Hold on a hootin' tootin' minute.....! 0Mg Pred?!?

Dear PMR friends,

I'm not one to brag but - oh ok then, seeing as you asked so nicely....

I AM OFF THE PREDNISOLONE!!! Yup - zero city here we are!!

Whoop-whahooo!!!

Ok ok it's only been one week but fingers, toes, bum-cheeks and eyes crossed it's all fine so far!

So why the post I hear you asking again? - so kind of you - well, I have no symptoms of PMR (maybe a little of our dear friend Monsieur Fatigue) but no pain - that's right no pain!!!! Haaaaahahahahaha!!!!!

However (cue the violins) I have come down with an evil rotten summer cold. A Hideous sore throat that has morphed into a wicked cough with a voice like Les Dawson and a tight chest and now onto sore throat part 2.

So, good people out there, is this in any way due to the removal of steroids from my daily diet or is it just sheer bloody annoying coincidence?

Anyone else had this happen to them and is it (lack of) steroids related?

I thank you.

Blessings xx

43 Replies

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  • Congratulations

  • Thanks!

  • Well done you! Whatever you are on now I'll have a double thanks!

    If you are in the U.K. MrsMac I think the weather is the culprit. Humid muggy weather then properly cold wet weather, it doesn't suit anyone. Coughs and colds abound. Don't let it take the edge off your celebration. Take time though to build up your health and strength apparently it can take up to a year to be truly normal. πŸ†

  • Thank you Sheffieldjane. Yes I'm in Cambridgeshire and yes a muggy summer here I guess hasn't helped. Also I have been told before about the "up to a year" for the steroids to be out of your system and to see if symptoms return. I am an eternal optimist so I'm trying to keep myself calm!! xx

  • Congratulations!

    I am no expert, but I doubt your cold is from the lack of Pred in your system. If Pred compromises immunity, then I imagine your resistance would be getting better now.

    Maybe your pain threshold might be lowered. But I can't think it could be much lower than it was at your previous dosage.

  • Thank you x

  • Congratulations on reaching zero

  • Thank you x

  • Hurray!!!!!!

  • πŸ˜€πŸ˜€πŸ˜€

  • Probably just a coinkidink! I also have a cold for the first time in 3 years! Was supposed to taper to 6, but decided to wait! Tripled my zinc and feel like the cold will be short! CONGRATULATIONS! πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰

  • Thank you! x

  • Hi,

    Sheer bloody annoying coincidence! Otherwise known as Sod's Law.

    Well done - another member of the club you DO want to be in.

    You may notice some days are still a bit iffy, but don't automatically assume every twinge is a return of PMR! It's not, but your hormones etc need time to return to normal.

    Keep a few pills in the cupboard or drawer (or saddlebag!) just in case - hopefully not to be used. One day you'll open that cupboard or drawer, look at the box, see it's out of date - and realise "I really don't need these any more".

    I found the best thing was that I wasn't dependent on those little white pills any longer to get through the day! I might need some different ones for OA but it's a different feeling altogether!

    Take care, and please keep contributing - there's always someone new you can help, and that's almost as rewarding as being off the Pred!

  • Thank you DorsetLady and I must say how much you and this forum have helped me stay sane all this time through my PMR journey. I feel extremely lucky that a) I was diagnosed so quickly by my GP and b) I got referred to a fab rheumatologist and c) my PMR journey has been a short one!

    And yes I heed your wise words in that it ain't over 'till it's over so will indeed be hanging onto a pack of those pesky little pills. My rheumy has signed me off his books but with a note that I can make an appointment to see him at any time should I feel the need.

    I'm now focussing on shifting the extra pounds that moved in over my pred time and other than this hideously annoying cold I am feeling good!!

    Thank you again!

    Blessings to you all xx

  • Good, as you say sensible Rheumy - what a pity they're not all like that! But have to say I have a very good GP who is from the same mould!

    It does make such a difference.

  • Hi,

    Congratulations to you. May I ask how long you were taking Prenisolone?

    I haven't even started yet.

  • Hi Cheshy72

    I was on pred for 14 months. Started on 30mg a day for a week, stopped the pred coz I then felt fine (natch), fell very poorly again just a couple of weeks later and got referred to a fab rheumatologist who put me straight back on 15mg a day with a reducing programme down to 12.5mg after one month, then 10mg reducing by 1mg each month. I stuck to that ruling very strictly and also basically went into hibernation (I'm so lucky I'm retired now) and just did the bear minimum for the whole year - I listened to my body and if I couldn't do the housework or shopping or even walk my dog then I didn't. Two hideous episodes of chronic fatigue also stopped me in my tracks for about six weeks at a time when I dropped from 15 to 12.5mg and again from 7 to 6mg. One other downside was I gained 26lb but since coming off the pred in August I've already lost it again (combined with a return to lovely long walks and swimming 3 times a week and a low carb diet). It is TOTALLY fantastic to be pain free, fatigue free and well enough to start living again. I AM aware pred can still impact me or even a PMR flare so I still listen to my body very closely - especially when it says "nah- don't bother with the housework" lol!

