Hello, fellow PMR sufferers... I'm new here as I was just diagnosed about a month-and-a-half ago with PMR. The thing is though, that I want to a try to avoid taking steroids if at all possible because of all the horrible side effects that it causes. I have an appointment with the rheumatologist (finally!) on January 15th , but in the meantime , I'm trying to tackle this as holistically is possible, with acupuncture, Physical Therapy, changing to an anti-inflammatory diet, even CBD / THC for the pain. So far I have not noticed any great results, but it only has been a little over a month. The pain during the night and in the early morning hours is when it's the absolute worst. But, I swear, even with the excruciating pain, I think the night sweats is even worse! Of all the research I've been doing on the internet, I have not seen anything about night sweats as being a symptom of this disease. I'm literally up every hour and a half to two hours, sweating profusely, where I have to change my clothes and sleep on the other side of the bed where it's not damp. Sometimes I have to change my clothes up to four times in one night. And as you all know, with the pain, it is not easy to dress and undress, especially when your clothes are all wet and sticking to you! This is the most horrible disease to have when you're living by yourself... I feel so alone, helpless, desperate and afraid. Has anyone else been experiencing these horrible night sweats? And has anyone else decided to avoid taking steroids and had any success in treating this holistically?
I appreciate any input you have, thank you!
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Lindaracha
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Before you eschew prednisone, the only effective treatment for PMR, take a look at the side effects of untreated PMR/GCA.
Traditional pain relievers will not relieve PMR pain. You might get some relief from aches and pains in other areas actually caused by compensating for places where PMR is really active, but it won't touch the PMR pain.
Prednisone is a treatment that reduces the inflammation causing the PMR pain. It is not a pain reliever in and of itself, and does not cure PMR, which must burn itself out over time.
Holistic remedies may help around the edges, and certainly a good diet is necessary especially when your body is under siege, but nothing we know of will touch the central core. Nothing. If anything did, we'd all be on that.
Because no one wants to take prednisone. People with PMR and GCA need prednisone. There isn't anything else.
My mom, sister and I all have a range of this stuff. They got bad PMR and light GCA and for me it is/was the other way around. early onset GCA with strokes, night sweats, scalp pain at 50 and lighter PMR at age 51, now getting worse, at nearly 53.
I did the 2 yr preds, and lost/replaced my hipbones due to necrosis, because of it.
My Netherlands mom 78, and my USA sister, 60, have been using chloroquine (plaquenil) for their PMR. They swear by it.
If you are taking steroids for the PMR you should not be getting the pain you describe. They usually work like magic in relieving the pain symptoms. Steroids are in fact the only solution at the present time to relieve PMR pain. Either you do not have PMR or you are not taking enough to fight the pain. What dose are you on? I think the worst side effect of pred was the hot sweats, they did go away as I reduced thank goodness. Hot sweats do seem quite a common side effect.
Over the last three years on this board I have come across several people trying to avoid taking steroids. I think on average most give in to them within three months.
But I am not taking any prednisone at this time. If the prednisone causes night sweats, then why am I having all these night sweats? And I have not heard of many other people talking about having to deal with that. I'm just wondering if it might be something else that's not related to PMR...
Oh sorry I was assuming you were taking pred as you were talking about sweats and steroids. As others have said a PMR symptom can be night sweats. You may find that if you take pred they may go away and the good thing is so will the pain.
Could it be the Menopause? Or have you been there, done that? I am on 9mg Pred and get head sweats at night, have to keep turning the pillow over to find a dry bit. 2+ yrs into PMR and I now have Sciatica and Piriformis syndrome (pain in the buttocks) as well. Seeing a Chiropractor today to try and get some relief from the pain in left hip and leg. Dr has done X-rays and says all OK then just gives me more painkillers which upset my stomach. Steroids are not so bad when you consider the problems you can get with PMR/GCA through not taking them. Good luck with finding alternative therapies that help.
Thank you for your response, Marci. Yes, my sciatica has been flaring up too, because of this, but I think it's mainly because I haven't been able to exercise and stretch the way I have always been used to doing on a regular basis. I know it's not menopause, been there, done that. Thank you again, and happy New Year!
Sometimes PMR is a differential diagnosis. With me, it is. I have been on a prednisone protocol for over a year. I too suffered from extreme nightsweats and anemia, along with the terrible aches and pains of PMR. Because of my anemia, which I could not control with iron supplements, my Doctor sent me to a hemotologist. The hemoltologist asked me if I had night sweats and when I said I did, he ran some different tests for me. The diagnosis I received from him was the main disease that I had and the PMR was secondary.
I am not saying that the same is going to hold true to you, but the night sweats is significant perhaps. I would mention this to your rheumatologist and discuss “differential diagnosis” with him/her. They should be fluent in the different diagnosis that go along with night sweats and PMR.
