PMR invades my life

PMR invades my life

DIagnosed 4 weeks ago. Also have severe osteoporosis. On 20 mg prednisone. Doc says take at 5:00 am. By 8:00 pm have shoulder pain. Take 2 Aleve and 1 Advil PM. Wake up around 3:30 am with worse shoulder pain. Take 2 Advil and 2 Tylenol. Gets better during the day. Any suggestions? Walk 3-5 miles per day. Tried Qigong. Helped a bit. Is weight lifting a good idea? Trying to do one activity then rest 2 hours before trying something else. Spoon theory resonated. This is quite a life style adjustment for type A personality. Help! Thankful for my friends across the pond!

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  • Hello from the UK. There are plenty of us on this forum who have been all get up and go and are coming to terms with having got up and gone, gone to another all together more difficult world where type A can't exist. There will be more replies soon from those with PMR (I'm GCA only, so far) and they may well say split your dose, but sit tight.

  • Thanks for quick reply. I tried splitting my dose but night Pred made me hyper and unable to sleep. My Rheumie said taking Pred at 5:00 am limits side effects. I'm very careful about diet. Eat about 5-6 times a day...protein, vegetables, fruit. That's it. Type A fears weight gain! New normal is for a reason. Slowing down has lessons and benefits. Seeing this as a new project! Ha! Ha!

  • Hi Sandy,

    Welcome!

    How did you work your split - recommended is 2/3rd morning, 1/3rd evening, but you could vary it if too much later on affects sleep. Maybe as you're on 20mg, you could try 15/5 split - that might be enough to get you past 3.30am but not affect sleep too much. Sometimes you just have to experiment and find what's best for you. Unfortunately most people do have sleep deprivation early on anyway whilst body is adjusting to Pred.

    Walking is good, but not too strenuous, both the PMR and the Pred affect muscles, so they take longer to recover than before. Wouldn't really recommend weight lifting for same reason - could you try something a bit gentler, like Yoga, Pilates, Tai Chi etc. As you rightly say - gentler & slower has its benefits! You have to put your Type A personalityon the back burner for a little while - we've all had to learn that but one day you'll be able to retrieve it!

    Take care!

  • Thanks so much for your optimistic advice! I love the idea of 2/3 and 1/3 dosage. I just lifted 3 pound weights for shoulders and 5 pound weights for biceps, triceps and back. Only spent 15 mins. Ain't my bedroom. I've lifted for over 20 yrs. at least once or twice a week pre PMR. Rest period is following. I have been a Zumba queen for years but not now. I agree, less is more during this temporary, tenuous time!

    You take care as well.

  • What is the normal cpr count please

  • Don't know. Just know my numbers are very high.

  • I was led to understand at my diagnosis (April 2012) it was less than 6, but looking on web today that figure seems to have been amended to below 3.

  • Oh no! 99 is horrible! I know the markers cause the fatigue. Doc is keeping Prednisone (25 mg) as low as possible to address pain and osteoporosis. The 5 mg increase is not consistently better. Bilateral pain is so much better throughout my body except for the unpredictability of shoulder pain. Sometimes it comes around 4:00 pm and 5:00 pm dose of 5 mg. helps but the degree of help varies from just a little to moderate. Some nights sleep and moving during the night are better than others. Same varied pain level with getting out of bed with pain and stiffness. Some days I feel good all day some times fair but manageable. There is no consistency. I have been on this dose for 1 week today. I'm trying to really limit my activities to keep pain level down. I am also careful about my diet. My weight is low. Just about 3-4 pounds less than pre-Pred. Eating small meals throughout the day seems to work best for me. If I wake up during the night, eat oatmeal with nuts and blueberries I can go back to sleep.

    Thanks for reading all this blah, blah! You have the patience of Job!

  • Hi again,

    Your CRP figures are high, but as I said in reply to another post they can be affected by other factors other than PMR.

    As your shoulder seems to be causing you so much problem, is there something else going on there? My GCA was undiagnosed for a long time because left shoulder was much worse than the other, in fact frozen shoulder was diagnosed, but it was actually severe osteoarthritis (later confirmed with MRI after correct GCA diagnosis made).

    The fact that your bilateral pain is better (all relative) confirms PMR related inflammation is being addressed.

    Many find that adjusting their dose, so that approx 2/3rd taken in morning, 1/3rd at night (which I think has already been suggested) helps the "crunch" time of around 4am when the cytokines are produced naturally. It means that you already have some Pred in your body ready to attack those critters rather that have to wait for it to be taken and become effective.

    We all get good days and bad, sometimes it's because we've done too much on the good days - sometimes it's seems completely random! Very frustrating!

    I don't have the patience of Job actually - ask my family!

    But as I've said 'ad infinitum' - been there, done it, got the T-shirt etc, so why not use that knowledge to hopefully help others.

