I am a woman of 64years old, I got the diagnose PMR one month ago. My doctor says that I must begin with prednisone. I refuse. I am very well aware of the side effects.
I am very stiff in the morning and I have severe pain. I can hardly walk in the morning.
I feel very sorry. I have never been ill before. What can I do? Are there any other
remedies on the market? I hope so!
No, the only option to manage PMR at present is pred - and there are no alternative or complementary therapies that will do the same. You may be able to help with an antiinflammatory diet and other things but they only take the edge off. Normal painkillers rarely stop the pain.
I know what I'm talking about - not out of choice I had PMR for 5 years with no treatment at all, the doctors I saw didn't recognise it. I gained weight because I couldn't move to exercise, I was constantly in pain and I was unable to lead a normal lifestyle, for some of the time I was almost housebound. At one point I couldn't stand up on my own from the toilet, I could barely toilet myself if it comes to that. If I couldn't drive somewhere and not have to walk - I couldn't go. When, for another reason, I had to stop driving for 6 months, I was virtually housebound.
Pred let me move normally 6 hours after taking my first 15mg dose.
Pred has over 80 listed side effects. Some people have some, some people have none, no-one has all of them. Pred can lead to weight gain - so can PMR. Weight gain can lead to raised BP, raised cholesterol, pre-diabetes - just from PMR. I could write for pages, I have done elsewhere. I've had my share of side effects - but at present I have none I am aware of. I have lost all the weight I gained with Medrol, my hair is back to normal, I feel well.
It isn't as simple as pred is bad, no pred is good. Not taking pred leaves unmanaged inflammation rampant in your body and that in itself leaves you at risk of several things including cardiovascular disease (including aortic aneurysm and peripheral vascular disease) and even some cancers. The constant pain is draining - some doctors will tell you it will last a couple of years. After 12 years I have just had a flare and the average length of time is about 5 years.
It is your choice - without pred you will feel at least as bad as you do now for an indefinite length of time and are putting yourself at risk of other things. With pred you will get your life back to a great extent - it won't be perfect, it will be far better. There are ways of addressing some of the side effects but I never found any of dealing with PMR.
As I said above, know your own body and manage your pain. A lot of side effects you have mentioned you won't experience if you only take them for short periods. My GP prescribed a 2 wk course of 15 mgms but I preferred to start reducing after a week. I may have to stay on a low dose for a bit longer but that won't cause any dire symptoms. Again it's only the patient that knows what pain they are in and my experience has also been Dr don't know much about it but also we don't know why it attacks certain people and we aren't sure why steroids work but they do.
Seeing a consultant every no of weeks, months on a dose they prescribed, with no sliding scale seems odd to me as you maybe taking a much higher dose than needed.
Good luck Chris
I doubt there are many people who know their body much better than I do! But since you probably haven't read the full story of my 12 years with PMR I'll tell you now that without pred I was housebound and I started with a 6 week taper - that was wonderful. Until 6 hours after not taking a 5mg dose when I was back in the same state as before, unable to get out of bed almost. I have always attempted to reduce the dose, the dead slow reduction approach was what I worked out to get to below 9mg without being immobilised by pain.
With prednisolone originally and prednsione now I have next to no side effects - certainly none I can see. Within weeks of starting Medrol I had a full gamut: weight gain, moonface, buffalo hump, raised cholesterol, black beard and and and. Within weeks of stopping it, they all started to go away. And it didn't work on the PMR particularly well.
But using 2 week tapers of pred won't work for the majority of people who have PMR. So trying to not develop side effects by using them for a week or two at a time isn't an option. And I suspect the research rheumies I work alongside as a patient research partner might not agree that what you have is PMR if you can manage it long term like that - it certainly doesn't fit the criteria they have drawn up.
Hi,
Where can I read your full story, I have been on Medrol and Pred for 4.5 yrs now and currently 20 mg of pred isnt doing it, the only thing is a Volteren 100 mg every couple of days gives a good deal of relief.
Thanks.
I really don't know! I tell it every so often but it really isn't much more than what I said above.
