When I first learned about prednisone, I was abstracted by the choice before me: take pred with all it's side effects or live with this debilitating disease.
I am not asking for myself because I suffer GCA too: there is no choice but take pred to save my eyesight. What I am really curious about is how people get on without pred. Does PMR last just as long as with? Does anyone continue to work despite the pain?
I only know of one person who went, I think it was about 5 years with PMR before getting diagnosed, but she is no ordinary mortal!
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No she's not!...but like me (18 months before diagnosis/Pred) it was not through choice.
I'm sure many in the past and probably today (unfortunately) who had/have PMR and don't know it so live without the medication.
In the 8 years I been on her there have been a few contributors who have not taken steroids - could count the number on one hand, but have not stuck around to tell their tale
Quite a few came back and said they felt so bad they relented. For me it was 12 to 18months minimum without pred. I was used to living with pain, it was the fatigue that got me as much. And then once I realised the nature of pmr, the possibity of GCA and the damage PMR as a vasculitis may cause I didn't think for one second, once I had felt the relief, I would back track.
Nobody wants to take pred but after four years reading this forum, it's clear that pred is the only way to fight PMR. Ok there are some side effects but they subside. I found that pred gave me my life back, no exaggeration and I thank god for whoever invented it.
I've come across a few people on facebook groups who reckon they just ditched the Pred and are fine, but they are mainly either men, who seem to get over PMR a lot quicker than women generally, or young women, and I suspect in some of the cases it was never PMR in the first place. I could barely function in the year leading up to diagnosis and the disease didn't go away by me leaving it untreated! Nor did it in the two years I deliberately came off Pred assuming it must have 'gone away by now'.
Not backhanded on my part. You have consistently given well informed and thoughtful help here that encourages me to keep going even when I'm at wit's end! Thank you PMRPro!
"Nor did it in the two years I deliberately came off Pred assuming it must have 'gone away by now'." Oh, tangocharlie! Say you didn't! Please tell us how that went!
You could save someone all the suffering of that by way of warning!
Every so often someone appears on the forum announcing they will "beat this" without pred. No-one "beats" PMR - they learn to live alongside it and accommodate its demand for more than half the seat. There are a few who have claimed x, y or z worked - but frankly I don't believe them, they have invested financially in "their" remedy so won't admit failure. Many give in once they have had some time without pred, especially after we have also explained the risks they are exposing themselves to not taking pred or they have tried a few days of pred just to see if it is PMR.
But a simple warning? No - because everyone thinks they will be the person who is different and normal rules don't apply to them!
That's what I (and all the experts and moderators on here) try to do, warn people, but people don't always listen in their determination to get off Pred because they hate it so much.
My story - after 5 years my rheumatologist said I didn't have PMR any more, even though I queried how we could know that. One solution was to come off Pred so 'we could see what was going on' and I was happy to finally get off Pred TBH. I had tried for over 2 years to get below 5 and every time I reduced the dose I felt really unwell. So this time I dropped slowly, only 1/2 Pred a month using DSNS method, and pushed on, but by the time I was reducing from 4 to 3.5 felt very very unwell, like I was dying. My GP was mystified, sent me for all sorts of tests, put it down to the fact I was withdrawing from Pred and I had become 'steroid dependant'. Eventually I twigged it might be adrenal problems and contacted my rheumy who agreed and sprang into action, I ended up in A&E. I was put on hydrocortisone and after about 3 months, tests showed my adrenals were working again, albeit not very well.
By then I had lost a load of weight and the moonface, so I was delighted to be off Pred and didn't want to go back on. I would take a short dose if I needed to do anythng strenuous, like go on holiday. The doctors didn't like me doing that and advised me to go back on Pred full time, starting from the beginning again at 15. That's when I started nvestigating other options and found depo-medrone but it took another 6 months to persuade a rheumy to let me try it. And then they didn't know what they were doing and got it wrong by saying I could only have the injections every 6 months, so I ended up really ill again thsi last Christmas. And just when I thought things were finally going smoothly and I was feeling great the events that triggered my post about Depo medrone quandary happened .....
Thank you tangocharlie for repeating your story again!
I note how you were SUFFERING for MONTHS at the end of your pred final taper, mostly from trying to push your way to zero when your adrenals were not ready.
I'm hoping others see your story as a cautionary tale, and take their time getting to zero pred. It's not a race!
