The 2:00 am “inflammatory cascade” and new rheumy

[Mstiles]

Hello everybody,

I’m PGR/GCA since beginning of Jan 2018. On 40mg pred until 6weeks ago, was fired by my rheumy, then tapered to 37.5, to presently on 25. mg for 2 weeks. Tapering done under the direction of GP and new rheumy.

I still have the middle of the night waking with varying degrees of bathroom urgency, red face, swollen cheeks, jaws, (mirror horror story), worse tinnitus, some aches and pains, lying awake, etc. the insomnia has been somewhat better as doses lowered.

My question, does this middle of the night inflammatory dumping mean the disease is still active? Or just one of those things where everyone is different.

I’m still not sure about the new doc, as she does see me if I call with symptoms, is willing to schedule appts every 2 weeks, but very short office visits, last one not even 20 minutes?, and “if bloods are normal, reduce”. It seems like “the bum’s rush”. I need to type out a list of questions and hand it to her, maybe that will work.

Seeing eye doctor today so will post more after that.

Just feeling so discouraged, especially about losing more hair. It was an especially dear asset, (vanity!), before all this. Definitely worse in the last month or so.

Thanks for being here and understanding wonderful folks❤️

[DorsetLady PMRGCAuk volunteer]

Hi Mstiles,

The substances (cytokines) that trigger your inflammation are produced daily around 4am - in most people those substances are controlled by your immune system. However when you have PMR or GCA your immune system isn’t working properly so your inflammation is not controlled. That’s what the Pred does. It does not control your underlying disease, so yes it is still active- and will be until it decides to go into remission.

If you have “normal” bloods that just shows the Pred is working on the inflammation- that’s all. If that’s okay, then you are ready to reduce to a lower dose, you continue to do that until you find the dose that you actually need or your disease goes into remission. If you are lucky you reach zero Pred, but you can’t do that until the PMR is gone!

[Mstiles in reply to DorsetLady]

So if I’m still having these problems in the middle of the night it means my disease is still active? I’ve always had them in varying degrees since I got sick, they’ve never gone away completely.

[DorsetLady PMRGCAuk volunteer in reply to Mstiles]

As you were only diagnosed earlier this year, then yes your disease is still very active. Mine lasted 5&half years, so you’re only in the early stages.

Like HeronNS says 40mg is the lowest level starting dose for GCA, so if you are still having problems maybe you have never really got the inflammation under control, so maybe you need to discuss this possibly with your doctor.

[HeronNS]

I note you were on 40 mg for several months. I think that is the low end for treatment of GCA so maybe one or the other of two things needs to be done. You stay at 40 mg until the symptoms finally leave, or you ask to find out if a higher dose will deal with the symptoms. I don't think you should be so uncomfortable. The other thing is, were these symptoms of the GCA before treatment, or do you think they are actually pred side effects? I've never been at a high dose so can't advise.

And you think "not even 20 minutes" is a short visit? I think the time allotted here is 10 minutes, and the doctor uses three of them for paperwork. So I'm lucky to get as much as seven minutes.

[Rugger in reply to HeronNS]

In the UK, most GP appointments are 10 minutes and hospital consultant new appointments 30 minutes and follow-ups 15 minutes. If we pay privately, I think we get longer, but I've never done that.

As for being seen every 2 weeks by the rheumy - my rheumy said "see you in 5 months", but there were no appointments in 5 months, so I was very lucky it was 'only' 6!

Not grumbling - just saying how different things are across the world.

[HeronNS in reply to Rugger]

The only mention of seeing a rheumatologist was when my GP wanted to refer me because I was refusing alendronic acid. My understanding from acquaintances was that a referral would have taken about a year, but of course I wasn't interested anyway. My PMR has been pretty straightforward and I have no comorbidities requiring treatment, so a GP is fine - and I'm just lucky to actually have one as our older doctors are retiring in droves and a lot of the rest are burning out. Unfortunately we are among the jurisdictions trying to poach doctors from the already strapped British system, but most citizens think we should be training more of our own.

[Telian in reply to HeronNS]

forgot to say but true

[Telian in reply to HeronNS]

So funny Heron

[Mstiles in reply to HeronNS]

Thanks Heron,

That’s always the 64,000 $ question...side effects or symptoms. They got worse not right after I tapered, but 6 or 7 days later. Also coincided with my son breaking a bone in his foot and so me taking care of him.

[suzy1959]

I remember reading here that needing the loo in the night is also a side-effect of Pred. My new normal is to have to get up twice a night to pee. I can't remember the last time I slept through, and it doesn't seem to matter how much I drink during the day- my body seems to hold onto it until the middle of the night! Also, if you are having trouble sleeping as a side-effect of Pred. as I do, going onto Amitriptyline helped me a lot. I know it's another drug but sleep is really important . There is so much to understand both about the condition and about the side effects of Pred.- even after 6 years, I keep learning, thanks to this forum!

