if you were reduce at that rate now. Added to which, few people's adrenal function would keep up with that rate of reduction after 4 years of pred, so they are exposing you to the risk of adrenal insufficiency and, potantial, an adrenal crisis.
You don't reduce relentlessly to zero - at any stage of the disease you are looking for the lowest effective dose. It sounds as if you may well be below that already. PMR doesn't just last 2-4 years, it is now realised to be a complex heterogenous disorder that varies from person to person. Quite a high proportion of patients are still on a low dose of pred after 6 to 10 years - and not because it isn't PMR. You are at a relatively low dose - though probably need a bit more. And you need better doctors who will consider the patient in front of them and not an out-of-date textbook.
Thankyou so much, I have learnt over the years to come down slowly after reading this site. Half mg for a month or until I know I'm OK. After seeing a senior nurse at the rhuemy clinic, I was horryfied to read the letter he had sent my doctor. I am worried they will reduce or stop my repeat perscription. Especially now I have seen my doctor and said I should do as the Rhuemy says.
It would be medical negligence to stop your prescription - and someone in your GP practice should know enough to realise that. Hopefully you can access someone who understands a bit more about the long term use of pred and adrenal insufficiency.
I’d be inclined to collect the relevant evidence on why we need to reduce slowly & the risks it carries & book to see your GP to discuss your concerns & go from there. Will reply further in the bank at the moment!
Thank you Mrs Nails, I have an appointment at the Docs again in a couple of weeks, I will go armed with info & let you know the outcome. Already had a slight altercation for saying I didn't want to take Lansaprol ? Until then do you think it wise to go up to 7mg & see how I feel. I'm on 5 at the mo'.
As you are really struggling it could well be worth a trial for a week & see if you improve as that could be part of the evidence. Some people need a PPI others get away with just yogurt to protect the stomach - l take Lansopersol but l have a dodgy stomach & l’m on boatloads of Meds.
What l was going to tell you about was my Mum - on longtime Steroids for Brittle Asthma — she tapered down remarkably well & lost all her steroid weight. She was bobbing along nicely when the district nurse de-brided an ulcer on her leg & about two hours later my Mum collapsed.
I don’t know why l called into see her on my way home but luckily l did - she had an Addisons Crisis as her body was unable to cope with the trauma. It’s a complicated story as to how she was diagnosed but it had to do with me sitting on the end of her bed when a Consultant l knew was doing his Ward Round & l explained the full story.
A quick dose of 100mg Hydrocortisone & she was like a New Woman - these are the risks when you have been on long term steroids. After that she went on HC 3times a day & lived to be a great age despite everything.
Have a look in FAQ’s & see what you can find on Tapering Steroids & print out to take with you.
Somewhere l have an article by Dr Sarah Mackie which l’ll find for you but it might not be today but l will get back to you.
MrsN
Here’s a link to the Article l mentioned - towards the end…..
‘The Dark Art of Tapering’
What side effects are you experiencing from taking Pred and are they being addressed satisfactorily? As PMRPro noted if you are having PMR related pain then the Pred dosage is already too low. I’d be building up my Prednisone inventory and start pounding the pavement to try to find a doctor that treats the disease and not some arbitrary timeline.
Have you been offered anything like Methotrexate? To possibly mitigate your symptoms, it works for some people.I know I would have responded very badly to the regime that you have had imposed upon you. My Rheumatologist wouldn’t dream of insisting that I carry on reducing if I was in awful pain. She was perfectly happy that I follow the tapering protocols outlined on here in FAQs. I even remained at 7 mgs for a full year. I have been on Prednisalone for 6 years having developed GCA/LVV 4 years in, possibly a factor in my difficulty in tapering. Bottom line is, you are probably flaring and need a boost of Pred. In order to support the recovery of your adrenal system it is imperative that you taper this last bit slowly by tiny decrements , like half a mg. Only once your pain has subsided though.
Two things could impact on how you feel. 1. The demands of your job may simply be too much.2. Your Adrenal system is struggling and causing your symptoms.