But I did it as slowly as recommended and still had problems. The message is don't persevere if you feel ill for more than a few days of withdrawal pain, if it goes on longer it's either due to PMR returning or adrenal problems. But then what are you supposed to do if doctors are pushing you to carry on and take painkillers and you are determined to fight it or whatever you tell yourself? I could have died. People need to be aware of adrenal problems, it's more common than doctors thought, even though they may know the theory but might not pick up on them as mine didn't. I'm sure if I'd gone to A&E just saying I felt really unwell I'd have been turned away from A&E and sent to my GP, which could have been too late as I'd already been there. I've said several times, this forum literally saved my life when I posted a question about how ill I was feeling and people mentioned adrenals!
Oh, tangocharlie! You inspired a thought (a rare thing). My experience has been that pred is a life saver but a person's outcome also depends heavily on the information doctors should give you but often (mostly?) do not.
You said it so well: "I've said several times, this forum literally saved my life when I posted a question about how ill I was feeling and people mentioned adrenals."
I agree so strongly and would add that without this forum, a huge number of people would have suffered needlessly due to the lack of information.
I went at least two years and probably up to five before diagnosis and would never do without pred. No matter what the side effects I at least have a reasonably decent life again. There us no way I could work even the hours I do without pred.YBB
Pred for me has been a big help been on it 3 years but without it I wouldn’t be able to work side effects bad but feel worse when not on it at least I can live an active life
More Research needed on this. Your post caught my eye & since you asked the question I tried CBD oils (Spray). Relief was remarkable and inflammation markers after 6 weeks were the same level of improvement as the Dr would have expected with Pred. I posted more on this forum (in more detail than this) & 80% of the responses (depressingly) were very dismissive/ negative of the possibility of CBD Oils working (may well be coming from a sense of care). Anyway CBD has had a life improving impact. It may be that I have something else with exactly the same symptoms as PMR, it maybe that I imagined it worked (although it means I can now walk 4 miles a day happily - from only 200 yards & struggling). I still have soreness & occasional flare ups but the improvement is at least 80%. As I mentioned in the first post I have no interest in CBD Oils or anything else. So more research please.
I replied and said I had tried a couple of recommended brands with no difference whatsoever. Some people reported better sleep but it didn't even do that. I am glad if it worked for you but please don't describe my response and others as dismissive. More research on everything required.
It is becoming clearer that there are different conditions coming under the PMR umbrella. Because it is difficult to get a definitive dx then we will never know if your version of PMR is the same as mine, or from anyone elses. That is why we are cautious. When you are 5years in having tried everything recommended to manage PMR, you tend to weigh the cost of yet another miracle cure against the reality you found when you tried it previously. That's not depressing or dismissive. That's my experience.
Not everyone can afford the cdb oils. I had to save for a year to get a supposed good quality one.
I always find it a bit surprising that a dose of realism is always perceived as being depressing. What was said was no-one who had tried it here found it did anything for their PMR - there are people who found it was helpful for OTHER things. It isn't that none of the forum have tried it - they have. And you are about the first I have come across who says it did something for the PMR in many years on multiple forums.
Why on earth would you say we were dismissive of something just because we said people hadnt found a miracle cure like you supposedly have. You have been on the forum for month and some on here have had pmr for over a decade so have seen so called miracle cures come and go and for 99% of people they havent worked and have been cost an extortionate amount of money. So glad it worked for you for what ever I'll ess you have but please do t criticise our members because they didnt agree with you.YBB
I'm pleased it helped you, and I've considered it for osteoarthritis, but as I take a blood pressure tablet - albeit a very low dose - it's really a no,no for me.
However, the one thing I do worry about people taking alternatives is that their PMR leads to GCA - and they don't realise it.
If the majority of their pains are "controlled" by CBD oil it doesn't mean that eyesight isn't at risk - it takes very little inflammation to disrupt the blood flow in the tiny artery that supplies blood to the optic nerve. If that happens, sight loss occurs.
