help with steroids

[Laceygreen]

I’ve been on steroids for about a year and a half. I’ve also had an infusion last September due to have another one in April. Rheumatology nurse said I need to get down off the steroids. I was on 15 than 10. I’m now on five but I feel so ill. Nothing is working. Can’t do anything I’m out of breath. I was in hospital last night with fluid round my heart due to rheumatoid, and basically I am getting very depressed, my question is how long have people been on steroids 15 mg I just don’t seem to be able to do anything without being on them. Thank you for reading

[Laceygreen]

I was in hospital last may not last night as it says

[KittyJ in reply to Laceygreen]

if you click on ‘more’ at the bottom of your post you can edit it 😊

[ruth_p]

What other medication are they trying? I don’t understand why they’re trying to taper you off the steroids when they’re clearly not getting you stable enough with a dmard. I don’t recommend staying on steroids long term because the side effects are not pleasant but they need to get your RA under control first.

[Maisie1958]

Hello Laceygreen so sorry you are feeling so awful. First, any breathlessness should be checked out (easier said than done I know) especially after your hospital stay last year. Certainly Pred can contribute to breathlessness , but so can reducing prednisolone if your adrenals are sluggish after being on it for a while?

I was on low dose Pred for years, then diagnosis changed from polymyalgia rheumatica to inflammatory arthritis and MTX started. It took me nine months to slowly wean down from 4mg to zero and even then I did have a time when my blood pressure would drop, HR increase and just feeling awful with fatigue etc. If you have dropped rapidly to 5mg of prednisolone then possibly your adrenals just haven’t caught up. There’s lots of slow reduction plans over on the pinned posts on the PMR//GCA page and perhaps try to have a look at adrenal insufficiency (secondary to corticosteroid treatment) Again on the pinned posts. Your GP could arrange a basic cortisol blood test or rheumatology a ACTH stim test (though again easier said than done) You would likely have to be on 5mg or less of prednisolone for these to have meaningful results though.

I think I would want to get the breathlessness checked out asap and definitely be stable and feeling better before trying to taper off long term steroids. That quick drop would be enough to make me feel dreadful by itself, adrenal insufficiency is certainly a real thing that seems to get ignored. It may be that you are just not on a high enough dose, long enough to control the inflammation but trying to drop quickly in big steps isn’t good if you have been on prednisolone for months. It’s done when steroids are used short term eg chest infections.

Sorry for the waffle and I do hope you feel better soon. Please contact your GP or rheumatology and let them know how awful you feel and any breathlessness should be investigated fully. All good wishes.

[Laceygreen in reply to Maisie1958]

thank you so much for your reply

[trunchalobesity]

22 years. 7.5mg

I do have osteopenia now though as a consequence of long term use.

[tyncwmmarchhywel in reply to trunchalobesity]

Hi trunchalobesity , are you like me and unable to tolerate bios jks,ect., and only have 5ml predislone to fall back on, I have been hoping to go on to 6 mlg but so far no luck. take care.

[trunchalobesity in reply to tyncwmmarchhywel]

I’m on a maintenance dose of prednisone at 7.5mg and also mycophenolate at 1g, I take the biologic Tocilizumab by injection once a week and have started Nintendanib this week.

My lung fibrosis is progressing so I have unfortunately got to suck up any side effects as these are life extending for me. I take lots of others for life quality x

[Runrig01]

Hi, my story is similar to Maisie. I was initially diagnosed with polymyalgia and GCA in 2012, they had trouble managing it, and getting my steroid dose down. In 2016 I seen a specialist in Leeds, I live in Kent, who felt I had another illness overlapping the polymyalgia. I was subsequently diagnosed with Ankylosing spondylitis. Pred is frowned upon for AS, so I desperately tried to reduce my dose. From 7mg downward I felt dreadful. I was losing weight which I presumed was due to the lower pred dose. I also was getting nauseous, extremely dizzy, low blood pressure, feeling increasingly stressed. I was known for being chilled and not getting wound up in stressful situations, I was award sister, and colleagues started noticing the change. My GP referred me to an endocrinologist as I suspected my adrenals. Unfortunately 3 weeks before my first appointment, I suffered a severe stroke at 52, which was found to be due to an adrenal crisis. My cortisol levels were undetectable, when they should have been over 1000 at the time of the stroke. I had the SST - short synacthen test which also showed undetectable levels that peaked at 72, instead of the 500+ it should have been. My adrenals have unfortunately atrophied and will never recover. I have to carry an emergency intramuscular injection at all times, family have been trained to inject. Any stress good or bad, can trigger low cortisol symptoms, which can progress to a life threatening crisis. I regularly have to use my injection as I suffer severe migraines with repeated vomiting. I would not wish adrenal insufficiency on anyone, you have to think ahead and take extra steroids for any stress, where your otherwise healthy adrenals would normally release more cortisol. I always urge people to find an alternative to steroids. Unfortunately steroids are the only treatment for polymyalgia and GCA, so I had no choice, with RA there are other options. Sorry for the long post, but it’s a side effect that very few are aware of. We all know about diabetes, osteoporosis etc, yet so little is mentioned about life threatening adrenal insufficiency. If you do get any of the symptoms I mentioned please do not taper further, go back to the dose where you felt well. As Maisie says it would be a good idea to get a blood cortisol by your gp, it needs to be between 8-9am before you take your steroids. If that’s low they then need to refer you to an endocrinologist for a SST. Take care, and hope things improve for you 🤗 ps I was on 4mg pred when I had my stroke