[Hidden]

Ohhhh Mstiles, I'm sorry you are experiencing this middle of the night crap... I'll let the site experts address your symptoms and steroid concerns, as I am definitely not qualified to comment... but I know the isolation and loneliness of being awake and alone in the middle of the night. I know what it's like to look in the mirror at 4:00am and see this puffy, red faced, stranger looking back at you! Sometimes the ringing in my ears is so bad it distracts me from my own thoughts and I cant remember what I was thinking!

I haven't lost any hair yet, but believe me I'm looking over my shoulder everyday, for that debt to be collected! I spent a fortune on a special shampoo for "thinning" hair, just in case! Me paranoid? Nah.

It is so easy to get discouraged, frustrated, and scared... but please know part of that is the Pred! It tricks you into believing things that are not true and exaggerates stuff that may be true, but not half as bad as they appear to be. You will be fine, this will pass. I survived 80mg and I'm still here to talk about it, you will get though this.

Don't allow your (pred soaked) mind to control your emotions. Fight back!

Think about the most awful events/experiences in your life that you've lived through... you will get though this too!

xxxx

[Mstiles in reply to Hidden]

Thank you, yes the pred messes with your thinking for sure. I try to remember my mother’s mantra for all things....” it will work out”.

[Hidden in reply to Mstiles]

YES!!!!

[Jackoh]

Must be hard losing the hair and going through all those other symptoms but well done you for being able to reduce to your present level. Others have answered your questions re is your disease still active. Just try to go with the flow - you'll get there!!! X

[yourpharmacist]

Hello Mstiles,

I am GCA only and when I was diagnosed I was started on 1gm infused for 3 days in the hospital and then was on 60mg daily for a couple of months before any titration was started. The labs of sed rate and C- reactive protein an Phosphokinase were key to watch.

I am sorry to hear you are having such symptoms and between the disease and the prednisone your body is dealing with many changes. I have been in remission going on two years, but it took 18 months to reduce to zero prednisone. During the taper down there was one time that I had to go back up for a couple of weeks and then resume the taper. My taper was super slow and has we got to lower strengths it was even slower and that is when I had to go back up for a couple of weeks. And some of the pain I experienced when tapering was due to the side effect of prednisone. It is part of the taper, a withdrawal of prednisone can affect everybody very differently. My friend ended up in the ER room in so much pain. He was dealing with Sarcoidosis and was treated with high doses of prednisone. I also have a thyroid issue so that plays a part in my overall health and how my body deals with the disease. I recently started having hot flashes again which had disappeared for awhile, but are back.

It was helpful for me to keep a journal for a few weeks to document when I felt good and when I felt bad and the time of day so I could review with my doctor and "remember" so I could ask the right questions.

I hope you feel better and know you are not alone-

[Mstiles in reply to yourpharmacist]

Thanks for your support. What a good idea to document more carefully with times, I’ve been taking notes but it looks more like stream of consciousness rambling...prednisone!

[PMRpro Ambassador]

The inflammatory cascade isn't at 2am - it is later, about 4-4.30am. If you are waking at 2am , it is unlikely to be the inflammatory cascade. But if it is for a loo stop - that is almost certainly the pred.

The disease is unlikely to be inactive/burned out or whatever at this stage. Four or 5 years is much more likely although some people are lucky and it is gone in 2 years, I do know a few with GCA where that happened. You have to be patient I'm afraid - in a year you will look back and see how far you have come. Everyone does. And maybe you will be lucky and have an express journey - but no-one can say in advance.

As the others say - 20 mins with a doctor every 2 weeks? In your dreams for most of us. I get half an hour with a rheumy now and I can call if I have problems and be seen if it is an emergency but the appointments are every 3 months.

[Mstiles in reply to PMRpro]

Thank you, that makes sense. The 2 am waking up I can usually go to the bathroom and then go back to sleep. This has decreased with prednisone tapering. It’s the 4 am wake up when the bad tinnitus and various pains usually show up. I’m having s lot of hip and knee pain now

I’m fine with taking is slow and however long it takes to taper down, it’s the rheumatologist who wants to speed up and go faster.

[Mstiles in reply to PMRpro]

I bet My rheumy would not like to hear it takes 18 months, let alone 4 or 5 years!

[PMRpro Ambassador in reply to Mstiles]

He can dislike it all he likes - the paper reporting the duration of PMR was from someone who has probably forgotten more about PMR/GCA and pred than he ever learned!

[powerwalk]

wow if I got 20 mins with my doctor (GP or rheumy) I'd be scared I was on the way out!!! ha - We have to pay each visit and would be lucky to get 5/10 mins at a push! When I went on Pred first I lost tons of hair - though I was on lower levels than you - but it stopped as I moved down the dose. Best wishes - I hope things settle for you a bit soon.

[Mstiles in reply to powerwalk]

Thank you, hope my hair returns.