I am having a cortisol test on Monday carried out by the endocrinology team at Airedale hospital. I have CSS and managed to come off predisolone about four month ago after a very gradual tapering. My blood tests now show I have only half the natural body steroid cortisol that I should have so they are doing tests. I wondered if any else has had a similar test and what the outcome was - were they put on a different kind of steroid that is less harmful. My letter from the hospital advised me to come off my inhaler a week before the test - but I'm asthmatic so surely that can't be expected? I will question that with the department.
A second question I have is that my recent blood test showed my level of cholesterol was a bit high - 5.6. My consultant has recommended that my GP manage this risk as if I had diabetes(even though I dont). I Don't want to take statins unless I really have to and so I'm trying to manage my diet - although I must say its pretty healthy anyway to try & combat the weight gained through taking prednisolone and exercise - but again I exercise very regularly and would love to do even more but struggle due to nerve damage to my feet. Has anyone been successful in managing their level of cholesterol successfully? I've just come off predisolone so won't my body be adapting? I really don't want to take more pills with risks. Any advice appreciated
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Katie18
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There have been many new approaches/studies regarding cholesterol levels and their importance (or not). Some controversial stuff. In my experience, many GPs simply haven't read this expert information. If your doctors are concerned about your cholesterol levels, they should also check your triglyceride levels and do a more detailed test of the good (HDL) and the bad (LDL) cholesterol ratio before they throw statins or other drugs at it.
Hi MrsCaroll they have included that in the test and my ratios of good and bad are not good either I'm told
Hi Katie,
The blood test is a short syncathen test and if you are deficient they use a type of pred called fludrocortisone or hydrocortisone which you then take several times a day.
Pred is known to raise cholesterol so it may fall further.
Am I right in thinking you have EGPA? If so I hope you have had your cardiac risk assessed as 40% of patients with EGPA can have cardiac problems which can present without symptoms.
My adrenals stopped functioning after high dose prednisolone.It is serious! I felt so Ill and had a blood test and result was very low blood glucose , which initiated a synacthen test. I have since stayed on 5mg prednisolone am and 2.5 mg prednisolone pm.
I also carry s hydrocortisone injection kit at all times in case of accident or Vomiting .
Just had another test after 1yr and result is my adrenals are still not functioning . I would love to lower the prednisolone, but I feel lucky there is the expertise and knowledge these days to keep me alive.
Thank you Keyes I have Churg Strauss - is EGPA the new name? I had heart checks in the v early days. I think that is why my consultant is monitoring my cholesterol closely due to a risk of heart problems
Sorry to hear about your problems making enough natural steroid....I have the same result as the result of high doses when I was first diagnosed and cannot get below 5mg prednisolone a day. I also had a synacthen test that confirmed why I felt so awful when I finally worked down to 4mg and will be very interested to hear if there is any alternative to the horrid little pill that I take each morning.
Also my cholesterol doubled about ten years ago, before my Vasculitis diagnosis, and I had a fight to persuade my GP not to give me statins. He was more interested in the pills, I was more interested in the reason why my level had gone from 4.1 to 7.6 ... it turned out that it was because my thyroid was slowing down and I now take levothyroxine every day. It might be worth asking about that? Though whether that pill is better or worse than a statin, I've not been able to work out!
If I had the choice it would be the levo every time! It is a replacement therapy for a dodgy natural function - no different from HRT or insulin when you are diabetic.
Statins are artificial and doing something I personally regard as unnatural. Did you know that even the manufacturers say they shouldn't be used in over 70s? And the age is falling - there is a reason for our bodies increasing the cholesterol level to some extent as we age. Part of it is to preserve neural function - hence the putative link to dementia.
As for a replacement for the "horrid little pill I take each morning" - either you take pred once a day or you take hydrocortisone twice a day. Learn to love your pred - as I do
Thank you...glad to know that. In fact I've never really had any problems with the levo, though I've only recently discovered that it shouldn't be taken with a cup of tea in the morning.
