Stress and PMG

[Boomerang4]

I have had PMG and Adrenal insufficiency for nearly 2 years. Normally I can manage on 10mgm pred. daily. However, I find stress is a major interfering problem with tapering the pred. However, my doctor is insisting that I must not take any more pred. than 10mgm however bad the symptoms and is threatening to ration my pred. from now on. When I get a flare up it is nearly always associated with stress and I am in a lot of pain with neck, shoulders, back , hips and gluteals and also I feel very depressed - increasing the pred. to 20mgm totally relieves these symptoms. Is my doctor correct and should I try to battle my way through these ordeals?

[SheffieldJane]

Have you been diagnosed with Adrenal Insufficiency? By an Endocrinologist ?

10 mgs should be plenty to give you enough Cortisol.

I am afraid that extreme fatigue goes hand in hand with this disease. I have it too and manage it by pacing activities and a strict nap after lunch of 90 minutes ( body’s choice).

Stress is like food to PMR and GCA and if it’s bad it can lead to a flare. Try to avoid stressful people and situations if you possibly can.

How long have you had PMR? Have you ever had complete relief from your symptoms.

What was your start dose of Pred.?

I ask these questions because I am wondering if you have been under treated all along. More information will help our experienced people to advise you.

[Boomerang4 in reply to SheffieldJane]

Thank you for your kind reply. I have had PMR for nearly 2 years and Adrenal insufficency for same time both have been diagnosed by an Endocrinologist and the PMR also confirmed by a Rhumatologist . Start dose was 10mgm. Cortisol levels measured twice and both below measurable level. My question was if my doctor is being unreasonable by telling me not to increase my pred. at all even if I get a flare up ! Easy for him to say when I am in a lot of pain as I described and the depression/ anxiety is difficult to bear. All of this vanishes when I increase dose to 15 or 20mgm for a few days. I am 75 yr old but still run my own Company - not easy to avoid stress . I have never got angry with a doctor in my life before but this was over the limit. I read a lot about flares on this site and people having to increase pred. dose temporarily. Please can someone tell me straight if the doctor is being unreasonable or not and the reasons why.

[SheffieldJane in reply to Boomerang4]

I think we all agree that you need a second opinion from a good doctor. Possibly the Rheumatologist taking the lead because there is a question mark over your initial diagnosis of PMR, then input from the Cardiologist and the Endocrinologist if you were diagnosed with Adrenal Insufficiency before you ever took Pred.

[DorsetLady PMRGCAuk volunteer]

Think you need a different doctor -

your PMR needs the dose it needs, and at any dose above 10mg your adrenals will be resting anyway - the dose is above the physiological dose your own body would naturally produce… so you cannot say you have adrenal insufficiency- see this [explains more fully].-

healthunlocked.com/pmrgcauk...

..and as many of us know, stress can make your PMR flare… and no matter how much your doctor may want or think, you cannot battle you way through. The only thing that sorts a flare is more Pred [temporarily] - see this -

healthunlocked.com/pmrgcauk...

If you are talking about GP, any chance of seeing a different one within surgery …who may have a better understanding of PMR…

Just to note- if your GP stops or limits your Pred, they are putting you in danger - you could have an adrenal crisis - think they need reminding of that!

[Boomerang4 in reply to DorsetLady]

Thank you very much indeed Dorset Lady. This is very helpful and confirms what I was thinking that I should change my doctor but this in itself is stressful and not to be taken lightly, but you have given me some good reasons why. That is not to say that the next time I have a flare I will automatically increase the dose - I will think twice but remember what you said about the danger of an adrenal crisis. I have more than enough incentive to get off pred, as I have angina and there is a possibility I may have to have a by-pass. Unfortunately, I have been told that the pred. could interfere with the grafting process ! More stress!

[DorsetLady PMRGCAuk volunteer in reply to Boomerang4]

There is a worry that Pred does slow down healing process, and obviously if you require a bypass that’s a worry - no personal experience but hubby had one, so I know the recovery can be difficult enough without adding in any more obstacles. No chance of stents instead of bypass?

Good luck if you need one.

