Living with PMR with no prednisone

I'll start this blog with a little bit about when I acquired PMR and treatment. I was diagnosed 2 1/2 years ago when I was 56. I am a librarian, live alone and am my sole support. Like many, I had injured my shoulder and then within a few days, I had a huge flare up of PMR. Initially I went to my GP and he suggested that I go to a Rheumatologist. I did. He started me on 20 mg of prednisone and wanted me back in a month.There was instant relief but within about a week I was already having side effects from the pred. My hair was falling out in handsful. The doctor felt that as I reduced it would eliminate the side effects. I was reduced to 15 and he wanted me back in two months. By the end of the second month, I was getting very little relief and added to the hair loss, my skin became so fragile that even turning in my sleep caused crazy large bruises. I then developed a huge rash. I decided that I would wean myself off the prednisone and try to manage on my own. Even when I was down to 1 mg I still had the side effects. I hate to think of what would have happened if I had stayed on it long term! Once I was off the prednisone, my side effects went away. I hurt a lot but didn't go to the doctor again for almost a year. Finally, I went back to my GP, told him of my experience and he suggested that I have periodic (4 to 6 weeks) shots of solu-medrol. He said since I then would not be metabolizing the steroid there should not be side effects. He also said to just come back when I felt I needed another shot. He also went ahead and gave me hydrocodone pain pills (I cannot take NSAIDS at all due to side effects). I take very few, mostly when it's getting to almost be time for a shot. Right now, this is working for me and I can continue to work. Hope this is interesting to some of you who may not tolerate prednisone.

52 Replies

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  • I've only been on prednisone for a few weeks but already hate the side effects I can feel, not to mention what is going on inside my body!! I would love to wean off ASAP but don't know how I would function.

    When this started 5 weeks ago I couldn't roll over in bed, get my own clothes off & on, and could hardly walk. The pain was horrendous but the stiffness made it almost impossible to ambulate.

  • Hi there , I started prednisalone in april within 24 hours all pain and other symptoms had gone !! I couldn't believe it , for 8/10 weeks I felt I had a life back then BANG I started feeling I'll again , my gp had only told me of the minor side affects of this drug but FAILED to tell me that after aprox 3 months some major side affects can occur I'm now under a heart consultant , rapid heart rate having a heart scan this Friday also very bad tremors , sometimes a cant lift a cup without spilling the contents also the fatigue is back ten fold , joint pain ( I already have osteoporosis ) had it for 3 years now that's worse bad mood swings and depression , sorry to go on but I could name a lot more , also have a high white blood cell count and also seeing a general medicine consultant on Wednesday, I'm furious that my gp never warned me of all these problems and to even start tapering me off them could take upto a year

    If I had known all this I would have thought long and hard about taking this DEMON DRUG, I know pmr can be crippling but I know there is alternatives. I just have to wait now for the outcome and hope the problems are reversible.

  • Hi Kylie

    I am experiencing some shortness of breath and tightness around from my back to front of sternum. I've been on prednisone for 5 mo dropping from 20 in January to 10-15 now. Am not as comfortable on the lower dose but am trying to get off of it because of the side effects. My hair is falling out also. I've been told that the chest muscles hurt because of the inflammation? I also have gained a lot of weight despite being careful of intake. Also use Vicodin for headaches. Is a problem not knowing what to attribute the pains to sometimes. Doctor's don't seem to know how disabling PMR can be.

  • Yeah! and they do not care how much you are suffering. They are in bed with the FDA & big Pharma who have no interest in curing any disease because it interferes with their lucrative drug business. One thing your Dr. failed to mention, whoops, was the increased risk of Diabetes from Prednisone because it raises you blood sugar.

    My idiot Dr. said don't worry about it just exercise & cut back on the carbs. That is the biggest lie

    because most people with PMR cannot exercise sufficiently to burn off the carbs. I will never take

    that Demon drug again and thank God I took it off an on for 6 months before I knew better. I have had PMR for 13 months and being 75 does not help. I just do not understand where this evil disorder comes from and the Dr's do not know. I was a healthy 172 lb hunk of muscle and now I am 162 and have lost a lot of muscle.

    With the help of God I pray it goes away like they say it does.