I had been on Premarin since age of 32, long story...............however when diagnosed with GCA and high doses of pred. Night sweats back with a vengenance. So I talked to my lovely Pharmacist and found these helped.
Extract of sage (its horrible to take) 15 drops in water ....................and follow the instructions.
Evening Primrose Oil.
I also put a towel on my pillow and you can buy mattress toppers that help to cool you down.
But before you buy it either or both and in case you are taking other meds, check with your Pharmacist for contra-indications.
Me? GCA 5 years, remission starting 7th on 1 Jan,
Perhaps think complementary not alternative. As good grief says and no doubt others before I finish this message will advise but....your body is basically attacking itself via processes of inflammation which cause many symptoms including pain stiffness night sweats and others reported on this forum. Prednisolone or its international cousins are the only thing that stops the inflammation. Without the inflammation being managed it can damage the heart and other more serious symptoms like blindness if GCA develops.
Like almost everyone On this forum I did not want to take steroids. Especially when I read side effects. But they work and I am atypical too. I initially put weight on and got a bit of hump but but cutting out carbs (as complement to steroids) not an alternative I lost a stone and hump going as well. I had dexa scan after 12months of steroid (56yrs old) and did not show any problems beyond what my age group has in terms of bone density. .... Nevertheless I take vitd3 and calcium to complement the pred. I try an do short walks to complement the pred. As atypical patient I was put on steroid sparing agent that I have more concerns about but I want this condition to go into remission so will take until I feel no benefit . Currently in 10mg of pred which is only 3 mg more than body creates as natural process. Once I get down to under 7mg I don't care if I stay on that and below if I am still symptomatic at all. The upshot is I do take complementary holistic approach but would not consider, over 18 months in of return to the pain I had when inflammation in full flow, as I do not believe the inflammation is managed effectively and allow me the quality of life I deserve.i am hoping to taper the pred very slowly in the hope that inflammation finally goes into remission on 0mg. Perhaps think complementary rather than alternative. Current research shows pred not as bad as drs once thought and to be honest I have removed more dangerous drugs like ppi from my daily doses. Good luck. If you find something that work as well I would be surprised but happy you have relief.
Thank you so much for your response, I really appreciate it, and will definitely give it some consideration. I really want to talk to my rheumatologist before I make any decisions regarding this, but I do believe that the best advice and suggestions come from people who are actually going through this themselves, so thank you again!
My rheumatogist supported and in fact raised my pred initially as that was when he said I was atypical the symptoms refused to down as did inflammatory markers.i did wonder why you were told you were atypical patient before you tried pred? The rheumy and Dr also tried to strongarm into alendronic acid. It's always good to ask questions about treatment protocol. Always a few nasty side effectsvthat not everyone gets. I was just at end of menopause too so had my fan at side of bed ready for night sweats and only used 1tog quilt. That really helped. I had fan on several time in the night pre dx with one and pre pred. In higher doses...for me 15mg...they were bad this summer but are better now.
I agree with everything poopadoop said.. I especially like what she said about other drugs. I did too much alcohol for years and too many cigarettes without a thought which is much worse than prednisone and probably caused my bad bones... The prednisone is a god-send of this disease and if you follow the wise advise of the people who have gone before us it will make you feel so much better!! Good luck. Being in chronic pain is stressful not only on one's body but one's mind and spirit. ! And I really like that once we are down to 7..it's the body's own amount of cortisol being put in us. You might also find at first the prednisone is AMAZING and feels so good!
Hello, sweats can be one of the symptoms of PMR/GCA and quite possibly a sign of uncontrolled inflammation. In hindsight I had this before my GCA flared up properly but I thought it was just the menopause but since the Pred it is so much better. I do get sweats when my Pred is entering my system for an Hour or so. I would also consider the side effects and whether they are worse than aneurysms or blindness; potential complications of unfettered inflammation. I started on fairly high doses and I would say the side effects haven’t been as bad as when I was on chemo. Many of them are preventable or minimised.
I don't know what you have been reading on the internet - but night swearts are often mentioned as a symptom of PMR, and more often, as a symptom of its big sister GCA giant cell arteritis). As others have said - night sweats CAN be a side effect of pred but I find that when I am on the right dose of pred I don't have much in the way of sweats, more sort of a sense of a glow, but as soon as I go too low and allow the PMR to flare I start having sweats again.
