Over 2 years on Steroids?

[Offcut]

I am new to group and have many co morbidities I am afraid mainly heart and Lung Failure. Here is my story with TA todate.

Over 2 years ago I was diagnosed with Temporal Arteritis. Treatment was 75mg of Steroids a day! Now that was a very strange time on how my body reacted to it? It did reduce the pain but it also attacked my skin and all those little bio's that happily co-exist on my body were attacked by the steroids. it was like being a teenager with a spotty face but all over me this time! After a long-drawn-out reduction process my Temporal Arteritis had not completely gone away! So, a 5mg a day for the next 2 years was the plan.

Overall, it was not a bad option to take and I did not have a lot of side effects from them? In fact, it seemed to have done me some good? I have not had any bad chest infections and for some reason my heart conditions have not changed in the last 18 months which has confused my PH consultant in Sheffield. As he was convinced it would have got a lot worse! My PH is still very high so I should have done something to the stress on the heart? Also, while this has been going on my Diabetes Type 2 has dropped to normal levels? (But I am still classed as Diabetic?)

Now it was decided by my Rheumy that as I still have a sensitive skull that I reduce my 5mg to zero over the next 2 weeks then a little wait and a blood test to see if there are any inflammation showing which will mean another look at what plan of action to take? It could mean a lifelong steroid plan? Or maybe something else?

I have managed to type all this while waiting in their queue for an appointment with my GP for a Telephone appointment for my COPD/RLD Review! I am now number 2 in the queue!

Be Well

[PMRpro Ambassador]

Hi and welcome!

Just one question: reduce from 5mg to zero over 2 WEEKS? Really? Has he checked out your adrenal function after so long at 5mg and above? That is plenty to suppress cortisol production.

[Offcut in reply to PMRpro]

Quick Answer no! At the moment all I ever get from anything medical is telephone appointments! Except for my PH as they always do loads of tests on me when I go to the PH hospital in Sheffield

[PMRpro Ambassador in reply to Offcut]

Is that no to the precipitate dropping of pred too? I'm horrified if you are to stop that fast.

[Offcut in reply to PMRpro]

No to any tests now or before in the last 6 months. As for the preds that was the plan from him zero in 2 weeks then a blood test 2/3 weeks after that to check for inflammation? I was treated by Physio about 4 months ago as I have neck and shoulder problems which my GP put down to a Road accident, I had many years ago? Snapped Trapezius! But now I have looked a bit deeper it could be TA?

Just had a thought my wife mentioned I had an incredible tooth ache but they could not find anything?

Be well

[PMRpro Ambassador in reply to Offcut]

What concerns me is that 5mg pred is plenty for the body to function even if the adrenal glands are not producing or able to produce cortisol, the body's natural corticosteroid which is essential to life.

Once you have been on pred at about 10-15m for more than a couple of months, that natural process is suppressed. The body only needs less than that and a complex feedback system tells what is called the HPA axis (the hypothalamus, pituitary and adrenal glands) that there plenty so no more need be made since too much corticosteroid is bad for you. Over time, the system goes into hibernation and only wakes up once there is a lot less steroid present in the body than you need. Like a tortoise, it takes time, it doesn't happen overnight just because there is no pred there. It usually takes at the very least a few months and even after stopping long term pred altogether it takes up to a year for it to function reliably! It is always emphasised that you must NOT stop pred suddenly. Even over 2 weeks is suddenly.

What is being suggested you do is a very risky action and would put you at risk of an adrenal crisis which could make you very unwell, requiring hospital treatment at least and putting your life at risk at worst. Please seek other advice before doing it.

[Offcut in reply to PMRpro]

You have certainly given me something to think about. It is an absolute nightmare to get to speak to anyone in my GP surgery (even Reception) So might try the Rheumy Secrertary first ?

[PMRpro Ambassador in reply to Offcut]

I should have added, you will find lots about adrenal function in the FAQs.

You could try the rheumy - and ask them about your concerns, maybe they don't realise how long you have been on pred, but if they have this idea fixed in their mind, you might struggle with them. You could also try the PH people in Sheffield and explain how worried you are about this and ask if they can advise.

Is the rheumy a consultant? Are they head of department? Another option is via PALS at the hospital who do deal with such things when a patient and a doctor are in disagreement or simply just don't get on - and might be able to arrange for you to see a different specialist for another opinion. It is a tricky situation - and far too many GPs don't know enough to dispute the suggestion.