  • Go to Dr. Mercola's websites type in PMR, Arthritis, autoimmune diseases. This man has treated autoimmune for many years with natural products. Vit D3 levels are extremely important, as is type diet, and Cucurmin being used in your daily life. Good Luck. I am treating PMR, O/A, R/A without prednisone. Was on it for a year, thankfully without ANY side affects, but now off and NEVER TO GO BACK ON THAT POISON. Good luck and do your own homework. There is also a medication called LDN which is being used by a few GOOD doctors that is of great benefit. You are your first defense against modern Western medicine and doctors. They only know how to prescribe not cure. It's not a money maker.

  • what is LDN?

  • Yes I know, I am 75 and have this curse for 13 months. My drug happy Dr. put me on Prednisone for three months then off for 6 weeks due to surgery. It is really nasty stuff and I will never go back on it again. Here's what you have to look forward to with Prednisone, Elevated BP, blood sugar, weight gain, Cataracts, muscle loss and run the risk of Diabetes due to elevated Blood sugar. It also screws up you blood vessels causing those horrible purple blood spots on your forearms. Since I tapered off of Prednisone I have had no blood spots. Dr's only care about one thing, making money and they are in bed with big Pharma.

  • I know what you mean! Just before I went back to my GP I couldn't lift my arms first thing in the morning. Kind of hard to get out of bed or get ready for work. I started getting up much earlier since then just so that the extra time to limber up is there. :)

  • It's me again! All that vtkim and spotshouse say - I have, and am still experiencing but all my results say it's not PMR. Did you both have all the tests that could posibly be done to confirm definitely is PMR?

  • I've had a CBC, sed rate, and rheumatic factor which were all normal except my white blood count, which was elevated. So the blood tests told them nothing because even with a normal sed rate, I could have atypical PMR.

    When I finally see rheumatology next month, i'm hoping i'll get some more definitive answers.

    How are you feeling?

  • I had a sed rate and rheumatic factor test. My sed rate was barely elevated and the other normal. My second sed rate after I was off medicine for a year was normal. But my doctor and the rheumatologist both said my symptoms were textbook PMR.

  • I was diagnosed in July although bloods esr ? low 3 doctors later I was undiagnosed so began a schedule with doctor to reduce pred ( all symptoms left once I was on it leg pain knees shoulders neck stiffness. I was off it a few weeks ago but as got to lower pred my symptoms were terrible. As I don't know anyone else with it but getting feet in pants and trousers feels like I have a hangover some mornings ( but no alcohol) takes ages for my lims to wake up. I have had chiropractor treatment which has helped with pelvis and groins pain and several alternative treatments do seem to have helped all round I have been taking anti inflammatories a lot to start with but down to about 2 a day not fond of any drugs . So many other things could be factoring in I have also bought some books on inflammation and got some joint juice from health shop. I am wondering if diagnosis correct or can symptoms vary any ideas I am not looking to be having it it was no fun but so debilitating too

  • Also doc made a referral to a Rheumatologist although all joint movement is good on examination but stiff and getting to the floor is agony I have also taken up gentle swimming x

  • Hi Steam,

    how are you doing. I just read your blog from a year ago. I am resisting going on prednisone. I have the sore stiff arms and shoulders, stiff hips and can't bend down. I am seeing a acupuncturist which seems helpful i take lots of supplements (Udo's oil, MSM, milk thistle, vita a b c d e....curamen (turmeric), ) I'm presently drinking green drinks for breakfast and lunch and eating a healthy supper - fish, salad, veggie...I'm no saint - I have 1 cup of coffee a day, and an ounce of red winein the evening......I go for a walk every day

  • Yes by all means keep resisting Prednisone because it is a nasty, demon drug that raises BP, Blood Sugar (Diabetes risk) causes Cataracts, muscle loss, bone loss to name a few. The bad greatly out weighs the good. It only reduces pain, big deal. I will deal with the pain to avoid all the other serious consequences.

  • M . E. CROHNS .LUPUS .??? Some sort of related Auto -Immune "rubbish monsters "..............xx

  • Although steroids can produce unwanted side effects, it is important to be aware of the fact that without such treatment to control the inflammation of PMR, you are at higher risk of contracting GCA.

