Hi all
I've been on split dose of prednisone for 5 yrs and now down to 3mg. I've found for past several years being exhausted and finally got my rhumitologist to test my cortisol levels with are way lower than normal. Has anyone had this happen and what did they perscribe?
Look forward to hearing back from you.
For years I was on the other Site but with moving to our forever home and city we are no longer on Georgian Bay Canada, now in London Ontario.
Many thanks
My cortisol levels were found to be very low following a Synacthen Test, I was on 5 mgs of Pred. When my test was repeated at 3 mgs the levels had normalised. I am afraid that I still experience fatigue. It can take a full year for the Adrenal System to recover. Good luck!
It depends what dose you were on when they tested. If it was at 3mg they need to decide whether you need to keep challenging your adrenal glands by doing nothing about it, keep reducing very slowly, hoping the persistent low dose will make your adrenal axis kick in. Or decide that it won’t recover or that you are too low to leave it and give you a bit of help with a less potent steroid than Pred. My Synacthen test results at 4mg weren’t very special but by 1.5mg it was pretty good. I felt rubbish to varying degrees for most of the time from 7mg to 1mg. Eventually it came out good and I stopped feeling tired all the time. Sometimes I felt ok and then after a reduction or some extra activity would increase the demand for cortisol more than I could produce. I really reined in my life for a bit because I was determined to give them a chance.
They were completely within the normal range at 3 mgs.
hi Wizards. I too am in the London area. Rheumatologist is also there. When I asked if he did Synacthen tests to check adrenal function he responded with a flat no. My doctor, while charming and listens , is less than open to modifying his procedures. Wondering if you are willing to share you rheumy’s name. mine is Michael Arnold, in Arva…north end of London.
Hi there,Love to meet you if in London.
We moved to London 4yrs ago this July but I never transferred to a new rhumitologist because it took me a good year to train mine. She is in Scarborough and I'm serious about training her. I brought a witness with me for over a year.
After that she realized I knew a whole lot to the point she would ask me about THC AND CBD prior to it being legalized.
I found being on CBD was an absolute benefit for reducing as well just counteracting the prednisone and the mood swings.
I got my medical prescription from my GP who is awesome. However I know see a specialist in London for my prescription for THC and CBD. I still haven't found a GP in London so I need help with that.
My cousin in London has a good Rheumatologist I'll try and get his name.
I just looked it up I've had PMR since 2016 and been slowly reducing and really taking my time after each reduction. At 10mg I was there for about 1 yr and from then on it's been slow and steady but I've never had a flair up.
My inflammation rates at time of testing cortisol were perfect everything very low. I keep a very close eye on all my tests.
Oh aye - who in Scabs? That might be useful if I return to the UK. My daughter works at Scabs A&E.
sorry PRO…WE ARE TALKING scarborough , ontario. and london, ontario. too far for your commute. 😜
Hahahahahaha - in that case - I'll stick with my super guy in northern Italy!!!!!
might need his/ her name if willing to share. heading to Italy end of March for 3 months. albeit i am in Liguria on the coast you in the north as i recall. so a trek. but sometimes worthwhile if things go amuck.
thanks Wizard…lots to share and and talk about. would love to meet but life chaotic right now…arranging for my son’s move in London, awaiting new refrigerator and mattress all delayed because of supply chain disruptions, communicating with and finalizing info for house/pet sitter as I after 3 years will be leaving for Italy end of March. not returning until end of June. so perhaps a meet up in the summer. I am in Port Stanley ( no Pro…not in the Falklands) .
Love to get together when you return. We leave this week to the Caribbean and not back till end of April. By that time I'll be opening the pool.The one thing PMR hasn't taken away is my ability to dive. Husband and I love diving and go away to several destinations.
Enjoy Italy and wave to pmr pro.
Hi Wizards. I too am near London (town of Tillsonburg). I’d love to connect with you and icu2 when you both return from your respective vacations. No plans here for travel to Italy or the Caribbean, but I’ll be around when you return. Small world!! I’ve been seeking out local folks with PMR/GCA for some time now.
I too have benefitted from both THC and CBD for help with sleep and mood. I’m thankful to be in Canada where this is an option.
I’d be sticking with a good “trained” rheumy too given my terrible first experience right after I was diagnosed. I’m fortunate to have a new rheumy now (from London) who meets my needs and who is willing to work with me as a team.
I do hope you sort out your fatigue and adrenal issues…2 years is a long time to feel like crap!
Enjoy your time in the warm weather and hope to connect with you and icu2 in the future.
I just realized your in Port Stanley. I've been going there for over 30 years. They use to have an art festival which was lovely.
Some great restaurants as well.
Lucky you to live inn such a picturesque town.
I miss Georgian Bay and the water but our back yard in the summer is like a resort so makes up for it. Lol
Enjoy your trip and be safe.
