I had a Synacthen Test last week and got the results yesterday. I am on 5 mgs of Pred and have been for a long time. I fully expected to fail the Adrenal function test. To my astonishment, I passed the test to measure the potential for my Adrenals to function without Pred with flying colours. My numbers were baseline 378 rising to 485 after the Synacthen was given. This figure is comfortably within the normal range.
The advice from my Endocrinologist is to begin reducing by alternating 4 mgs and 5 mgs each day for 4 weeks, then spend 4 weeks on 4 mgs, then begin alternating between 3 mgs and 4 mgs for 4 weeks, then 4 weeks at 3 mgs and so on until zero. This advice has been given because “ this patient experiences withdrawal effects”.
This was not my plan. My intention was to reduce by half a mg using DorsetLady’s method outlined in FAQs. The Endocrinologist is right, I do experience PMR- like symptoms upon withdrawal. My taper has been delayed due to diverticulitis and the unavailability of coated Prednisalone which I have now ( at last) been given. I am tempted to follow his programme because I have been stuck for so long. I have no way of knowing whether my GCA/LVV is properly in remission. Abdominal pain, diarrhoea, nausea and occasional vomiting have been dominating my symptom picture, along with feeling generally unwell. I was told by the Endocrine nurse that Prednisolone can itself, make you feel unwell when you have been on it for a long time (7 years). I am sensitive to uncoated Pred ( abdominal pain) and we cannot cut coated Pred. I would appreciate any thoughts or experiences others have.
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SheffieldJane
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Jane, this is really good news and I hope the taper in any guise you choose goes well. I am sure you would have thought of this already, but some of the symptoms I blamed on steroid withdrawal, most notably nausea, seem to have been caused by an H Pylori infection. I have just finished a course of antibiotics and feel significantly better as a result. Just a though.
Tests have come through clear so far. I am not sure if this was one of them. I am fasting today following yogabonnie’s advice. My abdomen is completely settled. Thicker liquids tomorrow and soft foods the next day. It is wonderful to be painfree, like childbirth I am forgetting quickly.
As he’s the expert I think you probably have to try his way.. at least for the first month and see what happens. If it doesn’t suit you, you’ll have to discuss.
I know we usually say the alternate day reduction plan isn’t the best way for your illness, but I think it’s recognised more in helping adrenals… but the only way to know is to try.
It is good news!!! . It is also true that prednisone withdrawal has lots of side effects even tiny bits. My doc thinks if I want to be on .33333333mg a day forever I can go for it. I am pretty sure my PMR is in remission and can drop to 0 but am so afraid that I keep on with my 1 pill split over 3 days. (splitting is a feat in itself) however.. I have huge symptoms which I now think are just my osteoarthritis full blown because of the lack of prednisone (tingling hands painful at night.. but just normal achy in the day ) he tested for RA and I do not have that. I think I keep forgetting that being nearly 77 can have symptoms of its own. I know tylenol (paramecetol) takes away most of it..so not PMR. ANYWAY all that is to say.. Good for your test and I hope that slowly you can reduce. BUT I agree a bit in the slow slow method. Perhaps you can split the difference between DSNS and the advice you were given!!! Stay well and good luck!!
I just wanted to tell you that I have a GCA friend who has been on 1 mg for 25 year! She feels fine on the 1mg.....so she takes it. You certainly aren't doing any harm. I'd take it!💞
You are right about slow, slow, slow. I felt terrible last night on my first 4 mgs dose and gave in and took 1 mg, so it is back to half mg drops. I have aching hands too and neck, osteoarthritis, I believe. I feel cheated after the last few years.
that is just the right word. Cheated. It is as if we missed 5 years... somehow.. at least missed gradually getting worse and suddenly find ourselves so much older! However. we are here!!! hurrah. bon courage!!! we can do this. oxoxo
hi yogabonnie! What a wonderful message! We are here! I have kept a diary on this awful disease from the start 2 years ago. Now down to 1.50 mgs and as my doc said at the beginning, “you are in for a rough ride”. Yep It has been. But as you say, we are here. We will get there. Xx
I finally got the peace and rest I have craved for years, I have read a thousand books, have a much closer relationship with the natural world. I am not really sure what I have missed- work and stress maybe, and cartwheels.😃
I guess you won’t know until you try. I can see alternating for 4 weeks would work, but question the then sudden drop to daily doses for the following 4 weeks, which I think could be difficult. That is just my theory. But no harm in trying as you can always revert to our tried and trusted method if not. Good luck 🤞
I too, as you may recall, have had other symptoms very similar to yours and lost a lot of weight because of it. I was diagnosed - after two years of my symptoms, with erosive gastritis in the stomach and SIBO. Apparently long term Prednisolone (I take Coated too plus PPIs) can cause gastritis, and in turn, that can cause SIBO. I found out yesterday that SIBO can cause gastritis too, so that complicates where I begin to try to sort all this! Anyway, telling you all this as wondering if one of these, or both, could possibly be what is causing your symptoms.
