If we wait for science to find a cause and cure for PMR I think we will be waiting a long time! I believe the answer will come from people like you and me, the ones with a vested interested and a motivation to make a break-through for the benefit of all. I should add I have achieved this on several occasions, just not in the medical field. It just takes determination, thinking outside the box, challenging the preconceived notions of the professionals and a collective approach to adding to the knowledge bank.
My brief history. I’m a fit 69, I live in Auckland NZ, a building consultant who specialises in bricks, and works from home. About 7 months ago I woke one morning with a very stiff neck and shoulders and since then the aches and pains have moved between my neck and knees, but mostly the top of the arms, the lower abdomen, the hips and upper thighs, mostly even on both sides. I say 7 months, but are now reflecting further back 2 – 3 years, waking with a saturated pillow, which I couldn’t explain, and knots in my shoulder muscles all the time, only relieved by the torture of a 45kg Thai masseuse every week! So there is certainly a possibility I have had it longer than I think.
Reading the feedback on this forum is sobering. A lot of people seem to be in the 7 to 10 bracket as far as symptoms and pain are concerned. I would put myself at between a 3 and 5 out of 10, with the odd day may be a 6 but most days 1 – 3, so I’m fortunate, and certainly do not want to get any worse than this.
I must confess, the thought of taking steroids scares the heck out of me, it is not as if they cure the problem and I feel if I can manage the pain I would rather do that. This is not to say I’m not a realist and may end up taking then within the month, as I have 2 doctors telling me to do so.
I would appreciate any comments on the following:
1.If you have refused to take steroids for your PMR, has that worked for you, and I would especially like comment from anyone who has come out the other side and now in remission.
2.I have a minor skin fungal thing that comes and goes, mainly where you sweat. They say if you have a fungal infection you must not take Prednisone, why?
3.What would happen if you just took say 7.5mg each day – I understand it will probably not eliminate the symptoms altogether, but will it significantly reduce them?
4.My doctor was talking about starting me on 15mg for a couple of weeks and then dropping me down to 10mg – I read comment that a 10% drop is the maximum one should consider, comment?
5.I would like to try a course of anti-biotics, what one and what dose would you suggest from your experience? Any comment.
6.Out of interest. I have been on statins for about 4 years, 20mg – 15 months ago, the doctor increased it to 40mgs and changed the brand. My cholesterol was just above the norm. I went to grab the next 3 months’ supply and read on the label about aches and pains, which I had forgotten about. I stopped taking them there and then – 5 days later, I awoke to a completely pain, ache free body – it was like someone had lifted a heavy weight off me. Unfortunately, that lasted a couple of days before it started to crept back. I firmly believe the whole cholesterol thing is a big money making exercise, and would strongly recommend people read a recent book by Ian Wishart, ‘Show me the money, honey!’ (printed in NZ) I would be interested to know how many PMR suffers have never taken statins!
7.My brother has Lymphoma and 2 years ago I gave him a bone marrow transplant, which of course affects your immune system for a short period – has any other PMR suffers done the same?
8.I sparingly use pain killers, may be once a week, and take 1 or 2 Voltaren, any comments on pain killers appreciated.
Apologies for the long dissertation, but certainly would appreciate any comment and feedback from the forum members.
Regards
John
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hiandri
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Hi from UK. Early morning cup of tea here before trip to hosp. I only have symptoms for GCA and am new to this and an avid reader of all things.
Anyway, before the nitty gritty of your queries are dealt with by those who know I can throw in a few pennies with my nurse hat on.
Fungal infections - These can be nasty if they are runaway and surprisingly difficult to eradicate. A bit of a skin patch on a healthy person is a bother but if you get a super infection it can be very bad if you are very immunocompromised, particularly profoundly like with organ transplant or untreated AIDS . However, it is a matter of degree and it'll depend on dose of course. Fungi are everywhere and you may know that aspergillus (gets into lungs) lives in amongst other places, mortar in buildings. Before you worry too much have a discussion about relative risks of infection with different doses.
Antibiotics - is this because you have read the a precipitating factor is infection? No one antibiotic kills all types of bacteria so a 'single bullet' wouldn't work. Antibiotics also can kill off your beneficial Bactria in your gut which could also lead to fungal overgrowth and other problems. It is worth reading about the gut biome, leaky gut and health problems. It is a rapidly growing field right now. There is also some thought that PMR/GCE may be triggered by viruses such as the chicken pox virus. Antibiotics wouldn't work. Viruses and bacteria can also hide and seal themselves (spores and biofilms) of course there is resistance. Again you need a discussion Re dose/risk with your clinician.
Statins - These can cause muscle problems. It is usual here to check for this particularly in the first year with a blood test for Muscle Creatinine Kinase which is raised in damaged muscle. However, I don't know if the PMR would raise it. More discussion with Dr.
Bone marrow transplant - Who knows but autoimmune illness can be triggered by shock and it just might have been the straw that broke the camel's back. Also you would have had the stress of the whole situation in the first place without that procedure on top.
At this early stage in my forays into this world I have come to the conclusion that diagnosis could be really better and monitoring. However, at the nub of it is the marvellous, confounding, miraculous and hideously complex individuals we are that is the problem and the solution. That, and the unhealthy world we live in.