I too am very close to London (in town of Tillsonburg). My first rheumy was also in the Arva clinic (Maeve Gamble). She was horrible!! I only attended 3 appointments and stopped going after she accused me of lying about putting up my own pred dose. For the next 3 years I was under the supervision of my wonderful GP.
Unfortunately I got stuck at 9mg of pred for about 2 years so I now see a new rheumy in London. She is the head of the rheumatology department at one of the London Health Sciences hospitals and her name is Dr P. Basharat. At first I seemed to talk more with her interns than her, but my phone appointment with her yesterday was excellent. She was open to listening to my suggestions, she answered all my questions, and was very encouraging as I try Methotrexate as a steroid sparer to lower my daily dose.
Hope this helps, and I would also be interested in meeting up after your return back from Italy if you’re interested. Port Stanley area is lovely.
It looks like the 3 of us should meet.I can tell you years ago I had problems even at very high doses to reduce until I started on CBD.
You should try much better for you than methotrexate which is as deadly as prednisone.
My brother-in-law is from Tillsonburg.
Have you ever gone to Cortland to Cortland Bakery?
Can’t for the 3 of us to meet. You can send me a private message on here to exchange contact info.
I have taken CBD throughout my PMR journey however it only helps to a certain extent. I was stuck at 9mg for two years trying to taper down by 1/2mg four times without success.
Yes, the Courtland bakery goods are divine, but I do try to limit my sugar and carbs. Right now they are selling Polish donuts called Paczkis with all types of fillings for the Easter season and we usually indulge at least once. Worth the trip to Courtland!
My husband was at Cortland yesterday with his 92 yr old mom and yes he brought me back one. I make them every Easter and Cortlands are just as good.How do you private message on this site?
Click/tap on the Chat ikon on the top line (the word chat with the paper plane next to it), At the top right of the page that comes up is a blue box saying Compose - click on that. It's the sam e as writing a post - but you dictate who sees it, You can add multiple names. As you type the name you want to send it to, a choice box comes up to select the name which then appears on the next line - and then you add another name in the top line in the same way until everyone is included.
Hi ICUNever saw your post so I apologize. I would live to meet up some time, you can contact me at XXX [email address removed by admin - please contact each other via message function - thank you, Fran]
As for rhumitologist I've fired her but she is in Scarborough and my Endicronologist is also there.
I've been in London for 4 yrs and haven't found a GP yet but he has referred me to your rhumitologist. I wanted Thompsons because my cousin and Mother-In-Law go to him and love him but Sent to Arnold. Oh well😥.
I already have an endocrinologist wand I'm have the battery of test in September when I've stabilized at 1mg.
Does Arnold give you a supply of crp test between appointments?
I fired my rhumitologist because she started yelling at me that I could be dead any minute, very unprofessional.
Send me an email
Please don’t put your email address on the open forum -if you want to exchange personal information use the chat/private message facility.
Don't know how to do that
Easiest way is to tap icu2 name just above your message to them- takes you to their profile page, then select “Message” -takes to new page -and then write want you want there.
..once that’s fine, delete your email on here-for your own safety 😊
See also chat icon top of screen -but that way you need to select compose and type in persons name…. first way simpler as name already appears
Thank you, now trying to find that email lol
See it’s done…..
I developed adrenal insufficiency from long term pred use. I now take hydrocortisone everyday. And despite this the utter exhaustion is incomprehensible. It is going to be a life long problem for me at least.
I'm so sorry to hear that. I hope to see an endocrinologist by May. I've been told get totally off prednisone if I can which I think I can do, I'm only at 3mg and it could take 1-2 years but they will slowly return. I know some people this doesn't happen.
Luckily at present I don't present the features of failure such as extreme weight loss and no appetite so I'm hopeful.
Please take care of yourself and thank you for replying.
Sorry for the delay. I've been under 5mg for over a year and tested at 2mg and cortisol Extremely low. Endocrinologist wants me to get to 1mg which I'm at as of now so I'll stabilize and do his tests in September like he wants. He wants me at 0 by Jan. We'll see but should get to .5mg no problem.
I know my inflammation is high because I've been dealing with neck pain since March due to to much diving and my chiropractor made it worse.
Tomorrow I go for massage and if that doesn't work acupuncture before my GP appointment. That way I can say I've tried everything. GP is great and if still bad he'll do an MRI.
I think it will just take time for adrenals, it's been 7 yrs. Never had a flare but had problems in beginning in reducing and I stayed
at 10mg for almost 1 yr.
So for all of you just take it slow and stabilize between drops. I constantly took 2-3 months min. Between tappers.
Not a Race. My rhumitologist thought I'd be at 5mg for life.
Good luck to all
Adrenal insufficiency 
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Adrenal insufficiency 
Adrenal insufficiency?
Adrenal Insufficiency 
