I've had PMR since October 2020 and managed to get down to 2.5mg of prednisolone in February 2023. But after a flare, I had to raise it to 5mg and have been pain-free since then. I started on methotrexate weekly injections (15mg) in December 2023, with the hope of being able to reduce the prednisolone further and hopefully phase it out altogether. After six weeks of methotrexate, my rheumatologist decided I should reduce the prednisolone to 4mg and have a 9am cortisol test and then a synacthen test. My score was 88, which indicated adrenal insufficiency. He therefore instructed my GP surgery to issue an emergency kit for two hydrocortisone injections and asked them to arrange for me to be shown how to use it, in case I had a stomach upset and could not absorb the prednisolone. I saw a nurse there on Monday, and she had to look up on the internet how to do it. It was complicated, there was a phial of hydrocortisone powder that was to be mixed with an exact amount of saline solution fed through a hollow needle, which then had to be discarded because that procedure blunted the needle. Then you took the second needle, fitted it to the syringe, drew the liquid up into the syringe, and injected it. I thought I would never remember how to use it in an emergency, and would not know how to inject myself (the methotrexate is easy, it's already made up and you just press down onto the thigh). On this forum it seems that a lot of people reduce prednisolone without worrying about adrenal crises - they sometimes seem to go through a period of fatigue but I haven't read about anyone being issued with an emergency hydrocortisone injection kit. The other thing is that my rheumatologist seems to think that, as long as my adrenal glands are not working, I cannot reduce my 4mg daily of prednisolone. But I'm wondering if that makes sense - surely they will only start to work when they're not being replaced by prednisolone?
Rheumatologist advices no reduction of prednisolo... - PMRGCAuk
Rheumatologist advices no reduction of prednisolone while adrenal glands not working and has issued emergency hydrocortisone kit
the hydrocortisone vial in my emergency kit has both the hydrocortisone (solu-cortef) powder and saline in the same vial. There is a bright yellow plastic cap that you push down and it releases saline into vial then shake to mix. Pull off plastic cap clean orange rubber cap with alcohol wipe stick syringe with needle into vial and draw it up and inject it into your thigh. I have a two page instruction (with pictures that is folded up in both of my emergency kit) Incase I am unable to do it and someone else needs to.
Also you may be able to find a video on you tube for your particular kit which maybe helpful too.
Peggy
That sounds a bit easier to administer. My rheumatologist, though working in Leeds, is Latvian, so maybe they have kits like that in Latvia.
There are instances of patients with an emergency hydrocortisone injection kit..; but not that many it’s true.
I’d follow Rheumy advice and stick at 4mg for now…. That is low enough for your adrenals to realise they need to start working, and at that dose they will start to try…so give them a chance, but you will need to reduce the steroids [very slowly] in time…
Mybe have a look at this for more info -
SheffieldJane was sent a kit out of the blue much to her horror at the time! There are a few on the forum I think. It always seems a bit crackers to me - it is quite complex and fiddly to prepare the injection and YOU are likely to be feeling pretty ropey when you might need it. You are supposed to make sure someone who is usually around nearby knows the signs and how to prepare and administer the injection. The alternative is 999 - the paramedics carry the injection and can administer it.
And yes - you are quite right, your adrenal glands can only start to wake up and produce cortisol when the pred dose is low enough to stimulate that. 5mg is certainly loads to suppress cortisol production so no wonder the basal cortisol was so low.
While it may sound difficult and intimidating I would rather learn then go through what I did at an ER visit last Spring. I was slow tapering and had just hit 3 or 3.5mg of prednisone , I suffered a diverticulitis attack , I had increased my prednisone as directed. In the middle of the night had horrible pain and nausea, I went to closest ER which was not part of my Duke University Health, I explained adrenal insufficiency to the PA and he didn’t seem impressed and felt I had taken enough pred to handle, my BP was low and I was feeling horrible. I was feeling quite faint and finally ER Doctor came in all excited, she is in adrenal crisis push this and push that, keep pushing the fluids! Get another bag going! I was in and out of consciousness at that point. It was scary. It took about 24 hours to get things back to normal. My endocrinologist does not want that to happen again if I have to go to a different ER or am unable to quickly, nor do I. I now have a bracelet and I have one emergency kit attached to fridge with pictures instructions, my neighbor is aware of it and my daughter and son in law have been instructed on how to use it. My endocrinologist office offered to show me how to use it and practice. I declined as I am retired hospital pharmacy technician and am quite skilled at this. I am also use to giving myself injections with Actemra and Repatha. I know everyone’s situations are different and this is just mine. I do know that not all ER’s, and medics understand GCA and steroid tapering. I feel like I have a little more control now especially while traveling.