  • The markers don't cause the fatigue - they are just a measure of the amount of inflammation present. The inflammation is due to an underlying autoimmune disorder which is making your immune system attack your body by mistake - so it sometimes makes you feel like you have flu. That's where the fatigue comes from. Even if the markers were low because you were on enough pred you might still feel fatigued. Most often if you have variable days it is because on the good days you do too much which creates a bad day - when you rest and so the next day is better.

    If what you have is JUST PMR then 25mg should be achieving more than you say it is. If the markers aren't falling at all - then maybe they are due to something else. But a week is still relatively early days so give it a bit more time. And stop panicking - because that is just stressing you and stress doesn't mix with PMR.

  • Thanks for the "don't panic" advise. I have always been a worrier. Not good for PMR. Not doing too much on any day. Really got the rest memo! Looking forward to Dr. appointment on Monday.

    Have a wonderful weekend!

  • Depends on the units and the lab where it was measured - they always quote their normal range and it is important to know that.

  • I think there are one or two different number results -- they use different scales to number the results.

  • The dose splitting might help if you do it differently - the antiinflammatory effect of pred lasts from 12 to 36 hours depending on the person and you are obviously nearer the 12 than the 36 hour end. You could try maybe 15mg for your early morning start and the rest later, some hours before you expect the pain to restart, it shouldn't be late in the day. If that works, you may be able to shuffle the timing - and take the morning dose later having gained overnight relief from your later dose.

    However - is your doctor positive it is PMR? There are other forms of inflammatory disease that cause very similar symptoms, cause night-time pain and which respond to Aleve in particular - whereas PMR is not usually helped by NSAIDs. It is also a bit risky mixing NSAIDs with steroids - both cause gastric irritation and together the risk is far higher.

    I wouldn't try much in the way of weight lifting - that won't help a bad shoulder! But if it is predominantly shoulder pain - maybe it is shoulder bursitis in particular and steroid shots might help that aspect and help you manage better with the oral dose.

  • Doc is a rheumie at Columbia Presbyterian Hospital in NYC and is on every best Doctors list. My markers are a little better than ESR 67, CRP 99. She is keeping me on 20mg for 3 weeks. In addition to Advil and Tylenol she has me taking Omeprazole with food. I had biopsy for GCA and it was negative. Shoulder pain improves after meds and movement. I just added magnesium, drink turmeric with lemon and water and just bought seaweed salad!

    Doc said taking Pred at 5:00am reduces side effects. So far, I haven't gained weight since I am careful about diet. I am very petite and have osteoporosis. Can't take calcium pills because calcium leaks from my urine. This sure is a challenge! Guess it's a gift I'm not totally comprehending!

    Keep the info coming!

  • Hi again,

    Just another point from your reply - a negative biopsy doesn't mean you DONT have GCA, all it means us that the tiny piece of artery they sampled wasn't affected, or if it had been affected previously, the Pred has done its work on the cells within that artery and reduced the inflammation.

    It's a bit of a conundrum really - a positive biopsy means you definitely have GCA, whereas (for the reasons given) a negative one doesn't mean you're in clear. Unfortunately - that message doesn't always come across!

  • So how do you find our for sure? My scores are slightly better than ESR 67, CRP 99. Before Pred. I had excruciating pains in neck, arms (between shoulders and elbows), thighs and groin. Now I only have pain is shoulders at the end of the day and when I wake up at 3:30 am before Pred at 5. Pain gets better after Pred and during the day with movement but it's still a bit tender.

    Why don't docs use Advil or Tylenol? It may not work and could have placebo effect. I have cloudy Pred brain! Sleeping 6 hrs may not help!

    I so appreciate your help. Where are you on the PMR journey?

  • Hi,

    Symptoms really are the key, although more hospitals are doing ultrascans. GCA affects shoulders, head and sometimes torso. The head is the most concerning, can lead to partial or complete blindness if not treated in time. Unfortunately I was one of the unlucky ones who had already lost sight in one eye before diagnosis.

    I had GCA for best part of 6 years, pre and post diagnosis. Free now, and been off Pred for about 10 months.

  • You are a blessing to me and so many people on the site! So glad you are off Pred.!

  • Since you are so knowledgeable, I have another random question. Can Pred cause an itchy rash that I just got on my neck and chest area? It looks like hives. My doc isn't availabile and my pharmacy is closed. I trust you over the Internet!

  • Hi Sandy,

    Sorry not to have got back to you before- times zones etc!

    Personally I never got a rash, but think some on here have asked the question before, so guess it's yet another side effect!

    You might find a mild antiseptic cream or antihistamine cream helps, but obviously if it goes on too long then pharmacist can help..but these things always happen at a weekend!

  • Dear Dorset Lady, nowt to do with PMR etc . . . how did you (and others) put a photo up on your posts? I would prefer to be "known" rather than a smiley face!