Thank you for this. I have had a colonoscopy and the capsule camera investigation that concluded it was diverticula disease. I have never been particularly confident of this diagnosis. I have never been so prone to throwing up and having such a temperamental bowel function. How was your diagnosis arrived at? Apologies if you have explained this already.
I was fobbed off for over two years with the medics telling me it was all to do with Crohns, but, like you had never had these additional symptoms with Crohns and just knew it wasn’t that.
Eventually they did an upper endoscopy and found gastritis in my stomach, which they said was likely to be due to long term Prednisolone use. However, the high dose PPIs which they put me on didn’t resolve my symptoms.
It was only when I was put on heavy antibiotics for a UTI which turned out not to be one, that all my symptoms miraculously disappeared!!
The conclusion was that I have SIBO which is apparently difficult to eradicate. I am on the waiting list for a breath test as there are three different kinds, but because I had diarrhoea prior to taking the antibiotics, I am assuming it is hydrogen SIBO. Of course, the hospital testing machine is broken and I am way down on the waiting list anyway!
Currently I am on two different antibiotics for a week to try to eradicate completely. Ciprofloxacin and Metronizadole. The antibiotic, Rifaximin, they normally give for hydrogen SIBO didn’t work for me, but it does for some.
Just hoping I don’t relapse when this current course is finished as it has given me my life back! It’s been a very long two years.
My symptoms were exactly the same as yours - diarrhoea, nausea, occasional vomiting, excessive wind, abdominal pain and loss of appetite.
Oh gosh! Everything fits. It is so wearying fighting all the time for a correct diagnosis. My GP surgery seems to have “ do not give antibiotics” on a loop and are not conducive to the frequent and persistent visits as of old.
I know what you mean. I am weary of it all, like you. They don’t seem to take into account that we know our own bodies well.
If I have to wait too long for an NHS SIBO test, I was going to bite the bullet and order a home test from Healthpath. I can’t do it until I have been off the antibiotics for 6 weeks, but if no one listens to you, you could order one yourself? They are not cheap - around £200 - but I also used this company, in desperation, for a stool analysis a while ago. It was really enlightening. The sample is sent to a German laboratory. They did in fact suggest I should do a SIBO test when they sent the comprehensive analysis to me!! Wish I had splashed the cash now, but when on a pension, there are limits!!
Let me know how you get on and we can compare notes.
I am following along your conversation with Sheffield Jane with interest having my own gastro issues identified as Diverticulitis. Of interest when I have had a diverticulitis flare (3 in the last 2 years), I was prescribed the same two antibiotics that you took….worked a charm! However going on abx means holding my methotrexate and slowing my taper. The various symptoms and medications, along with diet, all seem to be connected and have to work in concert. You have to be a determined and patient detective to figure it all out, with or without help from your medical team.
I personally think that the immune suppressants, including use of biologics which SJ and I have been prescribed are the root cause of our issues. I have to go back on biologics at the end of May and I fear it will inhibit any recovery for me.
I didn’t take Methotraxate with the Pred for PMR; tapered down to 2mg, but pretty much stuck there whilst I try to deal with all this. Never ending!
Abx are not good for our microbiome either, and SIBO has damaged mine and now have a leaky gut too! A minefield to try and work this all out and lots of ££££ spent on supplements!
Interestingly my father was also diagnosed with diverticulitis whilst also dealing with PMR/GCA.
He didn't throw up but he most definitely had a very temperamental and unpredictable bowel function.
My sister had PMR ( clear for 8yrs now) and also has diverticulitis. An episode for her will frequently involve vomiting and diarrhoea, a d quite intensely. She can lose half a stone over 2 to 3 days.
