No steroids for me

I was diagnosed with PMR 9 months ago. Started on prednisone. Total relief within two days. Hurray! That is until the side effects kicked in. Weight gain, anxiety, mood swings,insomnia. Did I forget to mention I am being treated with fosamax for osteopenia. Weaned myself off of the demon drug. Been off of them for 2 months now. Yes the pain and stiffness is back in my shoulders and thighs. No sense in going back to the rheumatologist he will just put me back on them. At this point I would rather live with the stiffness than go back on that poison. By the way I am 65 years old. Thanks for letting me vent.

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  • I am sorry that you had such a negative experience with Prednisalone. Yes all those side effects sound familiar but in me they kind of took turns or I found solutions.

    My symptoms were so disabling that I didn't feel like I had a choice. I was also afraid of unchecked inflammation and the damage it could do, not least morphing into GCA and therefore threatening my eyesight ( a thought that I find really frightening).

    I wonder if Fosamax has made everything worse for you in combination with Pred. Maybe?

    I fully respect your choice to reject the steroids and I like your energy in taking control. I wish you well. You're not the first and won't be the last to vent here. Let us know how it goes for you and the helping strategies you use.

  • Actually it is suggested fosamax be given in conjunction with the steroids if needed. I'm sorry your symptoms are so disabling mine were like that last summer. Took me 3 months before I would see a doc. That's a nurse for you. We are always the worse patients. My fear is it may get to the point where I can't stand up from a low position without an assist. That was bad. I'm just hanging in for now doing stretches and keep walking. That seems to help. It's the getting up that's the hard part. Thanks.😊

  • "If needed" - I am osteopeneic, was at the start of pred, the dexascan was done about 8 weeks in. I took the grand total of 4 tablets. My bone density has barely changed over 7 years of pred. Calcium and vit D have done an excellent job with no side effects to mention. And it is natural bone.

  • Hi katkawon,

    That's your choice of course, and no one would deny you that, but I think there are many on here that would suggest you may be leading yourself down a very slippery slope.

    I'm sure you are aware that in some people, no one knows how many, if the PMR is left untreated as you intend to do, it may possibly lead to GCA, which is a very different animal altogether!

    I started with stiff shoulders like you, but unfortunately was not diagnosed with PMR, but with a frozen shoulder. I was treated for this for a period of 18 months, constantly being told it would soon improve. It didn't, in fact I began to get headaches and eventually after I'd irretrievably lost the sight in my right eye was diagnosed in my local A&E department. For the first 2 weeks, on very high doses of Pred, nobody could tell me if I would retain the sight in my other eye - fortunately I did.

    You may think I was unlucky and a one -off, and you are partially right - I was unlucky, but by no means a one-off! There are a few of us on here who are blind in one eye, and there are family members of people who have lost their sight completely.

    There are also many PMR and GCA patients, who despite the side effects recognise that they have got their lives back on track having been virtually bed-bound prior to diagnosis.

    Ask them, if they'd refuse steroids!

  • Thanks for your input. My rheumatologist wanted me to wean off of them. I just did it a little faster. He likewise was concerned about my osteopenia . He gave me a script for as needed meloxicam. Which I take sporadically. I don't see any point in going back to him. There's not really anything to be done. I do some stretching and keep mobile as this makes me feel better. 😊

  • I appreciate the osteopenia concern, and I'm fully aware that I didn't have any choice - it was Pred or blindness, so I had to put up with the side effects. I must admit after 18 months of debilitating fatigue and pain plus fear of losing all sight I must admit I would have taken almost anything to get relief - no matter how horrible!

    Just be aware of any unusual head aches or sight irregularities that could indicate GCA.

  • Thankyou. I will be aware

  • I think you are possibly 'brave' but I'd be concerned if all that inflammation was going on in my body unchecked - as DL and others have reminded us often on this forum this can lead to long term vascular damage with other possible nasty consequences.

    Also weight gain CAN be controlled very well on a very low carb diet (also very well discussed here) and this has worked for me so far - in fact I have lost weight and have a normal BMI after many years prior to pred in the 'overweight' category. I too felt some mood swings mainly at the higher doses but as time has gone on these have abated somewhat and tapering down no doubt will help too. As far as 'anxiety' goes - for me the pain and restrictive stiffness caused the most of that - not to mention inertia and low mood often as well - with pred I now have none of that !!