Don't look at it as "Pred bad, no pred good" - it is far more complicated than that. While you have PMR symptoms it is a sign there is unmanaged chronic inflammation going on in your body 24/7 - and it is doing damage. The pred relieves the inflammation and reduces the risk of that damage. Chronic inflammation is acknowledged to be a contributing factor in the development of cardiovascular disease (heart and blood vessels in general) and in the development of some cancers. Untreated PMR is felt by experts to be more likely to progress to GCA - and if you develop that then you have a stark choice: take pred at a much higher dose than you need for PMR or risk losing your sight. Even taking pred for PMR, some people go on to develop GCA.
Every few months someone arrives on the forums insisting, like you, they are going to "do this" without pred. The vast majority last a few months at most before starting pred. I had PMR symptoms for well over 5 years before being allowed to try pred - not my choice, the doctor didn't recognise it for what it was. Nothing would induce me to go back there. I have not yet had side effects of pred that made me want to chuck it away - and I have had quite a few. But most of them can be managed when you know how and the overriding benefit of taking pred is that you get an almost normal life back. Some doctors will try to tell you that it will be gone in 2 years - no it won't for the vast majority of patients. About a quarter get off pred in 2 years or under but remain at a higher risk of relapse. About half take up to 4 to 6 years - and the rest of us take even longer.
You can help some of the effects and side effects - but for a "normal" life you need pred. PMR doesn't stop me doing the things I want, some I have to do differently but I do them. And it is all thanks to pred.
My God, PMRPro, I just can't believe that you endured five years of this illness without even knowing what you had or any treatment, it must have been an absolute nightmare! As such, I can understand why you're feeling that the prednisone is a life saver for you.
Again, thank you so much for your response, you're insight, and hearing about your experiences is very helpful to me. Thank you!
I was never as bad as Celtic - it was difficult getting out of bed but not impossible. For some years, Mon-Fri I fell out of bed, struggled into a swimsuit and joggers and crawled to the car. After an hour of aquafit in a warm pool I could move fairly freely though I still had pain. I had an off-peak gym membership so Sat and Sun I was left to my own devices.
In the 1950s my grandfather had what was almost certainly PMR - he still ran our small holding and pleached hedges. Pred had only just been invented then - so wasn't an option. As far as he was concerned he had bad "rheumaticks" - it was part of old age and you lived with it. We are so much luckier.
I have also suffered from night sweats,and l cannot tolerate humid weather as that seems to cause a lot of sweating.l started on 15 mgs of prednisolone eighteen months ago ,l always hoped that l would never have to take steroids,but l could not tolerate the dreadful pain and stiffness of PMR and it was such a relief to feel almost back to normal after l had taken the steroids,this being within just 48hours.l had more energy then that l had ever had before. I am now down to 3mgs and apart from the occasional slight flare up am very happy with this.l have to try and reduce to 2mgs ,it is a slow process but ther is no better treatment for PMR. I have put on a stone in weight which does not seem to change even on the lower dose,l shall have to try harder with my diet in the New Year.All the best lindaracha,it is very important to be treated quickly for PMR.xx
Lindaracha, when I first heard of PMR by searching my symptoms on the internet I dismissed the possibility because I never thought I'd need such a serious medication. After all, I'd always looked after myself, ate a healthy diet, didn't smoke or drink, exercised, etc. A year later, when a doctor finally diagnosed me, a previous doctor having missed it, I left her office with the prescription, went immediately to the pharmacy and swallowed my first dose as soon as I could! Three days later I miraculously had no more pains of any sort, having improved gradually over that time. Like many I take my pred with a mixture of reluctance and gratitude, and also continue to do as much as I can to improve/maintain my health through complementary treatments.
Lindaracha, if my experience with night sweats pre-diagnosis/treatment is anything to go by, you may well be experiencing a symptom of GCA (Giant Cell Arteritis) alongside those of PMR. My PMR remained undiagnosed for many months, with several of those months spent in bed in agony and travellingl to Rheumy appointments by ambulance and wheelchair. It wasn’t until even worse symptoms joined in the ‘fun’ that I was eventually diagnosed with both PMR and Giant Cell Arteritis. Among those “worse” symptoms were vomiting and severe night sweating/fever very much as you describe. It is highly likely that had PMR been timely diagnosed and treated, I may not have gone on to develop GCA. I would strongly urge you to reconsider your decision not to intervene with steroids as soon as possible. Whereas a dose of 15-20mg of steroid will treat PMR, if you succumb to GCA, you will need at least 40-60mg to reduce that inflammation which, if left untreated, can lead to all sorts of ‘nasties’, including heart problems and stroke. I really do believe that someone was watching over me in that my eyesight was saved in spite of me experiencing jaw claudication, a symptom that can make vision loss more likely. Please heed this warning and don’t put yourself at similar risk when steroids are there to negate this risk. Lots of good luck wishes.
