I am so pleased to have found this support group as I am 75 and live alone. I've had PMR since December of 2017 and have found being alone in pain very difficult to deal with as some of you might imagine. Like almost everyone else my internist started me on prednisone which has significantly reduce the pain. I'm now left with more stiffness than pain in my shoulders, chest and back. Still, it is very unpleasant, especially first thing in the morning. I'm currently on 7.5mg of pred and trying to avoid going any higher in order to avoid serious side effects from long-term use. I'm also troubled by persistent fatigue and I'm not sure if this is from the prednisone or from the PMR or both as it, supposedly, an autoimmune disease which typically are fatiguing. I also recently injured my left shoulder when I carried a bag of groceries into the house that was, apparently, after the fact, too heavy for my 75 year old body. There are moments when I fail to realize that I'm not 20 anymore. 
So I've now added injury to insult so to speak, the insult being the PMR. Will be seeing my internist next week about the shoulder. Thanks to all of you for providing such a valuable service. I look forward to interacting with you soon.
New Member: I am so pleased to have found this... - PMRGCAuk
New Member
Hello. I have only GCA but found that around the 7mg mark I felt debatably worse than when I was on higher doses. My energy was rubbish and I felt achey with every reduction for a few weeks. I even wondered if I had PMR. Once I got to 5mg it started to level out and I feel much better. I am assuming that it is because around 7mg you don’t have enough Pred to get you through the ups and downs of a day but the adrenals are still mostly asleep so don’t make up the shortfall with a squirt of cortisol. As this condition is still likely to be active as you are still less than a year in, there may well be some of that as well. But I suspect you are at a double insult point in the process. It is easy to over do it because the disease and the Pred make the muscles very prone to injury. As you are stiff, I wouldn’t try to hard to reduce too fast. Anyway, those who actually have PMR will reply I’m sure.
Thank you. You are the first to reply. I would go higher on the pred but both my doctor and from online research I've done advise staying below 7.mg of pred in order to avoid the more serious side-effects from long-term use. I certainly don't want osteoporosis or glaucoma on top of PMR. I'll just deal with the stiffness as best I can and hope that the PMR goes into remission before the end of my days. So this is my reasoning for staying on a low dose. It is a trade-off between how much discomfort I can deal with and how much risk of long-term side-effects I want to take.
I have been on pred for over 9 years - at the last eye check 2 years ago I had no sign of cataracts nor raised eye pressures nor have I any sign of diabetes. My bone density had not changed significantly in over 7 years. These things are not inevitable.
Not taking enough pred may mean the inflammation mounts up again - and it is a risk factor for cardiovascular disease and cancer. Immobility due to pain and stiffness is a risk factor for loss of bone density and diabetes - as well as depression.
It isn't a simple case of pred bad, low pred good. And 8mg and below is what is called a physiological dose - a similar amount of corticosteroid to what your body requires to function. PMR has a median duration of just under 6 years - to be at 8mg after barely a year is very good and nothing to worry about.
Hi,
And welcome
I would say you have gone below the level of Pred that you actually need, not a lot but enough to give you that stiffness you talk about. You might find that just an increase of 1 or 2 mg might make the difference. I appreciate you don’t want to increase, but why be on a dose that’s too low?
The fatigue may be due to the illness or/and the Pred, but also at the level you are at your adrenal glands need to start working again, so it could be due to that as well.
As you are less than one year into your PMR journey there is no rush to reduce, so the slower you go the better.
Some of us have been on much higher doses, and are still here to tell the tale, so don’t be paranoid about taking Pred - you need what you need!
Thank you for the reply. I would refer you to my reply to SnazzyD above for my reasoning for staying at a low dose. I might consider asking my internist for a slight increase in dosage over a short period and see what she has to say.
I hear where you are coming from, but it’s not a given that you will get either osteoporosis or glaucoma - yes it’s a possibility but not a certainty.
I was widowed 5 years ago and know what it’s like to live alone and in pain. All I am saying is you could achieve a better quality of life by increasing just a little.