    That was my experience when I remained undiagnosed in spite of sky-high ESR and CRP markers, and bedbound for several months in early 2006, attending rheumatology appointments by ambulance and wheelchair. I did spontaneously recover in just under a year.

    However, within 3 months, more violent symptoms arrived in the way of head/eye pain and jaw pain on chewing, nausea with vomiting and rapid weight loss. Thankfully a different rheumatologist diagnosed PMR and GCA and 40mg of Prednisolone turned out to be a Godsend even with all its accompanying side effects. Importantly, at least my eyesight had been saved.

    If I had been diagnosed with PMR in 2006 and treated accordingly with steroids to get the inflammation under control, I would have been at less risk of developing GCA! I believe the risk of contracting GCA for people on steroids is about 3 in 10 but that rises to 7 in 10 for those not on treatment.

  • What is GCA? Did they tell you that Prednisone can cause Diabetes because it raises your blood sugar, bone loss, cataracts and raises BP too and cause those horrible purple blood spots on the forearms because it screws up your blood vessels. No thanks. Dr's say exercise and cut back on carbs, that is pure baloney.

  • baldbill, GCA (Giant Cell Arteritis) is an inflammatory auto-immune condition which can affect the large arteries anywhere in the body, including the temporal arteries. Uncontrolled/untreated inflammation can also lead to other very serious conditions including stroke.

    Yes, the prescribed treatment with the steroid, Prednisolone, can carry a risk of side effects, but if GCA affects the temporal arteries there is a risk of irrecoverable loss of eyesight.

    Steroids are the only treatment that will protect our eyesight, so, rather than, in your words, being "pure baloney", I think most of us would prefer to take our chances with Prednisolone than risk the alternative.

  • Thanks for your reply. I am 76 so I do not know if it's worth the risk to get Diabetes, bone loss, cataracts, raise in BP and put on more drugs that are worse than the condition. The MD's name of the game is drugs, drugs and more drugs.

  • Although, like many medicines, Prednisolone carries a whole host of possible side effects, no-one gets them all and some patients don't get any. In spite of the high Pred starting dose of 40mgs necessary for GCA, I didn't experience diabetes, bone loss, worsening of my cataracts etc, but the steroids DID save my eyesight and DID protect me from stroke. They also got me out of a wheelchair.

  • God bless you, as you are one of the lucky ones. I am trying to go natural as I do not consume flour or sugar. I am taking 1000mgs of Curcumin that is an antinflamitary and will research an antinflamitary diet.

  • baldbill, my anti-inflammatory diet contained plenty of oily fish (sardines (with bones - good for our bones!), mackerel, salmon and trout; beetroot, avocado, garlic and the herb, Turmeric, added to all suitable foods, such as casseroles, risottos.

    I avoided all processed foods, including processed meats such as in ham, sausages etc. I also avoided refined carbs, most of which turn to sugar in our bodies. I also avoided as much sugar as possible, and coffee except on the rare occasion - both can stress the adrenal glands.

    Basically, I avoided all foods with artificial additives, sticking to plenty of fresh veggies and fruit. Although expensive, I also had a lot of organic produce to avoid too many pesticides.

    Of course, none of the above will cure PMR - sadly nothing does at present, but I did notice that if I veered off the oily fish in particular for any length of time, I would become aware of more pain/stiffness setting in.

    A final warning: be very careful about avoiding Prednisolone if you have been diagnosed with PMR - the uncontrolled inflammation can lead to GCA (not to mention other serious conditions). I remain convinced that my undiagnosed, therefore untreated PMR let GCA in through the back door!

  • Yes, I am aware of that, and my doctor has briefed me on symptoms to watch out for. If I get them, he said I should go straight to emergency.

  • Hi Spots House! You are a star, a hero, to be taking the route you are taking through your PMR. Please carry on blogging and telling us how you are getting on.

  • Hi spotshouse, you are brave and I am a bit jealous too (expect most of us are if truth be told!!) Pre steroids, like Celtic, I became totally bedbound & needed help with everything (yes everything!!) I only managed to get to 17.5 mg & then had a flare, so not an option for me not to take steroids. There is also the GCA risk if not taking preds & having long term inflammation does put you at risk of other serious stuff too. So yes, steroids are unpleasant drugs ( my side effects are awful) but they are the lesser of two evils. Not sure why you would have had side effects at very low dose though. I think that our body naturally produces the equivalent of roughly 7mg, so unusual for people to have issues with side effects at very very low doses.