Well spotted and now amended! Should remember to read things through when using the iPhone rather than the desktop. Meanwhile, at least it’s good to know I have my very own editor over there in snowy Italy! Hope you’ve had a happy and peaceful Christmas, Eileen, and that a happy and healthier New Year is waiting around the corner for both you and David.xx
Oh you poor thing, you’ll probably find that you are also running a temperature with all the sweating, making you feel horrible. It is all the unchecked inflammation coursing round your body. I remember the sweats well and they didn’t confine themselves to night time. My head would bead with sweat just talking to someone in a shop.
Trust me. Nothing in Pred side effects is as bad as untreated PMR. Alternative therapies and a sensible diet help to support a good recovery, but nothing works on the inflammation PMR causes except Prednisalone. Untreated PMR can have quite serious consequences such as Giant Cell Arteritis that puts your eyesight severely at risk.
None of us want to take steroids but the blessed relief when you do is worth it. Most side effects in my experience can be helped. A lot of us worry about weight gain due to an increased appetite. A low carb diet from the outset has worked for strong willed people here.
Stick with us, there is a lot of knowledge and support on here, it makes the journey so much easier. I would urge you to get a prescription from your GP as soon as possible. Jan 15 is a long time to suffer in the way you are. You will be amazed at how quickly you feel better. The Rheumatologist has nothing else to offer you I’m afraid.
I have had diagnosed PMR for 20 months. I started on 20 mgs of Pred and was symptom free within 48 hours. I am now down to 7 mgs.
Hi have PMR and GCA and I had terrible night sweats. I also had to change clothes at least three times, most often four times as they were soaking wet. The pain was terrible. I also had to urinate often at night. When I was finally diagnosed I was put on 60mg of Prednisone and it stopped the night sweats and cut the pain so I could sleep.
I would be cautious about not taking Prednisone. It works and will keep GCA at bay. I temporarily lost the sight in my left eye and the quick action of my Doctors (giving me Prednisone) saved it. If I did not take the Prednisone I am not sure my sight would have returned. I also believe in alternative methods but not in the case of PMR and GCA, Prednisone works. I hope this helps.
Lindaracha I cannot imagine how hard it is to be waking so often to change your clothes when you're in so much pain and not having someone there to help you or to moan about it to!
I was woken this morning at around 6 with a sweat....it's quite common for me to get them at the same time each morning. I kicked off the duvet and waited....eventually giving up and getting up.
Earlier this year someone on here recommended I buy a silk duvet. My husband and I now have separate duvets and mine is a much lower tog value than his. The silk duvet worked so well for me in the summer, my night sweats reduced considerably. I have added another feather duvet for winter and most of the night am comfortable but have the odd sweat, usually resolved by laying outside and away from the heat source.
As for steroids, you've been offered plenty of advice regarding them. I have come down in several stages to 10.5mg from 15mg in November 2016. It's been a struggle and I am still not where my Dr and my rheumy want me to be but I feel I am slowly getting there. I hate the side effects, I am sure we all do. I hate (even as a normally obese person) the fat face, several chins and other physical effects. I am vain and don't like looking how I do on steroids. The facial side effects I believe are gradually reducing now.
It's amazing to be almost pain free on steroids....it does allow you to get on with other parts of your life that you're having to adapt and work around. Good luck....you won't be alone.
hello, Ida's Mum, I very much appreciate your empathetic response. It really is helpful to me to hear about everyone else's experience with this God goddamn disease, and how they are coping. Thank you again, I wish the best of luck to you, too, and happy New Year!
Please take steroids since nothing else works. I took 25 mg Pred to relieve symptoms. I lost weight (weigh 105, 5’2”), follow low carb, low sugar diet, no alcohol, take supplements, but when I deviate on diet or forget supplements I feel the same. We all try anything to feel in control. However, disease is in charge
I live alone and find it to be a blessing...not answering to anyone with PMR symptoms is perfect!
Hi Sandy, thank you for your response. I read your profile, and am amazed at your refreshing attitude toward this god-forsaken disease. I wish I could be that positive... I usually am a very positive person, always looking on the bright side of things, but I have been feeling so depressed, I just can't seem to get out of this slump.... I guess I should do some more meditation...
PMRPro said it best! You need drugs! I find Zumba uplifting and light weight training either with a trainer for a half hour or a class. I did 45 minutes today and used 5 pound weights It was cardio, too.
PMR has taught me to do and say what I want! The filter is gone! My attitude fluctuates but sad only when I see my 94 year old mother who realizes she losing her sharpness! That’s when I feel my aging. Oh well, acceptance is key. It’s not easy and is a constant challenge. Please let us know how you do. I wish you the best.