Perhaps your doctors would consider a referral to an Endocrinologist before wizzing you off Prednisalone. They can test the potential for your adrenals to work independently of Prednisalone . Your doctors ought to understand the danger of sudden withdrawal of Prednisalone. Perhaps another brain could improve the quality of your care? Let us know how you get on. 🍀
Thank you x
I suggest to always follow your physician's advice as they have earned their title for a reason. Medications are poisons and everyone reacts differently to them. Medications are prescribed for a reason and monitored for a reason. Everyones "journey" is different and everyone reacts differently. NO disrespect but age can play an important role/factor in how and why certain medications are either prescribed or not and dosed less or more. A medication given to a 50 year old at a certain dose, can be deadly at that same dose to someone in their 70s. Bodies become more fragile as we age (I am so sorry to say this but it is a fact).
You asked this question:
IHas anyone successfully weaned off of prescription steroids after over 17 years of use? I am currently taking just a "maintenance" dose and I want to stop/wean off completely but was told by my Rheumatologist that it is not possible due to the many years of use shut down the Adrenal glands."
The advice you were given by your medics was correct and you followed it.
That does not mean that all medical advice is correct after all they are human just like the rest of us and capable of making errors.
You are advising someone to follow the physician's advice when the person concerned has been on pred for 4 years and been advised to reduce quickly. They have not been offered a Synacthen test or a short cortisol test to see if the adrenals glands are working or capable of working and that is putting the patient into a risk.
Being a person, who had an adrenal crisis (penicillin) long before GCA came along, my medics were extremely careful about adrenal glands.
I would want both a short cortisol test and then a full synacthen test before I dropped one mg or even half a mg. Especially when at 5mg, they are still in pain.
Thank you for the clarification! I totally agree with you! Honestly, I am no "pro" concerning steroid use in those of advanced age at all nor claim as such (other than my own history and limited studies). I do know that age can be a huge factor. I also sincerely, do not know this person's exact history (actual medication list other than what they post) either. I do not know if they have or if "heart problems" may have been detected or something else during their last medical visit, nor how long they have been on certain other medications/conflicts. I did not judge at all or give anything other than my own opinion and the safest option. So, I guess I was wrong to tell someone to speak to their medical professional first?
BTW, YES doctors are human and make some serious mistakes (thus second opinions and even lawsuits) but isn't it a bit strange IF more than ONE professional advises you to do the same thing? I could be very wrong here too but I just want a person to safe...that's all.
Except in this case the GP doesn't appear to be advising in their own capacity but blindly following a rheumy who is actually out-of-date since a study has been done in Leeds UK that found at least half of patients like us on long term pred had considerable difficulty regaining adequate adrenal function and that it took months of careful tapering to do so. Tapering in GCA and PMR almost NEVER works when done to a timetable, it must be adapted to the individual and their needs and that is stated in every guideline in the GCA/PMR field that I have seen. And I have seen quite a few. It is a very different use of steroids than most rheumies come across with the majority of their patients who are using them to manage the symptoms of a flare in their disease, whether it is an inflammatory arthritis or lupus or anything else, UNTIL the DMARD or biologic they may be using is adjusted or starts to work fully, There is no alternative in GCA and PMR below biologic level and the use of the one approved one is limited. DMARDs are sometimes used but don't work reliably and often cause more trouble than they are worth - if they worked, they wouldn't use pred.
As they gain experience many rheumies do come to understand these factors - one in the UK just over 2 years ago was insisting that all his patients got off pred in 2 years according to HIS approach, implying it was the doctors or the patient who were at fault if they needed pred for more than 2 years. He stated this at the charity AGM and was laughed at and subjected to a lot of comment by experienced and long term patients. A few weeks ago I was at a research meeting of top PMR/GCA doctors that he also attended - and he was now stating a very different opinion.
We aren't plucking our replies out of thin air - they are related to personal experience AS WELL AS in-depth knowledge gained from lectures, seminars, publications and personal contacts with some of the top research doctors in the field. So if one of us warns that is a medically risky approach - you can be fairly sure we got it on good authority.
