Has anyone on here ever tapered completely off Pred naturally without having to take anything else medically. Other than hollistic medicine perhaps?
Weening off Pred after 5years. Naturally? - PMRGCAuk
Weening off Pred after 5years. Naturally?
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Lesibz
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DorsetLadyPMRGCAuk volunteer
Yes me for one - but many others also.
I had GCA, and reduced from 80mg to zero over 4.5years - no added extras..no reoccurrence.
If you are struggling to get to zero it may well mean that your illness has not yet gone into remission.
Morning Dorset Lady
Thank you for sharing.
I have to admit i'm very envious of what you have achieved. I think thats an amazing achievement given my quest to reach that elusive 0.
I agree that my body may not be ready yet.
Or at least my adrenals aren't.
Can I ask though.
Did you change your diet like I have or cut out alcohol for instance. Is there any tips that you might be able to pass on?
There are so many factors when it comes to PMR.
I think age and gender may play a part with a little bit of luck and a good amount of determination.
🙏
Didn’t alter my diet, or lifestyle really, just be sensible and don’t eat or drink to excess - same as whole GCA journey really.
Luck, age and gender may come into it, but think it’s probably more genetics……some people get through medical issues better than others. I seem to be one of those people…which I realise may be very annoying to others that don’t, but we are what we are.
Unfortunately there is no magic pill….
but this link to an article written a few years ago with help of patients (not with GCA/PMR but another AI illness) , may give you some guidance to help with your adrenals -
healthunlocked.com/pmrgcauk...
Hi Dorset Lady. Sorry for the late reply on this.Today is the first time i've had the time to read the articles on Steroids and activating the Adrenals.
Very interesting I must say and explains why I am feeling so tired lately. I thought it was just the discomfort that was doing it but there seems to be a lot more going on in there.
Thank you for sharing that.
I need to navigate my way around this hub. Im sure there is a wealth of information on here.
Ive decided I'm not going to take the MXT and see if I can get to zero naturally. I will try as long as my body lets me. its borderline now though I must say. I am on 2mg so I am very close.
Thanks to you and others on here I don't feel so alone with it as no-one really knows what i'm talking about.
So for that I am very grateful. 🙏
Good move on the MTX front, don’t really want to add in another drug when you are so low….
Exactly. It certainly helps to hear from others who are on the receiving end and not doctors who are happy to prescribe regardless.
Yes, I started at 60mg for GCA and after 3.5 years was on zero Pred. However, it will be governed by your autoimmune activity and adrenal function once you get to low levels. There is no magic bullet; just doing what your body dictates really.
Really I shocked , with your experience and of dorsetlady .Dose , GCA take so much time 3.5 years (ofsuffering) or more to go to O from 60 mg prednisone dose !My wife (70) have started from 60 mg , 4 month back at present on 10 mg with weekly actemra That mean she will have to suffer at least 3 -4 years , more struggling with GCA , prednisone even , if she is lucky , REALLY SHOCKING 😥
Do you feel any chances , she will be free within one year with combine treatment?
Personally I found the time before diagnosis much more difficult than the time on the medication.
If you don’t know my story - because of a late diagnosis I had already lost my sight (right eye) before treatment- hence the 80mg starting dose. The first few months were difficult, but that was due to me adjusting to mono sight, not to suffering from GCA symptoms.
You cannot rush the illness or the treatment, but if you (or in your instance, your wife) is on the correct level of medication , and the illness is controlled then you should be able to lead a relatively normal life.
No one can say when your wife will be off medication, GCA is self limiting….but I doubt it will be a year even with Actemera.
I think you both have to accept that, and not consider it as “suffering and shocking”…unfortunately that attitude is not helpful.
The first few months of being on high doses of pred for GCA are really scary but things get much better as the amount reduces.
Everyone is different so it's impossible to say how long any individual will need to take meds. The standard guidance in the UK from NICE is "usually 1-2 years".
cks.nice.org.uk/topics/gian...