[Maisie1958 in reply to Runrig01]

hello Runrig01 I do remember you from the PMR/GCA forum and how much you raised awareness of the life threatening and life changing consequences of adrenal insufficiency with long term prednisolone use. I’m sorry you had to go through it. Even 18months ago when I thought I should check with GP that my dizziness when getting up and feeling of “doom” was “just” lowering my Pred dose a bit quick (0.5mg every 4 or 6 weeks) the very nice GP suggested I should drink more water to help with low BP and why was I reducing so slowly?! 🤷‍♀️I told her politely that rheumatology was on board with my taper-had already said I was actually craving salty food. I was on 3mg/2.5 mg Pred daily then. Happily things soon settled. All the best x

[Runrig01 in reply to Maisie1958]

some GPs are unbelievable. My rheumatologist prescribed me a similar taper. Because I was an unusual case getting PMR & GCA before 50, I was referred to Prof Dasgupta in Southend, who wrote the guidelines on GCA. He had me do the “dead slow nearly stop” taper, where I dropped 1mg just one day of the week, then the next week 2 days and so on. So it took 7 weeks to drop 1mg. The idea being the adrenals wouldn’t get shocked with the reduction.

Getting craving for salt is concerning as it doesn’t occur in adrenal insufficiency due to steroid use, as it’s classed as secondary AI, as the original cause is with the hypothalamus and not the adrenals. Salt craving should only occur in primary AI, like Addisons where Aldosterone production as well as cortisol is impacted. In these cases you also need fludrocortisone to replace the Aldosterone. Another symptom confined to primary AI is skin pigmentation, which is caused by the high levels of acth, the hormone needed to stimulate cortisol production from the adrenal gland. It will be very high in PAI, whereas in SAI it’s low because you’re on steroids the body believes it doesn’t need more cortisol. A SST will be able to confirm if you have primary or secondary. If symptoms recur please push for referral as you will need an emergency injection, for vomiting, illness or injury. Take care x

[Maisie1958 in reply to Runrig01]

thank you, I did think the desire for salt might have triggered a response from her! At the time I really didn’t know much about adrenal insufficiency. Been ok since but it’s something that definitely needs sorting if recurs . All good wishes to you too x

[Laceygreen in reply to Runrig01]

gosh you poor thing having all that going on I hope your feeling ok at the moment x

[Runrig01 in reply to Laceygreen]

Thanks, I always seem to have something going on. I injured my ankle last year with a tool in my allotment. 8 months on it’s still not healed. I’ve been telling the nurses for over a month that it’s infected, although it doesn’t visibly look infected. However I’m on so many immunosuppressants that mask the symptoms, which they don’t understand. On Monday I put my foot down and insisted a Dr reviewed. They agreed it sounded like infection as my pain score has gone from 2 to 7. Swabs were taken and dr called yesterday to say I have a pseudomonas infection, which is difficult to shift and dangerous in immunosuppressed. So currently changing to a combination of antibiotics, and need to stay off my meds till resolved. I missed the week before meds as I was certain I had an infection. So pains are already building up. Sorry having a whinging day. Thanks again for your kind words 🤗

[Jeremycfc]

Hi Laceygreen,I totally agree with Maureengibson you have to be very careful coming off preds, I was on 5mg for twelve years and it took 18 months to finally get off them, recommend you insist on getting a short synacthen test to establish how your adrenals are working, really hope you can get this sorted out soon 👍

[Runrig01 in reply to Jeremycfc]

it’s worth mentioning that patients with AI due to steroids can pass the SST. It only excludes primary AI, unless your adrenals have already atrophied then you will fail the SST. My initial cortisol was undetectable and peaked at 72, whereas it should peak 500+. If you get a good response from the synacthen that only tells you, your adrenals are capable of producing cortisol when artificially prompted. If you’re not producing your own natural ACTH, which is what happens when on steroids, then your own body won’t release cortisol in stressful situations. The good news is if you do respond to the synacthen then there is the possibility your adrenals will recover. Unfortunately because 90% of my adrenal cortex has effectively died, I need steroids for life. Anyone on long term steroids should push for an 8-9am cortisol and if that’s low a referral to endocrinologist. 🤗