I agree with Dorset Lady. If you're on too low a dose to enjoy the benefits of pred, why take it? And it could be that you only need another mg or two. Fatigue is very common around the 7 mg mark. If you weren't having the stiffness I'd say stay here for a while as your adrenal glands wake up. But if you're sure the stiffness is related to PMR you really should increase your dose a little bit. I've had a couple of minor flares, which included return of the PMR pain, and from experience I would say the best way to deal with it is so take about 5 mg more - yes, do it I didn't the first time and it took me months longer to manage the flare and wrangle my way back down to my former low dose. Take 12 mg for only two days, if it was a shortage of pred you'll feel much better, then drop down by a mg for two more days, and so forth. If you feel the stiffness creeping back, even if you are still at, say 10, wait there a bit longer, then taper down more slowly, after the stiffness has settled again. You may find you're fine at 8 mg, you may need to stay at 10, only you can tell.
If the stiffness could be something else - I have lots of issues with osetoarthritis, for example - then pred isn't the right treatment (although it can work when at the higher doses!). I simply keep my body moving by doing loads of exercises prescribed by various physiotherapists over the years, a little yoga, tai chi when I remember, and lots of walking.
Hello Ozark,welcome to this very informative and friendly site.l,am so sorry that you are having to cope with PMR and living alone, l have had PMR since June 2016 ,l did have my husband with me then and he was there to help me with things that l could not manage,even pushing a plug into a socket was too difficult because of the pain in my arms .l lost my husband following a heart attack last November and l know how lonely it can be to live alone.l am blessed with two sons and grandchildren and l do see them at the weekends.l am taking 5 mg.,of Pred at the moment ,l did manage on 3 mg., for about six months but had a flare and had to increase the dose.l did not like doing that as it does seem to be causing a lot of bloating and indigestion.l also seem to have a brain that does not match my age,l am always overdoing things and the PMR soon lets me know that l really must pace myself and remember that l am 74 now and should be more careful. Please keep posting,and let us know how you get on with your internist appointment,l hope everything goes well for you,l hope that this site will help you feel much less lonely,Kindest regards,Patricia x.
Sending you love as the difficult Anniversary comes up Patricia. ❤️
Hi and welcome Ozark! Mad Magazine! I remember it well. Where do you live, I mean what Country/State?
I so understand your reluctance to take Pred in a significant dose. There is recent evidence to suggest it is not as long term harmful as was once supposed at PMR level doses. I suspect that you have never taken enough to feel significant relief, am I right?
What we offer is friendship and support, information and experience also.
Around 7.5 is a really challenging dose because your own Adrenal glands have to wake up and start working. This can make you feel all over the place.
I look forward to hearing more from you, glad you found us!
I'm surprised that anyone in England would have recognised Alfred E. Newman. I was wondering who would be the first to comment on this avatar. I thought for sure it would come from the United States because I never realised that Mad Magazine was distributed in England. I was an avid Mad reader in my younger days.
I am living in the state of Georgia in the United States, though I was born and raised in the state of Connecticut in the northeastern part of the country.
Your comment/question that I've never taken a sufficient amount of pred to offer any significant relief is really not correct. During the initial phase of my PMR I was taking 15 mg per day and after three days I suffered an extreme anxiety attack. I then, of my own volition, reduced the dose to 7 mg and I've been in the 6 to 7.5 mg range ever since. Also, my doctor seems to feel that going above the 7.5 level would possibly lead to more complications. That seems to be in accord with generally accepted practice and what I have seen in my Internet research as well. Though I have also seen that 10 mg and above is much more likely to produce unwanted side effects. There seems to be some level of dispute and confusion within the medical community on this dosage issue as to where unwanted side-effects outweigh the benefits of the pred.
My pain level has diminished slowly over these last 10 months and I have now what I would describe as some mild stiffness in my neck and shoulders rather than pain. I can deal with this, but what I can't deal with is the constant fatigue that I feel. I'm not sure if this is the result of the pred or the underlying
autoimmune condition. I'm also not sure if less pred or more pred would help to alleviate this.