You perhaps need to open both eyes Patrickd. One can learn to drive from a text book but that doesn't mean one would be able to actually drive a car. You said it yourself, "Everyone's "journey" is different" and no one should be deliberately left in pain.
Again, I am just sincerely concerned over safety. Why did these 2 doctors drop her down? Did they detect/see something? Ok, maybe I am missing some other important information? (I am NOT licensed to practice nor prescribe so I do NOT given ALL my experience with steroids). I am not a doctor, are you? They are "supposed to be" licensed to practice medicine for a reason. I would be SO upset if someone went against their physicians' orders and got hurt or worst of all..died. Be safe, be well, be blessed.
While that certainly could be the case, if you hang out here even a short time you will see stories over and over of doctors blindly forcing patients to reduce steroids too quickly based on arbitrary and old guidelines. This often leads to painful flare ups in those patients that actually require far more steroids than if left at the slightly higher dose to begin with. Rheumatic diseases require much more personalized treatment than most conditions. And unfortunately, many rheumatologists are very rigid in their approach. I had consults with several like that before returning to my GP who agreed to treat me instead. I am now successfully down to 2mg and he is patient with me, allowing me to adjust as my body is able. Is it slow going? Yes! But I rarely have a painful day this way and I am down to a safe maintenance level even if I get stuck here for a while. There are more humane ways to help a patient through this condition! If there were a medical reason someone had to come off steroids asap, that would be a different conversation and there are a couple of those discussions here but this doesn’t seem to be one of those. Final thought… I wouldn’t suggest people defy their doctors outright but I totally suggest finding a doctor that listens, is open to modern research, explains their reasoning for their approach and are focused on the patient’s needs and pain more than the number on the rx.
My GP told me that the biggest mistake GPs make is to make patients reduce too quickly. He understands corticosteroids having taken them himself. After the first few regular appointments he put me on repeat prescriptions saying he knew I was sensible and had educated myself on my condition. He trusts me and lets me manage my own tapering myself (and indeed my own increases in accordance with 'sick day rules' in the rare event I have a flare) as he knows the danger of forcing people to reduce too fast - but he is available if I need to discuss anything. Essentially we mange my condition together. He has also said I have educated him about PMR with information I have obtained from the various experts on here and the peer reviewed papers that are often referred to and that has helped him dealing with other patients. So while it may look to you as if people are just changing their medication around randomly I think you’ll find that a lot of people are actually managing their condition themselves with the blessing of their GPs. As someone else mentioned to you already the charity who runs this forum (PMRGCAuk) also hosts regular webinars with talks by specialist rheumatologists which are excellent. Those who attend always learn from them and in fact through the forum and the charity a lot of us have taken part in various research studies which will hopefully ultimately improve the management of PMR/GCA for everyone wherever they are in the world. If you would like to join the charity there is a very modest membership fee and you would be able to attend the webinars and members's days and receive the magazine too and perhaps better understand these two conditions and their treatment.
“…why did they drop her down…”
I don’t know, maybe they aren’t staying abreast of published research on PMR and focusing more on the more known diseases like RA, Lupus, etc.
My Rheumy pulled the same stunt with me in 2019. Do this dose for this many weeks, reduce, continue. Call if I have a flare. I started reading every bit of published research to gain an understanding of the disease and to be honest at this stage I probably know more than he. I took over managing my PMR in 2020. As I got lower in dose I started reading publications from the Endocrinology Society pertaining to long term steroid use and Adrenal insufficiency. My Rheumy said I didn’t need a Basal Cortisol test, at less than 2mg/d. But at my next 6 mo appt with my GP I requested as part of my blood workup that test along with Vitamin D and Calcium in addition to those she prescribed. My Cortisol level was ok, but at least I wasn’t shooting in the dark. My Rheumy was upset that it would be over 3 years by the time I reached zero Pred as he was adamant that I should have been off in 2 years. I gave him the research showing the actual average is 6 years including addressing Adrenals. That shut him up. However, I had been building up my Pred tablet inventory and now unless I really have a setback I don’t care if he refuses to renew my prescription.