It's quite debilitating for her but she gets by somehow.
I’m wondering if their diverticulitis was caused by steroid use….it is one of the identified risk factors for developing the condition. Thank you for sharing this….interesting,
Yes there were multiple risk factors for diverticulitis that were shared with me at the time of diagnosis were: steroid use (and other medications), obesity, high fat/low fiber diet, lack of exercise, smoking and heredity. Unfortunately I tick a number of those boxes. 🙁
Sadly my sister liked (and still likes) an unhealthy amount of alcohol and she also has smoked for a very long time. My father on the other hand never indulged in either and always ate very healthily and exercised regularly. Just unfortunate I guess.
I was diagnosed with diverticulitis this New Year’s Eve. Was sent to hospital by GP where I had a mri and was given antibiotics for bowel infection and inflammation. Had endoscopy later which confirmed diagnosis. I get constipated, vomiting and lost weight as appetite was diminished. Still get symptoms despite a diet high in home grown organic vegetables. Have had PMR just over 3.5?years now so am finding this thread very interesting. Working with a book a friend recommended called Super gut which gives lots of advice for sibo. Have my first batch of home made yogurt for inflammation in the go to see if it will help alleviate some symptoms. Friend is doing it for her SIBO . Will try anything to help
I found your post really interesting as regards adrenal function, which was clearly good news for you. Interesting too, that the withdrawal symptoms were those highlighted by the Consultant. You have a pathway ahead for now, which, like all of us on the Forum, I’m sure, I really hope works out well for you after all these years.
There’s a lot about adrenals that we don’t know, and it’s most likely different for each of us. Apart from the odd days when I feel double fatigued and nauseous ( about once every six weeks or so), I think I am ok. I haven’t taken any pred for over six months now, so I’m assuming I’m still in the period where my adrenals are still settling down. .
" I am tempted to follow his programme because I have been stuck for so long. I have no way of knowing whether my GCA/LVV is properly in remission"
SJ - you know what I'm going to say: I wouldn't! He is working on the adrenal side of the problem. That would be fine for that alone - but the GCA side remains an unknown. And your withdrawal from pred is unlikely to have changed either,
Yes, I did know what you were going to say, they were my first thoughts too. However, my abdominal symptoms have limited my options eg cutting tablets. I also think that my current symptoms could all be attributed to my unhappy gut. I am awaiting the results of my latest ( vascular) MRI. This may give me a clue as to the state of my LVV. The fatigue and malaise are not stemming from a broken Adrenal function. I feel inspired to try his formula. I guess Sarah will catch me if I fall. I think she would support my decision. It might just work.
Bear in mind though that using DSNS starting at 4 days STILL reduces the dose by 1mg in a month and rather more gently than alternating doses - it also doesn't require you to cut pills.
Hi Jane, good news about the Synacthen test. Hopefully you will be able to reduce without too many problems. I was able to decrease to 5mg using the 2.5mg and 1mg tabs. I'm lucky because I have them both on repeat. The 2.5mg are coated but the 1mg are not, I don't know if they do coated 1mg Good luck with everything xx
They do, do 1 mg coated, they don’t advertise it because they are expensive, but I eventually got a supply. We have particular justification for them - tapering and gut sensitivity.
I don’t have any advice except to say good luck Jane. I too have got on better with coated pred and had no stomach issues - a blessing on top of other pred side effects.
I had plain pred + PPI on 60 mg at the start for 8 days then coated afterwards. I was prescribed a PPI at one point with coated but never took it. I’d had a stomach issues a few years ago, colonoscopies, polyps removed. Since being on pred, improving my diet (being retired helps - no rushing around), I’ve had no issues so far. I realise things could develop the longer I’m on it. I do hope things go according to plan for you. This disease is a mystery and we all seem to respond differently to the treatment for it.
The last time I saw a GP she said I had IBS. It felt like a very casual diagnosis. It doesn’t seem to be stress related, unlike my son’s, he gets an attack with a pending ordeal. SIBO sounds more like the symptoms I experience and my abdominal pain is low down in the appendix area. Thank you for your input as ever ( I meant to say).