In so far as my adrenal glands are concerned, my doctor has always told me that at 7.5 mg of Pred or below this is considered a replacement value for the amount of cortisol reduction produced by the pred and would be roughly equivalent to a physiologically normal level of steroid. I am going to have to ask her about this again as I am still somewhat confused about this issue.
Thank you for your reply. I hope all is going well for you in Sheffield.
Hi, Well I was living in Edinburgh when Mad Magazine was doing the rounds amongst older friends.
7.5 mgs is around the level of Cortisol that a normal body produces. Our own Adrenal function switches off because the body is getting all it needs from the Pred. I am down to 6 mgs after 30 months reducing slowly from 20 mgs. I recently had a Synacthen Test, it tests the Adrenal glands’ potential to start working again. Mine have some way to go before they are fully functional.
All autoimmune diseases seem to have fatigue in the symptom picture. I think Pred makes you tired too. At its worst I had routine naps during the day whether I felt like it or not. This seemed to prevent too much disruption to my life through fatigue.
I am glad you are managing well on your Pred dose. The anxiety side effect can be really nasty, sorry you suffered that.
Hi Ozark
Welcome. I have had PMR since July 2015. I am lucky that my husband survived his heart attack in February 2016, and treasure him more, but this condition and osteoarthritis have made me very difficult to live with. I started on 15mg Pred and found this forum early, so did not rush to reduce. My GP agreed especially after my husbands trouble in 2016 when I had extra care duties. Even though my reduction was extremely slow I still had 3 major flares, each time needing to return to 15mg. Your body does not read the medical books and the key is in the name this is an AUTOimmune condition........you have to wait for it to burn out. Yes, the side effects are annoying, worrying, nay threatening. Have you instigated the lifestyle changes necessary, such as not carrying shopping investing in a wheelie / small bags / friend to do your carrying. You are probably like most who get this condition, were a managing sort of person so letting go / asking for help is against your nature.
At 7 mg, you understand if you read this site that your sleeping adrenals are having to wake up. It should be a holding dose for a few months, if not a few mg more depending on you. This time I held at 10 for a long time and then used DSNS method to reduce in 1 then 0.5 steps. A discovery this year that osteo had really destroyed my hips and Pred had been masking the pain, meant a constant reduction with no holds to meet my surgeon, who has carried out 2 hip replacements in 5 months, requirements, seems to have gone OK. Not asking too much of my body yet as I recover from surgery but at 2.5 mg and few symptoms I am hopeful this is the final stretch to Pred free, however long it takes.
Have a good day.......as the greeting is in USA. We lived in Houston with job in oil for 2 and 1/2 happy years in 90s, now in UK.
Hope your shoulder heals. Valerie💐
Thank you so much for your reply. You certainly have been through the ringer as they, more so than myself. I am going to ask my internist for an increase in my pred next week to, say, 8 or 9mg to see if that totally relieves the stiffness. As I've said elsewhere, I'm lucky that around 7mg has relieved the vast majority of the pain and I'm currently dealing mostly with stiffness after 10 months from first diagnosis. I've kind of leveled off in terms symptoms at 7mg but I certainly have not gone into remission yet. I've just gotten somewhat better over time without a flare or needing an increase in pred, but as I result of what I've already read from this group I will ask my doc for a pred increase to see if I can get even more relief.
My very best wishes to you for a quick and uneventful recovery from your surgery. I've never been to Houston but I will say goodbye for now from Atlanta, GA
Welcome Ozark. One thing that has helped some of us with morning stiffness is to take our Pred at night. There is a delayed release formula that is covered by my insurance here in CA, USA. I take it at ten PM. It is on board in the early morning before the stiffness causing inflammatory particles are released.
At the beginning, almost two years ago, I was on the usual immediate release a Pred. I woke up in pain, took my meds and had to wait to be able to function. I started experimenting with taking 5 of my 15 when I got up to use the bathroom at night. It helped a lot. When I told my Rheumy this, she switched me to the delayed release I’m taking now.
Since you seem to be reluctant to go up, you ask your doctor about changing the regimen some.
