Struggling and starting to panic

Rach101
Rach101 Member Posts: 165
edited 2. May 2017, 08:54 in Living with Arthritis archive
My rheumatologist wants me to reduce my steroids by 1g a month which sounds perfectly doable except every time I reduce it causes a major flare. This is the worst one yet and I'm starting to panic. I've been on sulfasalazine for 3 months so far and was hoping they'd start to kick in soon. I started a new job 2 months ago while doing well on 20mg of prednisolene a day but as I have reduced it's got harder and harder. I feel so grateful to be able to work and it's a great job but it takes all my energy up to the detriment of anything else. I reduced to 6.5mg of prednisolene a week ago and I'm in so much pain again and so stiff and this weekend I've felt so dizzy and weak. I've got a big day at work tomorrow and can't see how I'll do it, I only got through Friday by taking ibuprofen, codeine and paracetamol and that was an easy day.

So sorry to rant on, I know I'm so very lucky compared to many people but I'm so tearful and panicky. I'm doing everything I can to manage and stay positive. I've joined slimming world and am finally losing some weight, ive been doing yoga and meditation and making sure I get enough sleep, I've given up running and cycling etc but it feels like it doesn't matter what I do I am still not getting any better :cry:

thanks for being there xx

Comments

  • palo
    palo Member Posts: 240
    edited 30. Nov -1, 00:00
    I have spent a lot of the past 18 years trying to come off steriods, and one thing I have learnt is never to try to do reductions at the same time as losing weight. Why make life even harder on yourself. Set small goals and they will be more achievable.

    Every time I try to reduce I hit problems and after my last relapse my neuro told me not to try again, that was in 2014, however off my own bat I reduced last year from 8mg to current 6mg. It has to be very slow or my body rebels ( I go into relapse - not arthritis - myasthenia gravis).

    My weight has fluctuated as much as 20% overweight, currently just a couple of pounds, best to tackle weight when you have more going for you, not when you are stretched already, don't overtax your body- it will affect you mentally and pyschologically too..

    Good luck
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    It is reasonable to hope that the sulph would kick in by now. Unfortunately, many people have to try more than one med before they get the one that is right for them. This must be so difficult for you when you're trying to cope with a new job.

    Steroids can seem like little miracle pills but are not good for long term use. I think I read somewhere that it's the last few that cause all the problems because that's when the adrenal glands have to wake up and start doing their work again. The pred has been doing it for them.

    I've no answers, I'm afraid. How are your bloods? It might be that the sulph actually is controlling your disease. Disease activity and pain levels don't always coincide. Have you tried ringing your rheumatology helpline?
  • littlemimmy
    littlemimmy Member Posts: 111
    edited 30. Nov -1, 00:00
    Hi Rach,

    I really don't know what to say that would be of any help at all, but I just wanted to say how sorry I am to hear that you're struggling.

    There's no point in comparing yourself to others, because your experience is what's relevant to you. I'm always doing this and thinking that I shouldn't complain, etc., but at the end of the day it's your life and it's you that has to get through your big day at work.

    My only advice would be to fully focus on each task at work at a time and try not to look at the clock much. I find by just focusing solely on each piece of work that I'm doing, I don't get as overwhelmed.

    Hopefully the sulfasalazine will kick in soon and that'll help a lot. Use your painkillers tomorrow and plan a nice evening for yourself. I'm thinking easy dinner or takeaway and perhaps a nice bath and a film?

    Don't be so hard on yourself - you're doing really well.

    Best wishes,
    Kay
  • Rach101
    Rach101 Member Posts: 165
    edited 30. Nov -1, 00:00
    Hi Palo, thanks for sharing, I never would have dreamed it would be so difficult to get off steroids before and I guess I have been relying on them a lot to live. I kept reading everywhere that losing weight would help my joints so it seems to be the only thing I have some control over but I do understand that perhaps it's an additional strain I don't need :/

    Hi Stickywicket, my bloods have been good for quite some time apart from being constantly slightly anaemic. I don't have a rheumatologist helpline as I went private in the end as the NHS wouldn't help me. My rheumatologist said the sulfasalazine can take 4-6 months to kick in but as you say perhaps they are working already. I know that last time I tried to reduce steroids I really struggled on 10mg whereas up until recently I was managing on 7mg, not thriving necessarily but doing ok.
  • Rach101
    Rach101 Member Posts: 165
    edited 30. Nov -1, 00:00
    Hi Kay
    Thanks for your kind message, I think I do need to try and be kind to myself. Ive also been thinking about acceptance and how perhaps the time has come to try to accept my new way of life. I'm just hoping the dizziness has gone by tomorrow as I'm not sure if I'd manage to drive today. I work with people with dementia so I really need to be on top form, particularly tomorrow as I'm meeting 4 new people throughout the day who have only just been diagnosed. I need to be able to give to them rather that be under par. I'm going to have a bath now and an early night and hope for the best!
    Rach xx
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Sorry to hear that you're struggling Rach. Steroids seem like such a wonder drug, but long term are really not great with all kinds of potential side effects. By way of encouragement, many of us find that we need more than one kind of disease modifying drug (DMARD) before our disease is really well controlled, I take a combination of 3 which mostly hold my RA quite well, but even then I have bouts of pain, and as has been mentioned the pain doesn't always match the bloods.

