I had a specialty lab test done through a holistic doc office. I saw one of the nurse practitioners and I was not given much help. My regular NP was away. These labs are more. explicit then the traditional , I believe but maybe I would of got them from an endocrinologist too.
My pregnenalone is 5.5 with normal being 7 - 1.88. DHEA -sulphate 4.51 with normal being 25.9-460.2. This appears very bad to me.
She did nothing. I was very tired and stressed before appt and didn’t question her more. I left with nothing. I told her I am going back on Actemra tomorrow, after being off a yr and she said she will retest me after Actemra. I don’t see how the Actemra will get my adrenals better.
Is anyone on here that understands what I should go next. I’m feeling very sick in my nervous system. Lots of pain and fatigue.
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Actemra will help if it gets you off Cortisol ( Prednisone) more quickly. This stimulates your own Adrenals to begin to work. It may take a year for them to properly recover from zero Pred. There are no wonder cures I am afraid, just pacing and a healthy diet. Have you had nutrient levels like B12 and Vit D tested for any deficiencies. Winter gets us all down., unless you are in Florida or somewhere with that climate.
I live in Fl. How about 37 yrs of fibromyalgia with constant pain and depression before the GCA/PMR. Also, I have over the top stress from a 44 yr old step daughter and husband had a brain bleed a yr before I got the vasculitis. His body is fine but he gets things mixed up. I do not have his daughter in my house now but the demands she makes on us are horrible . He has no ability to understand not to enable her. we are sick . I feel like this is going to kill me and he keeps forgetting and then screams at me. I have nowhere to go. I am seeing a psychiatrist next week. I am working on getting Vit D up. The b complex give me headache. We are not rich enough to live apart.
I will feel better if I get help fir my depression and as long as I know I am not adrenal failure.
So you don’t think I need to see endocrinologist !
Sounds like you need more help than we can offer remotely. Is there any other family you can turn to to help you out with the situation? A clergyperson? Some support agency your doctor can refer you to? It sounds like your situation is unhealthy and won't help you to heal, that your husband also needs help and some therapy to learn how to deal with effects of what is, after all, a brain injury?
He won’t even see his PC I have no family or friends. I’m from Mass and I live in Fl for 37 yrs. just all gone because of death. My son had his own issues.
It’s ok. I have to see psychiatrist next week. I will start my injections tomorrow . Thank you for caring. I took the phone off the hook and I will try and delete messages before he sees them. .
Hello there, as has been said it all sounds very complex and so it may be quite difficult for anyone to fully help you in a few messages. However, on a general note, it sounds like your son and daughter in law have major problems that you are powerless to help with in your current situation. It may be that even with the greatest will and strongest body their situation may be intractable without certain changes coming from them. There can be times in life when you have to make a decision about whether you preserve your own body and sanity or go down the rabbit hole with someone else. An example is with drug addiction or severe mental health issues in families. These situations are awful because every fibre of our being says that we must protect our children, even when they are adults and even when they are abusive to you. With this kind of stress who knows what pains would be attributable. It is good you are going to get psychological support from someone who is unconnected, professional and unbiased.
I’m assuming you are below 4mg now. Your adrenal function will probably take a very long time to recover as is normal, but I suspect with the current life events your adrenal system is being asked to do too much. There is a ‘war on’ but your soldiers haven’t even been conscripted yet, so it is quite possible you’d be feeling the effects of adrenal crisis to varying degrees all the time. To my view as a lay person, an Endocrinologist may be best and they might give you some hydrocortisone for the time being . At least I’d want to see how you felt on this to clear the way for seeing what symptoms might be what. Is there a reason why an endocrinologist hasn’t been brought in at this stage.
Not my son that is the problem. I’m talking about a step daughter. This my husbands daughter. My son is wonderful and has a great job but it is starting to look like he may be going to have auto
Immune issues. Very important for me to state that because I raised an amazing son.
I am on 6 mgs prednisone. Last year on Actemra was down to 2 mgs prednisone.
I saw an endocrinologist a while back that tried the hydrocortisone and I felt worse. I would try a different one if I go .
Sorry, I parsed “step” as in-law for some reason and thought the husband was hers not yours. I hope your appointment helps you find measures for self preservation in a highly complex situation.
I too was wondering whether you are still on prednisone. I can't imagine that you have overcome PMR with all the stress you have in your life. Perhaps the pain and fatigue is not due to adrenal fatigue, but is due to uncontrolled PMR.
If your adrenal axis is still being suppressed by 6mg then it’s activity will read as low. Rather than fatigue as such, it just hasn’t been triggered yet.
At 6mg I wouldn't expect adrenals to be contributing much anyway. Pred replaces production of cortisol so tests won't show adrenals as doing that job yet.
