iffa28

Hero when you need an immediate result. Im on 30 mg doze nowadays because first time in 10 years, the lungs were attacked. However I know its a villain in the long run. But i dont see a way out. It keeps coming back. I have now accepted the reality and going with the flow.

louise-a

I have a love /hate relationship with this drug. Lou xx

AgedCrone

It's a very useful drug, but it can turn things on their head. In a way I was lucky as when I was put on a5mg per day ( for RA) it had such severe nervous system side effects I had to be taken off it.

From what I read on here & on the NRAS site I consider myself fortunate that I couldn't continue with it.

But as it is so beneficial for so many people I guess doctors will continue to prescribe it!

So I guess hero and villain.

Do hope you get settled on more suitable meds very soon.

Bebe76

I've been following your story for several months. I'm glad you finally got an answer to your problems but it is terrible what you had to go through to get there. After all this, what solutions have they offered? I have also been trying to come off steroids for the past 2 years, and when I reach 3 or 4mg I start to feel the fatigue and nausea kick in, and they don't subside. I only have been told to 'try again' and 'go slower' - not very helpful!

whisperit in reply to Bebe76

Thanks, Bebe76

Sounds familiar! Prior to the synacthen test, my rheumy said it was Fibromyalgia and so the options he offered for the fatigue were CBT (to help adjust to my 'new normal') and an Occupational Therapy intervention ("graded exercises"). I accepted both, but neither were at all helpful (nice people though!)

I only got the synacthen result this week, and the advice on the endocrinologist's letter simply says "do not go below 4mg daily, and consider going up to 5mg if your fatigue and tiredness do not improve". That's it. Since I have been profoundly fatigued for over a year now (resulting in having to take ill health retirement and becoming virtually housebound), this is not perhaps as much help as I would like!!!! The endo does not plan to see me again, and is returning my care to my rheumy....

Sorry I can't be more helpful! x

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Bebe76 in reply to whisperit

I am a little surprised that the solution is just to remain on prednisolone indefinitely...my rheumy is always telling me I just need my adrenal glands to 'wake up' and it will take some time. (I've been on various doses now for nearly 8 yrs).

It seems, though, you still don't have a satisfactory solution as on 4mg you are not well, and going up 1mg made you feel worse! Are you able to contact the endo for his opinion on this?

I hope your rheumy starts considering your opinions seriously now...it would be hard for me to trust his medical advice after he was so wrong!

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whisperit in reply to Bebe76

Exactly. Yes, I was told about this adrenal "wake up" thing too - but it appears that for me, they've decided not to bother. I am quite sure that each of us has our own version of autoimmunity. I suspect that my adrenals were probably struggling before this all happened, perhaps as a result of a serious accident I had some 2 years previously. You will be traveling a different road. So be wary, but please don't panic. x

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Bebe76 in reply to whisperit

Thanks, whisperit. Yes, I am on trial #3 now of reduction from 5mg to 4mg at the moment. I am going much, much slower this time around. Fingers crossed trial #3 goes smoothly.

Keep us posted, I hope you can begin to feel better soon.

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Treetop33

It does provide almost instant relief and is very important in emergencies, but ultimately is a villain. I wish I'd never gone on it. I can't seem to get regularly below 7.5mg and even then I know that it makes me feel awful as well. It's definitely thrown my sleep off, which affects everything else.

It's a bit mysterious to me as to how you get your adrenals to wake up. Anyone got any ideas?

cuttysark

I think many of us with CTD do have an underlying low adrenal problem which is magnified when we try to come down our present steroid levels.

I was put on hydrocortisone about eight years ago for adrenal insufficiency, or early Addisons. After a couple of years I was put on Pred for other autoimmune issues but still had to take the hydrocortisone as could not absorb the Pred properly. They gave me Pred injections but I still need to supplement with Hydrocortisone. Despite the medication I never feel normal and hate the steroids.

Before the steroids though I was also in a very bad way with autoimmune related heart problems. This has been dramatically improved by the steroids so for me they are definitly Hero AND Villain.

Lizard28

I started on 40mg of preds. Only drug that got my lungs working again, but its defo my hero and my enemy. My doc had me tapering very very slowly, over a year it took me to get off it. Every time I came off it, inflammation went somewhere else. After a shaky start on hydroxy, it now seems to be keeping my esr at around 40 which is the best it's ever been. Pred does leave its stamp on you tho, I have cataracts starting which my optician said it prob the pred that's started it, who knows tho. I also have the reminder of the bag of wrinkles under my chin from the fat sac caused with the pred. It's a constant reminder of really bad times, I try to keep my chin up (pardon the pun!) wrinkles an all xx

Melba1

Both. Absolute hero in that it’s reduced mortality and morbidity hugely - many of us wouldn’t be alive or would be very damaged without it BUT so many horrible short term and long term side effects quite a villain too.

It sounds like maybe you not only have adrenal complications but also the disease is still not controlled? I can’t understand why they have essentially left you with such little help - can you change rheumys? One who listens maybe? 🙄

Xx

whisperit in reply to Melba1

Thanks Melba1,

Yes, I can accept that I may have been unlucky in having an unsuspected predisposition to adrenal problems, which pred was going to hurt. What really baffles me is that no clinician - and I have seen a bunch of different specialists - has offered any explanation for the symptoms of extreme fatigue plus episodes of sweats/shakes/nausea that turned me from a full time worker and mountain biker into a housebound invalid in the space of 18 months. Once my rheumy, as lead clinician, declared that I had developed fibromyalgia a year and a bit ago, it has been as if no other explanation is worth considering. I am hoping that this synacthen result - which I had to push hard to get - might prompt a rethink? We shall see x

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Melba1 in reply to whisperit

I haven’t found any specialist who can offer explanation or solutions to the fatigue either and yours sounds much worse than lots of ours 🙁. I saw a top lupus specialist a couple of weeks ago and she sympathised hugely with the fatigue we all suffered and was honest that no one really knows why or how or any solution. She said the only solution was to get the underlying autoimmunity under control - which is why I’m wondering with you whether that has really never happened? Have you tried any of the next stage drugs? It’s such a shame you have the adrenal issues too but maybe some more autoimmunity treatment will help? Although with our over sensitive to drugs bodies does it then cause even more problems?!