My consultant niece says that IBS is a general term and that more tests are required to find out the cause of the symptoms. Just adding this to the mix!
congratulations on your test results. I was lucky enough to have gods results from mine not long ago. Just a bit of advice, even though adrenal glands are working they probably are not ready to handle an emergency or very stressful situation. Last week I had an attack of diverticulitis that presented differently than my first so it was overlooked for a few days. Anyways a second trip into ER found it and while there I went into adrenal crisis . At first they thought it was sepsis because of my blood pressure dropping 68/37 but an alert ER dr figured it out and pumped me with hydrocortisone. It took a few days for my blood pressure to even out in the normal range. He explained while test had shown adrenals were working they were not able to handle a big emergency. Good to know now.
I also just got a message from my gastroenterologist that my original small area of diverticulosis which was in the sigmoid area is now my whole colon and I need to come in this week and discuss this.
I had been awaiting your results with interest SJ, and following your posts as we have some common ground. Your results are worth celebrating and give myself and others who have been on pred for years, some hope (although I recognize we are all different).
I did look up the symptoms of both pred withdrawal and adrenal insufficiency and to make things even more confusing they do overlap somewhat. At least, as you’ve said in another post, the Synacthen test results help rule out some causation.
Diverticulitis can also present with symptoms similar to yours, however mine did not continue long-term and responded well to the 2 types of antibiotics (that coincidentally that Songbird69 took for SIBO). Have you taken abx for a diverticulitis flare, and if so, how did you respond? I also had a fever and raised inflammatory markers whilst having a diverticulitis flare which disappeared along with the pain, once treatment was started. I am aware that on-boarding Actemra can cause gut issues as can long-term steroids. Kendrew’s response was also interesting though…I’d be curious to know if her sister has her symptoms on an ongoing basis though.
My guess would be to rule out adrenal insufficiency (for the most part) and ongoing diverticulitis as the culprit causing your awful symptoms. Pred withdrawal can cause fatigue, weakness, nausea, lack of appetite, body aches and lightheadedness (irritability/mood swings too). Not sure that accounts for all of your ongoing symptoms as you haven’t actually lowered your dose lately and given you’ve been at the same dose for some time, I’m not sure it is the cause either?!?
Moving forward with your taper I’d be inclined to taper using your coated pred and combine one 2.5mg + two 1mg tablets = 4.5mg dose, and us the slow tapering schedule. As you’ve said, you have been at 5mg some time now, so your body may protest if you try and drop a full mg down to 4mg. I make this recommendation not being a endo (who is more experienced with further spurring your adrenal system).
Lastly I really feel for you SJ! It’s been a long haul trying to get a diagnosis and some relief from the awful symptoms you are experiencing. You have been the subject of many diagnostic tests without any symptom relief which is both frustrating and tiresome. You are truly deserving of the recent good news, but also a diagnosis and treatment to feel better. We are here for you along the way. Please let us know how you make out.
That is such good new for you, even better when it is unexpected. It also gives hope to others that the adrenals can recover after many years of being asleep. Keeping fingers crossed for you that the taper is not too unbearable.
Hi Sheffield Jane, I'm coming up 4 years on pred, and have similar problems with withdrawal symptoms, yo yoing during covid due to unavailability of rheumatologist appointments, stress with a sick husband and not really knowing what i was doing. Then my husband's health deteriorated last November and had to have a second brain tumour operation in December. I had a are up then and GP put me back to 20mg for 1 week, then 15mg for 2 weeks then 10mg a d I stayed on that for 6 weeks due to husband passing away and shifting house a week after his funeral. My whole world turned upside down. I have just started tapering again using DLs slow taper, my new rheumatologist wanted me to go down 1mg per month, then alternate days on new dose, but I explained about my withdrawal symptoms and he agreed to the slow taper. Debilitating tiredness, sore thighs, headaches and generally feeling unwell. I'm in to week 3 of DLs slow taper and feeling reasonably OK to date. I've got to get in touch with rheumatologist immediately if I become unwell, so keeping my fingers crossed I'll have better results this time, I'll be down to 9.5 in 2 weeks. I wish you luck with your taper and hope you have success. We don't have coated pred underc20mg tabs, so mine are the ordinary tablets. I also suffer from sore hamstrings which is a pain literally. Good luck. Janis
You have been through so much Janis, my heart goes out to you. I am so sorry that you lost your husband after a period of great anxiety and stress. You are a brave inspiration. Thank you for taking the trouble to share. Sending you a big warm hug and wishes for a happy healthy future. ❣️
Thank you, and I do hope you have success with your taper and other health problems, it's so hard to taper without all the additional pain and suffering added to the mix. Good luck. Janis
That is such good news about your adrenal glands, one of the hurdles to recovery overcome.