My most recent office visit Mr Hyde was repressed and I had Dr Jekyll. Said I was doing well, keep up the good work and he’ll see me in July. I don’t know who I’ll have at each visit, as I’ve had both. Mr Hyde is an ignoramus but Dr Jekyll recognizes I know what I’m doing, will contact him before doing anything stupid, and is willing to follow my lead. In our most recent visit he told me I was doing very well and over all had very few flares, none that were serious and what I’m doing is working for me. He did ask how I was going to do 1/4 mg decreases after reaching 1 mg. I told him I use a self-centering pill cutter that uses a razor blade and that it does it nicely even without the score.
So, yes, had a doctor, good for refilling prescriptions, but not much else.
I agree that medicines taken indiscriminately or just abruptly stopped can be dangerous. I disagree with just blindly following a doctor’s instructions, worse case it can get you dead.
I think safe is good but at any age adrenal function and pain level are very important factors.
Yes very, very true. I am just a tiny bit more concerned because age can be a factor of "more" risk with medications...that is all. I am not qualified to dose anyone ever with any medications. Thus is why I just "advised & suggested" to contact her doctor. I wish NO ONE harm, ever.
What harm is it for her to CALL her doctor and ask? Tell them the pain you are experiencing? Better SAFE that is all. She doesn't HAVE to do it. She can do as she pleases.
This is a forum based in the UK. There are some other nationalities here including some members in the USA but they are very much in the minority.
In the UK you do not usually have direct phone access to a doctor and currently it is very difficult to speak to a doctor at all, sometimes there are waits of a couple of weeks for what are considered non-urgent phone consultations and often it will not be with a doctor but with another, non-specialist healthcare professional. You certainly are unlikely to be able to speak to a specialist doctor because of the way the system works - they are all either in a hospital setting or they are behind a "paywall" if private. We don't have an insurance-based system so if you go privately, you bear the full cost yourself unless your employer covers private health insurance - not common, unlike in the US.
I'm not intending getting into a discussion defending socialised medicine or otherwise, I'm trying to explain practicalities to you. People come here for advice about various situations - and we will ALWAYS tell them when they need to discuss it with a doctor. All too often that isn't an option but we do know the answer about the way forward in a given situation. I wouldn't presume to tell someone in the US how to get the most appropriate medical care except if I thought they really did need emergency advice and the ED - in the case of new GCA symptoms for example. OTOH - we do know how the UK system works ahving used it all our lives.
Thank you VERY much for clearing that up! So in the UK, you can not call to consult your Specialist if you have a medical question or concern? WOW! I had NO IDEA! That is crazy. I mean, I can not "call" my doctor directly either BUT every doctor here has support staff (nurses and PAs) who contact you back that day also, email (also contact you back that day). I feel so badly for ALL of you. Honestly, explains a lot!
You needn't feel bad about it - it works pretty well most of the time. One thing that will never happen though is that we go bankrupt because of illness or have to not take medication because we can't afford it. On the whole - I prefer our system.
I do appreciate you clearing things up. There are pluses and minus' to each system I now see and I pass no judgments. UK people are "people" experiencing the same illnesses and struggles as myself (seems more of you too). I LOVE that it's the UK as I learn from y'all in a positive way.
I live in Maryland, USA and my Physicians have online Portals through which can share messages without calling their Office. I use it mainly to keep them apprised or request a prescription renewal.
Normally I research a lot before going to a doctor and also interview them as part of the New Patient process. Within 1 yr I know if I’m staying with them or moving on.
I didn’t have that option with Rheumy. I went to the ER (Emergency Room) with 10/10 pain and severe shaking and the ER Hospitalist put me on 80mg Pred (had only PMR symptoms) for 2 days and released me. My GP had to work to get me a Rheumy, so kind of stuck with what I got. Not many in my neck of the woods. You can imagine my ire when I read for PMR to start with 15-25 mg Pred and GCA 60-120mg.🤷🏼♂️
PMRproAmbassador
I don't - what I'm saying is that we have been at this for a long time, base everything on evidence and have done the research. Plus, one of the reasons we ask for a profile to have at least some basic information is that we can check on the things you mention. We also read every single post and reply to get the context.