In the USA the delayed release formula is called Rayos.
In Europe it is called Lodotra. There is also an enteric coated Pred. In the UK.
This website has a good search function. You will find lots of info on different types of tapers. PMR is a disease of patience. You might suffer to stay low only to be slowly rebuilding inflammation. Unless you have taken a test that lets you know the status of the disease, you can only judge that by how you feel. If you are feeling stiff and achey, you might be undermedicating.
If you search here or google Matteson’s article on the long term effects of Pred as taken for PMR, you might find yourself less concerned.
Also some of us have avoided the weight gain and all that comes with it by going on a no grain no sugar diet. Pred mucks up carb and sugar metabolism.
I would take the pred at night in any form but I have chronic insomnia and I've read that pred could possibly increase that, otherwise I might look into nighttime dosing. My possible use of Rayos would also be dependent on my insurance coverage. But I will keep it in mind. I have no problem with weight gain, as a matter of fact in the beginning I was losing weight and had to take a high calorie supplement to maintain my weight. (We are all different in the way we react to this disease.) I will look up Matteson's article as you suggested. Am not ready to start a taper yet, but I will examine some of the methods mentioned by this group when I'm ready. Also, will as my internist about a dosing increase.
Again, thank you for your interest and I hope you have the most pleasant day that you possibly can.
When I first started with PMR (and before it was diagnosed), the problems were compounded by the fact that I lived alone and had nobody to help me on a day-to-day basis. I couldn't reach up to high cupboards or reach low to take things out of the oven. I ended up buying a halogen oven to put on my kitchen worktop. I dreaded dropping anything on the floor because I had to go into painful contortions to pick it up. I had to ask my daughter to do various chores, in particular changing the duvet cover. If I did that, I had to rest for several hours afterwards. As I also had GCA, I was started on a high dose of pred (60 mg per day) which effectively got rid of the terrible pain and stiffness of PMR. I'm now down to 12.5 mg and supposed to reduce to 10 mg in a month's time. I'm half-expecting PMR symptoms to start kicking in as I lower the dose and I dread that possibility. I second everybody who has suggested that you take a slightly higher dose of pred as that might well be enough to relieve you from all pain and stiffness.
Thankyou Sheffield Jane for your kind message xx.
These anniversaries can be so hard. 🌹
Welcome. I love Alfred E Newman photos ! ha. What me Worry? Is a good thought for us PMRers. I think you could go up a bit. I was at 7 and having a doozy of a time then got an injury and have gone back to 8.5 and feel better; going to head down again in a month. It is worth being able to function and feel good again. ...Better than having a TRUE Flare and having to go way back up. Hope you get some help here, I'm sure you will! So sorry you are feeling poorly. I think from the sounds of your 'thinking you are still 20" there is lots of hope you will be able to think that way again. !!! PMR is a pain but not fatal!! OH and I have osteoporosis already... but NOT from prednisone.. In fact the PMR has forced me to take better care of myself diet wise.! A Plus!
Welcome Ozark, to the forum comprised of thousands of people who are dealing with PMR/GCA, and even a few who are in remission. The folks here are warm, welcoming, and filled with knowledge and support for other members.
I too developed PMR in December 2017, but wasn’t diagnosed until May/18. Started at 20mg, currently at 10 tapering to 9.5 next week. I’ve had one flare along the way due to following an aggressive taper plan from my (former) Rheumy. Now I follow my own, slower taper and thus far have had only a bit of stiffness/soreness that is manageable.
I understand your fears about long term pred use and side effects, however quality of life should also be considered. Making decisions out of fear, as opposed to informed decisions, may result in further pain and perhaps even a flare. Please consider some of the suggestion provided to you here.
Hope your involvement with this forum reduces your isolation.
Are you in Missouri? I'm in Illinois an hour from St Louis.
Hi Ozark:
Welcome to the club no one wants to join!