The Rheumatologist that I saw recently advised me to taper from 7-6 mg over 6 weeks and although I think he is an idiot I am giving it a go. Since being stuck at 8mg for almost four years I have since crept along at snails pace of 1/2 mg at a time. It’s nerve wracking, and we all know that anxiety is the food of PMR. But I feel I must at least try his programme, I guess that’s probably what you should do. Best wishes, Chrissie 😀
Thank you Chrissie, these were my thoughts too. However, I felt really unwell on my first try on 4 mgs, caved in and took 1 mg of uncoated Pred and was restored within half an hour. I am going to listen to the veterans I think and creep along with tiny drops. The Endocrinologist knows what he sees under a microscope and in medical text books, but he doesn’t know how it feels.
Very interested in where you are in your journey sorry I can’t offer any experience of going below 5 mg but have an app. with my Rheumatologist next week who wants to discuss coming off 5 mg of Prednisolone as my Synacthen test results were in normal range , not what he was expecting.
I still have aches and pains in particular my ribs and upper mid back muscles but very manageable It’s really hard to distinguish between PMR pain and Prednisolone side effects.
I will follow your progress with interest and wish you luck my Dr advocates alternate 1/2 mg per month reduction , 5mg then 4.5mg alternate days for a month and reduce 1/2mg if OK for the next month .
You know your own body , hopefully you and your Dr can come up with a plan your comfortable with .
Just because your SYNACTHEN test was OK doesn't provide answers about 2 other factors.
One - obviously - is the PMR/GCA and 5mg is a pretty hefty dose in the PMR world, even 1/2mg a day can be plenty to keep the inflammation at bay,
The other is that the synacthen test only shows if your adrenal glands are CAPABLE of producing cortisol when given a hefty chemical wack. It doesn't show that they are doing so reliably day to day and under all circumstances - there is a whole range of other factors involved that have to be in sync and on the ball for that to happen.
Any doctor who wants a long term steroid patient to stop pred at 5mg solely on the basis of a synacthen test is being a bit daft! You can certainly start to reduce the dose slowly but you should have been trying that anyway. But you would be crazy (IMHO at least) if you tried to stop all at once.
Sorry I didn’t make that clear he has me on a slow taper at the moment and as I have mentioned in a previous post considering swooping me to Hydrocortisone not stopping cold Turkey .
Got a bit full of myself as doing so well on 5.5mg so dropped to 5 mg after 10 days …. Bad idea so back to 5.5mg . My husband is staggered at how much difference 1/2mg can make .
Will listen to the Dr’s plan but my feeling is to continue on Pred with a very slow taper .
HC really doesn't manage PMR anything like as well as pred and while I doubt an endo would see it that way, the rheumy should always have that in mind when considering changes in medication. I don;t know anyone who found HC was a brilliant option for PMR
Good luck SJ. I tried the alternate days when I read about it on here....for a week!!! I realised that over that week I'd actually dropped 3½mg of pred. That's an awful lot and my body was not impressed. So I went back to dropping ½mg one day a week and then 2 days the next week etc.
I used it in the early days for PMR - for me the antiinflammatory effect lasts well over 36 hours and it was fine. But I had some spurious GCA symptoms and was told to increase from 10 to 15mg and take it daily. And never gone back.
I find this thread so interesting. I’m stuck at 5 mg of pred as I haven’t felt well enough after just finishing another 10 day bout of cipro and flagyl for yet another diverticulitis attack. Also had acute low back disc derangement (bulge) prior to diverticulitis. I have been on pred and mtx for 6 years and PPI’s too. So tough to sort out what is PMR and OA and adrenals and symptoms secondary to side effects of meds. All this to say we share some common ground and look forward to yours and anybody else’s thoughts and strategies moving forward. Take care and good luck.
Do you like Kedgeree? I have found it to be about the best food for my diverticula. White rice, white fish and boiled eggs basically. ( very finely chopped onion, a little curry powder, a little lemon juice and cream for flavour, to my surprise).No issues and nourishing. Small portions. Some things I simply can’t have. It is hard to work out what particular ailment is causing the problems. Painkillers ease everything except PMR pain. Definitely a dead slow taper, someone said they got down by cutting their tablets into quarters. You might feel more confident if you have a good Synacthen test result. I do.