    Your choice is of course your own - but perhaps also worth reconsidering in the light of all the real benefits which pred can offer. I sometimes think its 'demonisation' doesn't fully reflect the quality of life which it has restored to many of us - even if it can never be regarded as a 'cure' in the long run.

    All good wishes for your journey

    Rimmy

  • Vent all you like - and you are very welcome to do so but I also managed to live with PMR for 5 years without pred. Not out of choice mind. I managed a reasonable lifestyle I thought. I went to the gym daily - to do an aquafit class which was the only way I kept mobile and was enough to let me do heavily adapted Pilates and Iyengha yoga classes once a week each. I dreaded not being able to park close to the door as I had literally fallen out of bed and struggled into a swimsuit and track suit. I couldn't get dressed properly. I showered at the pool and got down the lovely shallow steps into the warm pool. If the heating wasn't working - I retreated to the steam room because I would have seized up in the cool water. Then I staggered up the steps to get out. Otherwise they'd have had to get the hoist out. I couldn't use the ladder.

    I could just get out of a normal chair - I have Ikea armchairs that I COULDN'T get out of. If I got down on the floor (that's easy, you fall) I had to crawl to the sofa to get up and it took a long time. I went up stairs on hands and knees and stomped down like a toddler, one step at a time. I was in constant pain, not severe, but constant. At 51 I got out of a car like a 90 year old and took 5 minutes to be able to walk. I fell asleep on the sofa in the middle of the afternoon. I was in bed at 8.30pm and struggled to wake up at 8.30am.

    Then I had a flare and had to stop driving for some months for another, unrelated and incorrect diagnosis. I was stuck indoors - I couldn't even walk to the end of the road to the bus stop - I couldn't have got on to the bus anyway. I could barely make a cup of tea - I couldn't lift the kettle. Any task I needed to do had to be broken down into 5 min bites - with 10 min rests. I had the choice - work at the computer upstairs where I could get to the loo or be downstairs where I had food. If I took food upstairs I had to set it on the highest step I could reach, crawl up to it, rinse and repeat. And I could barely toilet myself. I can remember sitting on the toilet in tears, wondering a) how the hell I could reach to clean myself and b) how on earth was I going to get up from the toilet. Turning over in bed was done by numbers and getting out of bed if my husband had already gone to work was a work of art.

    Six hours after taking my first 15mg of pred I got up from the computer, walked downstairs and made a cup of tea which I took back upstairs. And then I stopped and realised what I had done! It was a minor miracle. I could move normally. That was when I realised just how restricted my life had become in the previous 6 months, it hadn't been much better before. If I couldn't drive there and park outside - I couldn't go. I was dependent on my car and when I couldn't drive - on others.

    I have had my share of side effects - but they weren't all due to pred. I gained weight due to the unmanaged PMR, comfort eating and being unable to exercise properly. I was bad tempered and aggressive. I woke at frequent intervals through the night because of pain - I couldn't turn over while asleep. I was depressed and spent hours sitting crying because I could do nothing else. I started pred and the weight redistributed itself to the usual places. But I could move. I was switched to a different steroid - I gained a lot more weight and became totally Cushingoid, hair went mad and frizzy, stopped growing, grew a wonderful black beard. I needed a higher dose to get any realistic relief. On yet another steroid (immediate miracle again) and a strict low carb diet I lost 36lbs - the pred weight and more. My hair is back to normal and so is my skin. I lead a normal life.

    If you get to the state I was in after 5 years you too may decide pred is worth it. I never had the choice to start with. But none of the side effects I had ever made me think pred wasn't worth it - because I knew what I would go back to. And if you develop GCA then you have a very stark choice: pred and its side effects or risk going blind. There are answers to modify most pred side effects, there is no way back from being blind due to GCA.

  • Glad for you. My mother died from a fall secondary to osteoporosis. I already have osteopenia. Do not want osteoporosis which steroids would certainly give me.Happy you are feeling better.