Peggy
Oh absolutely - the new red steroid emergency card was developed by endocrinologists in response to experiences like that where far too many healthcare professionals were far too dismissive of long term corticosteroid patients who were circling the drain of adrenal crisis and not being managed properly. But the card is only as good as the education the HCPs are given to know what to do with it.
That’s a very sobering story. Thank goodness the ER doctor realised what was happening. I’ll do my best to figure it out, but hope that I never have to use it. Thank you for sharing it.
back in 1979 when taking steroids for Stills Disease I was just 17 years old. I remember carrying the card and my Mum instructing my friends and any lads that called for me that if anything happened they were to show the card to doctors etc. As a teenager I was naturally mortified but worse followed. Before leaving the house Mum insisted on writing the words steroid taker on my hands in indelible ink. Needless to say this made it very hard to buy babysham ( other brands available) in the local pub!
I too am under Leeds endocrinology for adrenal Insufficiency and rheumatology for LVV/GCA .
I feel confident with both consultants. And happy to stick to the 4 mls advice . I was on 6 mls pred when first showed signs of AI
I agree there should be a more patient friendly injection option particularly when you are supposed to use it in a time of a crisis. However my current problem has been in getting a replacement for the powder/water injection which was out of date . I understand this has been in short supply for two years. After trying several local pharmacies only one Pharmacist was able to get the powder and had to rely of their own stock of sterile water . They suggested we now need to have two emergency back up injections .
I was interested to hear there is another option for the two file injection . This information doesn’t seem to be available at a local level . I would welcome more information about the manufacture so I can pass this on.
mskcc.org/cancer-care/patie...
cahpeptalk.com/wp-content/u...
describe the formulation pmac describes above. You could ask your pharmacist if it is available in the UK. But there are still shortages of the kits in the UK - don't know if it is general situation as it was a few years ago or just the UK which is suffering even worse supply chain difficulties than elsewhere.
Thank you for this. I’m going to print out all the information and will give my rheumatologist a copy. I do think that if the NHS is issuing kits like this, they should provide printed step by step instructions with illustrations.
The Solution-Cortef (hydrocortisone ) vial I was given for emergency injection is a single dose vial with a yellow plastic top, you push/break the top down which releases solution into the powder.
It is made by Pfizer and is called a “single-dose Vial 2ml Act-O-Vial”
Solution-Cortef 100 mg/vial
It is not something normally carried in a retail pharmacy (my pharmacy had to order it) I am sure an outpatient hospital pharmacy would have it as it is something used in many kits in a hospital. Hope this helps.
Peggy
I would also like to know if there are other easier options in the UK. I’m not being treated by Leeds endocrinology - so far I’ve seen three different male rheumatologists, and also use the rheumatology helpline, which is very good. The pharmacy which supplied the hydrocortisone powder is the Meanwood Pharmacy. They gave me 20ml sterile water cartridges, but they would have been out of date in May 24. The practice nurse had only 30ml saline cartridges instead, and said I would have to remember to take out only 20ml if using the injection - I will have to write that as a note to store with the kit.
See my reply to Avocadotoast immediately above.
I was given one of those emergency kits when I had adrenal problems many years ago. Nobody told me how to use it so I concluded that I would have it on me and in case of emergency I would call 999 and get the paramedics to do it. The main possible emergency is if you start vomiting or pass out, if either of those things happen get yourself to A&E
I'm totally confused here. I was in a similar position a few years ago. You could take hydrocortisone tablets either instead of the Pred or to supplement a low dose of Pred. But HC does nothing for PMR and inflammation (well only a tiny bit) it just substitutes for lack of adrenal function, and keeps you alive if your adrenals aren't working, as in people with Addisons. So if you still need Pred and respond and feel better on it then you probably still have PMR and therefore probably need to be on steroids for that. I was told at the time my PMR must have gone away as I'd had it for so long (that old myth) but they were wrong, it was still there and stopping Pred entirely made it flare up with a mighty vengeance
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