From personal experience, my mum was diagnosed with GCA and was off pred in 18 months. But some people are on meds for much longer. My consultant told me that there are degrees to the severity of the illness, but I'm not sure if any research has been done into this.
Rather than put a timescale on it, it's better to focus on a safe taper and know that, if your wife is not feeling great on high doses, she will feel better as they reduce. Best wishes to you and your wife.
Rajuguide - try not to think of this long term. Deal with each day, and remember, you have just said that your wife started on 60mg and is already at 10mg with Actemra after only 4 months, that is really good. I was diagnosed last Oct and also have Actemra, but am struggling trying to get down from 10, so there are always positives to look for. But it doesn't help you or your wife if you are worrying about the future. Try and find a positive each day. They are always there, however small, getting dressed, being able to walk for a few minutes, every act is a positive.You sound like a really caring husband which must help your wife enormously.
Yours words have motivated me and my wife too . really now we feel we should be always positive, it will only going to help to fight GCA in long term Each trouble free day we should think our victory on GCA and should thank God
Thanks Sophiestree For motivate us
🙏 🙏
In what way is she suffering now? I wouldn’t say I was suffering terribly for 3.5 years. Yes, my life changed completely in that I couldn’t work any more and my body changed but that’s life isn’t it? One looks for the positive side to what one is left with. Yes, high dose wasn’t pleasant at all but that doesn’t last forever and it’s better than being blind or having a stroke. As soon as I had the correct dose of Pred, my GCA symptoms stopped. Do you mean to say your wife’s haven’t?
Everybody’s progress is different but it would be unusual for the autoimmune activity to have stopped in a year. My experience improved after I stopped looking for the end point and got on with living each day.
Just to add, if she is on the right dose and not trying to taper too quickly, she should feel better. There is always a bit of adjustment with each taper, and we really encourage the slowest taper once low doses are reached. "It isn't slow if it works".
I know of people, (they aren't posting any more). I think it is in fact the normal way, and the way that I will wean off, if I ever do wean off successfully. I doubt that you will find many people posting here who have weaned off simply because they have moved on with their lives. There was another forum I was on for some years where there was actually a running thread for people who had reached "Club Zero" where they could kind of bid goodbye, but leave a lasting record their PMR had gone into remission. The secret is not to let your doctor make you go too fast, but just go at your own pace. I also don't believe that any additional med will help get you off pred (TCZ may be an exception) if your body is not ready and you are simply going to be taking another med with its own significant suite of side effects.
Yes, I was able to wean myself off Prednisone after 6 yrs using the Dead Slow & Stop method from this site. No other natural aids or medical help.
I am on 1 mg and try to ween myself off by taking 1/2 mg every other day but my feet hurt so much when I do this. This is OA not PMR. Also whenever I do this I find I get lots of body aches and pains (back, sides, etc). So I guess I am a wimp. I am pretty sure my PMR has gone... I won't miss PMR but I would miss this group.
For your OA go to the Arc site and read up on Flexiseq (bio-logical gel - works like WD40) it keeps me going with knees, ankle and hands. Expensive but well worth it.
Thanks, I will try anything. Will get some tonight at Boots. Thx. I've walked 10.5K steps so far and my feet (tops) are killing me.
Sorry jinasc but what’s the Arc site?
This will give you info on research and production of Flexiseq - versusarthritis.org/about-a...
Thank you DL - I’ll have a look 😊
Not sure if it’s what jinasc meant….but it’s a starter…
I did and thanks.
very interesting product. It seems to act like deep massage and lubrication. No drug component but able to integrate with the cartilage and lubricate so relieving pain. Presumably no use if damage progressed to bone on bone situation.
No it wasn’t for me before my ops, but I am trying it again with my other shoulder which is “nigglesome”, but not a real issue as yet….hoping to keep it that way.
good luck with that. Don't need anything like that yet fingers crossed.
