new autoimmune disease after stopping prednisone?

[Whitner]

I heard of a person getting a new autoimmune disease when ending his prednisone therapy. Has anyone else experienced this? I know we are more susceptible to additional autoimmune diseases if we have one but does this happen often?? I’m hoping not. I’m down to 1.5 mg after almost 3 years.

[PMRpro Ambassador]

They probably didn't develop it because of ending the pred - just the symptoms manifested, But it isn't something I have heard of much - though I do know several with more than one a/i disorder. Mostly they were known about long before stopping pred.

[Thirkelly]

Thank you! You have cheered me up with the magic phrase "1.5 mg". Good to know it can be done. 👍

[Whitner in reply to Thirkelly]

Thanks!! I’d prefer to just stay here but not sure my rheumatologist will agree!

[PMRpro Ambassador in reply to Whitner]

Any rheumy who didn't agree is being a bit b-minded! Prof Dasgupta often let people stick at 2-3mg and my rheumy is aiming for 5mg.

[Whitner in reply to PMRpro]

I know. I wonder if there is any way to get Prof. Dasgupta’s information to my doctor?

[PMRpro Ambassador in reply to Whitner]

Probably not since he said it in a webinar to us a couple of years ago.

[Whitner in reply to PMRpro]

I was afraid of that! of well.

[yewtree]

When I stopped prednisilone I discovered I had Myasthenia Gravis an auto-immune disease which was being kept under control by pred. So I had to go back on a low dose which I will be on for the rest of my life. Fortunately it is just ocular.

[Whitner in reply to yewtree]

I’m sorry yewtree. Is the prednisone keeping it under control? I had issues with dry mouth (possibly sjorgrens (sp?)) but I’m either used to it or it’s better. I keep water with me everywhere.

[yewtree in reply to Whitner]

Thank you yes the pred keeps it all under control thankfully!

[crafty_grannie in reply to Whitner]

Hi Whitner, I also have a very dry mouth often. My dentist recommended a bicarb soda mouth rinse after meals (1 teaspoon mixed with 1/2 glass of water) to help neutralise acids. Salive would normally help to achieve this, but with dry mouth (i.e. less saliva due to medication) the bicarb soda mouth rinse will help to neutralise an acidic environment in the mouth. (Do not swallow. Rinse and spit only). I also drink a lot of water but it does not replace the saliva which neutralises acids.

[tangocharlie]

Possibly more things that were once masked by or helped by Pred come to light as you reduce and stop, with me it was allergies and food reactions. There is a theory promulgated by Amy Myers and others that your body sort of turns autoimmune for reasons we don't know whay and that can mainfest in different places and then gets a label. For example if it is in the spinal sheath etc it's MS, if in the guts, Crohns and so on for hundreds of autoimmune conditions. The medical profession treats every organ in isolation instead of seeing the big picture

[Whitner in reply to tangocharlie]

That’s pretty scary actually. My mother had Lou Gehrig’s and that is my big fear since they are now thinking it too is an autoimmune disease 😬

[Charlie1boy in reply to tangocharlie]

Hi,My wife loved your last sentence! It’s one of her hobby horses about the medical profession.

Paddy

[tangocharlie in reply to Charlie1boy]

We need a medical speciality of Autoimmune illnesses, common illness often seen but rarely diagnosed. Something watered down good along those lines might result from all the work being done on things like Long Covid and the resulting chronic fatigue. maybe medics will join the dots. Rheumatologists need to work with Immunologists. Has your wife read Doing Harm by Maya Dusenbery and Invisible Women by Caroline Criado Perez? She'd be spitting feathers like I was when I read them, so incensed.

[Charlie1boy in reply to tangocharlie]

No she hasn’t read these books as yet. Her views were mainly the result of my recent experiences with the NHS.In the last year I have seen a Consultant Orthopaedic Surgeon, a Consultant Haematologist, and a Coronary Care Consultant. At the same time, I still have PMR.

In their own realm, they were excellent and I had no complaint, but they showed little interest any other symptoms beyond their specialty.

Paddy

[tangocharlie in reply to Charlie1boy]

I've had a similar experience, seen a dermatologist, immunologist, rheumatologist and all have a different opinion on what my swollen legs and rash might be! Only the bladder specialist seems to be connecting things, as she said "we see a lot of patients with bladder problems (interstitial cystitis) and some kind of 'myalgia'.".

