Hello - I am positive diagnosed GCA which I have (officially) had for just over 7 months: Having started on 60 mg I am currently on a Prednisolone dose of 17 mg. By sticking to a carefully selected diet I’ve managed to lose 11.3 kilos, and eliminated the fat that original collected on my lower legs and feet. All my shoes/boots etc fit nicely again now. However, I can’t seem to get rid of the awful belly fat. The last time I looked like this I was 6 months pregnant.
I rarely post but do read them every day – and see that the withdrawal and side effect symptoms (many and varied) are basically the same but that people experience them differently. Some very few and others not so. The answers, from the Pro volunteers – because they are right – are also the same. I tried entering belly fat but didn’t find the answer to my specific question which is – how can I get rid of the belly fat ? Maybe I didn’t go back far enough – the posts that popped up tended to be 2-3 years old. I can live with the back fat (for now) – hump and all – but wonder if it’s just a case of the steroid dose getting to be low enough before the belly fat will start to dissipate? If so I suppose that at 17 mg I have a way to go yet. Please can someone give me a clue ?
Lest you think that belly fat is a minor thing to be worried about, with everything else that GCA and steroids entails, I do have a LOT of pain (including Myofascial) which I’m identifying, and coping with, as the disease progresses. I’m also aware of which pain is which – due to steroids or GCA. I acknowledge that pain is part of the journey, and to be endured. Luckily to date I can still sit, and sleep, pain-free – which is an enormous blessing. OK I rarely get more than 5 hours but they are good sound sleep hours. Awake and up and about (the ‘about’ bit being debatable !) my pain levels are such that walking even a few steps is agonising and I’m now fairly used to crawling upstairs.
Naturally I tend to mainly read the posts relating just to GCA and note that experiences vary, as do the coping mechanisms. Incidentally to refer to a recent thread, after reading it, I booked 3 sessions of Bowen, which I had over a 3 week period. They didn't help with the pain at all. Still, I’m glad that I tried it as it was just about the last thing that I hadn’t tried. I also have a very good TENS/ENS machine now but it hasn’t helped one little bit.
So, if I can just get rid of, or reduce, this belly fat it will be one small step forward. Everything else I can cope with because I know there is an end at some point. At least we have a disease that does eventually go, or into remission.
Sorry about the Bowen not working - it doesn't always but I do feel it is worth a try - anything really may be worth a try with PMR! Though I do have some things I say no to! GCA is, maybe, different.
When I started my crusade to lose weight I was fat all over - no two ways about that. I did it by cutting carbs drastically. I had also changed to a different form of prednisone so I can't say it was 100% the "almost no carbs" but I had also tried other options under the guidance of the hospital dietician and that hadn't made much difference at all. 16kg went slowly but steadily - unless I ate carbs for a period, then I lost no weight.
I had bought a new outfit for my daughter's wedding, orange trousers and a top. I took another pair of smart black trousers with me in case I bottled wearing the orange ones (very Austrian fashion, rather different from most of Europe and definitely NOT what you'd see in the UK High Street). I'd bought them about a month/6 weeks before the wedding and they were OK. On the wedding day - they almost fell down! I bought a belt that week - and judging by that have lost about 5in on my waist. I've lost weight all over - but the most obvious thing right from the start was the return of my waist.
When you cut carbs enough your body uses the fat for energy - the belly fat went too is how I read it.
Thank you for that PMRpro. I did cut all carbs out in the beginning but confess that, recently, they have crept back in. Not a lot, but clearly enough to hang onto that fat. Starting right now I'll cut them out completely again. After all I felt well enough without them and didn't feel at all hungry.
Ozymandias, I have been looking for a way to reduce this large bulge around my middle for some years now, but haven't yet succeeded. Perhaps if we work on it together we might come up with a method? We'd make a fortune!
I am further handicapped by having other problems which limit my mobility, so really the only exercise I can do is walking (haha ! on a good day I get overtaken by snails wearing clogs). However, I am lucky in that Bowen does work for me, after a treatment I always feel better - I have Fibromyalgia too and I think it works on that.