Good luck. Others will be in touch I'm sure with more technical stuff.
Having re read this, I want to add that I put the building reference because of your trade which might have been missed by others. So, unless anyone wants to do some home knocking walls down you don't have to be fretting about your house! Have any damp sorted though.
Thanks SnazzyD for all your comments which are appreciated; there is a lot of wisdom there. Fungal infections on skin surface, I was given this prescription from a Chinese skin specialist years ago and it is great if anyone has an issue - 3% Salicylic Acid in a Meths base. Obviously I am also a newby to all this and no doubt will continue to flounder around for a while yet. I wish you all the best, Regards John
Your post makes very interesting reading and I'm sure you will be getting a lot of responses from the PMR cognoscenti, but my own experience of statins was the same and I was convinced I had myopathy after a recent doubling of the dose of pravstatin.
I stopped taking it immediately and haven't started taking it again yet but the diagnosis of PMR from raised blood inflammatory markers and other symptoms with the resulting steroid treatment has reduced most of the pain and allowed me to get back to a more active life.
But I'm very worried now about hypercholesterolaemia and my heart function without the statins. If I felt well enough in the mornings I would get a fasting blood test but at the moment that's going to have to wait.
Like yourself I would be fascinated to know if there are any common factors behind this and other autoimmune conditions which are creeping into our lives, so I shall be following your enquiries with interest.
Thanks Chrissie, really good feedback. Get a copy of that book, it's an eye opener on how the whole cholesterol question is based on bad science. My wife and I are going organic and moving towards Vegan - that's a big deal for me as I Iove my meat, just lucky I have the best wife who puts in all the hard work to make it happen. I think it is already making a difference,
Just wanted to say I was on a vegan diet for over a year which helped lower my high cholesterol a bit (from 9 to 7). I had tried statins in the past on several occasions but had to stop because of muscle pain. After the vegan diet had only reduced my cholesterol to 7, I decided to restart a statin and took the lowest dose every other day. About 2 months later I began having symptoms of GCA first then PMR. So I abandoned the statin as well as the vegan diet. I was thinking of all kinds of things that could have made me ill including the vegan diet. Other things I focused on as causes were Hepatitis vaccine injection just prior to the onset. The other thing that happened about two months prior was that my husband had a heart attack. So it may be that it takes a number of things to overwhelm your system. I recently had a remission for about 6 weeks. During that time I heard some stressful news about my daughter and I suspect this may be what caused the disease to come back.
I won't add to Snazzy's comments - except to add that PMR is listed as a potential adverse event on at least one data sheet. I took Lipitor for about a week, on top of having PMR, and was nearly in a wheelchair. It took months to recover to where I had been immediately before. The cardiologist was fine about (female and no history of cardiac event).
Re 1, I did not refuse to take pred, I was denied a diagnosis, for 5 years. Nothing improved it except adjusting my lifestyle, nothing touched the pain. I wouldn't go back there if you paid me to - and I have had my share of steroid side effects!
Re 8 - pain killers don't generally help PMR pain.
No-one I have met in 8 years on 3 different forums has ever mentioned having been a bone marrow donor - given the recuperative powers of the human body, I doubt it is much of a contributor to an OVERACTIVE immune system.
Dropping from 15mg to 10mg after a couple of weeks will be fine - providing the dose you need to manage YOUR symptoms is lower than 10mg. I was fine at 15, fine at 10, fine at 5mg for 2 weeks each - 6 hours after missing the first 5mg dose I was as bad as ever. That is the fear you need to have of your doctor's plan - that he is intending doing a short taper. That doesn't work. Tapering is required after you have been on pred for more than about a month.
A course of abx won't work - although there is one case I will describe pater. I haven't time just now.
But every year or so someone joins one or other of the forums and announces they want to find the cause/cure to PMR. Believe me - there is a fair bit of research going on into autoimmune disease overall - and that is where they will find the cause. Only then can they look for a cure.
Thanks PMRpro, great feedback again, value your extensive experience and gives me food for thought, good to hear there is plenty of research going on! Regards John
I would suggest that you go to these three websites and look at all the reserach and progress that has sbeen made by Scientists (I use the word loosely,) helped by patients. On the North East site there is a link to an international survey that has been running for some years now...........................
Then when you have read all the hard factual information come back and revise your questions.
If you leave PMR untreated (ie no prednisolone) you run a very high risk that GCA comes along. Then you have no option, you go blind or you take prednisolone, currently the only drug that stands between keeping your sight or losing it either totally or partially.
Some people take steroids from a very young age, and I mean young, and for life. Without them they would not be on this planet or any other planet.
Hi Sambucca, thank you for the reply and the good information, I will look into those site as suggested.
One thing I don't understand is Prednisone is not a cure, it just masks the symptoms, so if you are going to get GCA how does taking Pred. stop that from happening - it doesn't make sense to me? Regards John
When you are diagnosed with PMR the medical person who confims the diagnosis should (and some do) tell you the symtpoms of GCA, so you are aware of them.