  • Go to your profile and edit. You can then upload from your computer. You may need to reduce original first, and cut out surrounding rubbish (technical term ) so you just get head. Bit fiddly, but you can experiment until you're satisfied with end result.

  • New day, new pain...right wrist. Had one glass of wine last night and whole wheat bread (first time in 5 weeks). Slept on magnet pad for the first time. Less pain during the night...way more pain in the morning. Shoulders, back of legs and right wrist. Took Pred 5:00 am still feel pain 6:10 am

    So glad I sent Rheumie enormous file from Orthopedist re. diagnoses spinal issues from curvature of the spine which was never addressed in childhood.

    Thanks for helping me find clues in past that may help me now.

  • Used a cortisone cream, feeling better. Thanks for your constant help. On the way to the eye Dr. Need to close one eye when I drive. Balance is off but it wasn't great pre PMR!

  • Should you be driving if you have impaired focussing? Is it double vision you have?

  • Yes, it's double vision. Dr. said it's ok to drive with a patch. However, I am not driving much to stay safe. When I'm in New York I simply walk or take the subway. Eye Dr. was not pleased with last markers which were slightly better than ESR 67, CRP 99. She doesn't think my vision problems are GCA. She treats a lot of that. She will discuss treatment with my Rheumie. They are colleagues at Columbia Presbyterian Hospital. I was in her office for 3 1/2 hours. It was very stressful.

    I sent Rheumie an email giving her heads up and she said we will stay the course of 20 mg Pred until appointment 7/31

    Thanks for listening. Good night!

  • I have been on prednisone since Jan 2016, starting with 15 mgs. I was undiagnosed the previous 6 months when I lost 20 lbs. I am now at 6 mgs for last few months. Re your itchy skin: I was recently given Ranitidine for ulcers, took 3 pills (2 a day, 150 mgs) and broke out in red welts, at first itchy, that started down my right arm, gradually the second and my legs the next day. This too happened on a weekend. I am still checking my skin for remnants of this awful event. I too, at age 78 was very active, dance, yoga, walking, dogs. Disease, not age, is the cause of our decline.

  • Thanks for sharing your story. It's amazing how PMR stops us dead in our tracks! I used a strong cortisone cream and the rash is almost gone. I'm not using any foreign soaps, lotions, perfumes. Going on vacation and bringing my own products. Just spent 3 1/2 hrs. at the eye dr. She said double vision is not GCA. I had a year ago long before symptoms of PMR arrived. She thought it was from a Botox shot, predicted it would go away in 3 months and it did. She treats a lot of GCA. These NY doctors see a lot of everything. Her office was packed. She's talking with my rheumie about treatment.

    Exhausted. Good night. Stay strong and connected. Love hearing from you.

  • Have you tried taking vit D3? it enables calcium formation

  • I've been taking vitamin d for years. Osteoporosis is genetic...mother, grandmother on and on. I have done all drugs for at least 15 hrs. Last year I had Prolio which regrows bone. Had 10% improvement on Dexa scan. Due for treatment soon and can't have Prolia if I'm on Pred. So back to Reclast.

    Since calcium leaks fro my urine I was on diuretics for many years to try to hold the calcium in but that caused hyponatremia. That limits liquids to 32 oz. per day.

    Side effects of drugs are deadly!

  • I have been having great results by taking my prednisone at 3 am. I also am taking a turmeric/curcumin extract twice daily 9am and 10 pm. Keeps me pain and stiffness free all day. The turmeric with lemon won't do much. Need to take a 95% extract with piperine at the least. Had PMR since March and currently tapering down to 10mg. Started at 20 also.

  • Hi pszak72. I bought turmeric/curcumin before my diagnosis and haven't taken it. Pred is doing it's job at 15mgs since diagnosis three weeks ago. I suspect Rheumy may try to reduce when I see him next week. Do you think taking the turmeric / curcumin at this point might help when it comes to reducing pred?

  • There was a program on radio recently about a survey on turmeric / circumin. They found that the powdered, cooking type one was much more effective than the pill one.

  • Nothing I have read supports that conclusion. I read through Clinical trials on curcumin effectiveness quite extensively.

  • The research on turmeric/circumnavigate was run by Dr Michael Moseley. He is often mentioned on this board regarding his diet books.

  • Did he have clinical trials to substantiate his findings?

  • I know that he used placebo too and there were trials. I heard it on a radio program so I cannot remember exactly. I assume there must be a paper on it though. I believe it was done with Newcastle University and they took blood tests as part of it for the three groups (placebo, pills, powder).

  • From all I have read about turmeric, it is not very bioavailable in the raw form. The extracts of turmeric, 95% standardized are the most usefull. It must also be taken with a meal containing fats and with some enhancing agent like black pepper extract (piperine).

  • That is what I am using it for and it is working very well. If you believe you are having a flare, take an extra turmeric supplement. You can take up to 3 grams per day. Just so it doesn't bother your stomach.