    I wish you well and a good, safe and successful journey - you will come out the other side!

    Blessings x

  • Many congratulations!! Hope your cold soon clears up!! Always good to hear the success stories! Best wishes x

  • Thank you! x

  • CONGRATULATIONS!

  • Thank you x

  • Congratulations!! Great to know that there is light at the end of the tunnel.

  • Thank you and yes looking forward to that light getting brighter & brighter! x

  • ZERO!!! :) Congratulations and get well soon!

  • Thank you x

  • Hi that's wonderful news indeed. Well done you but sorry you lumbered with a rotten cold virus. I'm down to 2mg after 7.5 years of PMR/GCA . I've been here before but this time is different ' I can feel it in my watter' as us geordies say. So I hope I am one of you in a couple of months and off the little white tablets. I'm very pleased for you. On another note yesterday I had a very successful cataract op and am not wearing specs for the first time in 53 years ( i have gone to put them on a hundred times today) . What I wanted to say is if anyone is worried about the procedure (like I was) it really is not at all unpleasant and does not hurt.

    Take care all of you out there with this rotten thing and keep posting it's so encouraging to hear that there is life as we used to know it at the end of the tunnel

    Best wishes

    Christine

  • Thank you x

    And yes keep the faith and one day your zero will come too! A hard hard slog for you for such a long time bless you. But hey you're one brave lady to let anyone near your eyes with a needle <boak> Not sure I could do it! Well done! xx

  • Hi mrsmac03. I had bad dose a couple of weeks ago, bad throat to begin with and then bad head cold, and my chest and cough, and I'm still on pred, but fair play to you for getting off steroids

    Are you 100% pain free πŸ˜€πŸ˜€πŸ˜€ well done

  • Hi Elizcarroll, Thank you and I hope you're all better from this bug whatever the heck it is!! Nasty summer cold! And yes I am pain free!!!! It seems strange as I well remember the ridiculous pain the PMR gave me and what a relief when the preds kicked in and I'm a little bit nervous now I'm off them if the pain will come back. This cold has taken a bit of a shine off the joy of getting off preds and being pain free but hopefully it will disappear soon then I can tentatively celebrate!!! I'm not sure if there is any risk of me relapsing but I really really hope not!! Best wishes to you xx

  • Hi MrsMac03 I had PMR to begin with and then went on to get.GCA. although rheumatologist feels I probably had GCA all along, like I started off with neck pain, flu like symptoms and then developed pain in thigh. And I was on 20mg pred and fine for 2 weeks untill i was reducing and all he'll broke loose,

    Jaw pain, headache and i was hospitalised had a positive biopsy.my dose was increased to 60mg.fine for a week. Then severe headaches and sight went in right eye, but I was so lucky it returned, but it was so frightening, that was Jan 2015. I'm down to 3.5 with some pain but rheumatologist did increase my dose to 20mg a couple of weeks ago,cause my blood levels were up, but just increased to 5mg,,but I have been taken 2 oz root ginger and orange,for over 2 years, i feel it keeps my blood levels down, my CRP and ESR always did reflect on pain I was having. But I probably should pay more attention to symptoms. And maybe increase my dose.

    Enough of me going on.

    How long did you have PMR?

    Any tips you could share, hearing from people like you gives you a lift congratulations again X x

  • Hi Elizcarroll,

    Oh my gosh you've had it tough. I was fortunate to only have PMR and not GCA so I can't even imagine how difficult and frightening it must be for you.

    I was diagnosed with PMR last July (2016) after breaking my wrist which the doc said may have been a catalyst for the PMR kicking off (also had very stressful life for past 9 years as my husband fell very ill and still is). Having found this forum very early on in my illness I was shocked to read how long some sufferers have had this condition for. That was scary.

    I kind of made of mental vow to myself that I would follow the doctors orders to the letter and I'd "go with it" for 1 year. I was very lucky in that I had recently given up work so I could focus on my health. Other than the prednisolone and adcal I didn't take any other meds. for the PMR. I basically "hibernated" for a year then as I started to feel better I started to take more gentle exercise (walking my dog and swimming - I'm now walking around 25 -30km a week and swim 3 times a week clocking up about 2km over those sessions.) but to be honest I listen to my body and if I can't make a long walk then I just do a short one or maybe skip one of the swimming sessions. I'm also hoping to get back to yoga later this year (but seeing as it was in a yoga class I broke my wrist last year I'm a little bit afraid!!!)