Dorset Lady is not the only person who was left with a preventable disability. Over the past years I have discovered that quite a few have suffered loss of vision, and one who presented four times at A&E and still ended up with loss of sight in both eyes. I can only echo what Dorset Lady said.......one is too many for something that can be prevented if caught in time.
I was one of the very lucky ones whose GP had had someone previously and none of the practice recognised or knew of GCA, that person lost their sight. That GP never forgot that incident and I was the next one who came along 25 years later. I was sat down in the surgery whilst a member of staff was despatched to the chemists and given 60mg straightaway.
When I started on the journey, one I would not wish on my worst enemy, I knew nothing. As I had never had PMR I wondered how after meeting with other people who had both PMR and GCA wondered how I had not had PMR. I have not met many people with GCA only.
The best explanation my medics could come up with was "we don't know."
We all live and learn and hopefully those researchers will find cause and cure, and in the meantime, friendlier medication.
And as Kate says IL-6 seems to be a key player in perhaps starting to end this particular conflict.
hiandri, nothing about any 800 orphan illnesses makes sense to me. My body was attacking itself - a conflict of the many microbes, bacteria et al that makes me whole. Just like humans beings make war on each other - which does not make sense either.
However there was light at the end of my particular exclusive conflict, . 5 years down the line - remission (peace) and now into my 7th year from 1st January this year. Remission is hoped for all and may your journey end soon.
This time I will sign off as who I am:
Mavis R Smith
Chair
PMR&GCAuk North East Support
Charity Reg No 1138409.
Yes, one of the 25 people who met in London in March 2008 (and another was Kate whom I had met on Patient.co.uk). We met with Professor Bhaskar Dasgupta a leading expert on PMR&GCA. We were determined that PMR & GCA profiles would be raised, support groups established, awareness and more research.
Resutl of those 25 people, three charities, support groups - run by volunteers, nearly all of whom have or had PMR, GCA or both.
Hard work is paying off, slowly but surely. Those who help themselves - help others.
My heart goes out to the people who lost or lose partial or total vision and we are determined that people will be diagnosed faster and this loss will diminish.
Thanks for the detailed reply which I have taken on board and for your valuable contribution to the whole issue, hope to do an update in the next day or two. regards John
"If you leave PMR untreated (ie no prednisolone) you run a VERY HIGH RISK that GCA comes along. Then... you go blind." Is this a responsible comment? What is the hard evidence? Some statistics might be useful for anyone who is havering over taking steroids (who doesn't? I certainly did!) There seem to be any number of people on this forum who had untreated PMR for years (PMRpro - five years, you said), and who didn't develop GCA, before being prescribed Pred. I feel the forum is here to guide and inform, not scare. I know you meant well, sambucca...
Please see my reply to hiandri (John). I don't wish to scare either, but I am one of those statistics - and in my view that's one too many!
As I say I wouldn't wish anyone to go through what I've been through, and I make no apologies for pointing out the perils of not taking Pred. There are many who are not offered that option.... in time!
Thank you DorsetLady for your reply, I've read your story (many times on this forum, and totally understand where you are coming from, and your advice is invaluable). I should add that I starting taking Pred (over a year ago) as SOON as it was offered. The ''havering" about it (side effects etc) began then, but I never stopped taking it. And I still do. It was the comment in the earlier post about not taking it and running a ''very high risk that GCA will come along" that kind of jumped out at me, because I wasn't sure how correct it was. I'm still new at this game (!) and of course the spectre of GCA looms large for all us PMRers. But as you say, always better to be safe than sorry. Thanks again for taking time to reply.
I think it's very difficult to ascertain how many people with PMR go on to get GCA.
In fact, it has never been confirmed that I actually had PMR first, I had fatigue, upper arm and shoulder problems, but never hip, pelvic or knee problems - all of which probably didn't help with the diagnosis. For all I know I may just have started directly with GCA.
I did ask the Rhyemy 6 months after diagnosis (2 years in) whether I'd had PMR initially - his words were, "well we'll never know now, and even if you did, it would be gone by now!" Not very helpful!
I think if the level of Pred you are on with PMR is not enough to control the inflammation then there is a considerable risk of it progressing to GCA (I perhaps wouldn't have said "very high", but maybe sambuccu was quoting a study, I can't comment). Conversely if your level is keeping the inflammation well under control then maybe you are less likely to get GCA.
But I do agree, that you do need to be aware of the possibility of GCA, and of course if you get any of the suspect head symptoms whilst being treated for PMR you seek medical advice.
Thankfully, for most people it remains just a fear and not a reality.
It is said that about 1 in 6 of patients who present with PMR symptoms go on to develop full-blown GCA - because PMR is part of the symptomatic of GCA. Some of them do so within a few weeks, in others it can be years later. And there are a lot of people who "only" have PMR symptoms and a PMR diagnosis because the GCA is only affecting arteries in their trunk and not cranial arteries. They are mostly not diagnosed at present because PET-CT is not routinely done so no-one knows until they struggle to reduce the dose or have other problems. But once you are on pred the PET-CT is no longer a valid test as the pred interferes with the imaging.