    Mingie, no, there doesn't seem to be a test to actually diagnose PMR. Some people have raised markers in their blood, but not everyone. The clinical symptoms are fairly specific though & if there is the 'magic' response to initial dose of steroids, then the diagnoisis is confirmed. If you don't have that magic response, it's more likley to be something else.

    Meggies

  • Meggies, I am very blessed that my PMR never got to the point that yours did. I realize that I am very lucky to be able to continue to work and mostly live normally. I am not completely without steroids; I take the injections every 6 weeks or so, but not the Prednisone. I don't know what my sensitivity level is to corticosteroids, but I know I can't take pred. I also can't take any NSAIDs; I have very bad reactions to them. I also follow the anti-inflammation diet and am very aware of GCA symptoms just in case.

  • I think you may have a point spotshouse. I was well over 12 months, slowly building up to a real big whammy, before I was diagnosed. GP (now see different one) thought I was too young at 58 for PMR, despite having classic symptoms & ESR which also was slowly increasing. Along came the 'whammy' & ESR 98 & thankfully saw different doctor & got diagnosis. I have often wondered if the outcome would have been different, if I had an earlier diagnosis.

  • I have just now this last week taken Prednisolon, startet on 15 mg. No tests yet. The pain was almost gone after 3 days, except for my shoulders. I am very happy to have my life back. My doctor wants me to just go on 15 mg for 2 months and says the shoulderpain may be disapear in this time. I feel no change since day 3 and feel I need some more in the start. I can live with this, but I can not do anything and I want to move and use my arms if I can. Have had this for just about 2-3 months and I feel with those who have had this for years.

  • Hello Iiselin,

    This blog comes to you rather late I'm afraid, but have just come across yours today. I wonder if your pmr has receded a little by now. If the shoulder pain has not decreased at all and you are in the same state as in the beginning then my opinion is the dose of 15mg of pred was not enough and you should ask for a higher dose. When I was first diagnosed 17 months ago I was given 30mgs of pred and all the pain was gone in 3 hours. Although I have had one relapse of pmr in that time, and was put back up to 30mgs again, I have made good progress and am now down to 7.5mg and coping pretty well.

    Best wishes, Pats.

  • Hi Spotshouse

    I felt I had to comment when I saw the title of your post. I was diagnosed with PMR in Feb, after problems since Dec 11. Things came to a head over Xmas when I couldn't turn over in bed, get dressed, get up from chair, get into car, walk other than a shuffle etc etc. I took prednisolone for 5 days in Feb, and all the above improved hugely, but I didn't like what I read about the long term side effects. So ... I stopped taking it (no problem after only 5 days) and with advice from a herbalist, chiropracter, and the internet, went onto a strict anti-inflammatory diet, with vitamins and supplements. I was also signed off work, and had complete rest with very short walks. No housework, no socialising/shopping or babysitting grandchildren. (I am 62) Slowly things improved, and now although I still have some difficulty eg tights and sleeves,gardening, reaching high, I am so much better. I have started a phased return to work and just feel more myself, albeit not able to do everything, still no long walks, and tire easily. My GP is impressed, as the inflammation markers, ESR and CRP have come down in line with improvements in how I feel.

    This route is not for everyone:GCA is a constant concern and I don't know how long before the PMR goes into remission, but at least I'll know when it does. The food research has been a full time job, and the vitamins/supplements/appointments are not cheap.

    PS some side effects appear to be from PMR, not steroids, eg hair loss. Happier one is I've lost weight.

  • Hi Moira I've been trying to find someone who worked with diet and supplements rather than prednisone. How are you doing now?? Pam

  • Hi Pam, the pmr went completely in 20 months. I gradually eased back to a more varied diet, though still go for organic home-cooked mostly. I still take an omega 3 supplement and now also take a proper probiotic daily ~ I have read quite a lot about how stress affects the gut, which affects the immune system. I think the health service is fantastic for emergencies, acute infections and so on, but I wish there was more research into alternate therapies for chronic conditions. I won't be the only one who has recovered from this disorder without years of prednisone and other drugs to counter the effects of the steroids. Hope you're in or heading to a happy position now. x

  • So good to find your response. So good to hear that you are well. These forums can be scary - I read yesterday that someboby was in remission for 5 years and then got giant cell arteritis - and then they wrote the statistic is 7 out of 10 people that get PMR and don't treat it with prednisone will get GCA....Geez,what do you do with a statement like that??