    So you asked for tips? I'm not sure these are tips but it seems to have worked for me. I'm pretty much convinced a "positive mental attitude" and mentally managing this illness has helped me massively.

    I do hope you will soon start to get some positive relief.

    With best wishes to you xx

  • Probably you are noticing the inflammation effects more with no pred - the veil has been lifted...

    Good news - fingers crossed it all keeps going on just as well!

  • Thanks MrsMac03. I've come down from 80mg and side effects were horrendous. So trying hard not to increase, did you have any setbacks where you would have had to increase dose? And your diet did you keep to a good diet. And did you avoid carbs? I do think sugar is poison for our bodit's, I did stay off carbs, desserts, wine. For whire, but like a glass of red wine and the odd dessert.

    Strange that you talked about stress. I was going through a stress full time.and then my daughter was diagnosed with breast cancer 34 with 2 young kids.so feel I've lot more pain because of this. But she doing OK. Hope your husband is doing OK. And you get over thathe bad cold.take care X

  • Hi Elizcarroll. No during the 13 months I was taking the prednisolone I didn't have any flare ups or setbacks. I did a monthly 1mg step down from July 2016. I did rather "cocoon" myself - closed the curtains, pulled up the drawbridge .. and didn't do a damn thing even remotely exciting or energetic the whole time.

    Oh yes - I did put on weight! About 20lbs at the worst but I've lost that already and yes that's been hard but I'm now following a low carb diet and have started exercising again (swimming and waking) which I just love.

    I am sorry to hear your daughter has had a terrible struggle through her illness and hope she is getting the right treatment and is doing well. I think none of us ever realise the true damage stress can inflict on our bodies and our minds and when we spend so much love and effort on caring for loved ones our own health nearly always suffers in some awful way too but we just push on and on. PMR is a wake up call that something has to change!

    Sadly my husbands condition is not good (he suffered a massive stroke and is paralysed and has terrible brain damage from which there is no recovery for him) He is now in a lovely care home where he gets much better care than I could ever give him.

    Take care and I send you all best wishes xx

  • So sorry MrsMac03 about your husband, life is not fair at times,

    My daughter had a double mastectomy. She doesn't smoke or drink, breastfeed her 2 wee ones 3 and 4. And I suppose she felt cheated. Angry. And given she had gone private with a lump and they said it was fine. And she went public and they said it fine. She had ultrasound, told her it was fine. She was too young then to have mammogram. She was 34 then, 6 months later she said to me I just want the lump gone. So she went back to private consultant and she said she wanted it removed and at that point he did a mammogram. And he said it was clear, and he told her she was over worrying and told her to go to health shop and get oil to put on it, and he wasn't very nice.

    6 months later she was still unhappy about it. So she went back to see guy in public and he did a mammogram and neXT she was called back for biopsy. And she had 7cm of cancer and they said it was 2 months from becoming bad.it was devastating. I felt so helpless. I just wish it had of been me. Her only option was mastectomy. She had a double mastectomy. One consultant was very unset about. And said they miss one or two and year.but he was glad she was persistent. A report is due out soon.

    It was so hard for her, but her only way of dealing with it was to throw herself back into work and get on with life what else can we do? and lives for the kids.in mind the children it's the least I can do there good. Sorry for my long story. And all we can do is be positive and take joy from little things. You are dealing with a lot. But your so positive and it gets us through the bad times. THanks for replying and take care Xx

  • So sorry for your daughters mastectomy! Good for her for persisting. Wonderful that she has youπŸ’•πŸ˜Š

  • Thanks take care X

  • Oh well done!

  • Thank you! 2 weeks in and still zero preds!! (Still got the bloomin' laryngitis though!!!) x

  • πŸ˜€πŸ˜€πŸ˜€πŸ˜€

  • Yay!!!!😊

  • Yay indeed!!!!! πŸ˜€πŸ˜€

  • Congrats Mrsmac03! :-)

    Nice to hear stories about reaching the elusive Club Zero here - thanks for the inspiring message.

    It's interesting you should mention catching a Summer cold. I picked up something similar a couple of weeks ago - sore throat, incessant tickly cough, streaming nose etc. which lasted a couple of weeks and set me back in terms of fatigue especially after quite a miraculous breakthrough pain / energy-wise recently. Miserable or what?! :-(

    I've no doubt that bugs / viruses / infections etc. put an already beleaguered immune system under even more strain, even (or especially?) when at low / zero Preds. It's probably a coincidence that we catch these things - but maybe a reminder that we're not out of the woods yet?

    Either way, please keep us posted

    MB :-)

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