  • Did you get the extracts from a health food store? Online? Any special brand? I bought ginger today and will try ginger tea. A bit stiff today. Walking helps but I always have awareness that My body is not quite right! My shoulders and groin area are a bit tender. So far, I have never been 100% pain free.

  • Super Bio-Curcumin from LifeExtension works well for me. Get it on Amazon on sale, sometimes free shipping.

  • Doc is a rheumie at Columbia Presbyterian Hospital in NYC and is on every best Doctors list. My markers are a little better than ESR 67, CRP 99. She is keeping me on 20mg for 3 weeks. In addition to Advil and Tylenol she has me taking Omeprazole with food. I had biopsy for GCA and it was negative. Shoulder pain improves after meds and movement. I just added magnesium, drink turmeric with lemon and water and just bought seaweed salad!

    Doc said taking Pred at 5:00am reduces side effects. So far, I haven't gained weight since I am careful about diet. I am very petite and have osteoporosis. Can't take calcium pills because calcium leaks from my urine. This sure is a challenge! Guess it's a gift I'm not totally comprehending!

    Keep the info coming!

  • Yesterday I took 15mg Pred at 5:00 am. Had more overall pain than usual. My body craved the extra 5 mg. Took the 5mg at 5:00 pm. By then I was craving more than 5! I went to sleep by 8:30 pm, had some discomfort during the night but woke up with more overall pain but it was less debilitating than usual. I will stick with this for a few days and see how it works. Overall, my days are a bit worse.

    I think I need a higher dose all together but because of osteoporosis my doc is keeping it at a minimum. I don't think I am achieving 70% relief of bilateral pain.

    I also got an itchy rash on my neck and chest. Does this sound Pred related? Couldn't reach doc or pharmacy yesterday and don't trust entirely internet info.

    Thanks for your help. The forum is my lifeline navigating my new normal.

  • Hi Sandy I am so sorry you have been diagnosed with PMR. As PMRPro says if Advil and Tylenol help the pain are you sure it is PMR? Pred really is the only main relief for PMR. Also it is not a good idea to take Advil with pred, your rheumie should be aware of that.

  • Thanks for the information.

  • Why is Advil a bad idea? Is Tylenol any better? Not even sure they help.

  • Neither Tylenol or Advil do much for PMR pain if anything. Advil can cause stomach problems as can steroids. If you go to the website drugs you will see that it is recommended the two are not taken together.

  • Thanks for the help! I'm done with that combo!

  • Sandy1947, I note that you are on a PPI. If you haven't been prone to gastric distress from painkillers in the past, you'd be better off eliminating that drug. You could take ranitidine instead, or just opt for eating some plain yogurt with your morning pred to avoid stomach problems. Unfortunately omeprazole has been shown to contribute to bone thinning, which pred is also sometimes implicated in, so really not the best choice, despite what your #1 rated doctor may think. ;) Just a suggestion. The fewer pills the better if you don't really need them! Best wishes!

  • So glad you told me about Omneprazole. My bones are thin enough! Done with that. I am going to try 15 mg Pred at 5:00 am and 5 mg at 3:00 pm. tomorrow and eliminate Tylenol and/or Advil. When I first got on Pred I took 10mg at 5:00 am and 10 before bed and was up all night. Caused me to become hyper! Hopefully, afternoon dose won't interfere with sleep. Any suggestions about the time? Does 3 seem reasonable? Lots of trial and error with PMR!

    Thanks for all the help. I don't feel so alone.

  • You have to try it - you want it late enough to carry you over the night but not so late it interferes with sleep. Remember too that your body gets used to all drugs - and stops protesting quite as much so that may also have changed.

  • I appreciate your quick response. Last night I went to bed at 9 took 1 Tylenol PM, got up at 12 with severe shoulder pain, took 2 Aleve and slept late...4:25am. Woke up with shoulder pain and pain under butt. TookPred (15 mg) and recovered but still have shoulder pain though a bit better. I am not sure if I should take the next 5 mg of Pred at 3, 4, 5 or 6 today. I guess the later the better to address shoulder pain. Writing to you helps clarify my brain fog! I think 5 or 6. What so you think?

  • You will have to experiment a bit - you would assume later to cover you overnight, but later may interfere with your sleep. You have to find the balance.

  • Took 15mg Pred at 5:00 am. My body missed the other 5 mg. I had annoying pains in shoulders, groin and under butt all day. Just took the other 5 mg at 5:00 pm. I'll let you know what happens in the morning. Took it easy, walked about 2.5 miles (not all at once) and enjoyed cooking a feast for dinner! Made wild caught flounder, spiralized beet noodles with asparagus and zucchini topped with a hummus and lemon sauce! Yum!

    So thankful for your help!

  • Perhaps it would have been better starting with the late 5mg (if you see what I mean) rather than missing it in the morning.