Like you I was diagnosed very recently, and resisted steroids for some weeks, wanting to see if I could cope without. I was seeing a kinesiologist, chiropractor and acupuncturist, which helped a little. Eventually though when I couldn't get up the stairs without going on my hands and knees I caved in and took the pred (started on 20mg, still on that) ... and now wish I'd done it sooner. I really do think it's the sensible course of action to prevent yourself from greater harm. The side effects are annoying but not life threatening, and they have returned quality of life, as well as an ability to exercise (moderately!) which is just as beneficial to health.
I continue to see the complementary therapists and hope that their work on balancing my system will hasten a return to health. Interestingly, they are all totally on side and believe that it's right to take the steroids.
There is great advice on this forum - well done for finding it! Living with pmr is to learn to relish the slow lane. In my own limited experience the best I can offer is to say to adjust your expectations, and rest as much as possible. As a very active, previously healthy 54 year old I'm finding that hard, but crucial.
Best wishes for your journey ahead. It's not so bad in pred land if you decide to go there!
Thx for your response, Todw, I appreciate hearing your experiences, it really does help. Happy New Year to you!
Hi Lindaracha,
Night sweats and fever of unknown origin are symptoms of quite a few autoimmune/ auto Inflamatory diseases.
My concern is that that the diagnosis of PMR is made without comprehensively ruling out mimics. If you have had weight loss, fatigue and malaise as well ( the only symptoms you have mentioned are pain and night sweats ) then the Rheumatologist should start from the beginning and not assume that this is PMR.
At the very least they should check your BP on both arms and listen to your arteries for bruits to check for large vessel involvement.
"Bruit or vascular murmur, is the abnormal sound generated by turbulent flow of blood in an artery due to either an area of partial obstruction; or a localized high rate of blood flow through an unobstructed artery. The bruit may be heard ("auscultated") by pressing a stethoscope to the skin over the turbulent flow and listening."
Normally you hear the pulse when you listen to an unobstructed artery. If there is plaque or narrowing of the artery it changes the sound.
They are " whooshing " noises heard when you put a stethoscope over an artery. They can indicate inflamation or narrowing of the artery.
It can be difficult sometimes to differentiate between PMR and GCA which doesn't affect the Temporal artery. I am involved with Vasculitis UK and have spoken to a number of patients over the years who were thought to have PMR but a few years down the line developed problems with the large vessels such as subclavians ( artery supplying the arms ) and the aorta ( the main artery supplying the heart ) etc.
Tell me about it!!! The lead author is my new rheumy - haven't enjoyed a visit to the doctor as much as that since last year. And that was with the local GCA-hobbyist - not often you spend 45 mins with the doctor because he is printing out latest articles for you is it?
i think it is a bit unfair to describe other people's comments on your original post as "backlash".
The reason this forum does not support alternative medicine is twofold.
This is an official charity forum and we are associated with several renowned medical experts in the field. As such discussions tend to be of mainstream medicine. We do talk about COMPLEMENTARY therapies - not replacements for mainstream approaches but things we have found help us personally to manage the GCA/PMR symptoms or the side effects of pred. Believe me - there are people who have commented very unpleasantly even about that.
There is no evidence-based background for a role for Chinese medicine in GCA. Not even, as yet, anyone saying it managed their PMR safely. If you come back and tell us how it helped you that will be different. Not that the report of a single person would prove much in that respect - PMR burns out sooner or later for 95% of patients. Only large scale studies would show a given treament made a significant difference in when the pred was no longer required.
In the context of GCA - which is what you have written about in your first post - it would be tantamount to medical negligence if this forum were seen to support any suggestion of not using pred for GCA. It would put people's sight at risk. None of us associated with the charities would encourage anyone to do that nor would we sleep easily at night if we thought someone was not taking pred because some other totally unproven approach was being tried.
Your practitioner claims he is treating the cause - currently the cause is not known. If he believes he knows the cause he should be publishing in the scientific community with evidence to back up his claims and furthering the progress of treating autoimmune disorders which are a major cause of morbidity throughout the world. My experience with oriental and alternative medicine in the past has been that they are very reluctant to subject their claims to peer review. Peer review is not perfect - but it does usually result in some discussion of different approaches to a problem.
Hi PMRPro, I do understand that some Chinese herbs contain elements of steroids which may be the reason that they are actually having an effect on the PMR. Personally I would be very careful as one hasn’t a clue what dosage is being taken let alone what else is in them.
There was a Chinese medicine substance being sold as a non-steroidal treatment for arthritis. A Danish lab smelt a rat and analysed it - massive doses of not particularly pure steroids, far higher than doctors used and sold without any monitoring as it was a "supplement".
I think I read something about some Chinese medicines being packed with “not particularly pure” steroids. Another reason I am wary of some of the claims being made. As you say they are considered a supplement so are not monitored. Very worrying.
Hey, a couple of shots of whiskey or brandy make me feel better, too. Well, not really, but by the third shot I don't care.