I was missed diagnosed for a couple of months only. As I've said I had to go private to get sorted. Looking back over the years I think I had PMR coming on for a long time but it was discrete. Cramp going down my skins, pain when lifting my arms, but that subsided. As we get older we put everything down to age and arthritis, we should not assume. I cant believe how quickly the 15 mg of Pred worked for me within an hour of taking it. Sadly, once the tapering got to 8 mg the GCA kicked in, so upped to 40 mg. ESR/CRP shot down from 515 to eventually 7. I've requested a blood test via my GP to check to see how I'm doing. His reply was your last results were fine and so was your HbA1C for diabetic check...he couldn't careless, and probably knows less about both diseases. I've now asked for him to refer me to the Rheumatologist I saw privately to now see him via the NHS. To see him this way I won't get an appt. for a year. I think maybe in a couple of months I will insist on an NHS blood test to see how I'm doing, particularly with the tapering of the Pred. Why is everything so difficult to enable us to look after ourselves. I shouldn't have to keep paying privately to get checked out. I've spent just under £3,000 since Dec 2019. Rheumy charges £175 for a few minutes telephone consultation...who can afford to keep paying out at that rate !! I'm more than happy to pay for the Dexa scan to check my bone health once it's safe to do so, but even that, with me having been on high strength steroids and still taking them, I shouldn't have to pay for it.
I know two and they both ended up with GCA. PMR untreated can and does lead to its big sister coming along.
I will never understand the reluctance to take pred. Yes, it is one of the most powerful drugs we have. Developed in the late 50's or 60's, we know every side effect going, all 83 of them and they can be dealt with. So many people would be dead without it and that includes some children who are on it for life. Medics are always reluctant to give you pred, unless if it for less then 10 days. That is one of the causes of long-term pred users having issues with fast reductions, they want you off it asap.
If you remember the old days, or look at old pictures, Granny sitting in her chair beside the fire with her 'rheumatics'.
Turning to men, yes most men get away with it going into remission within 2 years. However some of them I have known who went into remission within the 2 years.
Without prednisone I could not have lived the past 10 years. Without prednisone I would probably be blind. Without prednisone I would probably have had a stroke and be dead.
The effects of prednisone must be weighed against the effects of inflammation in your blood vessels. PMR/GCA affects every organ, tissue and muscle in your body because of inflammation. When I flare I even feel it in my brain. It is a type of depression unlike any other.
There are things you can do to limit the damage done by pred.
Have a good primary doc. My primary works closely with my rheumy to keep my blood pressure under control.
Take the minimum amount of prednisone you need to get your SED down and control the disease.
Go on a low salt diet. I can't stress this enough. Go on a true low salt diet.
Cut back on sugar. Sugar causes inflammation. PLus, prednisone can cause diabetes, ditto for the blood pressure meds needed to control the high blood pressure caused by pred.
It is an unfortunate side-effect of pred that it increases appetite. Makes all of this harder. I can not stress this enough.
While on prednisone go on a low salt, low sugar diet.
I would be dead without prednisone. Now down to 6mg, slowly tapering to 5.5. Tapering is easy at high doses. It gets wiggy when you get down below 7mg. Hope this info helps. I have been dealing with PMR 20 years, GCA 10. Personally, looking back, I tried to blame this disease on a million things, Lyme disease, a virus, working too hard, walking pneumonia, etc. etc. The bottom line is, I think this disease was triggered by not being loved.
I have a husband who is an angel. I am now loved. I had to be loved by him to realize with 10 years of counseling that my family did not love me. I stopped groveling, stood up, realized I was better alone than with people who did not value me, learned to value myself, and that is much better. But, it has been a long road.
I think grief and suffering destroys our immune system. Abuse, non-love creates dis-ease, which destroys us.
"Not being loved".... This truly hit home to me. I lost my husband in 2016 (two and a half years before the PMR kicked in). I was married to a American for 40 years, so all my family were back in England, I was alone and my grief was deep. My children were grown and gone too, so I truly believe lack of love could be a contributing factor. I recently met someone who I like very much and we are "going steady" so to speak, and it seems that being with him has eased my PMR symptoms quite a bit, but maybe that is just me producing more endorphins who knows.
in reply to
Oxytocin...the love/hug hormone that's produced when babies arrive, loved ones and with pets. Research with dogs showed a rush of it in both the owner and dogs after 3mins of "hugging".
Yes, gotta love those endorphins. I can't "swim" now, the pool is closed. I could actually feel the high after being at the pool, and with my friends there. I did not swim per-se, the water in the pool was only three foot six inches. We walked in the water. the pool has a walking path, and we did aerobics and exercises in the water. I miss my friends, I also play a video game, and can tell the difference when I don't play. I hurt more when I don't play an hour a day. The game has tons of puzzles to solve and treasure to find. I am not sure, but think I get an endorphin hit every time I solve or find.
I also would be lost without my beagle, Bonnie. Someone dumped a pack of beagles on us two years ago. They were near dead. We nursed them, found homes for all but one, Bonnie. We kept her, and she is pure sunshine in our life.