    But you are where you are - hope it works well.

  • I don't know what you mean. Please clarify. Thanks.

  • Having taken the full dose in the morning yesterday, you could have taken the 5mg in the early evening so by the time you had taken the morning 15mg you had still taken the full 20mg. Does that make more sense?

  • That's what I did. Took 15mg at 5:00 am then 5mg at 5:00 pm. It really helped. I had pain this morning but less than when I took all 20mg at 5:00 am. Today I feel much better than yesterday during the day. Sticking with the new program. Just got an itchy rash on my neck and chest. Using a topical cream I had from a Derm who prescribed it for another itchy condition last year. Rheumy emailed to use a steoroid cream (over the counter). I'm guessing the rash is from Pred and/or compromised immune system.

    Thanks for always responding.

  • If you have been taking a 'prazole for a while..months day it might be best to taper. Had been on one for over 15 years and had to alternate days otherwise got bad tummy. Especially if you have been taking nsaids too. Good luck. As others have said rest when you need to and be gentle with yourself physically and psychologically. You have minimum control over body and it's reaction to exercise etc. Good luck

  • Thanks so much for your response. I am attempting activities slowly. I was ok yesterday after lifting 5 pound weights for 15 mins. I'm was doing 8-10 pounds prior to my buddy, PMR! Couldn't do much shoulders since that is my constant area of verging degrees of pain. I know to stop if something hurts.

    This forum is keeping me upbeat and cheerful.

  • Just remember your body is not able to tell you at the time that you are doing too much as it normally would. So yes, you may think you are OK at the time but the delayed onset muscle soreness may not come until next day or even later. If in the meantime you have done more it may make it even worse. So do plan a rest day between and start small - it won't be for ever, you will work out what you can manage and then be able to build it up - but that must be slowly too.

  • I agree with PMRpro. Your body may not tell you at the time but you will certainly know later you have over done it. I have been involved in conducting choirs recently and now ache and have sharp spasms in muscles, by right shoulder blade, that I didn't know I even had and certainly felt no strain when conducting at the time!

    You are obviously a very active person but from my minimal experience (one month) I advise caution and acceptance that, in this PMR journey, less can be more whilst, at the same time, remaining positive about what you can still do, even though today you may be doing less than yesterday, maintaining your positive mindset. Overriding all negatives, this bodily 'state' is only temporary, in the great scheme of things. Hope that makes sense.

  • Oh yes, your words resonate with me. The temporary nature of my body is coming across loud and clear! Also the need for self care is taking precedence over care of others! Pampering is my new focus. I had a massage last week (fair at best but still glad I went), sat in a beautiful garden in Grenwich Viallage and tried Quigong! A positive attitude is really important. Not always easy. I'll fake it 'til I make it!

    Keep the words for success coming!

  • Sorry about the diagnosis. PMR or GCA is not a "quick turn-around". Even though you have been lifting weights a long time you may find that it becomes more taxing...recovery time can bee longer....very frustrating. After 3+ years I still find it difficult to tell when I am overdoing it...It feels like it will be ok, then Bam! I am down and out. You will find good advice and encouragement on this forum. Best to you,

  • I am going slowly with lifting weights. Used to do 8-10 pounds, started with 5. Only did 15 mins. Couldn't do much shoulders since they are always sore too varying degrees. I did not have trouble recovering since I rested for an hour afterwards.I am only planning one or 2 activities per day with rest periods before and after. Get ready Forbes after dinner. Clothes are not so comfortable! Read, TV! Light computer work then bed around 9. Pampering myself is my new mantra!

  • Getting enough sleep is really helpful. My sister gave me a Fitbit a couple of months ago. I became interested in the sleep monitoring more than the 10,000 steps. Not sure how accurate these Fitbit are, but I was averaging 3+ hours sleep for the first few weeks!! It tells you if you are having deep sleep, R.E.M., or light sleep...or if you are tossing and turning.

    I have made some bedtime adjustments and now go to sleep no later than 10:30...big difference...averaging 6-8 hours now. Sleep med Ambien helps too...the prednisone has really interfered with my sleep.

    I have always been a "nightmare" person! To clarify...I needed some Ambien even before the PMR.

  • I find that if I overdo things through the day my sleep is impacted. Trying to find a comfy position when leg shoulder or arm muscles are overstressed is extremely difficult. I know how many steps I can do before I go over that threshold. I test the limits each week. How well I sleep and the pain/fatigue lets me know when threshold might shift for a few days. Like tapering pred I think this balance can be idiosyncratic.

    I have had sleep support from amitryiline and zopiclone for years now as part of broader pain management. It allows me quality of life I am okay to happy with. At the end of the day that's what I am after. What the use is quantity without quality.

  • Quality reigns in our PMR world! I even find using fewer words, wasting less time with people who don't interest me and general impatience for nonsense trumps at this point. I am become very clear on distinguishing the important from the unimportant!