Thanks tarifa16, must confess I have read a lot of info over recent weeks, on that steep learning curve, but I have never read that if you don't take steroids you run a high risk of GCA. If my symptoms were bad enough I would not hesitate to take them, but as you correctly say, who wants to take them if you can avoid doing so, I just want to make the right decision for me. Also, we are doing a one month trip to the US starting 21 May that I need to consider. Regards John
Sambucca didn't say you will go blind, she said that if you develop GCA you have a choice, take pred or risk going blind.
My PMR is actually very likely GCA - but affecting the arteries in the trunk rather than those in my head. I did have scalp pain briefly and jaw claudication but 15mg pred was enough. The reason for the high doses of pred in GCA where patients have any visual symptoms is purely because of the risk of loss of vision.
Celtic on this site and I know that we have read a paper that expressed the opinion that not treating PMR probably increased the risk of progression to GCA but it has disappeared, probably behind a paywall! This is a disputed opinion. BUT, there is a logic: if what you have is a low-grade of GCA then a moderate dose of pred will almost certainly manage it sufficiently for the blood flow to the optic nerve not to be compromised. The inflammation builds up - like a tap dripping into a bucket. It is when it reaches a certain point that the blood vessels block. If you have stopped that progression sooner then that is far less likely to happen - but even so, patients on pred for PMR do sometimes progress to full blown GCA. There are one or two people on this forum who experienced that.
I have often posted about not taking pred - even in PMR it isn't a simple case of pred is bad, no pred is better. The blood vessels are inflamed and that is doing damage to the lining, increasing the risk of developing peripheral vascular dise in the future. I could write a load more about it - but unfortunately I haven't time just now.
I was diagnosed with PMR in Sept 2015, I have never taken statins.
I was living in Spain from 2006 and had returned to UK in June 2015. Mine started after a long strenuous walk with a walking group, could hardly move the next day, thought it was muscles re-acting to the walk but it got worse and worse until I couldn't get out of bed without help. Looking back I think it was coming on for a while, brought on by stress, my husband having a brain hemorrhage in Spain, it affected his eyesight and I have had to take over all the driving. Then taking 18 months to sell our house in Spain (at a loss), before returning to UK to find the house we were buying had been taken off the market and we had to start looking again.
I started on 20mg Prednisolone, reducing 2.5mg a month to 10mg since then I stayed on 10mg for a year. I am reducing very slowly now, down to 9mg at present, starting 8.5 this week. I take my Pred at 11pm as that leaves me pain-free in the mornings, I find the thigh pain returns if I walk for more than 1hr, if I sit for a long time I get pain on standing, but that goes off after moving around for a while.
I try not to take pain-killers the occasional Paracetamol, other meds I take are Cod Liver Oil, Vitamin D, Vitamin K2 and Glucosamine & Chondroitin. My calcium levels were high on my last blood test so my Dr took me off Calcium supplement. Results of another test due soon.
Hi Marcia, thank you for your excellent reply. You poor thing, certainly had your share of stress, apart from the obvious, I hope your life is on a more even keel. I had to smile to myself when you mentioned the long walk - in May/June 2016 we spent 2 months in the UK and I estimated we walked at least 1500kms!!! I take Magnesium Malate 250mg/day. I am a huge believer in Cartia Aspirin and have taken it for 20 years, may be naive but like to think a may be worse if I had not been taking it.
I went off steroids completely ( I wanted my body to take over) and felt okay awhile ( 5 months) and then had vision changes and developed GCA . Beware, this is stronger than we are. I ended up with a biopsy, trip to USA Mayo Clinic and eventually 3 days of IV in hospital steroids. The opposite of my goal. Recently I discovered a new fracture in my back and await surgery on that. I put off seeking professional help because I couldn't face more medical procedures. Pain 7-8. I can only do a 1 mg taper a month and highly recommend that plan. I'm down to 15 mg now. I gained 25 lbs in three weeks and hate that. This 15 mg is the first time I feel I can begin to limit foods ( ravenous for carbs) and I feel that my metabolism is starting to work. I have had this condition about 5 years. It started just like yours. Now pain is out of arms and mainly in buttocks area. I hope it will continue out of my body. It all started with a frozen shoulder one year with no real intervention for years. I live in Florida USA but my daughter is a New Zealand citizen in Tauranga. Hope this all helps. I am high energy currently held down by pain and fear of permanent blindness. Emma
Gosh Emma, a very sobering comment and pleased to hear you seem to be heading in the right direction. You didn't mention what level of Pred. you started on. Take on board the 1mg drop taper. Your daughter lives in a lovely part of NZ.
Take care, thank you for your reply, kind regards John
As I recall I started back on the usual taper ONTO prednisone, about 60 mg to start back on it. It's a formula they give you. The one mg a month taper didn't start til I was in the teens of prednisone- 19 mg and down . I particularly don't want to go up in dosage again, hence the one mg a month. Working well, considering .
Hi. I only took cholesterol medication for a couple months. I didn't want to try and figure out what was pain from the medicine vs. PMR and my numbers weren't too high to begin with. My brother had to quit cholesterol meds due to leg pain-mostly knees.