I understand your concerns regarding side effects. We all worry about them. But there are things you can do to mitigate the risks. I don't see that you've been told to take calcium and Vitamin D, both of which will help protect your bones. There's a risk of developing steriod-induced Type 2 diabetes, which can be mitigated by reducing consumption of carbs and sugars. This can also help with pred weight gain. There's a risk of developing cataracts, but recent studies have shown that risk isn't significantly higher among those of us who take steroids when compared to and the age-adjusted general population sample.
The risk I don't see you having considered is the risk of the damage caused by poorly controlled inflammation from the PMR. That's the real reason for taking pred. Yes, when the inflammation is properly controlled, we have less pain. But the pain is a symptom of the inflammation level. Your dose should be at a level where you're relatively pain-free, which indicates that the inflammation is reduced to a less harmful level. Uncontrolled PMR inflammation carries a significant risk of permanent damage to the cardio-vascular system, as well as progression to GCA, a condition that can lead to loss of sight and stroke.
It's tough to get to the point where the dose of pred you're taking is balanced with the level of inflammation. It's even tougher to keep finding that balance as the PMR activity changes in response to multiple factors including emotional stress, minor ailments like colds, too much activity and not getting enough rest. And as you reduce, there's some discomfort that isn't actually from the inflammation, but is from steroid withdrawal. it's had to tell the difference at first, but after a while you can tell because the withdrawal pains diminish over the course of a week to 10 days after a reduction, while surging PMR pain just gets worse.
The dose you're taking now is about the same as the amount of cortisol you'd be producing naturally if you're under a normal load of stress and not fighting any "bugs". The risk of side effects at this dose approaches zero. It's enough to shut off your natural production of cortisol, but probably not enough to deal with an active day, a source of stress, and PMR. Since the inflammation level is higher than normal, you need a higher level of cortisol to clean it out of your system on a daily basis.
The usual starting dose for PMR is 15-25mg. I'm not a medic, but my reading indicates that people who start at higher doses often experience a shorter disease course, have fewer relapses when they do not rush tapering, leading to the result that they get healthier sooner and wind up taking a lot less pred in the long run.
You need to find the dose that relieves the symptoms - that being the indicator of how well you're doing. Then take your sweet time in reducing your dose as the condition begins to back off. This can take up to 6 years, and for some people, longer.
We have some folks on this forum who have been on much higher doses for years and years, who have mitigated the risks with rest, proper diet monitoring, and taking supplements to protect bones.
I'm sure "The Aunties" will be chiming in. They have a lot more knowledge and expertise than do I. I am just offering some things for you to consider in your assessment. Explore the site, and the accumulated wisdom here. Ask as many questions as you like, and ask more than once if you have to. There seems to be an nearly infinite supply of patience.
And if all that wasn't enough, we are friends to one another, offering support, shared experience, more than a few laughs, and a boat-load of people who "get it". We learn as much about one another as we learn from one another, and it's a nice way to socialize.
Once again, welcome, fellow traveler. Looking forward to getting to know you better...
--GG
Thank you so much for your interest. My reply will be relatively brief because I am not a touch typist. I use voice recognition software which constantly needs correction as I go along but it is better than nothing, though still very time consuming.
In answer to some of the points that you brought up I will address them briefly point by point:
1) I have been taking extra calcium and vitamin D since I was first diagnosed.
2) I have no risk of cataracts as I've had cataract surgery in both eyes. My main concern at this point with regard to my eyes is glaucoma.
3) I started my PMR treatment at 15 mg of pred for a brief period of time but the psychological effects and anxiety produced by this dose cause me to reduce my dose quickly to around the 7 mg level. Over the months (10 months) that I've have this disease my pain has decreased to the point where I would not describe it as pain but mainly a tolerable level of stiffness in my neck, shoulders and somewhat in my back. I have been lucky in that regard, as my condition is nowhere as bad as it was in the beginning. We are all different when it comes to PMR. (I injured my left shoulder three weeks go and that is more painful currently than the PMR. Will be seeing my doctor about the shoulder next week.)
I still may ask my internist about increasing my pred a milligram or two to see if I can get rid of the stiffness as well. I don't think my risk of side effects will be increased that much more at 8 or 9 milligrams.