I am interested in your comment about the liver
" night sweats are caused by your liver. It is in distress and toxic overload and needs a strict detox with diet and herbs such as milk thistle. A good herbalist will start you off "
It's my understanding that the function of the liver is to detox. Are you saying that the liver is in " distress " even when liver function blood tests are normal?
Can you provide a link to the anatomical basis for the above statement and the evidence base that diet and herbs will help?
Please don't think I am giving you " flash " and " backlash ", I just think it's important that anything proposed as a treatment on here has an evidence base to support it. Do you have a different point of view?
I have a pre-diagnosis of TA/GCA. I am currently on a low level of steroids until I receive a final diagnosis. Actually, the tapering off of the steroids has brought on excessive night sweats in my world. I woke up last night to night sweats and was forced to change my t-shirt three times! It's a trade-off at this time. Personally speaking, I agree with the majority of those who responded to your posting. I would supplement the steroid treatment with holistic medicine.
On a side note, I purchased a type of pillow that makes "night sweats" a bit more bearable. Later today I can post the details of my purchase. It's little things that make a difference!
Until then, have faith and start the day with a smile. This forum has been so amazing. I don't feel alone anymore. I hope you feel the same. Take care my friend!
I remember in the summer someone re commended a small scarf that has gel in. You put it in freezer and helps keep you cool. I have 1tog quilt which keeps me warm enough in cold but cool enough in warm. I have had bedside fan for years. I have accepted for now that 2 to 3 sets of nightwear often required!
Thank you very much for your response, Michelle, I appreciate your input and encouragement!
My experiences with Chinese herbalism several years ago put me off as it made symptoms worse despite perservering as requested. In fact my liver became very inflamed. I tried milk thistle but had no improvement. My main problem was that even though I was told the ingredients I had no evidence of how they interacted and secondly the financial burden of trying to use alternative therapies proved prohibitive.
I would hope I would support anyone who was ill even if I disagreed with their treatment regime. It's none of my business what they are happy to put in their bodies. I felt chased off this forum several months ago by someone who advocated alternative therapies just for saying that i disagreed with their approach. I was told I was patronising and i felt attacked for being concerned about someone's health. I left for several months as i didn't need the stress while trying to manage several illnesses. So it's not all one way. None of us really know the full stories behind someone's views.
We are all just trying to get relief from our symptoms and ensure that in the long term we understand what the chemicals we put in our body is doing to us. (See discussion 're AA) Like many others I prefer evidence based medicine. But I also appreciate that some cultures have developed medicines and practices that others nit alwats from that culture embrace. If you join a forum that is founded and supported by one cultural approach then people will in general by adopting that approach. That doesn't mean Th ere can't be dialogue it just means that difficult questions may be asked about a therapy and some of us may not like the answer.
Omg. Glad I stopped it. I certainly had bloating and general feeling of unwellness. That was several years ago now and my meds regime too complicated now to dabble too much. I like alternative things now that might not do any good physiologically but I like them...like crystals. Pretty to look at nice to hold. Even then you have to avoid toxic ones that havent been processed.
Oh, koala. You have no idea at all what is causing the night sweats of a person you've never seen and never met. For all you know, they could be sleeping in polyester sheets, next to a big furry dog, a roaring fireplace, and the thermostat set too high.
Making such emphatic unsupported statements is what creates the "flack and backlash" you experience. Your statement is one of belief, not one of fact. When one makes such statements, it casts everything else they say into doubt, since there is no rational basis for it. It has the ring of the true believer, and perhaps the snake oil salesmen as well.
There are many participants on this forum who use complimentary treatments and supplements. They come and share their experience when something works for them, and when it doesn't. The strongest admonishment I've seen by the PMR/GCA folks is that they advise others to ask a pharmacist or doctor whether the treatments or supplements conflict with other things already in their regimen to prevent blocking, intensifying or changing the effect of medicines, including dangerous drug interactions. If there is a known negative, they advise more strongly.
In the string of your original post I asked you what makes you think the Chinese herbs and supplements you are taking are not drugs. I'd really like to know your thoughts on that score.
First, i cannot give advice on the night sweats; fortunately, they have not been a part of my journey. I hope you find a way to get relief from them.
I would like to say a few words about Prednisone. My first reaction to being prescribed with Pred was ‘Nooooo!’ I knew nothing about Prednisone, next to nothing about GCA/PMR, and yet in my mind Prednisone was already a monster. I knew that previously on steroids, I gained weight because I had such strong food cravings and hunger that never seemed to go away. Prednisone=steroids=monster.
That perception started to change within 24 hours of my first dose when I was able to tell my Rheumatologist that 60% of the beast pain was gone. It was a miracle.
