I'm new to this group, I have PMR/GCA, and I'm looking forward to learning from each other

[Artnmusiclover]

Hello all, this is my 1st post and I just wanted to introduce myself. I was diagnosed with Polymyalgia and GCA in January 2019 after 2 months of 'flu-like' ilness and pain. It has been a weary year, which has seen me having to be signed off 'long-term' sick. This has been mentally difficult having always been a 'workhorse', but I found a trial phased return did more harm, as all it did was highlight how little I can do now. My steroids have been a rollercoaster, twice increased back to 40mg when I have reached 6mg. The most recent was a GCA flare, with which I was hospitalised. I just cant pass 6mg, I have gone from being a super fit 56yr old to a 57yr old who feels like 80! I'm breathless, hardly sleep longer than 4-5 hours (despite having chronic fatigue), and am prone to extremely low mood. With every test I have something else is discovered, osteoarthritis at the bottom of my spine, deteriorated vision and most recently diabetes. This has been a year of trials in a nutshell, but I am looking forward to having a new rheumatologist and reading your messages in the hope of helping each other. Thanks for reading 🙂

[SnazzyD]

Hello, from someone who also got clobbered and my lifestyle changed suddenly at 54. Most of us were go getters and workhorses which might be a clue🙂. so sorry you’re having such a rough time. A couple of things jump out from your post. The first is the speed at which you have reduced to 6mg during the time one is most likely to flare, the first 18 months. The chances of the disease process being in remission at this point is highly unlikely. The idea of reducing is to find the lowest dose that will hold the symptoms at bay in you, nobody else and certainly not according to an imposed schedule. The guidelines are just that, guidelines that need to be tailored to the individual. Your body goes into remission in its own sweet time not when the Pred goes down but hopefully at a similar speed. Going down too fast just causes a flare and jumping back up and more Pred which does the patient no favours because their over all cumulative dose becomes higher than if it had been slow and steady.

Your symptoms at 6mg sound like you are also suffering from adrenal insufficiency a common complaint after the adrenal glands have gone to sleep because your body has had more than enough cortisol. This is a very delicate time for that reason alone and can’t be rushed. Were you warned?

The chronic fatigue is likely due to permanent withdrawal symptoms because you were not able to level out and the autoimmune part simmering away and the inflammation produced being allowed to increase.

Re your diabetes, did you adopt an very very low carbohydrate diet from the beginning? This is usually needed to avoid weight gain and diabetes but patients are usually not told.

Your vision will be affected by the Pred which is par for the course. This usually manifests itself in difficulty with adjusting focus and improves with dose reduction. Cataracts are also possible but can be fixed . BUT if you are having problems like blank spots, flashes of light, double vision, or anything from before diagnosis this needs urgent attention.

I’d say you need a different doc who understands the condition needs a slower reduction. It took me nearly 2 years to get to 6mg with no flares. Anyway, sit tight for more replies.

[PMRpro Ambassador in reply to SnazzyD]

Couldn't agree more!

[Artnmusiclover in reply to SnazzyD]

Apologies for a late reply, I have had a chronic chest infection. Thank you for this extremely useful information. My rheumy wasnt the best, I have seen her 3 times over the year and with each visit a new symptom. However she doesn't listen when I tell her, she just likes to taper my pred. I have now requested a 2nd opinion as I'm sick and tired of being in a worse place than I was a year ago. I wasnt given any diet advice, or other advice (adrenals, what to expect etc) unfortunately and having to find out for myself, hence my gratitude to groups like this. Thank you once again, I will certainly take your advice 🙂

[SheffieldJane]

Hello and welcome to the forum Artnmusiclover. I am sure that you will find this forum to be a great support and source of information. It does seem from your post that you have reduced Pred at a tremendous rate. This never suits us. If you are comfortable at 6 mgs, I should stay there for a few months and when you feel ready, then do a very slow taper of 0.5 mgs ( cut I mg tab in half) and use one of the tapering programmes pinned here, maybe taking a month or two to get down. In contrast ( with PMR only) I took over 3 years to get to 6 mgs after staying at 7 mgs for a year. This is also beneficial to your Adrenal function, that will be waking up around this dose, and needs time and patience to get going, some of your symptoms may be due to this.6 mgs maybe your perfect dose for now and a relatively harmless one at that. Take a strictly observed nap or bed rest every day - it will help. Discuss the depression with the doctor - even though it is reactive - it can be treated. Amitriptylin helped my insomnia at its worst ( 10 mgs one hour before bed). Have you seen a Ophthamologist? There are eye conditions like glaucoma and cataracts that we need to have carefully monitored and treated, if they arise. My eyesight has had two big deteriorations a very expensive nuisance. Report all your symptoms to the doctor - breathlessness is common but not inevitable. Take care, you are not on your own.

[Artnmusiclover in reply to SheffieldJane]

Hi, thank you for the sound advice, I have learned more from this post than i have in a year with a rheumy that doesn't 'hear' me. I am interested to hear of something that helps insomnia. I am in the process of being transferred for a 2nd opinion. Once again thank you, it is reassuring knowing I'm not on my own 🙂

[powerwalk]

Welcome, you are in the right place for support. I can relate to how you feel, as can most of us. I only have pmr, but also fibromyalgia and ME. You will get great support from members here. Im not an expert on dosages, etc., but had to give up work due to the fatigue associated with the pmr having worked with fibro and ME for years. Totally get how you feel with all this. Hopefully things will settle for you to a better level. Best wishes.

[Artnmusiclover in reply to powerwalk]

Thank you, it is extremely reassuring to talk to others feeling the same. I really feel for you having fibro and ME too. It's such a struggle mentally without the nasty physical symptoms. The fatigue really gets me down after being so active. I too cant work and my days are planned around this ilness. I truly hope things improve for you, take care.

[PMRpro Ambassador]

The median time to get to 5mg is 1.44 years - only slightly under 18 months and you were well within that target. To have started at 40mg and to have reduced to 6mg not just once since last January but TWICE means you have been reducing at a tremendous pace - one that is far too fast for the vast majority of patients. When your symptoms rebel twice at a similar dose it means you have reached your destination for now: the lowest dose that manages your symptoms as well as the starting dose did. It doesn't mean you won't get lower, just not yet.

I'd have chronic fatigue if I was only sleeping 4-5 hours - but that is also a component of autoimmune disorders in general. It is not managed by the pred, that is up to you to adapt your activity and lifestyle. If necessary, ask the GP for something you can use occasionally to get more sleep - to at least break the pattern which can become "learned", you expect not to sleep, therefore you don't. The rest can be helped by pacing and resting appropriately:

healthunlocked.com/pmrgcauk......

It won't cure anything - but it may well make it rather more tolerable and once you learn to live with the gorilla, much more is possible. As will cutting carbs, especially simple sugars and processed foods, which will help with the steroid-induced diabetes and possibly even with how you feel generally.

[Artnmusiclover in reply to PMRpro]

Apologies for the late reply, trying to recover from a chronic chest infection. Thank you for this valuable information. I have been told very little about what comes with the ilness, only a regime of pred and tapering. I'm waiting to see another rheumy, hope I get better treatment. I'm understanding the reduction has been tremendous and I am realising more how much control we need to take ourselves. Once again thank you 🙂