Hi patrickd
l see you have been on HU since 2021 but l think regarding RA? Do you have PMR? And although LORA may present initially as PMR you appear to have had RA much longer than that.
The issue with tapering Prednisolone after being on it for example 10years or more (often less) it is always going to be the issues with Adrenal Function…..
Are you a Member of the PMRGCAuk Charity or just this Forum? As Members we are invited to listen to many experts in both PMR & GCA - many Respected Consultants will listen to what we the patients have to say from our experience. We also have the opportunity to say what topics we’d like to hear the Professionals to talk about, Adrenal Issues being one of them.
Have you looked at Our FAQ’s? Which l personally have collated & it contains much helpful advice from experience from many Members.
Everyone’s situation is relevant to them - the same with Medication - if people have a question, others may offer their experience but will always be advised to contact their GP/Consultant or Pharmacist.
We have Members on here with much Experience & are considered ‘An Expert Patient’ there are Members who are part of Medical/Patient Groups who are well respected.
I’d recommend FAQ’s & hope you can find support within the group.
healthunlocked.com/pmrgcauk...
Kind Regards
MrsN
PMRGCAuk Volunteer
I do and was diagnosed with PMR just in August but suffered longer with misdiagnosis. I do have this listed in my profile, yes. I did put down as much as I could in my profile regarding my history but it is very lengthy. I honestly do not ever feel qualified to give anyone any dosing advice on anything even though I've been taking steroids for over 20 years and I'll bet I've been through more than many of you here. I personally, react differently to steroids than most even on the lowest of dosing, and other drugs (super sensitive inherited problem) so I thought my perspective within these groups could only help. This is the PMR and RA group isn't it? Those are the two groups I've joined and look to when seeking support/talk. Honestly, I do not use this site to seek medical treatment/attention but only to offer help when I can. I do find great comfort in those going through the same medical conditions as myself.I've taken many, many medications (injections, infusions, and by mouth) to TRY and control my PMR and RA. It took me around 16 years of trial and error with medications and mixes. I was also pregnant taking steroids so feel I can help many given my past situations. I am currently having great success taking Actemra injections putting my RA & PMR in remission. I'm told it's not "proven" as a treatment for"PMR" BUT it is working for me!
"This is the PMR and RA group isn't it?"
No - this is a dedicated group for people with PMR and/or GCA, not RA. PMR and GCA are forms of vasculitis (inflamed blood vessels) not arthritis although there are some patients on here who have both PMR and and an inflammatory arthritis. You may be confused as GCA is Giant Cell Arteritis - due to inflamed arteries. Their management is rather different from inflammatory arthritis.
One group of patients you won't find here are any pregnant ones - PMR and GCA are rare in under 50s though they do occur in younger patients.
So I can not join in? I am not welcomed here? BTW..PAST pregnancy is not current was giving YOU a summary of my past. I should only respond or help when it involves directly PMR, RA ONLY? wow. I thought all are welcome to provide input.
in reply to patrickd
Blimey so we can't join in then, ok I'm off to look elsewhere I have PMR and Osteoarthritis!! Sorry to have bothered anyone here 😞
You are very welcome - as is anyone, but this is PMRGCAuk charity’s forum . However many on here do have OA or RA or other things as well and there are other forums that cover those illnesses in more detail. Medicines and protocols may differ, so you have to be careful about advice. What might suit OA or RA may not be good for PMR or GCA -that’s all that’s being said I believe to patrickd .
Plus of course differing countries have different rules and regulations-another minefield.