However - if 20mg of pred isn't "doing it" after 4.5 years I would doubt what you have is PMR, especially if Voltaren does help. It is very unusual for other pain relief to do much in PMR, even the antiinflammatory NSAIDs - which should not be taken alongside pred, especially a the higher doses. Other things can resemble PMR and 1 in 6 patients who are initially diagnosed as having PMR later have the dx revised - often to late onset RA.
I am sorry but can't believe they send men to outer space, clone animals and so much more but they can't finda way to help us with muscle pain!
Good advice from PMRPro. I would just like to add that I had no side effects from prednisolone apart from a slightly puffy face. No weight gain, diabetes, high blood pressure, thin skin etc etc. No medications come without risks but it has to weighed up alongside the benefits.
Nor me after the first episode when I notice a ' moon face' guickly reduce. Just because dr says take these for a few months, not monitoring your condition or recommending a sliding scale seems odd to me. Take control. You will I can assure you, know more about the condition than your dr.
Good luck
Chris
Why not try pred for a week? You can always stop it with no problem after such a short time. You can then see if it helps or not, if not you may not even have PMR. If it does work it is it like a miracle. I had never been ill since I had measles when I was ten years old, so it was a real shock. I could not have carried on life without the steroids though.
I understand exactly how you feel about pred. I've been taking it for about ten months. Have reduced from 15 to 5 mg and done as muchas I can to keep healthy. Side effects I've experienced tend to be the invisible ones, like increased blood sugar, increased ocular pressure, possibly bone thinning, as well as for a while muscle weakness and purple bruising on my arms. I anticipate that all these effects will continue to diminish as my dose is now so low. In the meantime I've enjoyed 10 months of probably 90% lessening of pain and stiffness. Pred is what keeps many of us on the forums, pred and pmr are the two heads of a dragon, but it's what gives us back our lives. Learning to tame the dragon is an adventure but it can be done.
Hi HeronNS,
I too just found out that I am borderline with my ocular pressure so my opthamologist is sending me to a nuero opthamologist. He said that the prednisone can cause this and glaucoma & since I have some vision change he feels better sending me to this specialist.
shastring
I wonder what your starting dose might be? I am the same age as you, will be in June! I started on 30 mg 2 yrs ago and like others the relief Pred brought straight away was incredible. Reducing the medication is the next battle and I now am taking 7.5 mg. A few symptoms on the way, such as slightly fuller face (an improvement?!), increased facial hair - the downy stuff on the sides! My bone density scan taken after a year showed as borderline but I have no way of knowing what it was when I began the medication. Rather than gain weight I have lost it. It's draining to be in pain, discomfort and stiffness in muscles. I could not switch to being without Prednisolone much as I'd like to - to return to fatigue which I suffered while trying to lead a normal working life. Now I work 3 days. I do Pilates - keep moving - eat well - anti inflammatory foods/Mediterranean diet as much as possible. I can't wait to be rid of PMR. I wish you well on your journey.
My doctor did not want to put me on pred. Instead, he prescribed another cortico steroid called Deflazacort which reputedly has less side effects. It worked within hours but the few trials that have have taken place show that it is less potent than pred resulting in having to take more. After coming up to a year now I am unaware of any side effects but I have no way of knowing whether it would have been the same with a lower dose of pred.