    I went to a wonderful osteopath today - she told me I shouldn't read all these messages....its hard to know what to do...did you have trouble sleeping? I fall asleep OK but I guess the pain wakes me up - every hour or so, for the last 45 days. I get up walk a bit stretch as best I can, heat up a bean bag and back to bed and to sleep - but I know my body isnt get the deep sleep it needs. i tried melatonin didn't do anything. Any ideas.

  • Yes, health forums have lots of useful advice, but it's like surfing the web with symptoms ~ lots of scary things out there. My GP had told me PMR should clear up in 18 months to 2 years, and I know that's not been the case for most people on the forum. But ... perhaps we're not hearing from the people who do have the 'typical' progression of the disorder.

    Sleeping ~ yes, it was a problem. Apart from the pain, I worried about what was wrong with me, about work, and anything else you care to name. The herbalist added something to her mixture and that helped, along with an electric blanket that I switched back on. I do have a lot of faith in natural remedies. As well as all the advice you find about this, I find a little carbohydrate before bed, ie 2 oatcakes helps now. Sleep patterns change as well when you get older, and I need the room to be quite cold (hence the blanket).

    Regarding recurrence, fingers crossed, but I think I'll be ok. I'm sure it was my busy, stressed lifestyle that did for me, and I've dealt with that. I'm now retired and still busy but make time for me. I have even started meditating with Headspace and feel so relaxed I wish I had done it years ago. Try not to worry about sleeping. You might find that if you've got a sympathetic person such as your osteopath to talk to, that will help. I think the hour each time to talk to the herbalist about how I was feeling did me as much good

    as anything. x

  • Thanks Moira,

    Ironically - I am retired - and meditating, and eating organic and exercising so I just don't quite understand. Anyway, I am feeling well supported and my husband and I are going to go visit our children and grandchildren .....and visit some friends. We'll see how that goes. i have planned quiet days between the busier ones, and my children are great ( a Dr. and a massage therapist and an organic farmer) so- I will be surrounded with love.

    Had a painful day today - the osteopath warned me that might happen - but also, it should get better after a day or so....

    I went to zumba, meditated and had an infrared sauna.

    Take good care. So good to hear a positive story!! Pam

  • Well Pam, it sounds like you're doing all the right things. I hope things improve for you, and enjoy your family time (although that can be tiring). Good luck and keep in touch. x

  • Thanks Moira,

    I would like to keep in touch. Had a painful day yesterday (fasted)...rough night - and lo and behold I'm feeling much better this morning.

    I see my GP next week for the first time. I thought I should get some tests - but I would like to continue with my natural approach so I hope she doesn't pressure me to use prednison if the tests show inflammation.

    Have a good day. It's 4degrees here today in Edmonton Alberta, Canada, snow predicted (it was 14 degrees yesterday)where are you again? Pam

  • Hi Pam, I'm in a small town outside Edinburgh, Scotland. Funnily enough one of our sons-in-law is Canadian, from Edmonton!

    Very good idea to see the GP. Mine was ok about not going on steroids, and arranged for me to have monthly blood tests so he could monitor the ESR and CRP levels. Also lots of warning about GCA; told me what to look out for and said to phone anytime if worried. The blood levels started to gradually come down, so we could both see it was working. I think if you're not taking steroids it's even more important to be monitored. x

  • Hi Moira,

    It would be very intresting to know what your alternative regime to steroids is because , as you say, pred. can cause side effects. If you feel you can share some of your knowledge, I'm sure many of us will be interested.

    Pats.

  • me too.

  • Sorry for the delay in replying. When diagnosed in Feb, I read everything I could and started an anti-inflammatory diet. It got stricter the more I learned. Basically no processed/ refined food whatsoever; no grains, so no bread, cakes, biscuits, pasta, flour ...; no dairy; no sugar; no chocolate; no caffeine; no alcohol; only organic chicken and no farmed fish.