Thank you for that. Should a person have both diseases only to contribute? I have never offered nor will ever offer medical advice that is dangerous to anyone, EVER! I hoped you would all appreciate hearing another perspective/contribution from outside...another country (I always welcome it & I learn so much from it). I apologize if I hurt anyone. I sympathize with ALL suffering from ANY/ALL autoimmune diseases regardless of which of the many may be. ALL seem horrible.
Nobody said you couldn’t contribute……but you have to be aware of the subtle nuances between the different illnesses and protocols and perhaps the difference in approach from other cultures, it is a multicultural forum after all, so one size does not fit all.
Highlandtiger in reply to
No-one has said you can't join in. Where did you get that idea from? There are lots of members from lots of different countries who contribute to the discussions.
If you read UP I was replied to as and I quote.... "this is a dedicated group for people with PMR and/or GCA, not RA". I took that to mean seeing I have RA, I am basically not really supposed to contribute unless I have one of those.
I was actually replying to ELOise53's comment as you’ll see from my post…
It means that the forum is aimed at PMR and GCA. The charity policy is it should be focussed on those conditions and the introduction of discussion of other disorders is discouraged unless relevant to PMR and GCA. Not our decision - we just get on with what we do and stick as closely to the rules set as we can.
oscarandchloe in reply to
I think you have misunderstood the way this forum has to be run for two specific conditions -GCA and PMR. I have been a member in the UK for about 3 years and look to it for careful, researched non-professional support. Unlike other FB so-called forums where there is a looser, more social structure, this one has a purpose and focus. We all aim to help each other, share relevant experiences, give practical advice on managing our complex and individual conditions. If members need cheering up, sympathy or even a laugh, this forum is there for us. I see it as a valuable resource that has helped me cope through the pandemic when we in the UK had almost no immediate access to medical opinion. It is a supplement to professional advice, but we have all learnt that medics frequently are not up to speed with our less common illness as they simply do not see or manage a high volume of GCA/PMR patients. I hope this helps you to understand why this charity-led forum differs from other forums you might have encountered.
Hi there, I don’t think anyone said you were not welcome to join in. I think most of us who live outside the UK are grateful the folks on this site share their wealth of information with us. I have had some dreadful doctors in the past 6 years who really did not understand what was happening to me. I am eternally grateful to this forum for always supporting our illness with knowledge and kindness.
That isn't what I said at all - everyone is welcome. But what applies for RA doesn't by any means always apply for PMR and/or GCA. Nor does what applies in the UK apply for the USA or Australia and vice versa. There are many things that are common to the disorders and to all countries - but again, not all as I have explained about telling someone to call their doctor - not usually an option in the UK as simply as it may be in the USA and why suggestions we make here are more focussed on helping the person who doesn't have easy access to their doctor and may only see a rheumatologist every 6 months or even less frequently. And please don't try to tell me that doesn't also happen in the USA - we have had many members over the years who had NO rheumatologist to ask as they lived in a very rural area with no hospital nearby.
Many of us have both PMR and osteoarthritis so it is rather ridiculous to say that people with both aren't welcome. But the focus here is on PMR and GCA - when RA or OA feature it is generally another problem. Our expertise is for PMR and GCA and we happily admit that. But the forum is financed and run by a small medical charity devoted to PMR and GCA matters and most of us are volunteers. If we add in a load of other disorders that require different approaches - we are spread too thinly and the administrators discourage off-topic discussions to make it easier. Where the approaches overlap or are similar - great, join in all you like. But be sure you know your subject or say you don't really know.
Thank you. I will never tell another person on this UK forum to consult with their doctor again. NOR for their safety at the age of 78 to please check before increasing steroids. WOW, my bad!
Somewhere else you ask "what am I missing" - probably the whole context of how pred is used in PMR and the tapering process involved. Most of the patients on this forum at any given time are on their way down from a higher dose of pred which was prescribed by their doctor originally. We always tell patients to get medical advice for increasing their dose in the event of possible GCA but to get it quickly. Most of us have instructions from our doctor to immediately raise the dose in that even anyway toreduce the risk of permanent total loss of vision.