Thats really encouraging, especially as you have been on prednisolone for the same number of years as me, although I have never been on 5 mg long without a flare. I have to get off it because I have developed Avascular Necrosis of the hip. Best wishes for continued tapering.
This is exactly what happened to me, I too was surprised and delighted! I am now down to 3 mgs doing just what you are being advised to do. I know now that a lot af my ‘pain’ is due to osteoarthritis and am waiting for a hip replacement. ( goodness knows how long that will be!) Keep going, hopefully we are on the homestretch!!!😊❤️
5 mg of prednisone is equivalent to 20 mg of hydrocortisone, and is currently replacing your body's normal production of cortisone. Most folks who taper off pred do better taping off with HC, as it is easier to adjust the dosage in baby steps. But you have to take it three times a day - morning, midday and evening - because it does not stay in your body as long as prednisone.
It took me nine months to taper from 20 HC to zero. Many of the symptoms you describe are pred withdrawal symptoms - nausea, headache, backache (called flank pain, it's where your adrenals are located mid back), low blood pressure, hypoglycemia, weakness and exhaustion. It's frankly pretty miserable, but can be done. The first 15 HC - or in your case, from 5 pred down to 1.25 pred or so - usually goes relatively smoothly, according to medical guidelines. But many many people have a hard time getting to zero from 1.25 pred. At that point you really should switch to HC and go very very slowly down. Frankly it's a yo-yo experience , good days and bad days, but hang in there! It's worth it!
The trouble is that the pred is also being used to manage the PMR pain and other symptoms - which HC doesn't do as effectively. Switching to HC doesn't work well for long term PMR patients
This is a clear explanation of the HC and Prednisolone taper that my Rheumatologist is considering but I am a little afraid of , better the devil you know and all that .
Your description of the Pred withdrawal symptoms are exactly what I have from time to time , so difficult to know what’s PMR and what’s Prednisolone . Taking 5.5 mg at the moment with some of these symptoms which are manageable and not really stopping g me from doing things so rightly or wrongly I press on hoping they will settle .
Hi Jane, great to read of your good news this morning, something encouraging at last! I am, like others, wary of a 1mg drop, even alternatively. I read that you can't cut coated, but there seems to be another way with 2.5 and 1 mg tabs. Go with that if you can. I'm the one who was dropping by 0.25mgs, and taking it 4 weekly with each reduction. So far the tortoise 🐢 is beating the hare! I'll be thinking of you as you proceed, and sending warm hugs and flowers 💐 from Downunder.
I think your method is the most likely to work. The flowers and hugs are very welcome. Returning the hope and affection. 🌼🤗. I am coming down under for Christmas,Coffs Harbour, Urunga, staying right by a lagoon.🧑🏻🎄😎
I sure hope the alternating between the doses works for you. I have never been tested for adrenal function. I know pred can impact that long term. I have been on pred for one year now and my highest dose was 10mgs for a while. Now on 5mgs due to a stomach virus causing a flair. Hope I can get back to 1.5mgs over time again. Has anyone experienced increased blood sugar levels or diabetes from prolonged pred? I could not take methotrexate nor hydroxychloroquine well and am now trying low dose naltrexone. We will see. I want off pred as my skin is being impacted and who knows about my bones!
I did experience steroid induced raised sugar levels and borderline Diabetes 2 that has now settled as I lowered my Pred dose. It is a well known adverse effect of Prednisalone.
I chose to read your post because you're familiar to me. I'm eager to hear how you are at this point. I think you may find my experience interesting and a tad familiar. I have GCA -diagnosed in Feb. 2018
While at a routine Neuro-Ophthalmologist appointment to check the arteries behind my eyes six weeks ago, he , in deep earnest, told me how knowledgeable he was about GCA and understood prednisone's protective qualities and its dangers, too. He then suggested I try alternate day dosing of Prednisone. I was on 4.5 mg. and have been stuck there for awhile.