What you do need to do is to write it all down and get your facts and figures clear. Whoever you go to, must have the facts to know what to advise.

[Suffererc in reply to PMRpro]

it is quite scary the things we read that GPs advise. Time they all got there act together

[DorsetLady PMRGCAuk volunteer in reply to Offcut]

Please do, as PMRpro says too risky to drop so quickly ...

I started on 80mg so know all about strange times....

Info on adrenals...healthunlocked.com/pmrgcauk...

[Offcut in reply to DorsetLady]

Thank you it is all interesting reading did not know how complicated Steroids are once you start long term. I used to have a rescue pack which had Antibiotics and steroids for my chest infections. But my new GP practice will not give them to me as I have become more complicated!

[DorsetLady PMRGCAuk volunteer in reply to Offcut]

Yes short term and long time use protocols are quite different -not sure all GPs get that!

[piglette]

Are you certain they meant you to drop the steroid dose from 5mg to 0mg in two weeks? They could be accused of causing severe adrenal problems if that is true or did your theumy just want it reduced for a short period for a test as they are suggesting steroids for life?

[Offcut in reply to piglette]

I am really starting to doubt myself now? But I am sure he said 2 weeks then 2 weeks for bloods and then see where they will go from there? I have sent an urgent request form to my GP surgery with my concerns and from what the NHS site said that even after a week it is best to reduce slowly?

[piglette in reply to Offcut]

Good move.

[PMRpro Ambassador in reply to Offcut]

You can just stop after a week, whatever dose you are on. It;s after about 3 weeks it gets harder. He could well have said that - some doctors really seem to be in a different world!

[Offcut]

cks.nice.org.uk/topics/cort... Not sure if this was on your FAQ but a good read. If it was not for the diabetic clinic doing a yearly eye check-up, I would not have had one?

[DorsetLady PMRGCAuk volunteer in reply to Offcut]

No it’s not - a lot of advice about what should be offered when on steroids, but not sure if it actually is in most cases.

[PMRpro Ambassador in reply to Offcut]

I can't read it as I'm not in the UK. However - I'm assuming that there is something about annual ocular pressure checks? Everyone should be told to get them checked. Used to be you got annual eye tests free but then they stopped that and it went back to 2 yearly unless you pay. But since they were only £10 they were worth it - more now no doubt.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

“Eye adverse effects — arrange an eye examination every 6–12 months, but earlier for people with symptoms of cataracts.

Arrange early referral for intraocular pressures assessment if personal or family history of open-angle glaucoma, diabetes, high myopia, or connective tissue disease (particularly rheumatoid arthritis).  “

[PMRpro Ambassador in reply to DorsetLady]

Hahahahahaha!!!! Maybe NICE should tell the Ps that B! 6 monthly???? They jest ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

😊I did say what should be offered……

[Flivoless in reply to PMRpro]

My pressures went "off the scale" initially. Adequately controlled by Timolol 0.25% drops.

[AndyPolly]

I've been on Pred for nearly 7 years. At the start of Covid I was on 3. Since then I've reduced to 1.5 mg. That 1.5 mg in 3 years. I have no timetable to get down to zero. I might be off by the end of 2023, but my dose is so low why should I hurry. The slower you go the less likely are flares and the lower you go the less likely are side effects. The NHS received wisdom that PMR only lasts 2 years is misguided and not supported by the science and patient experience. All you need is a sensible GP, but they are few and far between. Rheumies are even worse . One that I saw said stop Pred and I'll put you on amyltriptylene. Crazy!

[PMRpro Ambassador in reply to AndyPolly]

Amitriptyline?? How is that going to help PMR? It isn't nerve pain. Or was he suggesting it in its role as an antidepressant?

[AndyPolly in reply to PMRpro]

This was a very senior Rheumy at the Nuffield Orthopaedic. He said my pain was not PMR quoting that after 2 years it's gone. He said drop from 6mg to zero over 3 months. Amyltriptylene is a muscle relaxant. He said after 6 months I could stop the Amyltriptylene and be pain free. My GP is brilliant, knows I know a lot about PMR, mainly from being on here and lets me do what I want reducing my dosage. 1.5 mg now and I'll very slowly go down to 1.0 then if my body allows it zero by the end of next year.