  • Less than half of patients on pred develop loss of bone density. it isn't a given strangely.

    Immobility is one of the greatest risk factor for osteoporosis - and PMR when it gets bad pretty much guarantees THAT!!!

    I wish you luck.

  • Katkawon, three months after starting pred I was diagnosed with osteopenia and AA was recommended. I refused and simply did as much as I could through natural means to help my bones. The only side effect was improved general health, and my t-score after one year (and still on pred) had improved from -2 to -1.6. Just saying - bone meds are probably not necessary for someone with osteopenia, steroids or not, provided they are willing to research and modify lifestyle to improve bone health naturally. In my case it involved taking the right supplements, adding more leafy greens to my already healthy diet, and adding new exercises, including Nordic walking and tai chi. It takes time, but is very much worth it!

  • Happy for you. 😊

  • I only tell people not to brag but to encourage them if they want an alternative to what are, after all, rather dangerous drugs - I'd rather take my low dose of prednisone than any amount of bisphosphonate!

  • I have a degree of osteoporosis and have taken ADCal supplements for the six years I've been on steroids. I have also had two annual infusions of zolendronic acid and will have the final one in December. I am very careful about avoiding falls. I could not have borne the pain and stiffness of PMR which prednisolone put a quick end to. It's taken me a long time to taper off and I have now lost most of the weight I gained - thanks to a low carb diet.

  • Wow PMRpro, your description of how PMR affected you after 5 years is exactly how it affected me after ten days! Brilliant description! I'm so thankful for the pred. Dexa scan results today show good T scores, so no Alendronic Acid for me either... Glad for all the advice on that which I'd gathered from this forum!

  • Janet - I was thinking 'exactly the same for me' after only a couple of weeks....! How some members on this forum endured all the symptoms that PMRPro describes for that length of time is beyond my comprehension.

  • Rokerman... just wondering, are you from Roker in Sunderland?

  • If only.........!

    Have had the misfortune to support SAFC since 1957 and live in deepest Surrey! Growing up was not easy.......

  • Ha'way the lads! I was born in Sunderland and lived there till I was 16. I visit regularly as there's still lots of my family up there. One of my sisters lived near the old football stadium so we often heard the 'Roker Roar'. The Stadium of Light is good, but not quite the same :-) Still have happy memories of their 1973 FA Cup victory to cling to!

  • Janet - in the 50s & 60s, SAFC didn't travel well - it was 15(fifteen) years before I actually saw them win..! It was the FA Cup replay at Reading in........ 1973. What a year!

  • I had somewhat over a year undiagnosed, and I can't imagine being able to endure more than that; five years is beyond comprehension.

  • :( In tears now. You have just described my life at the moment (the crawling upstairs etc etc) and I'm currently on 17mg Prednisolone. I thought I was doing OKish because I'm not screaming in pain any longer! As you put it - constant pain but not constantly severe pain. Luckily I don't work, so I can spend the day in PJs on the sofa. Add in the multifocal AVN (avascular necrosis) pain and - I'm a mess. I am slowly tapering down on the Pred with the help of Methotrexate (because I really really need surgery on the AVN joints) but if I didn't have AVN I think I should probably be on a much higher dose of Prednisolone to be anything like normal. I guess I'll find out next week because I've decided to increase the Prednisolone for a few days to get to and through a wedding. What an unholy mess. :(

  • katkawon, I cannot imagine trying to survive without pred. I could hardly get out if bed when first diagnosed with PMR

  • I'm sorry you are in so much pain. My pain is minimal for now. If it does become severe again I will have no choice but to go back on. Please take care.

  • Thanks pmrpro you have put it into words how bad it was for me , I don't want the steroids but have no other option .

  • katkawon, I cannot imagine what I would be like if I stopped pred, I could hardly get out of bed when diagnosed and could not get dressed. There is no way I could go back to that pain, where I could not even eat without extreme pain in moving my arms. The pred was like a miracle. Also I have a very positive Dexascan, so getting osteoporosis is not necessarily a side effect of pred for everyone.

  • I suspect the truth is - if you insist you will "do it without pred" you just ain't got it bad enough!

