Trapped on prednislone

I’ve been on pred for 6.5 for pmr I’ve got as low as 6.5mg and have no problems from pmr symptoms but always start to have mental health problems I notice the anxiety and depression ramping up at approx 8mg.

I have been at 7.5mg for the last year and the anxiety has been relentless I increased my anti depressant but I couldn’t tolerate the extra dose.

I’ve tried to stabilise given it a year at 7.5 but today I’ve increased back to 9mg I’ve had enough and no support from Doctors or Rhematologist.

Fingers crossed it works.

[DorsetLady PMRGCAuk volunteer]

Hi,

Is it possible for you to pay for a private appointment with Rod Hughes - he’s very experienced in PMR matters?

I think he’s very good in transferring you from private to NHS if he thinks he can help you.

You need someone with a bit more experience than your current Rheumy and GP.

Here’s a link -

topdoctors.co.uk/promo/doct...

[Hidden]

Thank you I may very well contact him as Guildford is not to far from where I am.

Just hoping the extra pred will help me feel a bit better till I get the help I need.

[PMRpro Ambassador in reply to Hidden]

Rod Hughes is in Chertsey, not Guildford

[PMRpro Ambassador]

If the mental health problems are due to the pred you would expect it to be worse at higher doses than lower ones. I wonder if your adrenal function (or lack of it) is playing a role? It isn't unknown.

[Hidden in reply to PMRpro]

I’ve mentioned this to my doctor on several occasions as when I got down to 8mg in 2014 I had my first encounter with depression,anxiety and panic attacks and that’s when I got put on Sertraline an anti depressant.

I really do feel my adrenal function is the problem but no professional I see will take me seriously 😒

[PMRpro Ambassador in reply to Hidden]

Have you tried requesting a referral to a psychiatrist?

hindawi.com/journals/crips/...

ncbi.nlm.nih.gov/pmc/articl...

may help you get a discussion going with a GP. You are at too high a dose to get them to do a synacthen test to assess returning adrenal function but maybe an endocrinologist may be useful.

[Hidden in reply to PMRpro]

I think an endocrinologist is the way to go. I’d like a face to face with doctor but only doing phone consultations at present.

[SnazzyD]

I recognise that problem. From 8mg down my mood stability became unseated and it has returned to normal as my adrenal function returned. It felt rather unfair after the choppy seas of high dose, to be hit again when it had been advertised as getting back to normal. The worst was 8mg ish to 5mg with a peak around 7mg. I had a hunch that it was something I had to weather because adjustment of the body was bound to be difficult at this stage, once id thought about it and not believed the hype!

[Hidden in reply to SnazzyD]

How did you cope? I’ve been feeling so ill the last year anxiety,depression,nightmares and food intolerances I feel so gutted and defeated increasing my pred dose when I have no symptoms of pmr.

[SnazzyD in reply to Hidden]

I think most importantly holding on to the idea that it was part of the process not being something dreadfully wrong even though it felt like it. That is what I did when I felt bonkers on high dose too. That takes part of the fear away, which is what stokes the fire for the other mental stuff. I’ve done dark times before so had some practice. The other big thing is break down time to be got through into small chunks. The worse it is the smaller the chunks so it might be getting through 5 minutes before thinking about the next 5 minutes.

I stayed away from anything distressing or challenging to the emotions. The only tv I watched was cooking competitions and DIY shows. Even then the false jeopardy was little bit too much of the thrill. I then progressed to films with a guaranteed happy ending missing the upset bit you always get in the middle. Oh and walking and concentrating on every step or looking properly at things instead of being inside my head. I expect they call that mindfulness. Breathing exercises to try to calm the part of the brain that says “alert, alert, we’re all doomed”. I did a lot of crying; I’m a big fan of functional crying. Dealing with unwanted thoughts can be hard, my worst we’re when falling asleep. I just kept up the dialogue with myself that I was ok and kept on breathing.

It wasn’t easy especially with a clueless (nobody really knows how you feel) family including a very selfish elderly relative. My dogs helped.

I had a Synacthen test at 4mg by which point I was out of the fog, but it showed that function could be better.

[S4ndy]

Hi, sorry to hear you are suffering. My anxiety spiralled out of control when I was first on Prednisolone. My GP was very helpful and changed my anti-depressant dose. I was on Prozac at the time. Changed to Sertraline and that helped at a dose of 150mg a day. I started at 50mg and gradually increased until I felt better at 150mg a day. I had to experiment with when to take it to. I've found morning to be better than night time. My hubby tried Sertraline for a while when he was having a problem with workplace bullying. They didn't work for him but Citalopram did. I think it's a question of finding the right drug for you. Not having a supportive GP is difficult but surely the GP could let you try a different antidepressant. Just thought I would encourage you to talk about trying a different medication. Hope you feel better soon xxx

[Hidden in reply to S4ndy]

Thanks for the reply Sandy.

I’ve been on 50mg of Sertraline for over 5 years and done really well up until now,I only had problems when it was upped to 75mg I had a bad reaction after 6 weeks and had to taper back down to 50mg again,I have considered changing anti depressants but I’ve been told I’d have to wean off of the sertraline first and I know that would also cause a lot of anxiety as well, I seem to be caught between a rock and hard place at present.

Hoping to stabilise back onto a slightly higher dose of pred than maybe I’ll decide to give another Anti depressant a go. All the best Diane

[bunnymom]

I have been going from 7 to 5 over the past few months and find that I am anxious at times. I tried CBD oil without THC and it really works for me. 5 drops under the tongue as needed which was usually once or twice a day. No side effects for me. Feeling much more stable now at 5. Best wishes to you. It's a miserable feeling.