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BS: Steroid side effects
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Subject: BS: Steroid side effects From: Nigel Paterson Date: 12 Sep 11 - 05:05 AM I was diagnosed with Polymyalgia Rheumatica just over two years ago. Standard treatment, long-term steroids (Prednisolone). Initially, I seemed to tolerate the medication quite well, although the weight gain & bloating was unwelcome. One of the many other side effects of Prednisolone is depression from which I have been suffering for the last three months...the really crushing kind where you lose interest in everything & feel like a zombie wading through treacle. I see my GP (family doctor) regularly & a Rheumatoligist twice a year if I'm lucky. Are there any mudcatters out there with personal experiences of 'Life after Steroids'? Some 'light at the end of the tunnel' type stories could be very encouraging. I feel so despondent & not that well supported by the medical profession. Nigel. |
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Subject: RE: BS: Steroid side effects From: Lizzie Cornish 1 Date: 12 Sep 11 - 05:37 AM Oh, Nigel..poor you. I really hope you start to feel better soon. I was on the same steroids as you when I was 19. They prescribed them for Choroiditis brought on by Toxicara Canis...(infection from dog poo, basically) I was on a high does for over a year, gradually whittling down to nothing, very, very slowly but surely. Side-effects? Well, I was one of the few people they'd ever known who actually lost weight on them, went down to 8st, felt wonderful! However, about a year after I'd come off them my circulatin went crazy and I was soooooo cold. I'd go to bed fully dressed with eiderdowns, hot water bottles and extra blankets, but was still covered in chilblains on my hands and feet, but this was eventually resolved with medication. I've been absolutely fine ever since, and I'm 56 now. I had to carry a card around with me 24/7 stating I was taking steroids and my doctors kept a careful eye on me. Ask your doctor if you can be reffered to someone about the depression, as you shouldn't have to put up with that, and heck, they should be monitoring you, supporting and helping you when you're taking steroids.... I know it's hard when you're feeling so down, but I think you're going to have to fight hard on this one, because you should be surrounded by folks who are taking an interest in your health, not just left to get on with this on your own. Is there anyone you can take into the doctor's appointment with you, to support you and help you get that extra attention you so need at the moment? I really hope you get some help very soon. Make an appointment with your GP TODAY if you can. Don't leave it for weeks down the road... Love and hugs Lizzie x |
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Subject: RE: BS: Steroid side effects From: Lizzie Cornish 1 Date: 12 Sep 11 - 05:48 AM I'm sure you know most of this already, but it talks of *other* drugs which may be able to help, rather than steroids. Arthritis Research UK Most of all though, you should, without doubt, be being monitored and looked after really well whilst on Steroids, Nigel....and if you're not then you have every right to be upset. Maybe they could reduce the dose for you? That seems to help some people, but obviously, this needs to be done very gradually... |
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Subject: RE: BS: Steroid side effects From: GUEST,999 Date: 12 Sep 11 - 07:34 AM Nigel, I messaged you. |
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Subject: RE: BS: Steroid side effects From: olddude Date: 12 Sep 11 - 10:54 AM I have Chrons, take them all the time. PM me when you have a chance |
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Subject: RE: BS: Steroid side effects From: GUEST,.g Date: 12 Sep 11 - 12:27 PM Good News - Your Depression is probably Not Caused by the medication you indicated.