    In that first 5 years for me it was horrible but I wasn't "in extremis". In the 6 months after that first really awful flare if I had known how to do it I would probably have topped myself had I thought it would go on much longer. As it was, I worked out what it probably was and started the search for a doctor who believed me. I found one before it really got too much.

  • The insomnia was the final straw. I could not sleep while on them. I am sore again as I knew I would be. I'm hoping it will not get as bad as it was last summer.

  • I echo everything PMRpro and others have said - up the stairs on all fours and down like a toddler (I can still be like that quite often). I couldn't think what was wrong - I slept so much,everything hurt so much - then one morning I woke completely immobile - with absolutely no chance of even turning over. The next day it was my neck - very scary. Both my parents had PMR - my father broke his femur badly but my mother had strong bones with nothing wrong with them. Neither were given calcium or anything else for their bones. PredHead for me!

  • Perhaps you didn't reach the point we're you were immobile. I could not have continued as I was without Pred.

  • Ditto to what everyone else has said. What a journey you have had PMRpro. I feel quite choked up. I wouldn't be alive if not for Pred. Yes, I also moaned and groaned about all the side effects, but have lost the 3 stone I put on, feel not too bad now. I don't know why anyone would prefer the pain, and other, symptoms, i.o. taking Pred.

  • I wish you well and hope you manage without prefer.I am 3 years on it now as much as i hate side effects i would be bedridden.I could do nothing for myself it was dreadful.x

  • I wish I had your stamina, and wished we lived close to each other for support. I am 60 with the same exact situation! Prednisone is the only thing that makes me feel normal and I take fosamax for the osteoporosis. I was off Prednisone for 3 months but just couldn't stand it anymore so went back on 5mg. I don't think it is helping as much as I need to feel great. I hate the weight gain. I just don't feel well or have the determination to do anything about it anymore

  • Believe me if the pain gets bad enough I will probably go back on . Right now I rate my pain a 3 or 4 on a scale of 10. I can live with that. I hope you feel better soon.

  • Bear in mind that there are a lot of patients who also live with a 3 or 4 on a pain scale of 10 - and that is due to being on pred! By no means everyone is pain-free - I'm probably one of the few who would say I was pretty well pain-free. Yes - pred makes that much difference for me. But I am no compromise about it: enough pred to BE pretty well pain-free. And I have learned my body and my disease. I know what ISN'T PMR - and look for help.

  • You've got it spot on again... I'm constantly at pain level 3, but can cope with that as I have full mobility. Just shows how we all differ, so its a case of horses for courses. Just so glad I'm no longer in the state where all I could do was move my eyes!

  • I can identify with most of PMR's account of life pre diagnosis and pretreatment. I feel l am less likely to fall and possibly fracture on Prednisilone as since treatment as my mobility and balance are so much better. I take Risedronate once a week, I have faith in the Rheumatologist who recommended it, and have no side effects.

  • I wish you well with your decision to be off the steroids. My wife too was diagnosed 11 months ago with PMR and the prednisone was great but when she tapered she got all the symptoms back like you describe. Unlike you, it was the rheumatologist that doesn't want her on prednisone, but her GP felt it was best for the quality of her life NOW that she be on 10mg. Right now her worst side effects are the weight gain and her blood sugar which are really hiking up. Her general fatigue does not allow her to exercise a whole lot. And later we are sure that her bone density will be a problem. She fears drastically getting those symptoms back, and also fears GCA.

    Joe

  • My prayers with your wife. I should clarify that if the severe pain comes back I may have no choice. My rheumatologist does not want me on them. My mom had severe osteoporosis and died as a result of a fall . I am small boned like her. Today my pain is low . We shall see

  • Do not know if my experience will help but I think I had PMR undiagnosed about ten years prior to my onset of GCA . I somehow worked through it with exercise and physical therapy. When Temporal Arteritis hit I nearly lost my sight. SO ..please be careful. I can understand how you feel. BUT...prednisone is a miracle drug Although it is given a really bad rap. I can not see my insides but it has sustained me for five years and it has retained my eyesight ....and believe me...you do not want to go down that road.

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