I have had fibro for almost 20yrs. I haven't been tested but don't believe my adrenals impacted so they need help. Like snazzy says 6mg is probably just not enough support for the stress and perhaps a quick blast of pred for a few days might help as nuigini suggests. You can do a week and drop to 6mg again. To me adding existing med better than adding another, even alternative med, unless it really, really can't be helped. I wod be getting vit d checked and cbt is a must when dealing with such stress. Raising pred not the end of the world. I have increased by 5mg for 5 days to aid me and mop up any inflammation that's Making me feel terrible....and intense stress not in my life...
If I remember rightly , that is not a nutritional or herbal supplement that is advised to use with Steroids or certain antidepressants , it can affect their efficiency.
With many conditions going on , especially if you have intolerances , many herbal supplements should not be added to your delicate chemical balance without advice from Specialist not just a Nutritionist and its effects may need monitoring with blood tests.
Just double checked and Ashwaganda is not recommended for people with stomach upsets and certain intolerances as the wrong dose can cause diarrhea and vomiting.
It is also cited that it needs serious consideration and proper medical advice for any one with conditions like Lupus , RA , MS and anything that requires suppression of the immune system as it can increase your immunity response and reduce the effectiveness of your medication.
I had checked some years back but just wanted to remind myself as to why I chose not to try it.
Not sure if it can interact with your immunoglobulin issues or infusions , that would also need assessing.
You need to do what you feel works for you , but just thought I would pass it on .
The NP said I might want to use some specific items and I told her I was on the prednisone. So maybe I should play it safe and not. I will not discontinue vit c especially now with coronavirus.
Been there and even higher 3 times this year. Now I’m coming down and hope to not do that unless lifesaving. Three yrs is more then I want of this drug. The Actemra will allow me to feel better.
Have you had a Synacthen Test to test your Adrenal Function since being on 5 mg or lower Aleish?
This will help you know if you are having problems but your Doctor's may suggest that you wait a little longer to have it done until you are back on Actemra and have reduced Steroids a little further.
Have you had a check of your Vitamin D , Vitamin B complex , Iron , Folic Acid and Electrolytes with a blood test in the last year . These may show deficiencies that will add to your Fatigue and Pain.
What is your current treatment schedule for your Fibromyalgia ?
Have they done checks to see if this needs increasing , adjusting or changing, to something else ?
If not , much of your Pain and Fatigue can be coming from the Fibro and the Steroids will not be as effective on this. As you will know , Fibro and Chronic Pain Syndrome and Chronic Fatigue Syndrome are all commonly linked .
If you haven't had a full pain assessment recently to do with this part of your condition you do need one. See your Fibro or Pain Specialist as soon as you can.
You may also benefit from having a Stress Assessment and getting some help in relaxation or mindfulness from taking a CBT course or doing some talking therapy with a Specialist who also assesses your Occupational Home Needs and gives you Self Care and gadgets to help.
Have you got any other friends or family that you can rely on to help you with these things ?
You could also do with someone whom takes over the responsibility of dealing with your Step Daughter and her needs , you can request this help because of the way the Stress of this situation affects your health too , anything is worth trying , but she needs persuading to get proper Medical Help and you are neither Physically or Mentally strong enough at the moment to be able to do that alone.
If no Family or Friends are close do a bit of research into a local support group for Chronic Illness may well help too. Even a local Community group will help if you can take a deep breath , pick up the phone and ask for help.
Take care and I hope you get some more help soon xx
Step daughter is a 44 yr old woman with law and prison problems . Because of my husband enabling her and his distorted thinking there is nothing I can do. He gets a pension and social security and I get very little SS to live on. He also helps me and drives me.
The step daughter is in ct today and possibly will have to go back to jail . The situation that git her there is ridiculous. She was visiting a friend and a stupid verbal fight. Step daughter called police as things escalated and she was arrested and girl who she was visiting didn’t. I wasn’t there and I read the police report and thought it sounded like a sitcom. However, my step daughter is very difficult, to say the least. I do not allow her to live here for many reasons but as long as I’m married to my husband of 27 yrs she is part of the package. At 76 and quite unwell I cannot support myself.
I manage the fibro the same way I manage the vasculitis. Nutrition and same anti inflammatory diet. Between all the docs I already see and being so disabled and 76 that is all I can do to maintain. I plan on doing additional vit testing. I have CVID for which I get an 8 hr. gamaglobulin infusion monthly.
I have leaky gut, headaches almost daily for 37 yrs. no strength left to do what I do and could not do any more.
Thanks for all the tips. I am planning on checking levels again. I also have the MTHFR gene defect with a single defect if C67T. Also test positive for 4 molds . Had to them many years ago because my home is mold free. 16 yrs old and purchased new. I take bulletproof charcoal for the mold. I do use herbals for many issues. I just need some fine tuning when I get the step daughter out of our lives.