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Subject: RE: BS: Steroid side effects From: Nigel Paterson Date: 13 Sep 11 - 12:37 PM Sincere thanks to all of you who have written. Your kind words & good advice have given me the boost I needed when I see the Rheumatologist next Tuesday. Being assertive with doctors is not one of my strong suits! Special thanks for the PMs...informative, insightful & encouraging. I will update the thread as & when there is news. Mudcatters to the rescue once again! Nigel. |
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Subject: RE: BS: Steroid side effects From: Nigel Paterson Date: 16 Sep 11 - 05:40 AM A message for Lizzie...I'm seeing my GP this coming Monday & the Rheumatologist on Wednesday. The immediate dilemma I have to resolve is that the medication & PMR both present the same side effects/symptoms, making it virtually impossible to differentiate one from the other. In the short term, with the specialists knowledge & agreement, I plan to eventually stop all medication so that I can 'listen' to my body. At the moment I don't know whether it's the medication or the condition (or both!) that's making me feel so miserable. Thank you for your kind words, care & concern, Nigel. |
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Subject: RE: BS: Steroid side effects From: Sandra in Sydney Date: 16 Sep 11 - 06:00 AM good luck with it all |
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Subject: RE: BS: Steroid side effects From: I don't know Date: 16 Sep 11 - 06:57 AM Hope all goes well. Definatley seek docs advice re help for the deprestion & if possible get an alternative for the steroids. cathy |
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Subject: RE: BS: Steroid side effects From: LilyFestre Date: 16 Sep 11 - 08:26 AM I had to take steroids the night before a chemo treatment, the morning of and then when I was in the actual chemo chair, totaling 15 steroids in about 8 hours time. For me, it sent my blood glucose readings through the roof (think 500-600) and I gained weight. I hope you get to feeling ok. Michelle |
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Subject: RE: BS: Steroid side effects From: GUEST,roderick warner Date: 16 Sep 11 - 10:08 AM In 1997 I had to take the same steroid as part of a chemotherapy course. I survived the illness as early treatment worked but went somewhat wappy for quite a while. Didn't really piece it together until a few years later, but my main problem was an increased hair-trigger temper which got me into various scrapes and incredibly emotional mood swings. Luckily, I had good friends! Don't remember being depressed - but with hindsight the above-noted drug side effects took some time to work their way through. I think if you are aware that there may be a problem, that could be half the battle. I didn't at the time, being more pre-occupied with fighting a virulent illness and not seeing how barmy I was going! Hopefully you will pull through ok - the trick with all illness as you know is to keep as positive as possible - and take no crap of doctors/nurses etc. Refusing to be a victim is a main part of the healing process. Never be put on the back foot by medical professionals! Good luck. |
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Subject: RE: BS: Steroid side effects From: GUEST,roderick warner Date: 16 Sep 11 - 10:10 AM Sorry, Nigel - should have added to the above that I eventually came through more or less ok - as you will, I am sure. |
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Subject: RE: BS: Steroid side effects From: Lizzie Cornish 1 Date: 16 Sep 11 - 02:18 PM Listening to your body is a wonderful idea, Nigel. :0) Bodies and Brains are clever ol' things and they often get you to do what they need you to do to make things easier, in ways you don't even realise at the time. Try writing down a short list of the most important facts you want to ask the doctors, as it's so easy to get all tongue-tied and awkward when confronted by those who perhaps are not as sympathetic as they should be. Remember though that you are their 'customer' as well as their patient and you most definitely have every right to expect extra care being taken of you whilst on steroids. By the way, it was only last year that the media disclosed the fact that many GP surgeries receive bonuses for not sending patients to Specialists on their first time of asking, so if you feel you need more help than you are currently getting, insist upon seeing those doctors you feel might be able to help you. Oh, and just another thought, have they checked you out for thyroid problems? You can get severe muscle pain, tiredness and depression from that at times... I wish you well next week. Let us know how you get on..and remember we're all thinking of you and wishing you better really fast, so chin up and smile on, even if only for a short time, because you'll get there, Nigel, and all this will just be a distant memory soon enough. Kindest wishes Lizzie xxx |