No massage, you specifically do NOT rub it into the skin but allow it to dry on the surface. It is during this drying process that the lubricating molcules are apparently penetrating the skin and starting to move towards the joints. I've used it with success on my knees, which have fairly severe arthritis, and am now walking normally after recovering from separate and different injuries to my knees last year. Flexiseq was the final key in the puzzle which seems to have released me from the need for knee replacement! Although one starts by using it twice a day I find I only need it once a day now.
fascinating product. Seems they discovered this property almost by accident. So glad it works so effectively for you. It is something to remember in case of need. thanks for the heads up. Who knows what is around the corner with what we have. Just finished for the day and from what I was able to do I gauge that I have lost a third to half my strength upper body and back and at least a half of leg strength in muscle atrophy in 4 months use of pred. Not good.
That's interesting...
Prior to starting Prednisone, I had noticeable muscle wasting in my arms and legs. Once Prednisone reduced the inflammation, I was able to start slowing building up my muscle strength again (walking, general chores around the house). I'm probably around 90% back to full strength, and feel I may be close to hitting my peak until I'm done with Prednisone. I've also recently started doing light weight dumbbell exercises to hopefully regain even more strength back (4lbs) - haven't noticed any differences yet. Truly amazing how certain drugs can affect each of us differently.
there's nothing about you Call_ Me _wally so can you give us some details about how far you are on this journey, what dose you are on, what you have etc. Would be helpful in holding a conversation with some relevance
Currently on 7mg for PMR, that was diagnosed at the end of May, 2021.With respect, my reply to you was nothing more than a comment, wasn't even expecting anything back really...
that's ok. but if you join a post you should expect a response. After all you are reading and people are here to share what they are experiencing and try to learn from others experience. You said you found my observations interesting. Then you told me what you were at but no time frame so how do I know what relevance that has to me. You said PRIOR to pred. you had muscle wasting but surely you meant after pred. You don't give age, you don't say what dose you started on. You don't tell me how you reduced so fast. You've only been on it a month longer than me but you say you slowly rebuilt your muscle after the inflammation was suppressed. I haven't been able to start thinking about that till now so I am therefore very interested in how you managed. That's why I asked for more info since this is a sharing platform That's all Call_Me_Wall. Hope you can tell me more.
I was 3 months with PMR prior to being diagnosed - so no meds until last week of May. The reason for the delay was Carpel Tunnel relief surgery in both hands (March, April), and my GP wanted me to wait until both wrists were healing somewhat so there wouldn't be inflated inflammatory markers in my blood work. It was during the 3 months of no meds that my muscle wasting took place. I hadn't even noticed, it was my GP who told me. The same day, a friend of mine came over to see me, and thought I had cancer. I knew I was in rough shape, but didn't realize it was this bad. This was about a week prior to starting Prednisone. He scheduled me for 15mg (2wks), 10mg (2wks), 5mg (2wks), then stop. While on 5mg, I could tell PMR symptoms were coming back, so I continued to take 2.5 mg for a week, and then had blood work done. At this point I was experiencing full PMR symptoms again, and my blood work showed increased inflammatory markers for PMR as well. I went up to 7.5mg for another week until my GP got back from Vacation. When he returned we agreed with starting at 10mg (4wks), 9mg (4wks), 8mg (4wks), etc., that was July 26. If you calculate that out, it should indicate I've been on 7mg for 1wk and 1 day. It wasn't until a couple of weeks into 10mg (Aug. time frame), that I began gaining my strength back. As I mentioned prior, walking, doing house chores were key for me to start seeing the changes in my strength. I keep a spreadsheet of all my blood work results, and Prednisone use by date. I don't want to say how I feel now, because I don't want to jinx myself.
Thanks CMW. helpful. Sounds like you are a lucky one who may be able to taper off but from what I have read and learnt here it may be you have flared because you tapered too fast. I have GCA and PMR so can't risk too rapid a reduction. That means a higher dose for me for longer to suppress inflammation. Now it is down I am trying to reduce but early days and wasting still happening. Last few days have been good so am hopeful I can start exercise to rebuild. Understand about the jinx so good luck dropping those 7mg.
I fully expect rough days ahead, and just want to enjoy how things are right now.