Hi Katie. I've been on Prednisolne since I was diagnosed in 2005. I had a Strachen test which showed I wasn't making enough on my own cortisol due to long term steroid use. My consultant tried me on Hydrocortisone instead of the Prednisolone which sadly did not work. I was ok for 2 weeks then gradually got increased joint and muscle pain and become very unwell so I'm back on 5mg Prenisolone and have been told I will have to continue with them for life.
I still haven't given up hope of reducing the Pred like I have heard others have by doing this very gradually. I will let my body recover first.
I'm on a statin and quite concerned since I have read what others have said about it. The reason why I agreed to take it was to reduce the risk of a stroke. I must look into it further.
Hi i have GPA diagnosed 2013 after years of being unwell. I have been on the usual medications including Rituximab, i had been on prednisolone for 4 years and wanted to come off them due to the side effects. I tapered them and stopped completely for 1 month in January. I was practically bed bound with joint pains so i went back on pred at 4mg and was better. I still wanted to stop the pred because of side effects, the weight gain, Basal Cell Carcinoma, Cataracts. I feel at 57 i want a better quality of life.
I was referred to an Endocrinologist locally for a short synacthen test i stopped taking the pred and my steroid inhaler for a few days prior to the test, i was given another medication to cover me at that time. When you have the test they don't want you to have had any steroids as it can alter the results. I was started on Hydrocortisone 20mg which was to be reduced by 1 mg per week over 4 months. I managed to get down to 14 mg and became bedridden due to total fatigue nausea, joint pain. I called the hospital as i hadn't had the results of the test and was told that my Synacthen test result was very low, but not the actual figure.
To date and after numerous calls i still do not have a result or follow up appointment nor has my GP. I am fortunate to know about Adrenal function as my mother has had Addisons for 20 years she had a crisis caused by adrenal failure. I put myself back on to 20mg of the hydrocortisone. i improved slightly but i am really suffering from joint pain, pain in joints which have not been bothering me before due to the lack of Prednisolone, the hydrocortisone does not have anti inflammatory effect. I have not been able to control my weight gain very well, due to joint pain which stops me from walking very far. I have started to swim, which was working well, but this latest bout of pain has stopped that for the time being. I will start again as soon as possible. Swimming is the best form of exercise for joint pain. My weight gain is caused not only by steroids, but Insulin too.
I am far worse off now and i want to go back on pred. I was told by the consultant that i had secondary Addison's due to the high dose of steroids and length of time i was taking them. As yet i don't know where i am going from here.
I too have been told my cholesterol is high (6.9 in April this year) but i don't want to take statins. I have also got type 2 diabetes, now on insulin, still not controlled very well due to other medications.
I take Levothyroxine as i had most of my thyroid removed years ago and now am a little under active.
I believe that my problems all stem from having undiagnosed Ulcerative Colitis for many years, which resulted in an emergency total colectomy and permanent Ileostomy in 1990.
I am also on life long warfarin due to blood clots in my lungs and having protein s deficiency.
hi may Thanks for your reply and Im sorry you are struggling with various medications and health problems. I'll see what my test shows on monday & tgen decide what to do next.
When I was first diagnosed with EGPA 11 years ago, my cholesterol started going up. Since I had heart involvement initially, I was also seeing a cardiologist. He wanted to put me on statins as I got to 7.6 but since I was tapering the pred I argued that we should wait. And then 3 months later, the cholesterol was 6.7. After that it kept returning to a healthy normal. I eventually got off pred entirely after about 3 years. But I've been on cellcept [mycophenalate] continuously [it's an immune suppressant].
So, I guess the moral of the story is to see if the doctor is willing to wait and retest you in 3 months. Continue to exercise - I found that swimming works really well for me. There's no pressure on the joints, and then, if you're lucky, a dip in a hot tub afterward is fabulous.
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