Hate to go in psychiatric meds but I do need something to get rid if the flight or fight with the constant chronic depression.
I sound like a mess but I somehow do manage to get my haircuts and wear nice cloths and makeup. When I can no longer look normal and good then it gets very scary. My goal is to get better and have some quality to life.
Don't forget most of the antidepressant drugs are used more commonly in Medicine these days as Pain Relief / Nerve Relaxant / Sleep medication for everything from Fibro to Urinary Issues. There is no stigma in them , or using opiates or anticonvulsants for your Fibromyalgic Pain if you require them it's a success of your own in getting the care you need if you need extra medications to control your conditions .
Taking more medication , the right medications is not a failure.
If you aren't on any drug or therapy treatment daily to deal with your Fibro you will be in constant Pain , even on Pred . The Actemra may help it , it's not talked about much in use with Fibro yet , but you probably need a full individual programme of drugs to help your Fibro whilst also coping with another Pain Condition. It's not an either /or they have to work on a specific combination.
I completely understand the exhaustion of trying to manage many chronic illnesses at once. There is nothing that makes you feel more ill than trying to get well . It can feel like a full time job when things are flaring up , and it's incredibly confusing at times to have to diagnose yourself each day as to which thing is causing you the most symptoms and needs an adaption or a drug to increase without a Doctor on hand 24/7 to help you.
Working more as partners with your GP helps ,and finding one with a open mind who is willing to listen to research you have that they don't have time to read themselves, is a blessing , when you find that GP.
Getting the Stress under control is as key as the diet and drug changes. There are triggers there in your Life that you can seem to find a way to avoid . Luckily your Step Daughter does not live with you . Show an interest but don't get involved . Have you heard the saying , " Not my Circus , Not my Monkeys" , take that advice . Your Step Daughter is your husband's Monkey , she's his problem keep out of the trouble she causes and maybe your Husband will do more to help her and less to enable her if he realises he won't get any support for his actions. You do not have to get involved , even if you listen to his complaints .
That Psychology and CBT training is invaluable with Fibro and Stress. Really commit to it , ask to be put on a Mindfulness ( MCBT) course , they are in groups an hour a time for a few months and really help with the Anxiety of dealing with Chronic Health. Ask the Specialist about meds at your appointment that will help with Fibro Pain , Sleep and Anxiety together . It will be worth the trial and error ( and odd setback if you have intolerances, I'll be honest ) to finally get something that helps you get a firmer hold on Everyday Life.
I will say I am actually impressed with how you and how you keep up. I haven't managed a hair do , a smear of make up, or a change into my nicest clothes except rarely in a few years. If you are still managing to do these positive things each day you are doing better than you may think. Grasp onto those Silver Linings , and those tiny daily achievements , because they really are precious and can give you the Positivity to get through.
Good luck and keep posting for support , not just in an emergency , sometimes just giving the forum an update of how you are doing once a month helps you get things clear in your mind , gets you a much needed virtual hug ,and sorts things in your head to add to your Symptom Diary , or to add questions to ask at your appointments .
The Depression and Pain get into a vicious circle as well , don't they , triggering worse symptoms in each other.
It's definitely worth asking about other medications to try that will help with the Mental Health and the Fibro , this in itself will reduce your Fatigue and the severity of side effect symptoms you have as you Taper Pred with Actemra.
After you reach a lower dose getting your Adrenal Function tested will be worth it.
As the Adrenal Phase if the Taper can cause added Fatigue and symptoms until your body has started to efficiently function in Adrenal Production and response again this can be the most tiring part of your treatment and cause more mood changes , so getting that extra help and monitoring for Fibro and Depression is really important for you if you want to improve how you can cope when you are in this phase.
CBT and Mindfulness may actually help you get past the Motivation barriers and Stress triggers and gradually help you to improve your ability to function each day , and this , in turn , will also help the Fatigue .
I have quit every ding fibro antidepressant combo pain pill like savella, Cymbalta and more. Then the stuff like Lyrica that can install 30 lbs in a flash and might help a wee in beginning. Seriosluy, been there and done all that fibro drugs they have to offer. Side effects kill me. Actually fibro was a walk in the park and I didn’t know that until I got the vasculitis. I’m unable to drive it cook it get out in my own with the vasculitis and use of prednisone .
I know once I’m off the prednisone and the stress levels diminish I will get better. I just need a good anti anxiety anti depression pill to try again. I actually save my meds because some are very expensive. I will bring a list to new shrink showing all I have tried. Maybe because my anxiety is not just from the disease this time, the medication will be more effective.
There are a number for you to try and if you specify the chronic headaches or migraines over the years as part of your Fibro symptoms , there are antidepressants and migraine drugs which are used for both Depression and Migraine / Fibro that the Psychiatrist may be able to prescribe for you.