Sorry, forgot to add. Yes, the first round of Prednisone was too fast a taper, and I had my doubts it was going to work. I didn't want to under mind my GP so I did what he asked. Something people need to realize is that not all GP's are familiar with PMR. I knew my wasn't, because I asked him. So for him, this was a learning experience as well, and I mean that in a positive sense. Sometimes, in situations like this, it's good that they fail, because they'll know next time, and learn from it.
Good luck to you!
I wish you well too but I disagree with you on the learning experience with Doctors. I don't think it is good they fail. If you willingly, knowing the pain you were in from PMR , decided to experiment with getting off pred. quickly and so risk a flare up of the disease that is one thing. If you knew about PMR and the Doctor didn't then it is unacceptable of him to experiment. It isn't about undermining the Doctor but being concerned they don't know what they are doing and therefore experimenting with our health. It is unethical
Sorry, where did experimenting come into this?
My GP was following the guidelines from whatever medical journal he uses.
I've read other people posting here that they were given the same 6 week schedule from other parts of the world - just too many discussion points that come from this point alone, so I won't comment further on it.
GP's prescribe Prednisone for many different types of illness to their patience's, and they generally know the risks involved (if they've treated the illness prior). However, getting the proper dosage for any illness/patient can come down to trial and error because everyone's different, the same way Prednisone has caused your strength to weaken, and mine to get better. Treating PMR is no different when trying to get the correct dosage, as you well know - there is no specific schedule that is 100% guaranteed to work for everyone.
cheers. There is certainly an interesting line to take on this. I know that when in severe pain anything is better than the continuation. Once one is in the euphoric state of release maybe the thought of coming off quickly is an option and maybe some can do it. A six week schedule would likely cause problems as the adrenal function would have stopped so the last stage from 7mg down is going to be a roller coaster or a train crash or without problem. It's a sword of Damacles situation. Once on it the schedule to extricate oneself is engaged and there seems no fast way from what I've read that can achieve that. That's why I used the term experimenting, because I have seen and read no example yet of someone being able to get off this drug in 6 weeks.
I totally agree with you, and you could have added a lot more information why 6 weeks doesn't make sense. This is one perspective (and a very good one). There's other ways to look at this from the GP's side. I'd assume someone must have been successful using the 6 weeks method - even though I've never seen it posted here either.
Not in PMR they wouldn't be. PMR is a chronic disease lasting years and ongoing in the same way RA or other rheumatic diseases are. I, too, was given a 6 week taper exactly the same as you had because the rheumatologist didn't think it was PMR - and pred on a 6 weeks taper like that is often used to manage flares in inflammatory arthritis or lupus etc. Within 6 hours of the first dose I was pretty much free of pain and able to move freely. Within 6 hours of missing the first 5mg dose I was in as bad or worse pain as pre-pred - and I had had 5 years like that. I had a dreadful flare up of the symptoms and have only once managed to get below 5mg since then, some 12+ years.
My comments were only referring to GP's, not specialists.
First thing my GP did was refer me to a Rheumatologist. Had the appointment been 2-3 weeks from the referral instead of 5 months, my prescription would have been changed.
GP's first case dealing with PMR, even the Pharmacy located beside my GP's clinic (has 7 GP's) had never prescribed Prednisone for PMR. I checked the CRA (Canadian Rheumatology Association), and I couldn't find a single reference to PMR on their website anywhere. My GP worked with what he had, I can't/don't put any blame on him. My view still stands that GP's shouldn't be expected to know everything and it's a learning process for them too. Especially when something doesn't work as advertised in whatever medical journal they use (after all , they are only General Practitioner's).
And now he knows, so if he gets another patient with PMR, he'll know what to do - I'm glad I helped!
No you can’t expect GPs to know everything - but they have access to the same information we do via the web including all the guidelines from the relevant experts and -perhaps more importantly - the availability to contact consultants within their own medical circles. Yours obviously did the correct thing by referring you to an expert.
I tried to explain, he used the information he had. Why would he think it was outdated or incorrect? I was the first one with PMR. So now he knows, what's the issue here?