I am glad there is someone in your life now. My husband is my greatest gift.
‘I think this disease was triggered by not being loved’. That sentence has gone straight to my heart. I so hope you feel loved now? Even if there is little love in your life there is love and care, plus masses of fellow feeling, on this Forum. ❤️
Yes, there is love now, my husband, and until they passed, his mom and dad. they were both parents to me, and my father in law was the dad I never had. So, there is love now. I am always reminded of the last line in the movie : "Ghost" when Patrick Swayze says to Demi Moore: "The love inside, you take that with you". To me, that is what heaven is, not angels and stuff like that. Heaven is the love you take with you. Hell is holding only hate and anger in your heart. Stay safe.
I agree. You have obviously been through the sort of experience that enables you speak out clearly about what is has meant to you and the conclusions you have drawn. Thank you for sharing with us. So pleased there is love now. 🌺
Experience and 10 plus years of counseling. I was also my mother's primary caregiver with stage 4 colon cancer. The behavior of my family during the time was so bad I had a breakdown after she passed. So, I guess yeah, you could say I have some experience. I know what is important in life. I know that when I die I want to be one of those people who have the love inside, that I take with me.
by the way, I went a full ten years before being properly diagnosed. I was shamed, ignored, and diagnosed with everything but PMR/GCA. i finally switched my docs to a completely different town, found a super primary and rheumy. they sent to Mayo Clinic in Minnesota. 7 trips in 2017. Finally, Finally, after years of suffering, treatment. The head rheumy at Mayo was very angry at what I had been through. It is a wonderful place.
What I suffered without prednisone those first years was just awful. I have my life back, such as it is.
Prednisone is not poison. Consider it an inter-continental ballistic missile. You only use it when you absolutely must, and with PMR/GCA it is the only thing that works.
There are things you can also do help heal. Focus on all aspects of healing, diet, emotion, love, gentle kind exercise. I do so miss my swimming since Covid. This illness makes sleep a challenge, ditto for pred. Do whatever it takes to get good healing sleep. It takes time to get better with this, and it is a roller coaster ride. Don't give up. It gets better.
Dear phebamom, I have to agree about the emotional effect. The pain of the loss of our young daughter took a huge toll on me. In a few years, add three broken ribs as a trigger and presto! Iv'e got PMR and, very soon, her BIG SISTER, GCA!
I may never "get over" that loss or my autoimmune diseases, but thanks to prednisone and PMRGCAUK, at least there is hope! (My excellent rheumatologist and primary care physician do get some credit!)
The family I walked away from included my only daughter who was everything for so long. I was totally betrayed in a way I can't go into. I learned through counseling that she has a borderline personality disorder. Something I can't fix, and I have always been a fixer. I want to help others, and this is the one thing I can't fix. Her drug addiction, alcoholism, I could cope with that, but she chose to make me the target of all her hate. I was the kind parent, and the kind parent is usually the target in these situations. The best way to describe it is an article from a site called "Flying Monkeys Denied".
My counselor told me the third paragraph of the essay should have a photo of me next to it. So, while I know it is not the same as what you have been through, I do understand.
I also lost 3 grandsons. But they were never mine to begin with. She used them as a tool, taking them away when she was angry. hubby and I walked on eggshells for 9 years to get to see those boys.
There comes a time in life when you just have to say "enough". The year my mother died she got mad because I cried when my son in law, her husband killed my Corgi. She took the boys away for 7 months that time. I lost my family, my mother, my daughter, 3 grandsons, and Dexter the Corgi, all in one short summer. This was after spending 17 of the worst months of my life being her caregiver. She passed in my home.
So, yes, I truly understand your grief. And, yes I truly truly believe that grief is a powerful factor in this disease process.
I don't think we can get well with just prednisone. I think we need love, and it needs to start inside.
Do not remember his name, but he was head of the department. I saw him once then saw an intern who was great. Her name was Erin, but I am sure she has moved on by now. I would have to dig out old paper work to find out the name of the head guy there. Older guy, had an accent.
I'm in a few facebook groups for PMR and a lot of the folks from America just take Celebrex which from a quick Google is a NSAID. I think it's because they don't have medical cover so can't get on Pred. I'm so glad of the NHS.
That IS interesting to me since I am in US and haven't heard of anything like that. I have to say that since I found HealthUnlocked early in my PMR/GCA journey, I haven't really looked for much in the way of other helpful sources of information.
If Celebrex is of any value to a PMR sufferer, it is very surprising to me! No other NSAIDs are.