Seven months later, my mantra is, “Pred is my friend. GCA is a monster, but Pred is my friend”. In fact, I say a “thank-you” to it each day as I’m taking my dose. “ Thank you, little pills, for the work you are doing for me today.”
Is it a lightweight drug? No. But these diseases are very complicated that present in multiple ways with extreme consequences if not treated. I don’t need a baby aspirin, i need a powerful drug. I have GCA and I want a tried and true powerhouse that will allow me to keep my sight, help me from having aneurisms, heart attacks, and strokes. I’m not willing to risk my health and eyesight to try a treatment that's not based on scientific evidence based medicine. I would be devistated to wake up blind because I did not follow recommended treatment of Prednisone.
It’s a powerful drug, but one that’s been around for a long time. We know the side effects. We can counter most of those side effects. (Glucoma is still problematic.) Examples: HeronNS has increased her bone density while on Pred. Many (myself included) have lost weight while on Pred. The diagnosis of Diabetes Type 2 was taken off of my record even though on Pred. Mayo Clinic recently reported that the side effects of Pred may not be as bad as originally believed. Plus, it’s cheap. For the price of a couple of coffees at Starbucks, I’ve got a 30 day supply of a drug that is literally saving my sight and life.
Of course, only you can determine what path you want to take with your treatment. And you and I are different in that my diagnosis of GCA is more serious than PMR. I just want to encourage you not to think as I originally did in assuming that Prednisone is a monster. It is not. It’s a powerful drug that deserves our respect.
Prednisone is my friend and I feel compelled to speak in it’s defense.
Hello everyone...This is my very first post. I feel after reading all of yours Ive finally come to the right place. You are all so knowledgeable and make me feel that I'm not all alone in living with PMR and GCA. I'm so happy to have found you!!! Ive been diagnosed with PMR since August 1 of this year 2017... after living with the neck shoulders hips and low back pain for 2 years . After seeing my rheumatologist a few times and having her do exrays of shoulders and hips and having her say that the exrays are clear so no probs. She also did blood work and my inflammation markers were elevated... she said she couldn't find anything wrong with me... ruled out all of the other awful autoimmune diseases. FINALLY got the diagnosis of PMR from her. She put me on prednisone 20 mg.s and after 48 hrs. I felt so good... pain free!!! ran around saying its a miracle!!!! I was so happy and loved this drug UNTIL after about 3 months of being on it everydayI started to feel very unwell... tired...profuse sweating, brain fog, huge face and neck that is not pretty but the swelling it caused almost cut off my wind pipe and breathing...my biggest complaint though is the breathlessness its causing me. Ive reduced from 20 to 12.5mg.s since October and don't feel well at all. My aches and pain are returning now too... along with jaw pain that I had dentist look at and said its not my teeth. The jaw pain seems to come on after not taking the prednisone for over 12 hrs, or overnight. Does jaw pain indicate I'm getting GCA?
Its not when I eat or open my mouth though. Its just there.
I also get mild twinges of pain on the other side of my face in the temple area...when my dad was diagnosed with GCA he had terrific temple head pain... mine are twinges... does it come on this way and get worse? my 83 yr old dad died last month from GCA... the prednisone actually killed him within a year as they couldn't reduce his level of prednisone less than 60 every day... dementia,breathlessness,vision loss, muscle wasting in arms and legs, thinning of skin until it ripped him in half. He was a healthy everyday golfer. Ended up having to place him in a skilled nursing home. sorry I'm getting wordy...
the breathlessness all of the time now is my biggest concern ... anyone else have this issue?
has anyone heard of a drug called Tocilizumab? I'm seeing a specialist in NYCity who claims this is a great drug for our problems and could replace the prednisone.
Thanks for listening to me and I look forward to forming friendships through our correspondence.
Sorry about your dad - and now you having PMR/GCA too.
To reduce from 20mg to 12.5mg since October is pretty fast and I'm not surprised if you don't feel well just because of that. Most experts would keep you on the starting dose for 4-6 weeks, then the next dose down for a similar time - which means you would probably still be on 15mg. It doesn't sound much of a difference but even 1/2mg can make a big difference to how you feel.
You could be hatching GCA - everything tends to start small and then get worse and you have been on a dose of pred that was/is still enough to mask the development of GCA inflammation,
As insight says - starting a new thread with your post would mean a lot more people will see it than with it being in the middle of the thread. Only the people actively following the thread are likely to see it.
At the top right of the page you will see a box with Search PMRGCAuk - type Actemra into it and you will get a list of posts about Actemra, the brand name for tocilizumab. It is now FDA approved for use in GCA and there are US rheumies who are using it for patients just with PMR though how they arrange the cover I don't know. It is very expensive so I'm sure the insurance companies will put some restrictions on it. It isn't approved for use in the NHS in the UK for that reason.