But this particular battle is about doctors being unaware of the risks of reducing even low dose pred precipitously - you might be surprised how many think that a low dose isn't doing anything so they can stop pred cold turkey. THAT can kill the patient if they then have an adrenal crisis that isn't recognised and treated immediately.
Ah, so the medics that you appear to put all your faith in didn't get it right initially. As a matter of interest, how long did it take them to get a correct diagnoses?
patrickd Please read the article in the link below - called the Dark Art of Tapering…..Written by one of the most eminent Rheumatologist’s in the U.K.
You misunderstand this Forum - we do not give advice unless it is backed up with fact.
However, we are not used to a New Member coming in & sounding off in this manner. Everyone is different, you have obviously had a difficult time but your experiences are different from others.
We only ever advise & recommend that Professional Advice is sought.
Please read this link - the article is towards the end. In which you will also note Thanks & Acknowledgment was given to Our Ambassador PMRpro
pmrgcascotland.com/wp-conte...
MrsNails
PMRGCAuk Volunteer.
With over Ten Years Experience.
Hi I do feel for you . 4years into PMR GCA I had tapered to 3.5 mgs Pred and had some pain . Rheumatologist insisted PMR had gone and I should cease Pred within a couple of weeks. The resulting flare was dreadful and like you my GP said she could only follow The Rheumatologist s instructions. A couple of months later I had an appointment with a locum who had no such qualms, prescribed Pred and now 4 years on , 8th year of PMR...I’m struggling to get below 6 mgs I recently had a private consultation with expert Dr Hughes as rather despairing whose advice was to try and gradually get to 5mgs and stay there . I hope you can get some supportive help 😃
Obviously missed a few lectures, starting with the long term pred and return of adrenal function one!! That isn't true about the GP only being able to follow the rheumy's lead - they are autonomous and she could have taken over your care which would have been normal for most PMR patients.
Mmmm not sure who I’d turn to for advice now as haven’t heard from rheumatology since I was prescribed 6 months methotrexate 14 months ago and no follow up/ discussion followed Hence going to see Dr Rod Hughes which the gp practice head was sniffy about when I let him very politely know in case records were needed .Thank Heavens for this forum 🙏💚🌈
Hmm - well I wouldn't be overjoyed about a rheumy who started me on MTX and then abandoned me - presumably because it didn't work? Or the usual excuse in the last 2 years of "Covid".I didn't see my rheumy much during Covid though I could and should have done. Made up for it in the last 6 months a a result.
Did the MTX allow for a lower dose of Pred to control inflammation? My understanding is it takes 2-3 months to allow MTX to reach effectiveness and that it’s a hit or miss. The MTX helps some and not others.
I fired my Rheumatologist but now I have to wait several more weeks to see another which is forcing me to reduce prednisone even more. I am miserable, but I am also not a damn lab rat
I don't feel you are getting the right help from either your GP or Rheumatologist. Are you in the UK? You are entitled to a second opinion if you search for who is in your area.
Whatever age, no one should be I pain to that extent, regardless, and if you are still working, then I can only imagine how tough that must be.
I come from a very long line of medics and have met all sorts along those years. They are most definitely not all the same, some should not be in their jobs, others are exceptional. You need to find the right fit for you.
I am not medically trained but I am 77 and on 10 mgs of Prednisolone. I am well aware of side effects, I experience many of them.I may be wrong but I would stick to your guns regarding Prednisolone. I feel that I want to enjoy each day NOW and will take my chances with Prednisolone.
I have been advised to try to reduce which I shall, however, even novices know it is a very long process.
Change Consultant and doctor if they refuse to cooperate. I would even complain to the appropriate board.
Good luck .....I feel for you!
Thank you for your reply, it made me feel so much better. I have decided to go up to 7mgs and see if it helps because right nowI am struggling to find a reason for getting up and facing another day of feeling so weak. X
Remember to quote that to any doctor who may dispute. The point of pred is to make life worth living - and that means taking enough.
Thank you all for your much appreciated comments. Everything in life seems such a battle nowadays. X
It does doesn't it
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