My doctor did try me on antibiotics - minocycline 100 mg twice a day for the PMR, but I could not tolerate the side effects. I only took it for a week. Very light headed all the time with no ability to focus on anything.
I developed asthma as an adult, then was under lots of stress, then had a serious respiratory infection, (possibly entero virus 68), then noticed symptoms of PMR--mostly because every time they put me on prednisone for asthma issues I could miraculously function again, and would crash and have a hard time moving every time they took me off.
None of us wants to be on steroids. But, it does seem to be the only thing that can keep us going at 50% of what we used to do. Steroids got rid of all of my pain and allowed me to function somewhat-although I did have to quit my part time job for a year, and severely cut back on errands, chores, outings, etc. I didn't start to improve until I accepted that PMR was drastically changing my life and required me to change with it.
I was on steroids 2 years and 3 months, and have been off of them for a couple weeks now. My energy level is improving, but I am not back to pre-PMR levels yet.
Hi Meg 1711b, many thanks for the reply with some good information. I will be interested to learn how you progress off the steroids, and wish you all the best, Kind Regards John
Good questions! I am taking a station drug, but due to my history of muscle aches long before I was diagnosed with PMR, I only take the medication 3 x a week. This does help my cholesterol count!
Since I am used to osteoarthritis pain in my body, I never connected the body aches with anything other than osteoarthritis, but low and behold part of my pain was from PMR. My inflammation number was 82 (CRP) when I was diagnosed! The steroids have helped tremendously with the body aches and pains, but as I wean down every month, the pains come back sporadically. My true complaint however was NOT the body aches, but rather the tremendous fatigue I felt before the steroids! And once again, now that I am weaning down from 20 mgs a day to 8 mgs now, my fatigue is slowly returning little by little.
I don't play with the doctor's protocol for my PMR. He is a rheumatologist and he picked up on my condition right away after some tests he ran for me. My CRP is now at 54, so I presume the protocol is working for me. My ESR is at 33 now. It should be less than 20. But I don't know what it was when I started the protocol.
I have 3 auto-immune diseases. My body was a runaway train. I see the prednisone as a good thing. It has helped me and I don't know where I would be without this treatment. I was in bad shape before and felt soooo much better after I started the treatment. Good luck to you. With your doctor's permission, try the 3 x a week for the cholesterol just to start if your cholesterol is not too bad.
Hi nimina01, appreciate your reply and all the good information it contains. I have no doubt that steroids do a great job most of the time, it is just hard trying to get a handle on the side effects and how bad they are. Most conditions if you are feeling unwell you go to bed to easy the pain. What I find is you go to bed and the PMR seems to get worse, particularly upper arms and abdomenal area. And of course, if you need to use the bathroom 2 - 3 times a night, sure I'm not alone there!, that is a mission in itself. Pleased to hear you are making progress, all the best, Regards John
Will try not to repeat too much, and as I had GCA maybe my views are slightly more biased towards Pred than others. Taking them can be scary, but as I said in answer to previous post they have given many people their lives back after being virtually bedridden pre diagnosis, and for many others with the more serious partner in crime - GCA - have saved sight.
Many refuse steroids at the beginning of their journey, but find that after trying other methods of controlling the symptoms, have to eventually admit defeat and go down the route of Pred.
7.5mg may control the symptoms, but if you're going to take Pred, then why not take a big enough amount that you know will actually work?
PMRpro has covered dropping Pred and ABX.
Statins are controversial to many people, I have taken them for many years (family history) but don't believe they had any effect on me getting PMR/GCA. If me, then why not my siblings? None of them who also take statins have GCA.
Pain killers will not touch PMR.
I appreciate you do not want to take Pred - who does? Who wants to take any medication? But sometimes you have to.
If you don't take Pred, then left untreated your PMR will probably get worse before it gets better. Some people go into remission when the underlying PMR goes away, but not everybody.
If it doesn't go into remission then your blood vessels are likely to become more compromised by the offending cells in their walls making it more difficult for the blood to flow around your body bringing the necessary oxygen, energy et al to your muscles. Also you may be more liable for it to morph into GCA (not a given, but certainly a possibility). The blood vessels affected then are the major ones in your torso, and those in your head. In your torso it can/may lead to aneurysms, strokes, heart attacks; in your head it may lead to partial or full blindness. Would you refuse a tried and tested medication that stopped you having a heart attack or stroke? Would you refuse a tablet that stopped to possibility of blindness?
As I said, I am biased, but, unfortunately, I do have the t-shirt to back up my opinions!
I had undiagnosed PMR/GCA for 18 months, tried all the painkillers, both OTC and prescribed, physio exercises, steroid injections in shoulders to no effect, eventually after having a blurriness for 4 days and losing sight in right eye.
On diagnosis in hospital A&E was told that there was a 50/50 chance I could lose sight in remaining eye. I took that first dose of Pred as fast as I could! Plus I had to wait another 2 weeks before it could be confirmed that my other eye was okay. The longest and scariest 2 weeks of my life. I wouldn't want anyone to go through that!
I don't intend to scare, but I do say, think very carefully before you reject Pred.