    I learned to love green smoothies and steam all vegetables if not raw. Oh, no nightshade, that's potatoes, tomatoes, peppers, aubergines. There is loads on the internet re anti-inflammatory.

    Didn't notice much improvement at first, but my GP was ok about signing me off work to give this a chance. Many warnings about GCA symptoms. There is apparently a 70% chance of this if PMR untreated. So, a complete rest from everyday stuff, which I couldn't cope with anyway. Then I went to a herbalist who looked into inflammation for me, and has been making up a mixture ever since. The chiropracter was also working on my muscles. By the end of March I was feeling a bit better, and managing a daily short walk. Big day when I could put my socks on!

    Things have improved steadily and my monthly blood tests reflect this. Now almost normal. I still have aches and stiffness and would struggle to garden or walk any great distance, but there's no comparison with how I was. I even got into a bath this week, and out again!

    The GCA risk is serious, so I'm not recommending this, just saying it worked for me. It hasn't been easy. The menu choice is very limited, but I'm gradually re-introducing things to see how it goes. Very good day when eggs were added.

    Hope this is helpful.

    Moira

  • Hi Moira, I think many of us have been waiting for this reply. Thank you very much for getting back with this very interesting run down of your eating regime.

    To say the least, the path that you have followed to combat the effects of PMR could almost be described as draconian. However, you seem to be coping.

    I have cut out many of the foods that are on your list, but not all.

    I have always had to carry on with some physical work, and therefore I have needed unrefined carbs to sustain me. I almost never eat refined sugar or carbs.

    Please try to keep us informed as to how you progress. Lets face it, your alternative regime could lead to a whole new approach in the management of PMR. I'm sure we all live in hope.

    Pats.

  • Hi Pats

    Yes, it has been draconian, but getting easier. Recently I've added whole organic oats with home made almond milk. Sounds really alternate, but actually easy. Soak 1/3 cup of whole almonds overnight, rinse thoroughly in morning, then put in blender with 1 cup of water. It turns all white and milky. Strain to remove bits (I feed this to the birds, but it can be used in place of breadcrumbs). Will keep in fridge for a couple of days. I have it cold with walnuts, coconut flakes and raspberries, but it would also work with porridge.

    My big challenge next week is going on holiday to Toronto for 10 days. Thinking about length of time in seat on plane, and the big one ~ what will I eat? The hotel offers some self-catering, so hoping I will be ok. 2 weeks ago I fell off the wagon at a family event and ate loads of things. Actually found it too sugary, but that didn't stop me. That night and the following day I had to take prescription painkillers. Happily the effects wore off, but lesson learned. Food affects my recovery from this horrible condition.

    Will keep you posted.

    Moira

  • Hi Moira

    I have to say this "You are very brave!" I wish you lots of luck and I'm sure all who read your blog feel the same. I wonder if you can take food with you for the plane. Canada eh. My partner's been twice to work there and loved it. I hope they look after you well. Don't forget those painkillers.

    As for falling off the wagon. I guess we all do that and most of us have pred. to help us, so don't beat yourself up about that one.

    Your almond milk sounds lovely. They are my favourite nuts. Must try your recipe. I no longer eat tomatoes or peppers as I find they give me pain, especially in my joints.

    When you get to Canada I hope the sun shines every day. Bon voyage! and have a great time.

    Pats

  • Thanks Pats!

    I'm already packed ~ quinoa with chicken and pine nuts. The mixture from the herbalist duly labelled and fingers crossed for the security check. Probably the worst that will happen is they'll ask me to taste it.

    I'll let you know how it goes.

    Moira

  • So, so proud of you.

    I'm sure many of us will be with you in our hearts. Waiting eagerly for your next message.

    Pats. x

  • Hi Pats

    All still going well. Very tired and sore for 36 hrs after flights to Toronto. It was a mistake to change terminals at Heathrow without assistance. It was so hard to walk the distance, and stepping off the moving walkway caused a huge jolt of pain. Apart from that, Canada takes organic food seriously, and we found they were happy to try to accommodate me in restaurants. Even in a food court we found organic, fresh salad with quinoa.

    While we were there I felt well, and walked further than usual. I did try to build in little rests throughout the day. I find a little activity often is best.

    Since coming back, my ESR test has dropped to 11, and CRP is stable at 2, reflecting how I feel.

