Stopped Prednisolone and started Hydrocortisone.

[billydownunder]

Well, have been on Hydro for 4 weeks now........20 Mg morning, 10 Mg at 2 Pm.

4 weeks to go , then a blood test for Cortisol , acth , and u & e...........then back to

the Endo to see what comes next regarding my adrenal deficiency.......(or what

ever else is causing my problems............).....

So, how do i feel about the Hydro ?.........PMR wise , nothing new, (my Rheumy

did say i might be over it.. heres hoping )...........no new tummy upset so far..........

Which was more than i could say for MTX and a few other things i tried in the past.

However, some of the symptoms pre Hydro are getting worse........................

Constant headache, Tinnitus and the worst is insomnia........................

But, these may have gotten worse regardless , hard to say..................

Something to think about the change to Hydro..........just say my PMR got worse,

would i just up the dose (at the correct percentage ) like happened with Pred.........

At this point i dont know............

Will i stay on Hydro or go back to Pred in the future ........dont know.........

I suppose a tapering situation still applies to Hydro, dont know about that either......

These things may be sorted at the next Endo consultation...

One thing i will say is , i miss my Pred that covered a lot of general aches

and pains that are present in the ageing process................

.......................Billy..................

[PMRpro Ambassador]

Are you sure the aches and pains aren't still PMR?

How often a day are you taking the HC? That's probably the worst thing about HC rather than pred. Pred effects last 24 hours usually but HC wears off much sooner so the dose needs to be spread over the day. They usually give it 2x a day for adrenal insufficiency to mimic how cortisol is produced naturally by the body but that may not be quite enough for PMR management.

[billydownunder in reply to PMRpro]

Doesnt really feel like PMR..........lower back pain .....sore bunions etc , things like that seemedto be kept at bay with pred ,but , now have returned.

20 at brecky , 10 at 2pm..........gotta see the Rheumy in a week or so , i will ask him.........

I suppose i could just up the ante and see what happens, !!!!!!!!!!

[PMRpro Ambassador in reply to billydownunder]

Low back pain for me is myofascial pain syndrome - but mine is linked to my PMR - when one is well under control, so is the other.

[billydownunder in reply to PMRpro]

Fair enough.............I hope things dont go pear shape for me before i am to have the upcoming tests.

[powerwalk]

It's hard to know what's what a lot of the time! I've often wondered about trying hydrocortisone instead of pred as I failed a synachten test but then i think I have a lot of pain so probably better off on the pred, though I hate it. Let us know how you get on and good luck!

[billydownunder in reply to powerwalk]

Yep, I shall just have to try it and see what happens..........

[SheffieldJane]

Oh Billy this sounds to me like your PMR is poking its ugly head through again. This is the trouble with hydrocortisone, it suits the recovery of our Adrenal System because it operates more like natural cortisol that the body produces, with the ebbs and flows and gaps in the way you take it. It is not very effective however in banking down the inflammation of unspent PMR. It sounds to me like PMR might not be done with you yet. I found myself in the middle of conflicting medical advice between 2 very competent doctors, my Rheumatologist and my Endocrinologist. In the end I went with Rheumatologist and Pred ( not the hydrocortisone). This was just as well as I then developed GCA and needed further treatment for that before my Adrenal problem could be addressed. Good luck with your dilemma.

[billydownunder in reply to SheffieldJane]

Could be .......time will tell i guess. Some thing that has upset my diagnosis of the Hydro bit is ,we both have a tummy virus . That is making us feel a bit ( a lot ) crook .............

[SheffieldJane in reply to billydownunder]

I hope you both get better soon! 💐

[billydownunder in reply to SheffieldJane]

Thanks........

[Carrollee]

Hi billydownunderI have done this twice! Both times got down to 4mg of pred then gone onto 10mg 5mg 5mg HC (am, midday, mid pm). Both times pmr has come crashing back. Each time I gave it a good two months to make sure but couldn’t cope with the disability.

Went back on pred 8mg in middle of November with pressure to go on mtx as well but refused. Now on 7mg but just coming out of covid so not going any lower until I feel completely well. Survived covid without using new drugs.

I feel more human on HC but it just doesn’t control the pmr.

All the best 🤗

[billydownunder in reply to Carrollee]

Thats no good ............I hope i have better luck.

[Carrollee in reply to billydownunder]

So do I. If you have been on HC fir 4 weeks already I would say you are ok. My pmr came back within the first week 🤗

[Amkoffee]

20mg of hydro is equivalent to 5mg pred so your not really taking enough to make much difference with PMR. However, if your going in for a stem test you should not up your dose as this can effect the results. I have adrenal insufficiency from taking pred (diagnosed April 2021) and I found that I do better dividing my dose in 3. I take 10mg in am, 10mg at noon and 5mg at dinner time. I think before you up your dose you should consider spreading you 30 mg out to 3 times a day. But don't increase until you see your endo.

[billydownunder in reply to Amkoffee]

That sounds like good advice........ But tell me , what symptoms do you have from your adrenal insufficiency ...................

[Amkoffee in reply to billydownunder]

I was so tired I couldn't walk across the room. I developed pneumonia and was very sick so I thought it was taking a while for me to get over it. My pulmonologist prescribed me a steroid pack and it made me feel good again. But when it came to an end I was tired again. I had no idea what was going on. I saw my rheumatologist for my regular visit and mentioned this to her. She ran a cortisol test and called me later that same day. She told me it was lower then she had ever seen in her practice. She had already talked with an endocrinologist and made an appointment for me the next day. I was scheduled for a stem test a couple of days later and now I'm on hydrocortisone. He said it was because of my pred use from PMR and the use of opiates I had been taking for my bad back. I just can't find the words to describe the exhaustion I felt. It was so over powering. And the relief from the steroids are very similar as when you first start on prednisone after your PMR diagnosis.

[billydownunder in reply to Amkoffee]

Wow........That sounds terrible...........With me , i felt terrible after any exercise or exertion..............headache , dizzy after standing , generally very tired, lightheadedafter coughing and generally up to putty.

Another thing i have noticed is i can feel hot yet shivvery cold ( if that makes sense )

This all gradually came on over a couple of months. An unrelated MRI noted shrunken adrenal glands and that was the start of investigations.......The test i am having is just a blood test, of sorts, Cortisol, acth ,u & e (i think thats what it looks like ). no mention of a stem test.......................

( what ever that is ??????)

[Amkoffee in reply to billydownunder]

The ACTH is the stem test. They test your cortisol level when you arrive and then inject a chemical that should make your body produce more cortisol. Then they test your blood again and if you are not producing more cortisol then they know that you have a problem. Stim is short for stimulation. So I think I actually was spelling it wrong.

[billydownunder in reply to Amkoffee]

OK thanks....... yep i understand the stimulation test......Thanks again.....