[Boomerang4 in reply to DorsetLady]

I had 2 stents placed 14 days ago and I am not much better - but it may be too early to tell. The point is that this all involves a huge amount of stress. I do find that I have difficulty in coping with stress which leads to anxiety and depression . Whilst I was on pred .when the endo. diagnosed AI, I sometimes get episodes of panic at the slightest problem or worry ( even sometimes having to fill up the car at the garage!). I hate appointments or making any commitments. Tried an anti-depressant but bad side -effects.

[DorsetLady PMRGCAuk volunteer in reply to Boomerang4]

Sorry to hear all this - any chance of getting some other help on the stress side of things… anti-depressants are great for some, but don’t think they suit all.

My late hubby went through a difficult stage and got help from a CBT therapist… he was a bit reticent initially being a roughy, toughy outdoorsy ex military man, and always capable of sorting out his own, and others problems.. But as I said, no harm in trying it… and he did actually say afterwards. It was worthwhile, she didn’t say anything radical but confirmed at lot of what he thinking anyway. Just being able to discuss it with someone who wasn’t personally involved gave clarity.

Medical help doesn’t always have to be medication… not sure how easy it to access though nowadays.

[PMRpro Ambassador in reply to Boomerang4]

It is a common problem I think - and for some people 10mg is barely replacing the lack of cortisol. But few doctors will take that into account.

[PMRpro Ambassador]

Like DL, I think you need a different doctor. No-one can diagnose adrenal insufficiency while you are on 10mg pred - it will suppress adrenal function very efficiently.

However, if you require 20mg pred to manage your "PMR" well after 2 years, then the chances are it is not PMR and you need a review of the diagnosis.

[Boomerang4 in reply to PMRpro]

Actually, normally without stress , I can manage quite happily on 10mg pred , as I explained , it is only when I get the 'flare' after stress that I feel I have to increase for a few days and then return to 10mg. I have recently had a review privately with a rheumatologist and he confirmed that I have PMR and ideally that i should try to get down to 7mg but he understood the flares that i get and accepted the fact that I had to increase the dose temporarily. He never said I should ignore them and just carry on on 10mg. Thank you very much for your advice and confirming what I must do.

[Sophiestree in reply to Boomerang4]

Did the private rheumatologist write to your doctor about the need to increase. Sometimes that's enough for a GP as it wasn't their decision and at the end of the day can just bat it back to the consultant.

Were you diagnosed with adrenal insufficiency before you started pred ? Or after you started.

I have worked under a stressful environment for years but found pred has made my stress to small things very heightened. Stopping and just concentrating on breathing techniques helps me.

I feel like you are not being listened to and need a new eye on everything. Is that the only doctor in your practice?

It feels to me like you need a reset with a fresh pair of eyes.

Very tough for you.

[Viveka]

Has he put it in writing that you can take extra to manage flares? They don't normally go against a specialist. Do you have a slow tapering regime to inch below 10?

[Estellemac]

I am 69 have osteoarthritis and quite a few steroid related health problems. Been on steroids for 8 years with frequent flare ups got to 5 for a year then a flare up. That’s where so am now. I can’t get below 10mg without muscle pain all day and through the night. I’m lethargic and have no motivation to do anything even if I could. I am at the Dr today who will no doubt have the same ideas as yours. I joined the Sterling trial for a steroid sparer called Methotrexate then 4 weeks later got Microscopic Colitis. So another reason I can’t get out. No bowel control now. But I’m ok if I don’t eat. Not that the Methotrexate necessarily caused it but I stopped it till we can sort that out. Apparently it doesn’t go away either but more so in to remission.

I think your Dr is wrong it’s your body. You know your pain and how it affects you. If he wants you off steroids what is he going to do to manage fix or diagnose what is causing it as Sterouds work? But they also work for other conditions. Has he ruled all those out? Is Addisons Disease causing the adrenal insufficiency? You want answers so maybe someone with more experience in this field would be better placed to help. Ask if he can refer you perhaps but make him think it’s his idea. Then you won’t need to trouble him? This is just my opinion though.