No. I have,tried every painkiller on the market knowing it's only prednisone that will work. When I first had it 3 1/2 yrs ago the relief was enormous . When I noticed my ' moon face ' I quickly reduced to a level where it went away. Once I got to grips with the drug I managed it myself with my G Ps assistance. I am a retired nurse and worked in a GP hospital so know them all. By that I mean they they trust my judgment . I have only been on steroids a couple of times as I like you don't like to take them. I had a flare up a few weeks ago with a virus ( don't know if that set it off nor would the dr) . Get to know the drug yourself . Ask for not only the 5 mgm tablets but 2.5 mg, 1 mg and 0.5 mgm. So you can adjust the dose, either up or brown yourself . Take control only you know how you are feeling and how much pain you are in
Chris
Prednisone works but at a terrible cost for me.......I am using Graded Motor Imagery at the moment...I have failed L5/S1 surgery (twice) Rheumatoid & Osteo....and GCA......I'm monitoring myself carefully ....my GP is following and hospital on standby but absolutely feel this is the right choice for me.....I'm still caring for myself and back to mowing my lawns gardening in small bursts.....this is only my story and I am not suggesting anything.....PMRPRO is absolutely correct about the Golden Seal treatment to avoid blindness and other Catostrophic organ failures.....u must do what feels right for you....good luck & hugs 😄
You sound exactly the same as me when my GP first suggested I had PMR. I was adamant I wasn't going to take the steroids. As Im only 51 my GP referred me to a rheumatologist and I was equally adamant at that appt that steroids were not an option for me. However during a thorough examination and discussion where she tested how far I could move, it became very clear how much I was already restricting my movement. That bit really struck a cord. I had been worrying about what 'might' happen in the future but this was actually already happening NOW. She also made me aware of some of the additional risks of not treating it - similar to PMRPRO but she wasnt as informative or detailed as all the lovely experienced people we have on here! The advice and knowledge on here I have found to be invaluable. So she suggested I take 15 mg pred for 7 days to confirm that the diagnosis was correct, although she already said I had 'text book' case, apart from being young to get it. She said if I decided to continue after the week I could get more from my GP.That was on 7th March. 'Before' the end of the week I had already contacted my GP to get more as I was concerned I didnt want to be without them after feeling so much better! I have been taking them since and am just in the process of my first 'slow' reduction down to 14mg (following PMRPRO approach). Again at the beginning my priority was to reduce asap, but Ive now learned through here that a slow reduction is much better than the bigger reductions as suggested by GPs etc. I appreciate I am at a very early stage and maybe in a honeymoon period but so far its going well and I'm very grateful that the medication exists. However, alongside the PMR/pred I am also looking at my lifestyle, not only physically but also emotionally. I'm a counsellor so the emotional stuff is a big part of my life. Through that process I have now understood alot about what this physical condition is about for 'me' and have let go of so much emotional responsibility that I hadnt even realised I was dragging around. I appreciate that wont be the same for you or others but maybe worth also considering what PMR is for you? Alongside taking the steroids I am also still open to considering other treatments (not sure if they exist!) but as I say also making positive changes in my life. The insight I've got from being forced to actually listen and take notice of my body instead of always being in my head have been life changing for me. That process started for me the first day I asked a question on here and allowed myself to receive support from others. I hope you can find that support here too. Best wishes
Hi. I too was horrified at the thought of taking steroids.however as I was totally immobilised within weeks had no choice but to try. Instant relief! Have not experienced any side effects,have been able to maintain all physical activities eg swimming dancing walking.Initially I was extremely careful with diet and lost too much weight! Have used the dead slow stop reduction method,after 3 yrs down to 0.5 hope to be off preds soon. You will hear many on this forum state pred gave them a life back. Certainly true for me.
Its a dilemma! I didn't have Pred first time when I was diagnosed at 48. I am now 54 and the PMR came back last year. This time I fought against it for 4 months but became unable to work or care for myself. Finally agreed to a short trial dose. Took 30mg starting dose and within 48 hours was about 70% better. I did have some side effects but I have a lot of other stuff that had to be managed. I am glad I tried it, my pain level is so much better now. Wish you luck.
I am of the 'healthy neglect and it will go away' frame of mind and never take anything if I can avoid it. However, after three months of messing about with Ibuprufen and non-inflamatory foods etc. I took my first dose of Pred (15mg) and could touch my toes within four hours. I have no choice but to keep moving, I run my own very busy business which involves a lot of running around, but with Pred I had my life back. That was last March and I am now down to 1mg, absolutely text book case. No side effects and ready for anything. On 1mg, I have very slight stiffness somewhere (anywhere, different place, different days) but within an hour it's gone. Will stick where I am for 8 weeks and then see what happens without Pred at all. My advice, for what it's worth, is try it. I don't think you'll ever look back. I am, of course, well aware that not everyone is as lucky on this journey as me but I can only speak from my own experience.