I felt hopeful. I think that is why, in that moment, I totally -forgot to remember- my personal experience with tapering and agreed. On the morrow, I skipped my 4.5 mg and at about 2 pm felt tired, confused, and had some buzzing sensations in my scalp. It was at this point I decided to connect with my GCA specialist- who I trust - and tell him the whole story and ask for his thoughts. He answered me within an hour: " Take your prednisone. You haven't been able to taper my as much as .5 mg without problems. Additionally, the only study done on the efficacy of alternate day dosing in GCA patients showed that while it did reduce prednisone side effects--it did not sustain remission of the disease. "
In my rather foggy brained condition--I reasoned that it was too late in the day to swallow the whole dose of prednisone, so I took 3 mg. and it did level me out . Went to bed that night and awoke at 3:30 am by a sensation of being lifted high on a wave and vomiting violently. repeated several times....I told my husband to get me some prednisone. I got 2 mg down and slept upright until morning.
I now had hives covering my trunk, arms, and legs. This was a Saturday, so I called the doctors after hours line and was told to take 20 mg of pred daily until the hives are gone, drop to 15 for three days, drop to 10, 8, 6 and 5
I also have had a ACTH stim and it showed my pituitary and adrenal gland(had one removed)
are able to do the whats needed. The Specialist and endocrinologist have handed the responsibility of tapering to me now because I have to decide what I CAN DO.
I have started shaving those little white prednisone tablets down--just about--I am trying to settle in at 4.25 mg. Which means that I cut a one mg into four pieces and and take four whole whole ones plus a fourth of the other. I alternate doses for two weeks then stick to the lower dose until I've leveled out again. I think I will make it this time. My goal is 3 mg. by the middle of October.
I have a good relationship with the pharmacist here. She said," there is no cell in the body that prednisone does not touch. It will be hard to convince your brain to do without it. Your CNS will scream for it, and it will take a longer time than you wish it to. Go slow. Slower, now that your below 5 mg. "
That's what I'm doing. I do get anxious and uptight, and sometimes what you call the niggles....mild headache and abdominal spasms....weird...but it is a thing listed on the NIH under prednisone withdrawal symptoms. I discovered that a little zofran ( do you have that in the UK?) relaxes my gut and eases nausea. I am always trying to untangle tapering symptoms from possible flaring. Its a hard--isn't it.
I have found black tea helps me power up halfway through the day. I'm finding things that help me through. I wanted to get on here again to see if anyone else was on a journey that resembled mine, and I thought you may be.
Eager to hear from you and how you've fared. Blurry
Have they checked your natural ACTH production? Because the ACTH stimulation test doesn't include that - the ACTH stimulation is using synthetic ACTH, that is where the name comes from. Whether the pituitary is producing ACTH appropriately and consistently is another matter, other tests,
As for the neuro-opthalmologists claimed knowledge of pred - hmmmm. Wonder how many patient THEY have made very unwell!!!
Headache and abdominal problems aren't just signs of steroid withdrawal - they are symptoms of adrenal insufficiency and may be symptoms of an adrenal crisis.
I see an endocrinologist. It was she who ordered the ACTH Stim test.
She called me today to say that she is unaware of any further test available for checking natural ACTH production throughout the day. It is her belief that the test I had showed a good baseline level of cortisol production, and the two subsequent blood draws after the ACTH injection were very good as well. In her mind--we know what we need to know and there isn't any way to learn more.
I am in the US....I wonder if that's the difference. I will ask my other doctors about this however. I'm not giving up.
Mine (Endo) only used the term Synacthen - it seems to be a similar test, maybe a longer wait , before the blood test, with the Synacthen Test. Excuse the blabber, middle of the night., 😴. He seemed pretty on the job to me.
The test shows the adrenals are capable of producing cortisol on their own and reacting to a kick - but it doesn't show that that is happening consistently all day every day in response to need. It WILL settle down eventually as the materials are there. Patience.
I tried to explain this test. Three samples were taken. Baseline/ get the ACTH injection/ blood test thirty minutes later/ another blood test an hour after that.
That is a short synacthen test and is only measuring a standardised response to an amount of artificial ACTH. Not what the body does naturally through the day.
Interesting and familiar Bleary. Life got in the way of the necessary self absorption ( family demands) but back on track now I think. Slow taper (half mgs) and the gentle introduction of gentle land and water based exercise, a physio and a 12 week programme of bespoke gym work. There are times when I feel more ill and desolate than ever before. I am however, determined to get clear of this hump.
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ADVICE REQUEST POST SYNACTHEN TEST
Synacthen test
Following on from synacthen test.....