  • Thanks for the info! I needed some Tylenol or Advil PM to sleep before the arrival of my friend, PMR. I am not up to monitoring sleep since I am overwhelmed monitoring activity level vs. rest, food prep to prevent weight gain and going from Type A personality to B or Z!!!! Today I slept in...got up at 4:25 am instead of between 2:30 and 3. I rest on my bed in the afternoon but I need nap lessons!

  • I'm from CA, your side of the pond. Greetings. I was diagnosed last December. I take delayed release Pred. ,Rayos is the name. I take it with a snack at ten pm.. it releases in 4-6 hours. This allows me to sleep through. I couldn't do the 4 or 5 am thing and be able to work. I hope you find a formula that works better for you.

  • Thanks for the wonderful information. I def will discuss this with my Rheumie. She's great (Columbia Presbyterian Hospital in NY). I email her and she answers immediately.

    How is your illness progressing? Have you experienced side effects from Pred? I can't imagine going back to work. I am a financial advisor specializing in retirement planning for urban school employees. I decided to take the summer off to manage PMR.

    I am eating a low carb, low fat stringent diet so I don't gain weight. Since my life feels out of control because of the diagnosis, I feel I can master the food. That is my new job! I do love food shopping, cooking and mastering a challenge. When I was in my forties I ate clean, lifted heavy weights in a hard core body building gym and felt great. Glad I had that experience to prepare for this new phase of life.

    Stay in touch. Connection helps my mental health.

  • I have not had bad side effects. Lol. Thinning hair, muscle wasting, and lipids went up so caved in and taking statin now. On low carb no sugar diet too and lost about 25 pounds, now down to post college weight. I do feel wobbly and thighs have ached but when I don't let the aches scare me into immobility I do better. I have started some whimpy muscle building for core, arms and thighs, and I do qigong exercises. The latter always makes me feel better. I also go to an osteopath monthly and she puts things back place. No fatigue to speak of, and no brain fog yet. But I've had to go back off the taper a while back so after 7 months I'm only down to 12.5. As I go lower on the Pred I suspect I'll hit the wall of fatigue.

    PMR seems to require an individualized learning curve.

    Good luck and do hang out with us and keep us posted.

  • Thanks for the details of your experience. I wish you the best. I am presently PMR consumed! Please continue reporting your progress. It's good for us and good for you! Stay strong.

  • Hi Sandy, unfortunately "welcome". I am also relatively new to PMR and this site where the most useful interchanges can be held. Like you, I am struggling with the adjustment to lifestyle, coming from pretty active to "mild". Finally getting on to Pred after many months of waiting for diagnosis, I have found it works wonders and can sleep through nights with little residual pain / stiffness in the morning. For exercise I limit to 9 holes of golf / week, a couple of hours of the heavier gardening chores, walking our boisterous lab' and household cleaning . . . man you should see me dance with the mop and vacuum cleaner over three floors!

    I am following closely my consultant & GP directions on medication. However I am also under the eye of an alternative doctor (qualified in the traditional sense though) with whom I have had some very interesting discussions. She supports Pred as the only way forward in the short / medium term, though is mixing up a batch of medicine for me that is aimed at improving bone structure in order to (hopefully) avoid AA in the medium / longer term. It will be difficult to assess the impact, though I am on for anything that helps me get over this PMR. Best of luck, stay A (mentally at least) and in touch here.

  • Hi Lucky88,

    Would you be willing to share your Docs "recipe" to avoid AA? I have just been diagnosed 8 weeks ago with GCA so am in it for the higher doses and hope to avoid AA, the side effects of which look almost more scary than prednisone!

    Thanks

  • Ditto re recipe. I've been taken AA for six months now, having given in due to Pred bone wasting threats after years of fighting the RX. Would love to stop AA. Need dental work, ( not PMR)Pred related. Have been hoping to reduce Pred. low enough to make it safer to stop AA. Then wait four months, per endocrinologist, and get the work done. Taking extra calcium and magnesium and vitaminD.

  • OK, I have not yet received the medicine and will see what information I can get re the contents. Happy to share whatever I can, though of course I am not in a position at all to suggest that it will be effective.

    My wife persuaded me to look to the alternative solution in parallel to (and not disrupting) the conventional approach. There seems to be a good mesh so I live in hope!

  • Well, I have now received the medication from my alternative Doc. The effect of these will be very hard to evaluate as I will continue taking the steroids / Vit D & Calcium supplements prescribed by my specialist.

    What I am taking on now are Mag Phos D tabs, Symph D3 Cerussite D8, Erysidoron drops and Birch leaf tea (the latter two I have been on for a month now). I have not (yet) obtained the detail of the first two items, though their aim is to prevent having to take the AA whilst the last two are aimed at rheumatic pain.