PS also the GP may suggest you taking additional medication to try and avoid potential side effects of the pred- but those too came with their own set of potential side effects! So after getting feedback from this lovely group I decided just to take Adcal, the combined vit D and bone supplement. I am also having natural yoghurt for breakfast before taking pred. Seems to be working well so far.
As Lucy says, don't accept any other drugs that might be offered, like bone meds or stuff to guard the stomach, because most people can manage any pred side effects which might affect bones or stomach through more natural means. Make sure to add VitaminK2 to any Calcium D3 protocol. We almost all need K2, and it's the vitamin which guides calcium into bones where it belongs.
Hi Bergsund,
I will offer you another perspective.
I do know of a lady who is managing her PMR without prednisone, and when I last spoke to her a couple of months ago was continuing to do well and continue with a very active life.
She explained to me that she was doing it with the aid of a PEMR machine, which is basically a mat you lay on which emits a pulsed electromagnetic field. This may sound like alot of hoo-ha but I was so impressed by what she told me and by my own research, that I bought one of the machines for my own use.
I am not using it in the same way as she is for a total replacement to prednisone as I had already been taking pred for 18 months when I bought the machine. I am using it as an additional aid, rather than replacement to pred and I find it invaluable. I have progams that both relax my muscles when they are in spasm and also increase the blood flow. Both of these things help alleviate pain.
Even before I bought the machine, I managed to keep on a very low dose of prednisone - 4mg at present. I eat an anti- inflamatory diet with no gluten, or nightshades, and take anti- inflammatory supplements such as fish oil and a strong form of turmeric called Curamed. I also take Calcium supplements, Vit D and magnesium to protect my bones. I think all these things combined do make a difference.
My blood work is normal and I have no loss of bone density in the 2 yrs I have had PMR. The only side effects I have suffered is to put on about 5lbs in weight and I have some loss of muscle. Both of these things are easily fixable.
You have been given a lot of information here from various mambers of the forum. We must each choose our own path through this quagmire called PMR.
If you would like to contact my friend who is using the PEMR machine without prednisone let me know and I will private message you her contact info.
Whichever way you choose to go, I wish you all the very best of success!
Hi Queenfisher, yes I would like to contact your friend who is using the PEMR machine without prednisone. Thanks for the information.
Hi, I’m new here and wanted to share my story and hopefully help answer your question.
I’m against taking any drugs, even over the counter ones, because they are all toxic to your body. However, when I was diagnosed with Temporal Arteritis 3 years ago I learned that blindness and stroke was a possible outcome if it was left untreated so I started on 60 grams of prednisone, tapering down over 18 months. My symptoms were gone in 2 days after taking Prednisone (jaw claudication and tender scalp) but a week later I woke up with vision problems and called my doctor. He said to go to 80 grams for a week then 70 grams for a week then back to the 60 gram tapering schedule he gave me initially.
Two months after finishing my last dose my blood work showed elevated CPR again so I went back on prednisone for another 18 months. This time, the doctor added Methotrexate with the Prednisone. Before my original diagnosis I was in excellent health and very fit and active for a 63 year old. Now I felt like I had aged 20 years in just 2 years. The doctor’s told me they don’t know what causes these autoimmune disease and they don’t have a cure and can only suppress the symptoms with drugs. I had no energy and felt sick for 5 days after taking the weekly doses of Methotrexate and all I could do all day is sit. So I decided to spend my time reading and researching my condition and other autoimmune diseases.