[PMRpro Ambassador in reply to AndyPolly]

May be very senior - but he is out of date and very wrong!!!! I'd refer him to Prof Sarah Mackie in Leeds ...

Not even sure about his claim of it being a muscle relaxant - it may or may not have that effect

"Amitriptyline may work as a muscle relaxant as it helps rebalance the chemicals in the brain. This can lead to the relaxation of muscles, pain relief, and sleep regulation. However, while it does help in muscle relaxation to some extent, it does not come under the class of muscle relaxants."

[Suffererc in reply to PMRpro]

needs to retire !!!!!

[Hidden]

"Just one question: reduce from 5mg to zero over 2 WEEKS?" From my recent experiences No don't do it.

I know we're all different but I have been in this position a couple of times recently and have decided to settle at 5mg 'til after the New Year celebrations then I will chip away at 1mg a time.

Good luck

David

[Offcut]

UPDATE: I mentioned I had filled in a GP request form yesterday. Well, I got a call this morning and they said A Doctor has looked and the 2 doctors I requested cannot speak to you as one is retiring today and the other will not be free for 3 weeks? I explained that it appears these sudden decrees are not a good idea for someone who has been on them long term? However, they were just preferred choice I am happy to speak to anyone? After a lot of humming and erring I was told a doctor will ring me tomorrow! It will be the one that I cannot talk to for 3 weeks?

[PMRpro Ambassador in reply to Offcut]

Interesting!!! Mind you - I have my reservations about their level of knowledge too but we'll see ...

[DorsetLady PMRGCAuk volunteer in reply to Offcut]

Obviously found their voice in the filing cupboard! …what a palaver-hope you get a meaningful response 😳

[Offcut in reply to DorsetLady]

The funny thing was they said we are answering calls within 10 minutes! Which is funny as my last call to them took 37 mins to answer!

[Suffererc in reply to Offcut]

😂🤣😂🤣 beat you by 10 minutes and then cut off

[Suffererc in reply to Offcut]

lost my reply.

gosh. GP’s will blame the government for the mess they are in. Me thinks it is bad practice and mismanagement and NO compassion

[Offcut in reply to Suffererc]

I understand that covid really messed things up but before if I needed to see someone urgently. I could just wait with a card and take the spot where no one turned up or there was a gap? I have many complicated conditions of which one is IPAH however it took some time for them to get their heads around it. They are on a different budget and my medicine comes from another source. My PH specialist hospital is in Sheffield which is 91 miles away. On my first day I had a nuclear MRI and standard MRI, Chest Xray, Blood test, Walk beep test, ECG and an RHC. After which my results and treatment were explained! Now that is efficient! I found a very painful lump and manged to get an appointment only because I was seeing the nurse on my COPD yearly review it was then they bought in a GP who said "WOW that is a big Abscess!" AB's were given and cleared it. Some weeks later I had another but could not get an appointment for love nor money I even asked them to give me the same ab's as before but no need appointment? Sorry for rant got carried away!

[AncientMariner]

I share the alarm at that rate of reduction, it might not seem a lot but 1mg is a big percentage of 5mg if that has been holding you and to stop entirely over two weeks? I would be asking questions about that and request a slower pace, some of these medics need to learn to sit in other's shoes.

[Offcut]

Update: It has now been confirmed that I will reduce by 1mg over 2/3 weeks then another however if any symptoms even slight come back, I need to speak to them ASAP!

[PMRpro Ambassador in reply to Offcut]

It isn't the PMR/GCA symptoms that worry me!!!!! Make sure you can recognise signs of adrenal insufficiency/crisis and preferably write a note to pin on the fridge or somewhere in case you are taken ill and make sure someone else is aware - it can be quite sudden if it happens,

uclahealth.org/medical-serv....

If you DO feel unwell as described there don't hesitate to call 999 and tell them you are rapidly reducing a long term pred dose. The note on the fridge will help the paramedics too.

[Offcut in reply to PMRpro]

Thank you for your help and concerns with this. My GP called this morning and a proper reduction plan was agreed. He looked at what the specialist had written and said he understands were the confusion has come from? He did emphasise how important that I do not feel ill while going through this process. Which is not easy as I am a complicated with many comorbidities. I have been tested for all sorts of obscure conditions Anderson-Fabry disease being one that has popped up a few times but bloods said no?