Cushings??

[ChrisinNam]

Had a phone call from the Lovely Nurse yesterday. She'd been doing some research, and told me she thinks "they" had given me Cushing's Diseased. She's still researching, and contacting rheumatologists etc.. Talk about going the extra mile! Anyone else had this?

[TheMoaningViolet]

Isn't that just a "moon face" which will disappear as you reduce steroids?

[TheMoaningViolet in reply to TheMoaningViolet]

Sorry, I didn't mean to be dismissive by saying "just". Weird redistribution of fat is not something anyone wants. But it will disappear once you reduce the medication.

[ChrisinNam in reply to TheMoaningViolet]

No, it does involve that, but in my case the worst is the severe weakness in muscles, such that I can now barely walk. Nurse has advised reducing Pred as quickly as possible, although not as quickly as the Dr wanted.

[TheMoaningViolet in reply to ChrisinNam]

It's awful and ironic to suffer a side effect that is as debilitating as the main disease. I suspect the only way to reduce the steroids is gradually, but once you get below 10 mg the situation should improve.

[Carriemetz in reply to ChrisinNam]

Probably a mistake to reduce pred quickly? PMR/GCA will often comeback to bite u and u may end up having to take a larger total load of pred in the end. Slowly does it is mostly the best way.

[DorsetLady PMRGCAuk volunteer in reply to TheMoaningViolet]

Bit more than that- as ChrisinNam says - nhs.uk/conditions/cushings-...

[cycli in reply to DorsetLady]

Should I be showing these symptoms of which I have all after 3-4 months on pred? DL

[DorsetLady PMRGCAuk volunteer in reply to cycli]

You will probably have them for some time……but they do disappear as you get to lower doses - but how low depends on individual, plus of course as you’re on GCA doses it means they are more pronounced initially.

As nhs say -

“If it's caused by taking steroids:

your steroid dose will be gradually reduced or stopped”

Well we can’t just stop steroids , so are reliant on the gradual reduction.

[cycli in reply to DorsetLady]

cheers DL. Can't say I like the look or the muscle waste but people seem to have misread and are scared about growths. Need to read PMRpro post.

[DorsetLady PMRGCAuk volunteer in reply to cycli]

Well all I can say is - my Rheumy did comment on me being ‘Cushingoid” when I first saw him, after being on high doses for 7 months, but didn’t have the manners to explain….but that was him! ..

and also pleased to say that everything returned to normal in time.

[cycli in reply to DorsetLady]

not very tactful are they? Still we are where we are as the saying goes

[SheffieldJane]

I certainly have had the moon face and fat deposits elsewhere on my body from Pred use, referred to as Cushing syndrome. I think most of us do at some stage. I am glad that you have a lovely nurse, it makes such a difference. Cushings is just one of the depressing downsides of taking our very necessary steroids, nobody’s fault, just one of those things like the hair loss. Cushings Disease is different with more complex symptoms and causes. We can get some of them, like steroid induced diabetes and hypertension also the danger of osteoporosis. Tapering off Prednisalone relieves the syndrome effects in most people. I have just read about your profound muscle weakness that interferes with your ability to walk. I hope they get to the bottom of this for you you do seem to be unusually adversely effected.

[mgrogers99 in reply to SheffieldJane]

The disease is from a tumor on the pituitary gland.

[cycli in reply to mgrogers99]

It says it COULD be not it is mgrogers. It is a possibiliy but not a probability. It is associated with the body itself producing too much cortisol which they think may be caused by the growths. Not that taking pred. will cause you to have a growth.

[mgrogers99 in reply to cycli]

Yes...typed the wrong word! Was trying to differentiate the syndrome and the disease.

[cycli in reply to mgrogers99]

we've got enough to worry about without something that might never .

[PMRpro Ambassador in reply to mgrogers99]

Not only, but also ...

"Cushing’s syndrome can be caused by overuse of cortisol medication, as seen in the treatment of chronic asthma or rheumatoid arthritis (iatrogenic Cushing’s syndrome), excess production of cortisol from a tumor in the adrenal gland or elsewhere in the body (ectopic Cushing’s syndrome) or a tumor of the pituitary gland secreting adrenocorticotropic hormone (ACTH) which stimulates the over-production of cortisol from the adrenal gland (Cushing’s disease).

Cortisol is a normal hormone produced in the outer portion of the adrenal glands. When functioning correctly, cortisol helps the body respond to stress and change. It mobilizes nutrients, modifies the body's response to inflammation, stimulates the liver to raise blood sugar and helps control the amount of water in the body. Cortisol production is regulated by the ACTH produced in the pituitary gland."

[SheffieldJane in reply to mgrogers99]

You were not aware of this fact prior to the nurse’s research? What a shock.