The first book I stumbled across was by Dr. Thomas Levy – Curing the Incurable. It’s a bit of a history on how vitamin C has been used for the past 75 years to cure everything from polio to snake bites. Everything he talks about in the book is referenced. There are over 1200 references you can for search for on Pub Med. I learned here that everyone should be taking as much vitamin C as your body needs by taking it to bowel tolerance. Since only primates and guinea pigs don’t make their own vitamin C to fight toxins we must supplement with it. I was worried about mixing high dose vitamin C with my drugs so I sent a note to Dr. Levy and told him the drugs I was taking. He said I definitely need to be taking vitamin C because the drugs are so toxic. He said as long as you take it a few hours away from the drugs it will not interfere with them it will only help them do their job better. You need to take vitamin C in divided doses throughout the day because its half-life is 30 minutes. This didn’t leave me much time during the day so the most I could take was 30 grams (30,000 mg). I felt so much better after this. The sick feeling I had went away but the fatigue remained. A totally healthy person only needs between 5-15 grams/day so I obviously have some additional free radicals that I’m eliminating with the high dose vitamin C.
I finished my last dose of Prednisone and Methotrexate last November so then started upping my dose of vitamin C. I’m now taking 55 grams/day. My CRP was 0.5 when I stopped Prednisone and the next month went to 8 but has been coming down each month and last month’s was 2. Vitamin C is anti-inflammatory so I believe it is controlling my CRP without Prednisone. But I obviously still have a constant stream of inflammation and this is what I’m now trying to find. My doctor has done lots of tests but everything comes back normal. She tells me she can’t do any more for me and that she knows nothing about vitamin C because they don’t teach that in med school.
I recently read another book about root canals and how every root canal tooth is toxic and these toxins can leak from the tooth into your blood and cause many different diseases. I have one root canal and I’m thinking this is the most likely source of my problem and perhaps is what triggered the Temporal Arteritis in the first place. I’m waiting to see a dentist about this now.
You asked if there are any other remedies other than Prednisone and I believe there are but you have to search to find the information. I would definitely recommend that you learn about vitamin C therapy and start taking as much as you can. A good place to start would be vitamincfoundation.org and I would recommend the book I mentioned by Dr. Levy. His website is peakenergy.com. You also need to make sure you are taking proper amounts of other vitamins and minerals because our food is so depleted now you can’t get enough from just eating right. Andrew Saul is a good source of information, his website is doctoryourself.com. Also, vitamindcouncil.org has good information on vitamin D, which is also very important. I also read two books on the Gerson Therapy which has been used for more than 50 years to cure cancer naturally. It’s about curing cancer but the protocol can be used to cure any degenerative disease. This is basically a cure using food and a few supplements and using coffee enemas to clear out the toxins. You can check out Gerson.org and there are lots of videos on YouTube. Much of the food used by Gerson is vegetable juice and I did try a juice only diet for 6 days and I must say by the 6th day it was the best I have felt since getting the Temporal Arteritis 3 years ago. The problem is that it’s a lot of work and you need to use organic only. Juicing the vegetables allows you to consume massive amounts of nutrients that you could never get if you tried to eat the vegetables rather than drinking them.
I believe there is a natural substitute for every pharmaceutical drug but I have found it’s not easy when you have to “doctor yourself”. You may want to see a naturopath doctor to help with this as well. Good luck.
Mark
Hi Mark,
Thanks for all the information you provide here. I also believe that there are natural alternatives for pharmaceuticals, but as yet we just don't have that knowledge. A while back I remember reading that pharmaceutical companies spend a lot of money researching plants in unspoiled parts of the world such as rain forests to try and find the next "cure". The challenge is therefore to keep ourselves as well as we can, and "doctor" ourselves in the meantime while doing the least amount of damage to our bodies.
I am definitely going to research the Vit C therapy you mention. I used to take a lot of Vit C but for some reason stopped a couple of years ago. If it will do no harm and could speed me getting off pred, I will give it a try!
So glad to hear of your success and appreciate you posting all this information.
Interesting, but Mark, you must confirm the dosages you are suggesting as I note you refer to grams of pred when the correct amount is milligrams (mg).
There is absolutely NO scientific evidence that Gerson therapy works:
cancerresearchuk.org/about-...
I have no doubt that people who have been eating a poor diet may well feel better for some time on this. Some aspects of the diet are downright dangerous however.
I have no objection to people using it or any other diet to try and alleviate the symptoms of any disease they may be suffering from. But please don't suggest it can cure anything - and above all, don't suggest it can cure cancer.