Thanks DL, no, not scaring me , I'm the sort of person that calls a spade a spade and a realist. You and others have been there done that! Why wouldn't I seriously listen to what you have to say and take it on board, certainly leaning more towards taking them than I was. I'm sure I speak for everyone, we appreciate the time and effort all members of the forum put in to contribute to the welfare of others; it is comforting to know you have somewhere to turn should the need arise.
I once had a line manager that wrote those exact words on my annual report - "Sue calls a spade a spade" - when I told my hubby, he said, "oh no she doesn't, she calls it a bloody shovel!" Bless him!
I think we all want to try other options first, not necessarily easier, but maybe easier on the body, and ones that we control.
Many people who seem to succumb to PMR or GCA are those that are the ones normally in control, and it comes as a bit of a shock to the system to admit YOU aren't in control of everything any more!
Hopefully you will have been given some good advice that will help in the days to come, and I'm sure you will soon have your own expertise to help others.
Hi hiandri, it is ironic that you take statins while I take pred and you would really have to push me very hard to take statins. In fact I could hardly move before diagnosis and the pain was horrendous.
Taking say 7.5mg of pred is fine provided it sorts out the inflammation. If it does not you really are on a hide into nothing.
As PMRPro says dropping from 15mg to 10mg can work, I know it did with a friend of mine. It is after 10mg it gets a bit harder often.
Thanks piglette, you probably misunderstood me a little. I had been taking statins for my cholestrol level, nothing to do with my condition of PMR, but stopped when I remembered the muscle pain side effect, and no longer take them. Regards John
Hiandri,. In someways your situation is very similar to mine. I have not received a definitive diagnosis of PMR but I have pain bilaterally everywhere in my body that's continue to progress over the last four years.
I have tried Prednisones on several occasions for anywhere from 20 mg down to 3 mg for as long as three weeks. I found that the trade off of pain reduction to side effects from the prednisones is not as desirable as the trade off of pain medications versus the side effects.
Both prednisones and pain meds long-term are not healthy. But I get as good a reduction of pain from both but with the pain meds I don't have the side effects of the Prednisone. I know that the fact that I get relief from the pain meds makes people believe I do not have PMR. Nonetheless it's chronic muscle pain throughout my entire body. And prednisones does help the pain and definitely helps the stiffness a lot. My muscles are very stiff every morning for about the first 20 minutes .
If prednisones was a cure I would probably be willing to continue to take it. But neither the pain meds or the prednisones is a cure so I guess I should go with the one that gives me relief and does it have as bad of side effects.
My pain is like yours it's usually below five but that's with pain medication without pain medication they can spike up to a six or seven. But the more activity I do the more it hurts. So I've been reduced to basically a sedentary existence. Where are used to be a highly trained athlete.
I doubt that the prednisones will allow me to get back to a high level of activity anyway. But I'd be happy just to walk around the block with my wife.
I did try taking three weeks of low-dose prednisone and it did cut down on the pain a little bit. So like you said if you took a lower dose it could give you some relief but you probably have to combine it with painkillers anyway. I wish you the very best we all have to seem to find the path that works the best for us .
I have noticed as the pain gets worse I have to increase the amount of pain medications to offset it. So that's a slippery slope as well. Just don't know where it's all going to end. Best of luck to you.
Thanks for the reply jwb43, I was surprised you said you took Pred for as long as 3 weeks, unless I misunderstood, that is a really short time fame. I think it is important to do as much exercise as one can manage and swimming is low impact that I find helps me. I wish you all the best, Regards John
You will get some relief from taking painkillers for PMR, but they will not get to grips with the inflammation caused, even NSAIDs. I lived on painkillers for 18 months before diagnosis, but my life was severely compromised.
However I guess it's your choice what you take, but you should remember that long term use of any medication, whether prescribed or OTC can cause problems, and at least if they are prescribed you should be having regular blood test to check for any irregularities. The same may not be so for those purchased OTC.
I wish you well, but having vessels that are not allowing freedom of blood movement around your body due to said inflammation may be causing you more problems than you realise. Please do be aware of any increase in symptoms, or increase in severity of those you already have.
Yes my pain and lack of mobility continue to get worse. But I dont know how people can take pred. It makes me have chest pains, palpations, muscle weakness, neasua, irratiablity (By now you know I can't spell) and just overall sick. There has to be a better way. I really wish I just would not wake up one morning.
Unfortunately you seem to be one of those people who really have a bad time with Pred, so I can understand why you want to steer clear of it. Have you discussed all the side effects you suffer with your doctor, I'm sure there must be something that could help.
But at the end of the day, it is your decision on what to take and what not to, and I wouldn't assume to tell you otherwise. All I can do is wish you well!
Thank you. Everyone on this site has been really wonderful and I'm sorry to be negative sometimes. But when you go from being in finely tuned athlete to a Burden To all those around you. And you've been restricted to basically doing nothing it makes it hard to stay positive. I've been to lots of therapy and dozens and dozens of doctors and I'm just one of those unfortunate people whose very sensitive to side effects. I can't even walk around the block with my wife anymore without increasing the pain tenfold.