    So having started with 15 mg steroids for a week back in the beginning of June, I am now on 7.5 mg Pred / day and will drop to 6 mg on August 5th, two days after arriving in Crete for a 10 day holiday. I will be taking "spare" Pred' with me just in case, though (bar for a couple of minor wrist aches and a bit of a bulging belly) I am really doing pretty well and feel good.

    All the best to you all out there, less lucky than me. Rob

  • I want a video of you dancing with the mop! We all need a good laugh! I am interested in your experience with alternative medicine. I am very spiritual and just finished reading Caroline Myss, Defying Gravity. I also drink turmeric, lemon and water daily, eat seaweed salad, take magnesium, eliminated wine (hate this part), sugar, bread, potatoes, pasta, etc. I eat protein, vegetables, fruit and dairy for severe osteoporosis. I am vain and don't want to gain weight.

    I would love to hear about ideas that have helped from alternative viewpoint. I haven't gone that route but I find it intriguing.

    The forum is my life line because I don't look sick!

  • I have never been a regular alcohol drinker. Lately however, I find there is nothing more effective than a bit of alcohol to stop the 4-6 pm low I've been experiencing. Around that time of day, I often feel more aches, and a little weak. Getting active and having a snack seems to help. But a shot of bourbon is a very effective. As I have said before, bourbon is better for me than wine.

    Why did you stop drinking wine?

  • I was afraid to mix alcohol and Pred. Pre PMR I usually had 2-3 glasses of wine when I went out on the weekends. I now think I don't need all that sugar since I am vain and watching everything I eat. I don't blow up from Pred. I am quite vain, 5'2" weigh 105, wear a size zero or 2 and feel and look younger when I'm small. With this condition, it is uncomfortable to wear earrings, I'm mostly in sweats and can't wait to get into pajamas after dinner. My doc said I could have one glass of wine. I thought big deal, why bother!

    However, I am going to Nantucket a week from tomorrow with a group of women (including my sister) who love to drink lots of good wine while watching the beautiful sunset and having cheese and crackers on the deck overlooking the ocean. I'll probably cave in! I doubt I can completely stick to club soda! I never had bourbon!

  • Have a wonderful time in Nantucket. Should be so beautiful there. You might be able to justify the wine carbs if you stick to cheese without crackers. ;)

    Bourbon is easier for me to digest and gets the job done. I think I'm sensitive to some of the impurities in many wines.

  • Thanks. Where in the US are you?

  • Hi Sandy, I drink wine with pred and also the odd brandy! There is no particular warning against having wine and pred, although binge drinking is not a good idea even if you are not on pred.

  • I want a video of you dancing with the mop! We all need a good laugh! I am interested in your experience with alternative medicine. I am very spiritual and just finished reading Caroline Myss, Defying Gravity. I also drink turmeric, lemon and water daily, eat seaweed salad, take magnesium, eliminated wine (hate this part), sugar, bread, potatoes, pasta, etc. I eat protein, vegetables, fruit and dairy for severe osteoporosis. I am vain and don't want to gain weight.

    I would love to hear about ideas that have helped from alternative viewpoint. I haven't gone that route but I find it intriguing.

    The forum is my life line because I don't look sick!

  • Haha, methinks I will not video this part of my week . . . . as the house is empty bar me, I dress rather informally shall we say, with Pink Floyd, Led Zep or Queen to make my feet move. Even the dogs take to their heels and flee!

  • Thanks for the laugh! Have a great time dancing! Remember, we all need to joyfully express ourselves!!!

  • You are right. Spoke to my doc and I am no longer mixing Tylenol and Advil, eliminated Omneprazole, and splitting 20mg dose to 2/3 am and 1/3 around 4 or 5 to see if that helps with shoulder pain. Tonight will be the first time I do this so stay tuned! I appreciate your concern.

    You seem quite spunky for 83! Impressive.

  • Ask your Rheumatologist for RAYOS. It's time released prednisone. RAYOS helps to achieve therapeutic prednisone blood levels during the middle of the night when cytokine levels start rising. When taken at night (10 PM with food) the delayed release of prednisone in RAYOS helps improve PMR symptoms and reduce morning stiffness. I was very fortunate that my doctor put me on this medication right away as it allowed me to continue to work full-time. I would also ask about Actemra.

  • Brilliant idea! I'm in the US and hopefully, it's available here. Seems like most of my forum buddies are across the pond. I have an online pharmacy that may be able to get it.. I'll let you know how I do.

    I just got an itchy rash on my neck and check. Wonder if it's Pred related.

    Thanks for the suggestion. How are you doing on this journey?

  • Hi Sandy, one thing, Rayos is quite pricey!

  • My insurance is covering Rayos. I am. Kaiser Senior Advantage member. It may depend on your coverage/plan. And yes, it is very pricey. Couldn't afford it without insurance coverage.