[ChrisinNam in reply to SheffieldJane]

No, I wasn't.🤦‍♀️

[SheffieldJane in reply to ChrisinNam]

Let us know what happens ChrisinNam. I hope it works out well for you.

[ChrisinNam in reply to SheffieldJane]

Thanks, I will. And that reminds me, you wanted me to let you know about the Fatigue Service. Hmmm I haven't heard from them . . . . .

[Pameliza in reply to ChrisinNam]

Dear ChrisinNam, I became particularly aware of the side effects of prednisolone as my GP, quickly backed up by the rheumatologists, put me on 75mg for GCA and PMR. Weeks later, I was dropped to 60mg. I had a big tummy in weeks, lost Kg of muscle, was so weak I couldn't even get in or out of bed at all and had to be pulled from a chair, glucose shot very high even if I hadn't eaten, I became incontinent, even my diaphragm weakened so I could no longer sing and had trouble speaking. Some of my muscles spasmed for hours, the worst being in my back. My kidney data dropped out of normal range. It wasn't until my dose was dropped again to about 50 that I had a moon face. My hair stopped growing but I grew 3 inch long sideburns red gold in colour which slowly extended across my cheeks (I have grey head hair). I became suicidal for a short time but my husband and a counsellor rescued me.

Now at 4mg I have normal glucose and kidney function, my head hair grows, I have lost all but a few stray sideburns, I have managed to lose the weight I put on, but still have trouble with minor back spasms. I can now walk for hours with a walker or about 400m on my own. I worked hard to get better but am not sure I will make it all the way back to my "normal". My rheumatologist says I may have to accept a "new normal" for me. I was much more active in the "before" days. The cataracts caused by the prednisolone have been removed and I can see more than I have for years.

I don't see many posts from GCA sufferers but for both GCA and PMR people there is light at the end of the tunnel.

[ChrisinNam in reply to Pameliza]

Hi Pameliza. Goodness, you're really going through the mill, aren't you? I thought I had it bad, I can barely walk at all now, used to walk at least three miles a day, AND do housework and gardening. Can't do any of that now, but your tale has put it all into perspective. I think there are plenty of us here who won't get back to proper "normal" ever, but we're alive. That's the main thing. As you say, look for the light at the end of the tunnel. Best of British to you.

[Pameliza in reply to ChrisinNam]

Thanks! I cannot garden anymore which used to make me sad. Now I mostly just enjoy the work my husband does but I often want to interfere and do it my way. I hope I am getting better at just saying "thank you".

[jinasc]

One of the listed 83 side effects

I loved my Moon face - all my wrinkles disappeared, they came back when it went away .

NB: Nobody gets them all. Most of them are not in the common range.

[cycli in reply to jinasc]

I've got them all jinask, after only 4 months.

[jinasc in reply to cycli]

All 83 plus Brain Fog and Dropsy....................Guinness Book of record for you oh and I ordered a pair of 👼👼 💸💸 so you owe my big time. 😈

[cycli in reply to jinasc]

No you nit, just the obvious ones they flag up. now I've got to look at the site again

[jinasc in reply to cycli]

Love it. Made you learn something else. 😈😘.

[cycli in reply to jinasc]

pest

[PMRpro Ambassador in reply to cycli]

Now now children ...

[ChrisinNam in reply to jinasc]

Yep. Not all bad, then.

[PMRpro Ambassador]

You almost certainly don't "have" Cushing's Disease" - what you probably DO have is Cushing's syndrome. Cushing disease is due to something in the HPA axis (the combination of hypothalamus, pituitary and adrenals) that isn't right and leading to the production of more cortisol than is normal. It could be a growth on any of them or other things and the effects of that extra pred cause the typical Cushings symptoms we all know - weight gain and fat in specific places including moonface, and in some people the muscle myopathy. In Cushing's disease they don't know the cause of the excess cortisol and it CAN be a nasty tumour. However, in our case they KNOW where the excess corticosteroid is coming from so don't have to worry about the source.

I wonder if she realises that the different corticosteroids have different effects? I was quite Cushingoid with methyl prednisolone but with prednisone and prednisolone I don't have any problem at all. Once I stopped the methyl pred the wasted muscles returned to normal and I was able to lose the pred weight even though I was still on pred.

I'm surprised she needed to do "research" though - if she has patients on steroids she should know about it.

[piglette]

Cushings’ syndrome happens quite often with people on long term steroids, I am amazed the nurse did not know that. Cushings’ syndrome is an endocrine disorder caused when the adrenal glands produce excess cortisol. Cushing's syndrome that's caused by steroids is called iatrogenic (or exogenous) Cushing's syndrome. Ask your nurse to look that up!!