Example (from Prof. Dasgupta 2010 guidelines):
Duration of steroid therapy:
• this is usually one to three years
• some may require small doses beyond this
• steroids may be stopped if continuing lack of inflammatory symptoms
• raised ESR/CRP without clinical symptoms is not an indication to continue corticosteroids.
"steroids may be stopped if continuing lack of inflammatory symptoms", everyone here knows what it means, but what would it mean to someone who's not familiar with PMR?
I don’t have an issue with what you said.
I was agreeing that GPs don’t know everything….just saying they can find out about diseases on their patient’s behalf that’s all.
please CMW we aren't at odds here. You have PMR and are now like it or not trying to taper. Join the club. Some of us are trying to work out how this clever but powerful drug works. Doctors for better or worse are our first port of call. Many of us have however learnt to trust ourselves first and the medical profession second. I've known about prednisolone for 40 years or more. I saw the damage it did to my father. If Doctors used it then and I knew about it there is NO EXCUSE for a modern practitioner to be ignorant of its use and when someone has been on it for6 weeks the potential harm its stopping could cause. DL and others only wish to share their experience for which I am grateful. I don't know why you defend the indefensible so strongly, but I respect your need to do so. I however will always want to know what is being proposed and how it will affect me before accepting a procedure or drug regime. I was extremely wary of pred. but as I've already said, there was no alternative, and I was truly desparate. Now I am in its grip and while I am trying to reduce and lessen its affects, I am stuck with doing this in a controlled amnd systematic way whilst watching it wreak havoc with my strength and control. It's not a pleasant scenario but I am up for the challenge. I want to make jumps but with GCA to contend with I daren't. It is that simple really. Everything I can learn from others has value.
GPs don't have to know everything - but they should know how to find out about the commonly seen disorders (and PMR is NOT a rare occurrence in over 60s). My usual GP didn't get it - but there was another GP in the practice who did and who taught him to use google to identify things on the basis of symptoms. There is no shame in that.
The contention here is if I have an issue with my GP, and the answer is NO.If I had to choose between my GP and Prof. Dasgupta right now, unequivocally it would be my GP. No disrespect to the Prof, but I have an excellent relationship with my GP that I wouldn't change for anything. Can we drop it, or do I have to start cutting and pasting the number of posts from members here that have gone through the exact same thing with their GP, and they have no issues either. I'm done.
I agree with you - even if you seem to have misread what I meant ...
I don't understand why nobody gets it that GP's prescribe Prednisone to their patients for all sorts of diseases and illnesses everyday. Dosage, period of time, taper, patient history, type of illness, pre existing conditions, etc. are all the things that go into deciding what the prescription should be. He diagnosed me with PMR, so he knew what it was. He checked his information for prescribing PMR and it said 15, 10, 5, stop (with 2 week taper on each). There was no 'Red Flag' for him to say "hey wait a minute, that doesn't seem right - I should consult someone". His evaluation seemed logical at the time (start high, going lower with a taper). After I relapsed he re-evaluated, and at that point he did some research (I had input). As far as I'm concerned, that seems pretty normal to me.
I'm sorry you had a bad experience with the exact same prescription/schedule as I did, but I honestly can't say mine was a bad experience, more like a learning one for both of us. At the most it was a 2 week setback compared to the Prof. Dasgupta's guidelines.
At the appointment when we got the prescription to my satisfaction, I sincerely thanked him, and I had tears in my eyes, he said thanks - we make a good team. How can I not love the guy...
You're welcome.But you will discover - IF you listened to us - that we do get it that pred is used in different ways for different illnesses. Which is the whole point, We aren't discussing the use of pred in general - we are discussing the use of pred in PMR.
No idea where he found that taper - but it does NOT apply to PMR.
so you are on 7mg now and presumably on a slow taper. Are you in UK ? would be helpful to fill in your profile CMW. Good luck on the journey.
No - Canada
i can see that now from last post DL . Might explain but disagree I think doctors have a responsibiity to stay updated and informed. PMR is hardly a new disease.