    Hope that you manage to get good sleep tonight and get through tomorrow relatively well. Your job is so important, and you'll be helping others come to terms with their diagnosis because you understand how difficult dealing with chronic disease is.

    Keep talking to others so that they can support you, and maybe a chat with your rheumy nurse would be helpful? Sometimes just putting our fears and struggles into words is an important part of getting to grips with it emotionally.

    Deb x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Tablet steroids are lovely little things, aren't they? I took them for three years, the highest dose I had was twenty for a short bursts, the constant was 5mgs per day. Due to being on them I had to take another drug, alendronic acid, to protect my bones as steroids thin all tissue, not just the badly behaved ones. That was a total faff, once a week on a totally empty stomach and no lying down for half an hour? Enough already. :roll:

    After a stern lecture from the rheumatology nurse I trusted the most, I decided to stop taking the only med that made a positive difference I could feel because of the potential damage it was doing to the rest of me. A dexa scan revealed that my left hip bone was thinning (so would all the others be) and I didn't fancy acquiring osteoporosis on top of the arthritis, my thinking being I already had enough to be dealing with. I began in January 2011, reducing 1/2mg every three or four weeks and finally finished late November early December. I was able to stop the alendronic acid and another dexa in 2014 showed that my bone density had increased by nearly 4% and was therefore back in safer regions.

    The knowledge that we are living with a debilitating condition that will progress is not easy to accept or understand but everyone on here is doing just that, from those who are newly diagnosed to veterans like me, we're all in the same metaphorical boat - it's a leaky old craft. I battled on with work for many years but I was fortunate in that I was self-employed. I am also fortunate in that I have never known good health so it's far easier for me to accept and get on with than it must be for someone who has not had any preparation for such a life-changing event. The healthy regard illness as a nuisance (which it is) but for them it is a temporary nuisance, even if it lasts for a few weeks. What we have ain't temporary, far from it. DD
  • palo
    palo Member Posts: 240
    edited 30. Nov -1, 00:00
    Hi Rach,

    Trying to juggle everything is hard for a normal people, let alone someone dealing with what you have on your plate. I think you should speak to your rheumatologist to slow down your steriods reduction. I was on 40-50 MG daily for approx 4 years until my immune suppressants worked,, we know steriods are bad but the alternative was being in hospital even more than I was, stopped counting after my 13th emergency admission in just first 2 years of being diagnosed with MG.

    Panic is a rational and normal response in the current circumstances. My whole world fell apart, but I picked myself up, literally and figuratively speaking, and built a new life.

    You will cope, and you will survive - sometimes that is all we can do. Do not judge yourself by what you were and what you could do, but move forward knowing you will cope and you will be surported.
  • Rach101
    Rach101 Member Posts: 165
    edited 30. Nov -1, 00:00
    Hi all, thanks so much for your replies it really helped me feel calmer. I have had to take 2 days off work, my husband is ill too so I think maybe I've got a virus alongside the problems from reducing the steroids. I am due back in work on Thursday and will see how I am then, I'm due to reduce the steroids to 6mg on Saturday so will try that but if I have another flare then I will talk to my rheumatologist again. Thanks again xx
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    A good plan, Rach. I hope today goes OK at work. It can be so difficult, even for us old hands, working out what is caused by disease, what by meds and what by simply life which others experience too.
  • rosegoddess
    rosegoddess Member Posts: 6
    edited 30. Nov -1, 00:00
    sorry that you are having such a struggle - im new on the forum but been on lots of discussion groups for years.
    ive been on prednisolone for over 5 years. i started on 15 then down to 12.5 then 10 and all with no problem.
    9.5 keeps me quite mobile but cutting down that other 0.5 causes all sorts of nasty issues.
    its a lot to do with how your own personal adrenal glands heal and start producing their own chemicals again. apparently we all have natural levels which are quite different. most people are around 7.5 im told?

    so when i have a plan to reduce, to try to get myself stable on the 9mg dose, it works best by alternating the days - 9.5 / 9 then also increase the amount of water i drink and keeping my diet really fresh raw healthy as i can. i get myself on 9 and it works for around a week and then the terrible symptoms come back and the drs tell me oh bump it up to 15 for a week and then reduce again.

    have given up doing it up to 15 and just do 12.5 for a week and down to 10 and then the process starts again.

    im convinced that the reduction / healing is the most important part and if you are even slightly unwell then your body makes demands that are above the level your healed gland and the tablet can produce. is this making any sense? so when a slight extra pain or runny nose is on the go - maybe thats the time to increase slightly just for a day or two then go back to the level you were aiming for. i spoke to consultant about this and she agreed that it might work.

    what she did say was that you dont always notice the subtle changes that mean your body needs more steroids - IF you can work this out and supplement your body's own chemist, then the reduction maybe will work better. let me know how you get on as im on the same little mission.
  • Rach101
    Rach101 Member Posts: 165
    edited 30. Nov -1, 00:00
    Hi rosegoddess, thanks for your reply, it makes a lot of sense and I will give that a go! I'll let you know how I get on xx
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Please check this out with your own GP / rheumatologist first, Rach. Steroids need a great deal of respect. It sounds as if rosegoddess is an old hand with both RA and meds and has liaised with her doc before doing this. Yours might be happy for you to follow suit but pred has to be treated carefully.

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