On reading your post, one thing did strike me - you said or implied that you were in a lot of pain in the mornings? You could discuss tinkering with your dose timings, sometimes a variation in times or splitting the dose into smaller frequent doses does help. I'm at my 'best' first thing in the morning - it all goes downhill from there. If you could feel better in the mornings maybe you could also tinker with any exercise times which might help?
I'll keep in touch - especially if I find the answer!
Hello Polkadot, thank you for your response - Currently I can hardly walk at all - temporary I'm sure. It's just that the pain has moved to my right hip and, coupled with the Myofascial upper back pain and lower back cramps I couldn't even take on a snail at the moment. Still, if it progresses, as it has previously, it will eventually relocate to another area - maybe ease off altogether for a while.
I don't have any other condition - just the GCA and apart from my trunk area am fine. Legs, arms, neck, hands, feet - all just fine. I don't even have steroid fog - but my trunk area is just one big pain zone. It never goes, just eases off for a few hours. My best time is between 10.00 and 16.00 hours, but I'd rather have that time zone a little easier, and continue to cope with the early morning pain as it is.
I get up anytime between 6 and 7 and immediately take 2 CoCodamol (my only medication other than steroids). Taking CoCo 4 times a day made me so constipated that I had to stop taking them - just 2 first thing - sit down with a good book and wait for them to kick in. I stopped everything else weeks ago to 'prove' to myself that the steroids were the sole cause of the pain. I take the Pred. at 8.00. By midnight I'm ready to crawl into bed.
Actually I've become used to the pattern and am concentrating on reducing the dose very gradually - I went from 20 to 18 (being 10 %) and then 18 to 17. I think that I've just been unlucky to have this level of pain for so many months (June) but have become used to it. It's the immobility that's more frustrating. I was very active before - at least 2 hours heavy gardening daily. I'd love to get out for even a short walk - on a good week I can just manage TESCO with the aid of a trolley to lean on. The last bout of Myofascial pain lasted 6 weeks but did eventually just go (over a 4 day period). This bout will do the same no doubt - hopefully within 6 weeks !!
I hope that you do find the answer - ditto if I find it first.
You really do need more than Bowen if your MPS is that bad - that is how I got to 3 years ago where I couldn't move at all because of sacroiliacitis and was actually admitted to hospital here for the quick approach - infusions of high dose steroids plus painkillers in the morning and iv valium before bed. Unfortunately I had a rare but severe reaction to the iv valium but had had 2 lots before it was realised what was causing the trouble so was relatively pain-free. I then was sent to the pain clinic for the slow approach where the anaethesiologist used cortisone injections into the trigger points and manual mobilisation of the trigger points.
A physio may be able to help with manual mobilisation of the trigger points - how to access cortisone injections in the UK is another matter. The GPs will do them here as well. But it will keep coming back unless it is sorted out - I now have a couple of days where it is a bit sore but no more than that.
Oh I don’t like the sound of Sacroiliacitis at all, but have now looked it up and (happily) my pain doesn’t fit the profile of Sacroiliacitis – she heaves sigh of relief. For instance, I don’t have thigh or pelvis pain – nor do I have any pain at all when sitting or lying down. I looked up Myofascial pain a while ago and my symptoms fit that to a T - inflammation of the sheath over the organs (or words to that effect). I don’t have any joint pain at all, nor have I had. Over the years I have had 3 slipped discs and; as a passenger in the car; it was incredibly painful – going over potholes, speed bumps etc. With this pain Alan can hit as many potholes or speed bumps as he likes – no pain. It may be a basic way to differentiate between joint and other pain but, coupled with the other factors, it’s pretty conclusive.
I’m expecting the results of my Lumbar/Sacral scan (also Dexascan) any day now – it’s been over 4 weeks but, only yesterday, I was told it could take up to 6 weeks – ridiculous,. However, it should hopefully rule out Sacroiliacitis.
Of course a lot of my pain is exacerbated by the fact that I wont take painkillers. Just 2 CoCodamol to get me going first thing in the morning, then nothing until the following day (24 hours). Paracetamol don’t work for me. Ibuprofen does but I can’t take that with steroids of course. Bottom - line – the pain would be easier to manage if I could knock it on the head several times a day. Even the CoCo only takes the very top off – it doesn’t numb it.