Thanks tangocharlie! I'll look at the PMR groups on Facebook! Who knows, I might find someone to practice social distancing with!
I'm not saying it works and definitely not recommending it, just mentioning it as I've seen people say they use it. One person said she ended up with stomach ulcers on it
Do go on Facebook, but beware, there is so much dangerous nonsense spread on some of the groups. I try and direct people to here but some people are so stupid they're rather take advice from some random person in a facebook group than research the facts. I got into a big argument recently with someone who insists PMR goes in 18months because that's what her rheumatoloigst told her and he's an expert and I know nothing. I posted links to some of the research saying the average time to haveit etc but she refused to accept them as 'they are biased'. She's probably an anti-vaxxer and thinks you can drink bleach to cure Covid-19 too.
I think I understood your stance on this, tangocharlie, and I applaud your efforts to try to guide some of those people here!
I was more interested in how the "locals" here in the US are seeing their PMR journeys. So far, it looks like they would be better off following your advice: join up with us here on PMR/GCA!
What I think is missing in the endless, almost mindless noise there is someone with actual KNOWLEDGE on the subject.
But that may just be my personal bias, having been 'spoiled' by this group!
Thanks again to all of you who make this forum what it is!
That is the reason we really are hard about the introduction of non-PMRGCA posts. We know there are people who don't like us for it but that is the only way to turn down the volume on the constant noise thaat drowns the real advice.
The best thing to do is what I do, direct people to here where there are experts like PMRPro, the other fantastic Moderators and others who truck no nonsense and give you both the facts and support. The Facebook groups - there are about half a dozen at least, called things like Living with PMR or Surviving PMR are full of people who shout about and implore others to get off 'evil Pred' asap and take pain killers instead. In the US in particular, the healthcare system is so fragmented that everybody has been given different advice (if they've had any - many say they can't access medical treatment because they don't have insurance). There is no consistency whatsoever. They also make more use of things like naturepaths and alternative tretment than we do in the UK, so some people just bang on about how juicing celery or cherry juice daily has cured them. Now I don't know whether there is something in that, it'd be great if there was, or whether it's snake oil, but to tell a confused newly diagnosed person that all they need is celery instead of Pred is bonkers. There are a few smart people in the groups but they are often drowned out by the ignorant ones. Which is pretty much how things are in real life come to think of it!
There is the occasional person who comes here trying the snake oil approach. Then they get very uppitty when we present the rather more realistic version we deal in here! We have been accused of being in the pockets of Big Pharma, anti-natural options, dictators - and that is just the more pleasant comments!!
I have some empathy with the 'anti evil big pharma movement' - I do believe statins and PPIs have been over-prescribed for example. However in our case, as you have pointed out, part of the problem is that Pred is very cheap - there's no point drug companies looking at anything else. Why you can buy it for 10p a packet in India yet it costs people hundreds of dollars in the USA is scandalous. I've been accused in Facebook groups of being 'duped by big pharma' - but the few studies of PMR there are, are not sponsored by pharma but look at historic medical data, so are probably sound. I've spent years investigating in my own amateur way, whether diet etc can help lower inflammation, and I'm sure it does, but I conclude we also need Pred. That said, I have come across many people in forums who say the keto diet, or AIP or veganism or celery juicing has cured them of various illnesses eg arthritis, and they seem genuine people with no axe to grind. I do hope that such things work, I'm sure diet is the root of all health. But logic says that just bcause it worked for one person doesn't mean it'll work for others and some people are unwilling to accept that. Then again it has taken mavericks to change things - like the guy who eventually persuaded the medical profession, who all laughed at him for 20 years, that stomach ulcers are caused by Hpylori, and then got the Nobel Prize for his research.
It is a NSAID of a certain type called Cox-2 inhibitors. In the US, some other Cox-2 inhibitors were removed from the market mostly because of their negative effects on heart health.
Celebrex was allowed to remain on the market despite that, mostly because it is meant to be used short-term.
I don't believe that using it for PMR constitutes short term use! Long-term, it has the same negative heart effects as the other Cox-2 inhibitors. I wouldn't use it.
But as tangocharlie mentioned, those who do use it for PMR may be uninsured, and feel as if the danger is worth it to have a livable life now.
Another sad situation brought on by poverty and corporate greed. Prednisone is cheap for those of us who are insured. A doctor's appointment here costs $130 average. Rheumie appointments are more like $175. My insurance pays most of that, plus I end up paying $8 a month for my pred.
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