    I brought it up to my They and she agreed. Then I had to work with the Kaiser pharmacy to verify my coverage level. Luckily it was in the Kaiser formulary.

  • That sentence was meant to be...

    I brought it up to my Rheumy.

  • You can edit if you want to - click on the right hand box with the downward pointing arrow...

  • I'm in Long Island, NY. Rayos and Actemra are available. Actemra a bit more tricky. Click on my profile and you should be able to see my journey.

  • Yes Actemra will be harder to convince my Rheumy about. She has already told me that if I have another flare she'd put me on methotrexate, not Actemra. I have PMR, not GCA (yet). Actemra is not approved by FDA for "simple" PMR yet. It is made by Genentech. There are "subsidies" available from the company but I don't know the details. One can call.

  • Diagnosed four years ago. It is a life changing condition. I have been able to do almost everything I had done befor just a little slower. Make room for some down days. At 8.5 mg's prednisone/day and taking 15 mg's one time per week till I get to 5 mg's prednisone. Rhumatologist says I can survive on 5 mg's. Watch out for infections esp. intestine. This is a serious condition and no matter what you may hear you may be in for a long battle. This site helps and so do people you are close with. Best of luck.

  • Hello Sandy1947 and welcome,

    You do look very beautiful, young and sassy in your profile photo and I think we can all understand the difficulties of coming to terms with the sudden horror of feeling 90 when we are just entering our prime!

    The pred dose has a magical effect on the pain but it seems to take many more months if not years to come to terms with the condition, which has the ability to present differently from one day to the next.

    I have found the advice on this forum invaluable and from it have been splitting my dose, taking half at bedtime and half in the morning. Before I did that I could not get to sleep at all, suffered with a horrible restlessness at night, and literally shook all day, as if permanently overdosed on caffeine. I had to stop drinking any caffeinated drinks at all!

    We are lucky to be able to get the gastro résistant coated prednisolone in the U.K. without any charge, thanks to our beleaguered National Health Service, although I believe this is a somewhat different form of the steroid from the prednisone which you have in the US. But if you CAN get the slow release product from your doctor It may well help with your wakeful nights and your evening pain.

    I would venture to suggest that in these early days of the condition you may be pushing yourself a bit too hard but please believe me that you can get back to the things you enjoy when your body and your head have come to terms with the PMR.

    My nephew is at Columbia doing his PhD and loving life in the Big Apple, and my sister recently presented her poetry in Greenwich Village, so I feel a connection with you there.

    Safe journey, lovely lady, through this maze we are all lost in

    Chrissie

  • I so appreciate your heart warming message. You inspire me to smile these twists and turns we navigate alone. However, people like you make it OK to go out there and live a little! Just got home from a date! Lucky for me he's a Dr. and understood I have to go to sleep early! It was fun getting out of the sweats! I even splurges and had a small taste of carrot cake. I actually don't miss the sweets! I'm thankful my weight is low. I so fear weight gain.

    So when are you coming to visit your sister or your nephew? I'm in the neighborhood. I will be at Columbia tomorrow for an eye doctor appointment. I have PMR with weird vision when I drive,

    Getting sleepy. Let's make the journey meaningful by staying connected! I have an old, blind. Coton rescue who I love, love, love. Can't believe you have 3 dogs and a horse!

    Sandy

  • Osteoporosis and high doses of prednisone as you should realize does not make for a favorable pharmaceutical marriage.... controlling your pain with chronic NSAID therapy likewise puts you at risk for cerebrovascular and cardiovascular side effect aside from the better-known gastrointestinal side effects.. so what does one do about controlling your PMR pain? I'm not certain how you are measuring the activity of your PMR..... my own doctor prefers to measure the sed rate trying to get my prednisone levels below 7.5 mg as soon as possible.... unfortunately Tylenol has very weak analgesic properties..... I have controlled my pain quite effectively with a welll absorbed curcumin product called curamed(750mg )...one or two caps/per day.... as for a treating your osteoporosis I'm not a big believer in the bisphosphonates once you're past the osteopenic range (osteoporosis is virtually irreversible compared to osteopenia) ;since the calcium deposits with a depleted bone matrix found in osteoporosis creates nothing but brittle bone that tends to shatter much too easily... some articles in the literature suggest taking vitamin K2(mk7) 180 mg per day which favors depositing the calcium onto your bone matrix and perhaps reversing the calcium deposits in your blood vessels.... this clearly might work if you're osteopenic as opposed to being osteoporotic.... the bottom line is to taper your Prednisone down to 7.5 mg as soon your symptoms and/ sedrate permits.... with severe osteoporosis you do not have the luxury of taking high doses of Prednisone for a long period of time.. do not get dependent on the NSAIDs which ultimately will put you at higher risk for stroke or cardiovascular disease.. as you can understand you are dealing with a difficult Balancing Act which requires input from a rheumatologist and/or internist who is sensitized to these types of issues.

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