I have had a lot of side effects with pred, on the other hand the pain that pred has sorted out makes me feel very thankful. PMR is life changing so one really has to look at all the things they can do and never tried rather than the things they are no longer able to do.
Thanks-Good advice. I thought I would be exercising my way into my 80's. I never dreamed there was such a condition that could completly stop my activity when I have the energy and desire to keep going. I have no other affects from my condition but pain. I sleep OK have good energy. In fact to much energy most times. But I have no way to disipate all that energy due to the pain.
Dorsetlady,. are you able to be active on prednisone then you were on painkillers? I would love to be able to go for walks or ride a bike. But I don't know that the prednisones would let me do that anyway. Because every time increases tenfold.
Certainly Pred, usually, takes away the pain and stiffness caused, so exercise is easier than without it. I found the painkillers, although they lessened the pain for a while, never took It away like Pred. If fact I didn't have to do exercise to bring pain on, just lying in bed was painful, which is why I ended up taking tablets day and night!
However, even when you are on Pred you need to be careful with exercise, your muscles do not recover as well as pre PMR - lessening of blood supply, mean less energy and nutrition to them. Gentle exercise is good, but you need to pace yourself.
I can certainly walk around the block - and a lot further - while on pred and I have no residual pain or catch-up pain the following day. I had a couple of years when I couldn't do that with PMR and no pred. If I couldn't drive there and park in front of the door, I couldn't go. When I had to stop driving for a few months I was housebound, just like you. I couldn't walk to the bus stop at the end of the road and even if I could I couldn't get into the bus! Within 6 hours of taking 15mg pred I could walk down and up stairs normally, not down like a toddler one step at a time and up on hands and knees.
Many people find that it takes a few weeks of pred for some side effects to settle down and it is possible that you haven't given it a chance. For some people taking another drug alongside it also helps - not everyone though.
And pain-killers used long term have some pretty hefty effects - paracetamol doesn't do livers and kidneys any good nor do most NSAIDs. Codeine derivatives are addictive and constipating. No-one gets all the side effects of pred, some have an unpleasant experience. I did with oral Medrol, but to be honest, horrible though it was, I never felt I would be better stopping it. It did give me some life back. I have no such problems with prednisolone or prednisone. Sometimes it takes a bit of experimentation - splitting the dose sometimes helps with things other than the pain returning too soon.
I have to say too - I was irritable with PMR, never mind the pred!
PMRpro, Thanks for your reply . When I'm not on prednisones I feel physically and mentally good I have energy and I sleep well and everything else is OK except for the pain. And of course the pain keeps me from being able to do things which is very frustrating. However , when I'm on pried I have chest pain's palpitations shortness of breath, I'm restless and agitated my muscles get very weak and I can hardly move and on and on. As much as I have hope that prednisone could help every time I take it I realize that it's worse than the PMR. Neither are good and I wish I didn't have to make a choice between the two. Also after taking prednisones for a few days and then stopping pain seems to be worse than it was before I took it. It seems to progress my condition because more places her then do it before I took it.
If it's not a stupid question - are you 100% sure what you have is PMR?
Your description of your pain and it's relationship to the Pred doesn't seem to add up. I know we are all different, but if I were you I would asking for further investigations into your illness. Or maybe you already have.
jwb43as Dorset Lady says are you sure you have PMR? Does the pred take away the pain? It does not sound that bad if you can stop pred and feel physically and mentally good. I could hardly move without pred. I agree PMR is life changing, but we learn to adjust.
Whenever I say I can stop pred and feel physically or mentally good I guess that's misleading. Physically I'm in such pain with every muscle in my body that I can barely walk. But I still have a calm heart beat and energy that I want to do things even know I can't. My overall general feeling of well-being is good. Except for quite a bit of frustration and depression because of my situation. But when I take pred I have so many side effects such as palpations and chest pains and weak muscles that I'm almost worse. The prednisone helps the pain about 70% and it reduces stiffness by about 90%. That's after one Day of 15 mg but I felt so bad I did not continue to take it . In the past I took it for three weeks at about 4 mg a day. But I had to stop taking it because I got so weak in my legs and muscles that I couldn't stand up. It may not be PMR. I have been to many doctors but none seem to agree diagnosis I really appreciate all the information everyone on this forum supplies. It's very helpful
Unfortunately I seem to be one of those people that has a very sensitive system. I get bad side effects from many different medications. The only bright side is I can take half as much and still get the same benefit. So that saves me some money
Perhaps you need referral to a pain clinic - they were the answer to almost all my non-PMR pain problems. And like the others, Dl and Piglette, I'm not entirely sure that what you are describing is "just" PMR.
I think you're probably correct. There is more going on here than just one thing. That's why my doctors are so confused. I have appointment with pain clinic in three weeks . Wish I could take Pred's on like you do without too many negative effects .