Very rubbish your life has changed so much - could you manage a trip to one of the big teaching hospitals? Sure you’d get more help and answers.

X

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whisperit in reply to Melba1

Yes, you are right about the fatigue. So many of us struggle with this....x

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Hidden in reply to whisperit

I think you probably know that my vascular / Scleroderma doctor explained that the severity of Sjögren’s fatigue is down to high concentration of immunoglobulins and/ or anti-Ro antibodies - which I don’t have but perhaps you do? He says the resulting extra viscosity means our bodies are doing battle with inflammation 24/7 and there’s nothing left in reserve. But there is no systemic treatment for Sjögren’s fatigue they all keep telling me. So I get sweats and nausea and huge fatigue but I don’t have adrenal insufficiency as you do.

And my friend with Addison’s and SS was referred by her endo to Rheumatology because he said her terrible fatigue was more likely Sjögren’s than anything endocrine. That’s how she was finally diagnosed in fact. Not sure this helps you at all but this could be why the endo thinks it’s your rheumy’s call? X

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whisperit in reply to Hidden

That's very interesting, Twitchy; no-one has mentioned that Sjogren's fatigue to me before. I do have anti-Ro but can't remember about the Ig levels. It would be nice if I could get to speak with the endo about his thoughts, but it looks as if he does not intend to see me again, despite the synacthen result. Very disappointing, as I have a few questions for him! I can see me ending up having to pay for private endo advice soon...

Thanks though x

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Hidden in reply to whisperit

I saw a private endo because my GPs refused to refer me for my poorly controlled hypothyroidism (which I’m privately considering may now be teetering on Graves). It forced them to refer me to an NHS endo who saw me twice and then discharged me back to GPs and rheumy just as yours did! Same with gastro and ENT. They always give me the “too many cooks..” argument which I guess they are doing with you too? It has some validity but is also a sign that they only really ever pay lip service to the whole multidisciplinary medicine thing!

Here’s a link you might find helpful xx info.sjogrens.org/conquerin...

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Hidden in reply to Hidden

Ps Tired-Wired is my speciality with or without Pred. X

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whisperit in reply to Hidden

thanks twitchy, I will take a look at that later. Right now, after a whole day spent researching adrenal insufficiency, I am experiencing burn-out. Oh for the days when every once of energy was not absorbed in managing the painful business of getting from one moment to the next. x

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Hidden in reply to whisperit

Aww yes I can relate entirely. It’s not demanding intellectually though - just describing the different kinds of fatigue Sjögren’s engenders in most sufferers. I think it’s pretty interchangeable but the vascular dr and the endo both told me that the extent of SS fatigue is unique to the disease because of permanent blood viscosity. This is why my PV/ ESR has been so high always I guess - regardless of disease activity. Xx

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Lupiknits

I'm so sorry Mike.

I know so little about any of this, beyond the fact that, at the very start of my journey, Prof Handsome muttered that pred would help me but given my bi polar disorder there was no way i would be getting it.

I've just looked it up in full, and yes, it can be a hero, but by 'eck it's a villain too.

whisperit in reply to Lupiknits

Thanks Lupiknits x

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Buffy14

It is definitely BOTH , I was on very high dose steroids for months when first diagnosed 15years down the line now on 5mg daily and was told recently by my rhematologist that I will have to stay on them for life . I have osteoporosis which is getting worse according to the dexa scan results so would like to come off them really but doctors say no , won't let me reduce or come off immunosuppressant drug either as I have kidney involvement . The only thing I can say is it's better than dying , prednisolone can be a life saver I know that from when my children had asthma i almost lost my son aged 5 years from asthma ,at one stage gp had given me prednisolone and i could give it to him at the start of an attack but then the consultant said he didn't need prednisolone , he then had a severe asthma attack ended up in hospital where they give him prednisolone straight away , too late though he was so bad he had to be put on a ventilator and was transferred to the children's hospital in Manchester , he was in intensive care for 6 weeks before being able to come off the ventilator . The consultant at the hospital in Manchester went mad when I told him the doctor had stopped giving me the prednisolone for him , he said if it had been given earlier he probably would not have ended up in intensive care . Sorry to go off the lupus track but I think as bad as it can be it is no doubt a life saver it may have saved some of our lives on here and we don't realise it , i once got a telling off from a doctor in the early days because I said I didn't want to take these horrible drugs , he said I didn't appreciate how ill I was .

Hidden

It’s got to be the quick fix friend and long term enemy I think. I’ve been having courses on and off for much of my life and I hate it. But it has saved my life on a couple of occasions due to anaphylaxis.

No rheum has ever wanted me to take it for rheumatic disease. In all three areas I’ve lived in they have all preferred steroid shots and where I am now I’ve not ever been offered these, despite pleading last year.

I have had short sharp shocks of 40mg of Prednisolone for a week to open my airways occasionally and am always glad to get off it again.

For my friend with Addison’s it’s obviously a life saver but for you - from what you’re saying I just don’t know? What did the GP suggest doing now? I feel they should be rallying around trying to help you at last under the circumstances. X