Well there are several hundred living cancer survivors who would disagree with you but if you believe is written in this link then there is nothing I could say to convince you otherwise.
My father died of lung cancer. Knowing there was no medicine that would help he underwent surgery and he took massive doses of vitamins especially vitamin C. He was himself a medical doctor. He died after four years, the last year or two were hell.
Hi Mark. I see you haven't written anything on your profile. Please, if you are going to recommend to members of this forum that they reject the medication recommended by their clinicians, please at least post some information about yourself so that other readers know a bit about you, your experience and your credentials. Thanks! Kate
Kate
I never told anyone to reject medication recommended by their clinicians. On the contrary I said although I am against taking prescription drugs I took prednisone when I was diagnosed with GCA, and did so for 3 years.
I was only trying to answer the question, which was are there any other remedies. I thought the purpose of this forum was to share your experiences and help others who are going through this for the first time. And that's all I was trying to do. I never, and would never, tell someone to do disregard what their doctor is telling them.
However, there are many things one can do to help themselves that doctors don't always share, which was my experience. I had to learn on my own and in some cases it was reading forums like this from people who had some personal experience and I was just trying to share my personal experience here.
I didn't know there was a profile to fill out so I will do this.
Mark
I went from being able to run, to a point where I was struggling to move. It took 2 years to get a diagnosis. I did take pred and within hours my mobility and pain were almost back to normal. I am weaning off as quickly as possible, but although the side effects are a nuisance, it was worth it for getting my mobility back.
So many posts and I think the original poster Bergsund has gone awol lol.
Concerning Vitamin C as a cancer treatment........I worked at an alternative clinic that did high dose Vitamin C therapy by IV infusion. There was a blood test necessary before starting to check that you could assimilate the Vit C (sorry, I forget what the test was called). We had one gentleman go to an expensive treatment centre in Germany and they sent him home saying there was nothing more they could do with him. We kept him comfortably alive for another year with the high dose Vit C. It didn't cure his cancer but it gave him a good quality of life for longer than expected. Our clinic had many of these success stories. I know at one time I had references of the success of the Vit C infusions (not orally, because by the time it has broken down it is no longer effective in most cases) and in one paper it mentioned a large teaching hospital in Montreal, Canada that was going to start their own research on it. So for it to interest western medicine is indicative of it's possibilities.
Cheers
Why would you refuse? Your doctor is intelligent and knows what is best for your care. Don't be stubborn, you'll feel better.
Everything PMRpro has said is spot on. If you want to get as close to the normal lifestyle you HAD the closest you will come is by taking prednisone. I wish there was an alternative. Aleve will help w/the pain really well but it won’t help the inflammation. Also if the PMR is left untreated you increase the risk of it turning into its deadly sister GCA which usually causes bad headaches, permanent blindness & possibly death. There are also things you can do to alleviate the side effects. Taking a GOOD multivitamin helps. Increase your consumption of vitamin D (drink a lot of milk etc...) to negate the loss of bone mass. I’ve read that taking/eating probiotics helps as well. TBH you really don’t want to take on PMR w/out the prednisone. Also stay as active as you possibly can, if you aren’t active now I suggest you start becoming more active. I’ve found that the more I exert myself the better & less stiff I feel. Good luck & prayers in your PMR journey. PMR is an animal all it’s own, all we can do is live w/ it best we can until it gets bored & decides to move on....
If you insist on trying the pred-free route, this may not be the forum for you. There’s a Facebook group that might suit you better.
I was like you refused Pred until I had no quality of life , dr is trying a short sharp dude so I don’t have to stay on them fur too long , have git down to 7.5 in 6 weeks and hoping to lower next week abd I can cope better , I also tired all alternative treatments with no relief . I’m hoping I can be Pred free in the next 4/5 weeks
Living with PMR with no prednisone
Effects of going without Prednisone
First day on Prednisone for PMR
Relationship of PMR and Prednisone
PMR PREDNISONE TAPERING PLATEAU