All the talk about pain from PMR/GCA, reminds me that the pain is probably significant from inflammation and of course other physiological causes. I take curcumin/turmeric once a day in the morning. I does take quite the edge off and I feel it is a safe and powerful tool to have around! There are many good brands on the market and I look for the ones that have the best absorption. (Some come with Pepperdine pepper already in the capsule for better absorption). I use the spice in my dog's food that I prepare for her as she is an older dog. She still acts like a puppy! There are even shakes you can prepare before bed with turmeric to help with sleep problems. You can find the recipes on-line. I take my curcumin capsule with a bit of coconut oil (capsule), as it needs a good fat in order to process with the most efficiency. Just a thought.......
And always talk to your doctor before taking any type of supplement.
The cure for PMR will be a substance that stops the body from manufacturing too much IL-6. This is an interleukin chemical that is a normal part of a healthy immune system but that goes into over-production in some conditions. We know this already - it's a case of persuading science that this condition is important enough.
I was diagnosed 8 mths ago, started 40mg prednisolone, now down to 5mg, did have a massive relapse when cut from 30 to 15mg, agree it was too big a drop, I have never taken statins, my over active immune response was triggered by an injury (shock to the system) suspected rheumatic situation was building over several months before the attack and finally diagnosis, agree the signs are there long before situation has spread to whole body. I changed my diet avoiding
Inflammatory foods/drinks, eating anti-inflammatory foods, steroids are not a cure. I have lost weight and seem to be reasonably pain free and suffering less sudden fatigue.
Any shock in later life is likely to create imbalance of immune system, I guess we can't afford to overdo or take risks, we can bring
Cholesterol, BP and type 2 diabetics to normal levels without
Meds. I have found GP's knowledge and understanding of this condition varied greatly and clearly little funds are going to research, odd when so many people suffer from pmrgc, some quite young. I would be interested in how u r keeping pain at manageable levels.
I was diagnosed withPMR about two weeks ago. I have requested to try other treatments before I have to use steroids. I also have RA and am on methotrexate and hydroxychloroquine for that, so my rheumy has added leflunomide to help deal with the PMR. She gave me a steroid injection to help until the new meds can kick in. So I can't say yet if it will work but here's hoping. I will update any changes.
As regards to the statins my cholesterol is slightly raised and GP wanted to put me on them but as I'm hypothyroid and not yet well controlled declined and want to get my thyroid sorted first to see it that lowers it. As it is known to affect cholesterol. As I have raised blood pressure I am loathed to try some thing that could adversely affect it. I am a nurse so tend to research everything well before the need to take it arises, so at least I will go knowing the alternatives I can try. Luckily my GP is very good and will listen to me.
I hope you can find something that works for you that isn't steroid based. Please keep us updated on any developments
Dear Tracey, I am afraid the only thing found to help PMR so far is steroids, it really is a wonder drug as far as PMR is concerned. Are you certain you have PMR? If you are taking Methotrexate for the RA, do you know why this is not OK for the PMR. It just seems a bit strange to take Leflunamide as well for PMR, I can understand if they are both for RA though.
I must admit I am very wary of statins and would only take them if given a very good reason.
Yes it is PMR. I have an excellent rheumy who does know what she is doing. She has spent a long time trying to sort out the problems and is very thorough. My CRP has now come down but my ESR remains raised. The fact the steroid injection helped whereas it never really did much when my RA was first diagnosed. It's trial and error to get the right meds combo but I'm willing to try anything to avoid the steroids. As regards to the methotrexate I have no other option but to take this as it's the only thing that I have tolerated. I had adverse reaction to other meds and have no wish to have an RA flare.
I understand that eventually steroids maybe the only way but at least then I will be satisfied I have tried every other option. I have lived with pain for the last ten years so what's a few more months.in the big scheme of life.
I have PMR and have had it for about 8 months and was determined not to take steroids, but I'll a realist, I weighed up and listened to all the experienced comment on this forum plus the two doctors I went to and made the decision 3 days ago to start on 15mg dose, my life changed and I now have no aches and pains, you just have to manage the process well. Regards John
I too am a realist and know I may end up with steroids. I have 4 months to see how I go on the current regime. I am prepared to wait that time as I have waited this long so 4 months is nothing. I have had a rough 18 months having been diagnosed with multiple illnesses over that time and have found it difficult to come to terms with them. So yet another diagnosis has just thrown me into a spin.
Unfortunately as a Nurse you tend to look at the worst case scenario. So am open to any suggestions, comments or advise and thank anyone for them.
I hope you continue to improve and wish you the best
Hi hiandri, Just re-reading your post & have to say I am one of the PMR sufferers who has never taken statins. My guess is that shingles at the age of 30, followed by Ross River Virus less than 6 month later, while in Australia, then numerous bad viral attacks, flues & strep throat when back in NZ have all contributed to this. Like you, in hindsight, I feel it was coming on via unexplained fatigue & on some days, walking up hill felt like I was dragging myself when the day before it was easy..all these strange little indications that all was not right, until the day I woke up unable to move..Long story but essentially, this forum has kept me sane due to the total lack of support here in NZ.
Good to hear from you. I was just interested to hear if statins were a constant with everyone. I'm sure there are many reasons PMR is triggered and certainly stress is a big factor and that comes in many forms. Do you live in Auckland?
Thanks for the reply. What I am finding is once you start talking to people about your PMR you discover there is a whole lot of others who are also suffers!
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