I think you’re right about getting Cortisone injections in the UK - as I mentioned them to one of our Doctors, during the summer, when ours was on annual leave, and he said “Not when you’re on steroids” of course I knew no different then, so didn’t push it. Mind you, after sticking it out all this time I’ll plod on rather than have them sticking needles here there and everywhere.
A few months ago I read a book called TOP SCREWUPS DOCTORS MAKE – not recommended reading for worriers or hypochondriacs. I’m neither but have always been a sceptic – this book enforced my beliefs.
My Rheumatologist did mention that they have a Pain Clinic at the hospital but I’m not due to see her now until the end of January. If things haven’t improved by then, and depending on the results of my latest MRIs, I’ll request a referral to it.
Thank you for taking the time to reply PMRpro and for all the information. I rarely post but do read all the relevant ones.
What's wrong with taking oral steroids and also having local injections for a more targeted approach? Doctors in the UK sometimes do have some strange ideas! The advantage of having steroid injections while already on oral pred is that you put the antiinflammatory at a higher level exactly where it is needed. So when you have a systemic problem (PMR) you manage that with a low-moderate dose of oral pred and then, when bursitis or something develops, you hit that with a local response. Like doing the washing up with Fairy and getting out a brillo pad for the burnt-on bits. My anaesthetist pain specialist was perfectly happy to do it like that and I'd take her knowledge of pain relief over a GP any day! It meant I was able to get from 15mg/day that just covered the pain to a much lower daily dose and the rest of the pain was gone.
Well the post was very late today and with it came the results of my spinal scan - which apparently shows wedge fractures at L1 and possibly T12. Also degenerative changes, causing moderate spinal stenosis at L3/4. I am 74 so I expected that something would have deteriorated by now. No changes associated with my past history off breast cancer. Some good news is that my bone density is satisfactory (wonder how I got the fractures then!?
I've broken bones in the past, and they healed in 5-6 weeks - so I suppose these fractures will do the same ?!
Am I being too blasé ? Have never been a worrier, so can't become one overnight.
My belly wobbles like jelly never had belly fat before, as pro said take out carb as much as you can . Not easy on pred it seems to make you want carb My body always works better on high protein very little carb so have put on 10kg . Lost 1kg in 3weeks was feeling pleased with myself but diagnosed with Osteoporosis last week so have spent the last few days with nose in cake tin or ice cream tub . Need to get back track,all I did was take white food away it's a good way to start no checking anything also drink a lot of water
After a mistaken diagnosis of osteoporosis I spent several weeks in profound shock, researching and instituting natural treatments so when I discovered I "only" had osteopenia it was like a blessing and I have felt much better ever since. I think the reason for this apparently strange reaction is that at least knowing my T-score I feel I can do something about that. Everything else, especially having to take pred for PMR, was so out of my control I'm sure it added to depression. Thing is, even if the osteoporosis diagnosis had been correct I think the belief that I was taking control would still have helped my mental attitude.
Hello Olive - I've been slipping with the carbs but will cut them all out again. My weakness is ice cream and I've stocked up for Christmas - will just have to leave it for a while ands see if I can shift some of this fat - worst time of year to tackle this of course.
If you get a reply twice it's because I did one (a bit longer) - submitted it - but then it seems to have vanished.
Hello , Being kind to myself till New Year,will have my ice cream ,have taken one thing off the table hot fresh bread rolls told granddaughter not happy girl,they only live 500yards away so have told her I will make her some later in the week. Having a buffet Christmas day so plenty of meats and salad for me son in law working they are eating together as a family that evening .
I'm with you on the3 'control' aspect - I do so hate not being in control. I've always been a glass half full person but, since being diagnosed with GCA have been positively cheerful !! Weird or what ?! It's as if whatever makes others depressed has reversed with me and even I find it odd at how cheerful I have been right through so far. No matter how much pain I'm in my cheerful mood doesn't desert me.
I'm looking forward to knowing what my T score is, and rang today to chase the results. It's been 4 weeks since the scans (12th and 16th November) - to be told that "It can take up to 6 weeks for the results". I even took that with a smile - maybe the results will wipe the smile off my face (but I do hope not).
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Steroid withdrawal or PMR (undiagnosed) ?
Worse tinnitus and some head pain
How do I know my diagnosis is right. 
could I have your opinion on this 