4) My main stressor is chronic insomnia which I've had for many years preceding the PMR. The fatigue induced by PMR has only made matters worse. In fact, I'd say fatigue from all sources is my main problem now. I'm not sure if increasing or decreasing the pred would help with the fatigue. Maybe one or two more milligrams of pred might help with this, but I've also read where the underlying autoimmune response is the source of fatigue and not the pred.
Maybe the worst part of having this disease, aside from what has already been mentioned above, is not having anyone around who really understands it--no one that I know has ever even heard of it--so I want to thank you so much for your generous response and I look forward to learning more and interacting with this group over the long haul.
Well, that's mostly good news you're relaying. I, too, had cataracts taken care of long before PMR. As for glaucoma, I know there's a risk, and a heightened risk for some people, but you can be tested for that regularly in the US at an eyeglass store by an optician, and for free. If the "puff" test shows anything, you can follow up with an expert, like an ophthalmologist. This would be covered by the medical portion of your insurance plan as opposed to the vision portion.
Though it might seem counter-intuitive, a bit of exercise or a bit of a walk might help with the fatigue. If that's too much, maybe sitting on the porch or in the garden in the sun would help. There's something about fresh air and sunshine as medicine...
Solitude can be a blessing, but loneliness is no good. While we here on the site tell each other of our joys and our sorrows, we still need human contact. I'm very fortunate to still have my Dear One with me after his heart attack two years ago. I also still work, so I have plenty of company all day (hence the recognition of the blessing of solitude). Adding to that, my DO is one of 11 siblings, all of whom live within a mile of our house. They gave us more than 40 nieces and nephews, who now have significant others of their own, and who have given us some dozen and counting great-N-and-N's as we call them.
Sometimes my house is like a parade ground. We have now set "visiting hours" to keep from being overrun. You might consider doing something similar, inviting family, friends and neighbors to stop by at will on a set day during a few hours. Think simple - coffee, tea and cake for late weekend breakfast or after dinner. Beer and hot dogs and "the game". Soda, home-made popcorn and movies. After dinner drinks and politics (or game night) for adults-only on Friday night. Sometimes we have a "cold dish" dinner. The rule is bring whatever you want, but take it with you when you leave - including the trash, the leftovers and the dirty dish. Use elegant but disposable utensils, paper plates, glasses, cups and napkins. Little fuss, lots of fun. A break in the action (or lack thereof). Something to look forward to, and something to remember. You could have a crowd, or you could have just one or two stop by.
If there's a good thing about PMR/GCA, it's that we gt better. Use the search function in the upper right corner and look up "spoon theory" and "gorilla". You'll find some great tips on managing your condition, your life and yourself, along with some great stories.
If your fatigue has gotten worse at 7 mg, it might not be due to PMR. It could be due to your adrenals needing to kick back in after they were turned off by the external source of steroids from the Pred. Between 9 and 7 our adrenals have to start taking over again. Seven is the “physiological” level. Not only do the adrenals have to restart, but the HPA axis has to recoordinate. PMRpro has explained this. It is a complicated set of processes.
This article is a good start.cssassociation.org/patient-....
Ozark,
Welcome to the Group! There are very knowledgeable people here to get us through the trials and tribulations of PMR and GCA. You will get through this painful time but it is difficult being patient, at least for me it is. DorsetLady has 'been there and done that' and what she said rings true. Good luck and stay strong.
Hey darling welcome! I looove Mad magazine!! I grew up in the uk and came here to Melbourne Australia in 1987. I see you were born in Connecticut. I have a very dear friend who lives there, in Ridgefield. Welcome to this amazing site. It’s been more help to me than I can ever put into words. I’ve met the nicest, kindest and most caring people I cannot express my gratitude and appreciation. I wish you every success as you navigate the pred. If you ever get a spare five minutes have a look at what happened to me. But despite it all I am so grateful to the pred. Love, Linda xxxxx
I looked at your profile and, as they say, you have certainly been through the mill. I want to thank you for taking the time to respond to my post and I wish you the very best as you continue to bravely fight through all that is afflicting you.
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