[Charlie1boy in reply to tangocharlie]

Interesting. I’m fortunately free of bladder problems, though I have had prostate cancer - now in remission thankfully!Paddy

[LucilleG in reply to tangocharlie]

I’ve had a dairy allergy/intolerance since the early 1990s (it's the protein, not the lactose, that my body has issues with - get cold like symptoms). I just noticed in the last few months that since I've been on prednisone, dairy doesn't bother me anymore. It will be interesting to see if it comes back once I get lower on prednisone (currently slowly decreasing from 9 to 8 mg) and eventually (hopefully) off of prednisone.

[tangocharlie in reply to LucilleG]

Very interesting. My problem is with high histamine things which includes most cheeses, yoghurt, quark. I'm OK with milk I think, though I've read it doesn't really do you much good and I think it makes me a bit phlegmy and gives me a runny nose, so I keep trying to give it up but fail as I like it in tea. I've tried various milk substitutes but nothing works the same.

[Whitner in reply to LucilleG]

LucilleG I've noticed my allergies are much better while on prednisone too. I'll certainly miss that once I'm off the stuff !

[LucilleG in reply to Whitner]

I will also miss this silver lining! I’ve been taking advantage of it - having more dairy products as I know it will end as I get lower on prednisone sigh. I’m at 8 mg and had a yummy ice cream treat today and had to clear my throat a bit, but not like I would have done before prednisone.

[Whitner in reply to LucilleG]

Enjoy that yummy ice cream while you can!! I've been enjoying the outdoors (mold & ragweed be damned) and time in friends' homes that have cats without any problems.

[PMRpro Ambassador in reply to LucilleG]

You need to move here - my local gelateria has a range of dairy-free ices and while driving through the "Valley of the ice-cream makers" to Treviso airport we stopped for last ices for my daughters before they went home: the vegan one nearly fell over when she asked what she could eat and he waved his hand at about half of the massive dispay!

[LucilleG in reply to PMRpro]

That sounds amazing...and yummy!!!

[tangocharlie]

Sorry to hear that, what a pain

[crafty_grannie]

Hi, I've had PMR and GCA for five years now and am down to 4.5mg pred. Just recently I was diagnosed with Lipoedema, which I had not ever heard about... not lymphoedema, which is about damaged lymph nodes causing a build up of fluid. Lipoedema is a build up of fat, apparently no specific known cause and very little successful treatment; eat well, keep up exercise, wear compression stockings, and it doesn't respond to dieting according to my doctor and everything I've read. Good nutrition can help slow down the process of the disease. Also an auto immune disease. I was wondering if anyone had this, following, or at the same time as, PMR or GCA. And, as Whitner asked, could it relate to PMR, GCA or prednisone use? Thanks for any info.

[Newplodder]

Different to you, but I was diagnosed with hypothyroidism and PMR within a couple of weeks of each other. GP says there is no connection, but I'm not so sure! However the same GP is referring me to an endocrinologis,t as apparently, my thyroid antibodies are all over the place....

[PMRpro Ambassador in reply to Newplodder]

I see autoimmune disease as a spectrum of symptoms rather than discrete disorders in their own right - in the past what you were diagnosed with depended on the selection of visible things that matched an existing disorder that a set of symptoms someone had recognised in several patients and very often christened with their own name! Since then things have changed as technology has identified things they couldn't have known, No we have MCTD (mixed connective tissue disease) or UCTD (undifferentiated) which covers a lot of patients who were big queries before.

So you have Newplodder a/i disorder ...

[Whitner]

I guess time will tell as to whether or not we develop new autoimmune diseases , or those hidden by prednisone use, once prednisone is decreased or stopped . I agree with earlier posts about the issues related to having so many specialists and the problems that causes in putting all the information together. In the US we have a primary care doctor who is supposed to do just that but you really do need to be your own advocate unfortunately! Then you need a doctor who will listen.

[Whitner]

Dad2Cue Sadly I've heard from many on this blog that PMR does seem to return at some point after getting off Prednisone whether it be a few months or a few years later.

[Whitner]

Oh I'm sorry Dad2Cue. Grateful that the biologic is managing your symptoms.