HiI haven’t come completely off pred. I’m down to 1.1/4 , it’s taking me 5 1/2 to get there and not been easy. I started at 20 mg for PMR in May 2014 and had immediate improvement. Then down to 15 mg after that it was trial and error reducing. But do not take any other meds. Fortunately I found this site and started the DSNS approach and so much more information as well. I think we are all different and what suits one may not suit another, but one thing for sure is you have to take enough pred for the condition otherwise you will have flare ups and be back to the beginning. Slow is best in the long run.
Good luck to you.
Hi 9lives. Sorry for the late reply.
To get to one and a quarter is a massive achievement. When you say it hasn't been easy resonates with me. My path appears to be similar to yours. The only difference is. Ive been below 1mg before but I wasn't aware of the DSNS approach until recently.
I had a really rough time and ended up with oedema in my right hand that I couldn't use. I'm not sure if it was a flare up or steroid withdrawal syndrome. Not sure what the difference is tbh.
But the point I want to make is, and I hope it really works for you, is the DSNS approach. Im at 2mg now and I think I will try introducing 1.5mg instead of 1 this time round.
I'm really keen to her how you get on with your quest to reach zero.
I wish you the very best of luck with that. 🤞🤞
Thank you for your reply, sorry to hear about your struggles too.It’s not an easy ride is it.? Thank goodness for this site.
I was thinking and it’s only a suggestion that maybe instead of you going down to 1 1/2 , from 2 maybe try going down to 1 3/4 , as the smaller the dose the harder it is to reduce. As they say to aim for a 10% reduction , which gets difficult on low doses.
This is how I’ve been doing it. But we are all different. Be interesting to see how it goes for you x good luck xx
Thank you for your sentiments. One thing we all have in common here is our struggles. This site gives you hope and more confidence going forward.I have found there is no rhyme or reason why i feel the way i do on some days.
I look for patterns in what I do and the things I have ate or drank that day too. So I can try and eliminate certain activities or food and drink if they trigger a flare the next day.
I will certainly consider the one and three quarters given your experience.
Are you in any discomfort now I wonder?
For me, working as a carpenter with early starts, presents me with all sorts of challenges at the moment.
I will certainly let you know how I get on next week when I am due to reduce below 2.
Thank you for your personal experiences. I really think we can learn a lot from everyone on this forum.
Something Rheumatologists could learn from also in their quest to find a cure for PMR and GCA.
🙏 xx
Hi I think sometimes we can over think things but I’ve learned over time what I can and can’t do. The trick is to rest a lot in-between doing tasks etc and not push yourself too much. I’m not in any pain or discomfort now . It’s almost as though I don’t have it anymore but I’m not taking chances so am still reducing slowly and see how things go.
I agree with your comments about rheumatologist!! Good luck with your reduction next week.
PMRproAmbassador
Many, in fact, most I would say. As I have said elsewhere - I'm not sure what you mean by "holistic" - that just means considering the whole picture rather than a part of it'. It doesn't mean not using medication.
"MEDICINE
characterized by the treatment of the whole person, taking into account mental and social factors, rather than just the symptoms of a disease."
Dietary measures help but there is no one size fits all.
I have been thinking about this a lot. I believe some people want to find a way to encourage the body to stop the inflammation without pred and its side effects. The problem is the autoimmune disease has such a powerful crippling effect on the whole body and the risk of heart failure or blindness that the inflammation has to be suppressed with vigor and there just doesn't seem to be anything else that works so effectively. Once on the drug the period of exposure becomes critical as the adrenal function atrophies and stops. If there were another drug that suppressed inflammation quickly without the side effects of pred. then that would be a blessing. Surely the critical phase is the first 3 weeks when daily or weekly records of progress towards suppression should be monitored and dosing regulated very carefully to try and achieve maximum results in the short term. If maximum efforts were made to manage this phase I think a lot of misery and uncertainty would be eliminated and the long term damage to the individual would be lessened. The problem is that we have neither the medical or structural resources to support this. Once on the pred. path we have no choice and must taper as best we can.
Like I said, I'm good with the results, you seem to be the one that can't accept it. You need to get over it and move on.
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