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Subject: RE: BS: Steroid side effects From: Lizzie Cornish 1 Date: 24 Sep 11 - 04:58 AM You OK, Nigel? |
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Subject: RE: BS: Steroid side effects From: Nigel Paterson Date: 26 Sep 11 - 11:53 AM Thanks for checking Lizzie...not much has changed since I last wrote, except that the docs. treating me agree that all meds must be stopped. The downside to that is that it will take ten months! So it's going to be well into next year before I'm likely to notice any improvement. Thanks also to Roderick for your kind words of concern...very grateful. Lizzie, I'm very touched by your care & concern...it really DOES help. Kindest Regards to all, Nigel. |
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Subject: RE: BS: Steroid side effects From: katlaughing Date: 26 Sep 11 - 01:17 PM Dear Nigel, Sorry I didn't see this earlier. There was a time in the 1990s when I had to take high dosages of prednisone for several months. What I found really helpful was a book written by a physician for her sister a classical cellist who also had to be on prednisone. You may read more about the book called coping with prednisone at the following link at Amazon: http://www.amazon.com/Coping-Prednisone-Other-Cortisone-Related-Medicines/dp/0312195702 I highly recommend it. If I saw that my copy I'd send it to you.there is indeed a light at the end of the steroid tunnel. It's good you take measures and your doctors have apparently listened. All the best to you, kat |
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Subject: RE: BS: Steroid side effects From: Nigel Paterson Date: 27 Sep 11 - 07:29 AM Kat, thank you so much...fascinating stuff. I'm going to my local bookshop today & order a copy of the book you recommend. I'm really quite overwhelmed by the response to this thread. Good people from all over the world offering advice, words of comfort & encouragement...sincere & heartfelt. One day, don't know where or when, I want to meet all of you & say thank you properly. What a special day that would be. With Love, Nigel. |
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Subject: RE: BS: Steroid side effects From: GUEST,999 Date: 27 Sep 11 - 07:39 AM Nigel, if you check Ebay, there are some paper editions available for a few dollars. Shipping would likely cost more than the book. (Both paper and cloth are available.) I don't know if there's a UK Ebay. The one I checked after reading Kat's post is in the US. BM |
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Subject: RE: BS: Steroid side effects From: katlaughing Date: 27 Sep 11 - 10:46 AM Nigel, You are very welcome.:-) Over the years I have seen this happen on Mudcat AND been the recipient of same, several times. It is pretty neat, isn't it? I see there are several used copies available through UK AMAZON and, if you go through the Mudcat link (click on the fish in the banjo logo up top) then Mudcat gets a cut. Best of all to you, luvyakat |
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Subject: RE: BS: Steroid side effects From: GUEST,999 Date: 27 Sep 11 - 10:49 AM Good find, Kat. I'm in the Dark Ages when it comes to Ebay, Amazon, etc. |
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Subject: RE: BS: Steroid side effects From: Nigel Paterson Date: 28 Sep 11 - 03:23 PM Kat, BM, ordered the book this morning...now the waiting begins! Love to you both, Nigel. |
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Subject: RE: BS: Steroid side effects From: Lizzie Cornish 1 Date: 28 Sep 11 - 03:34 PM Awww..Nigel, I'm soooo pleased to see everyone Wrapping You Up In Love...that's what the *real* Mudcat is about, I always feel. :0) Hey, ten months goes in no time! And don't forget, throughout that time the dose will be going down at regular intervals, so the Black Mist will soon start to turn to Golden Sunshine again, and you'll be feeling a lot better emotionally... And any time it all starts to feel overwhelming, well, you just come right in here and we'll all Tickle you with Love until you start to smile and giggle again.. :0) You take very good care of yourself and insist that everyone else does too. Love and hugs Lizzie :0) (((xxx))) |
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Subject: RE: BS: Steroid side effects From: Nigel Paterson Date: 01 Oct 11 - 05:10 AM Apologies, should have mentioned that the book referred to above is sold under a slightly different title in the UK...'Coping with Prednisolone' (or Prednisone, I'm not sure which spelling is used) I'm now into the second week of a 1.25mg meds reduction & can tentatively report that most of the appalling depression has lifted. Can't demonstrate 100% that the reduction is completely responsible for the improvement, but at the time of writing, I do feel more 'normal'...whatever that is! Love to my Mudcat friends, Nigel. |