I'm not convinced it will replace pred altogether - I think they will continue to use pred and start the tocilizumab asap as it does help the patient reduce the pred dose very quickly - but there are no studies using just Actemra, it wouldn't be ethical to risk patients losing their sight when it is known that pred protects against that reliably. There is no way of predicting who is at what stage of GCA and how soon vision may be affected - it can be a slow process or it can happen suddenly, like a stroke, so putting the patient on a drug that works reliably is essential very soon.
Sorry to hear about your dad. I lost my dad just over 2 years ago from heart failure and copd . His body shape changed completely (was on AA). It's not pleasant.
When I was up at 15mg I had terrible breathlessness. It didn't go til 10mg and then if I get a bit stressed within a couple of hours of taking it I can feel my breathing going.. a combination of pred and anxiety. I went back to drs several times and spoke to rheumy who both said not side effect of pred. My face was rotund and red checked and my hump was developing even at 15mg. I have since followed low (ish) carb diet that seems to reduce face swelling and my hump more like gentle swelling. Profuse sweating exacerbated by ultra high blood sugar has reduced from low carb too.
Hope you pass through the breathlessness. It's not a pleasant feeling. Sitting still and gasping is scary. 🌻
I know ...thank fully you posted article at time that reassured me. I mentioned that to rheumy nurse but she blanked me. The thing is if they had said yes it could well be side effect I would have still taken pred but perhaps would have panicked less and not made breathing even worse.
Welcome, Carolpatriarco01! First, I’m so sorry about the loss of your father. It’ had to be so difficult to watch a parent lose health in such a fast and dramatic way.
I’m also sorry that you are suffering. I’ll leave the medical advice to the Aunties (experts) and to those that may have also experienced the side-effects you are having.
Until they arrive (most likely they are sleeping at this hour), you can search and read about Actemra (Tocilizumab). It was approved by the FDA for use in treating GCA in May, 2017 (USA); however, as not yet approved in the UK there may not be many with experience with the drug.
One thing you may want to do is start a new thread/post with your question. As it’s currently a response to another’s post on a different topic, I’m afraid that it may get missed by those that you want to target.
Again, welcome and good job on finding this forum. What a blessing, huh?
Hi, Koala, I very much appreciate your Insight and hearing of someone else who is trying to treat this in a more holistic way. My next appointment with the Chinese acupuncturist and herbalist is next week, and he wants to start me on Chinese herbs, which I have been very very anxious to try. One of my concerns is, I know it will be very expensive, and I, unlike you, do not have an inheritance that I can use, so I don't know how that's going to work out. I would be curious to know, however, how long did it take for the Chinese herbs to kick in for you?
without knowledge of what is IN chinese herbs or HOW much of it you take... why do they appeal? Just because they are Chinese? Where is the research? I had a friend who did chinese herbs for her pain and ended up with a bad batch of something tryptophan I think... and is now nearly disabled from the poison. I think unless you are able to really know WHAT you are given it is a bigger risk than the prednisone. I am and always have been totally opposed to most prescription drugs... refused bone medication long before this, and lowered my cholesterol with diet and exercise rather than statins.. and feel the same way about holistic "drugs." There is not enough research.
Hi yogabonnie, at least with prescription drugs they will have been OKed by the regulators having taken several years of trials and you can read up on them. Supplements, including Chinese medicines, do not have to go through these rigorous checks and as you say you have not got a clue what you are taking. I think I would do an awful lot of research before embarking on a course of such meds.
Using endangered animals. I never thought of that. It's terrible. Especially since my friends who do use them are HUGE animal rights people. good to know this!!!! thanks HERNONN5
A friend of mine with terminal cancer gave up all allopathic treatment some time ago, it might have been well over a year. He is himself a doctor. He has since been kept alive and given some quality of life through Chinese medicine, which includes something derived from a certain toad. I don't know any more than this, except at one point when his medicine was about to run out his Chinese medicine doctor arranged to have some of the substance smuggled in. Another friend of mine, since departed, lived for four years after a diagnosis of cancer where the doctor gave him less than six months. In this case he continued with as much of the standard treatment as he could, but added Chinese therapy. He said, and his wife concurred, that it was the Chinese medicine which made his life worth living. In fact just a few days before his death he was up a ladder painting his house.
So I am far from concluding that there is no merit in Chinese medicine. But just as there are ways our standard treatments can be misused I think this is true of the alternatives as well. We must do our homework when accepting treatment of any kind, especially when it's unregulated.
There is a theory that when treatment for cancer is merely palliative it is probably better not to bother and the patient will possibly live longer. But doctors often don't know when to give up trying to poison the cancer (which mostly is all it is) and end up poisoning the patient.
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