They can take time to have an effect . It can be months and take trial and error with the side effects , starting from the minimum dose and working up to the amount recommended of the amount that you can manage to take before you feel like something is really benefitting you.
Weight gain , hair or skin changes can occur but with your changes in diet you may find this weight gain is less than you experienced before , and you may need to see if the emotional or physical impact of some weight gain is outweighed by the benefits of improving the Depression , Headaches and General Pain.
I will say that it took me at least 6 months of careful trial and error on some drugs before I got to a level that helped me Manage , so it is frustrating but does improve in time.
You also find that you may need a combo rather than always changing from one to another , this is were the Pain Specialists come into their own. Some drugs you also only use very short term for specific Flares in specific symptoms.
I have seven different pain medications on prescription but on a average day the maximum I may use is 2 plus OTT paracetamol. If I flare I may only have to add one specific drug in for a week to treat , get control and then be able to get over it quickly without it flaring up something else.
As my gp in a surprising moment for me on Monday said.... . Of course they trial drugs singly so there's often little really known about how drugs impact when they all get together.
Ordinarily one antidepressant may be fantastic. Mix it with other Western or alternative meds and it can make your head and body explode.
Testing at 6mg is still very unreliable - above 5mg is plenty to suppress adrenal production of cortisol so testing will suggest the adrenals aren't working. They shouldn't, the feedback system is to prevent there being an excess of corticosteroid in the body. Only reducing the pred dose very very slowly will persuade the HPA set-up to start to signal more corticosteroid is required and restart the production. It is much like your central heating boiler is stopped from producing more heat when there is a wood burning stove in the room where the thermostat is.
It really depends on whether your PMR is still active - it will require either enough pred or Actemra to manage it. Hydrocortisone MAY manage the PMR inflammation but the dose is greater and must be spread over the 24 hours to maintain symptom management. HC is felt to be more of a trigger to the adrenal function because its halflife in the body is short - which is why it doesn't manage the PMR symptoms so well. And then you have to consider the return of the adrenal function - Actemra won't help that, just the PMR symptoms allowing you to reduce the pred - which remains the only way of waking up the adrenal function. Fibro shouldn't affect the cortisol - that is probably entirely related to having been on pred.
You are under a lot of stress - and that means you need more corticosteroid and currently your body can't provide that boost. It's complex and probably only great patience and some support for you is going to get you to your journey's end.
I will be seeing a new rheumatologist but at same facility. I could follow current one to her new private practice.
I think it’s best to be looked at by a different doc and compare them. I got back on the Actemra today which is 13 months since I discontinued it. I was on for almost two years and had a stomach issue but doc felt the benefits outweigh it and so today was first shot.
I believe the PMR is active but not really sure because of the fibromyalgia and neck stenosis . The pain anesthesiologists wants to to do ablation on my neck but I feel it is not a good idea. Maybe all the stress is making me worse combined with the fibro and depression. Such a slippery slope I’m on.
Knowing all this, what do you think is long enough time to be on the 6 mgs. Prednisone. Obviously I will follow new doc instructions if I feel comfortable with them. I just don’t want her to bring me down too fast.
I absolutely wouldn't be persuaded to reduce more than 1mg per month - and that only if I felt OK. The lower you get the harder it is - and even with Actemra I know there are doctors who believe it doesn't take any major effect for up to a few months. There are also about half of patients for whom it doesn't get them entirely off pred, just to a much lower dose.
A basic rule we often quote is no step down should be more than 10% of the current dose - at 5mg that is 1/2mg. That isn't just for identifying the right dose for the PMR more accurately, it is also for your adrenals benefit and your comfort in terms of steroid withdrawal, your body adjusting to the new different dose. But the trials with Actemra were done with newly diagnosed patients, by the time they got to low doses of pred they hadn't been on pred for very long and that means adrenal recovery will be faster. Those of us who have been on pred for a long time will probably need more time. At these doses there is far less need to panic and push reductions, with or without Actemra.
When I was down to two mgs prednisone I was able to do so because I was on the Actemra. I also did the alternate day method. Like 6 mgs one day and 5 the next. Stayed a month and kept dosing down like that and it was good. Unfortunately , as stated I had to stop Actemra because my stomach was not right.
Hopefully this time I will reach my goal and be off the prednisone.
I’m usually amazed by the depth of knowledge, patience and emotional support beyond kindness that this forum offers, but in such a complex long-term case as this, I’m seriously impressed. Well done - we can all win through in the end, with support like this!
Along with PMRpro's comments, as far as I know the Actemra doesn't help restore adrenal function, so even a 1 mg per month reduction may be a bit fast as the dose gets closer to the zero mark. Slow and steady wins the race!
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