    The next big challenge is back to work when school starts week after next. It will be a very slow phased return, but I'm just hoping the stress of the job doesn't get to me. Like many sufferers, I seem to be better when there are few demands on me.

    Moira

  • Hi Moria CT

    Looking over this email from you and I know its old but its right up my alley in every way & I hope you get to read it.

    My PMR diagnosis Jan 2015 altho GP muted it last year (March 2014), but due to a nasty fall onto concrete landing heavily on my left side playing table tennis, my new Rhemy Spec treated the painful areas with small amounts of steroids to heal the pain at injured soft tissue sites - this just masked the PMR I believe. Over a period of nine months I had a total of 26 injections and 2 strengthening injections in upper and lower spin.

    He uses minute amounts of cortisone.

    A major change in pain, lack of movement in bed and getting out of a chair plus walking Jan 2015. Shock horror, on onto Preds.

    What I want to say is that I am extremely sensitive to drugs and Pred eroded my gut lining of small intestines -gasostropy confirmed this so PPI's prx'd also - absolutely no better, dreadful side effects.

    I have since had an acid resistant capsule of Hyrdocortisone made up to break down in bowel this avoiding my gut area - thus far so good, expensive but worth its weight in gold as far as leaving the gut alone.

    My hair on crown area has thinned, feel the cold terribly through my head. Hasn't helped my respiratory issues which appear worse now due to steroids.

    I am on a gluten free diet, mostly dairy free macrobiotic diet and take digestive enzymes as I have deficiency in this area. Take a variety of fishoil supplements, COD liver oil, Metagencis Vit D 3 x 1000 daily with a Vit K for better absorption of the Vit D as per recommended by my ENT Specialist to help with my respiratory issues of which I am susceptible. I am huge fan of Lypo-spheric Vit C - never without this.

    Almost no carbs, eat variety of nuts steamed veggies (large variety) juice organic carrots and also make my own bone broth the heal the gut. Pro and prebiotic's daily. Absolutely no sugar, this is poison to those with severely compromised immunity. I eat 2 sometimes 3 pieces fruit daily for my sugar.

    I have just begun Ozone/Oxygen therapy as I have been hit with one virus after another this winter in NZ - very expensive and Dr treating me is confident is will be able to help get me well as I want to reduce my steroid use come spring.

    Blessings to you and hope this finds you well.

  • Hi Moira,

    You must be so proud of yourself. You've done it. Gone so far, seen so much, paced yourself well and returned home without a relapse. What an achievement!

    As you say, the next challenge is work and only you will know how to handle it. You're right, stress is a major factor, but your adrenals still function pretty well were as we who are on steroids are on a fixed dose, therefore are prob less well equiped to deal with stress. All we can do is increase the dose and hope it works.

    Wishing you all the luck you need,

    Pats

  • Thanks Pats!

    Moira

  • Hello oldjockey. 

    I'm really interested to read your post - thank you, and you clearly have some very expert health advisors with an alternative and more integrated angle to that of the mainstream in the UK.  

    Intuitively, I support your idea since I feel that (in my case, reducing to a lower level) coping with the side effects of the 'preds' / and the process of weaning-off them can be more challenging than coping with the symptoms of PMR itself, un-aided by this equally powerful and toxic medication.        

    In short, my current 'gut feeling' (excuse the medical pun!) at my own stage in the process (i.e. relatively low daily dosage of 6-ish mgpd) is that I would be better to take the risk of throwing-away the preds and take the risk of suffering a bit more short-term but manageable (by pain-killers if necessary) physical discomfort in order to cleanse my  system of these chemicals and let it get back in balance naturally.  Mmm.. I don't know what PMRpro and some others would think about this..?!

    I qualify this by acknowledging that, in some cases (e.g. with GCA especially, there is no room for manoeuvre and the risks of getting the medication 'wrong' can be life-changing).   The mainstream advice for PMR / preds as a solution to managing the symptoms seems to be to taper 'slowly and gradually': I have written an article here about my relatively scientific / mathematical 'take' on this, with a very positive response. 

    But, all-said, I'm wide-open to others' ideas and experiences: and think you may be on to something very important here.. 

    Many thanks

    MB :-) 

     

        

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