I have suffered headaches for years, until one day I couldn't take it any more, had dumped so many pillows as my head was so tender, didn't know what was wrong. Had told my doctor several times over the years and possibly put it down to stress, menopaused, etc. he finally diagnosed me - my inflammatory marker was at 80 I have been on steroids' for the past 3.5 years, as a result I have gained 2 stone, moon faced etc., out of all my clothes, feeling generally unwell and looking that way too. Almost got a stroke last Christmas, pain from the Tempular Arthritis just blew one weekend and landed my in hospital. I am on 30mg of blood pressure meds daily since. Have pains in my head most days, hips, both arms, shin pain in my left leg, just got old and not fit for purpose. I work full time, recently took up golf which I'm enjoying. this condition has isolated me in many ways as I don't know anyone else with it as a result I have no one to talk with who understands how I am feeling. I've lost confidence in myself and struggle to be honest. Please forgive me for waffling on, I hope someone can identify with my situation and maybe offer some advice. I have been thinking of a weight loss drug to help me along, has anyone tried this and what is the view.
I have temporal Arthritis and Polymyalgia.
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jackmurphy11
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If you are still working full time, what dose of Pred. are you on? It may not be enough. I know when I was still working I was in a lot of pain and realised that I needed more steroids because of the extra effort working takes. I wonder if your pain could be lessened with more pred.
I also wonder if taking weight loss injections at this stage might just muddy the waters a bit. They are not a miracle drug even though that’s how they are being protrayed. They do have lots of side effects which I imagine you don’t need right now.
I’m sorry you feel so isolated. That is horrible when you are going through this. My advice is to use this forum as much as you like and it can become your community to some extent. It has certainly been a lifeline for me!
Really lovely to hear from you, thank you for reaching out Suzy. I'm currently on 5mg of pred. the intention is to reduce it further. I'm on a biological weekly injection Orencia and the hope is that this will take over from the pred. You are very wise to suggest that I may have enough going on without the added side effects of weight loss drugs, I guess I'm desperate to get myself back to some form of normality, I will reflect on that advice. Thank you for you're concern and sound advice. In the last five weeks or so I have pain in my arms, hips, shin, and recently my knee. I found a hot bath with Epson salts & bread soda helps with the inflammatory pain, last night I tried ibuprofen and it was very helpful. I wish you well and take care. Mary
What a pity you didn’t find us earlier -we could have helped with many of your side effects of Pred as well as making you feel part of a community.
Cutting carbs drastically will help with eight -and better than adding in another drug, which may or may not work.
Would say a return of problems you describe may indicate your Pred is just a bit too low for your PMR. If that is the case, then extra Pred would be better than adding in ibuprofen-not recommended to be used regularly alongside Pred.
Maybe have a look at the flare protocol -see link -and if that helps - drop back to 6mg rather than 5mg
The best way to deal with the weight gain of pred is to cut carbs drastically - especially processed carbs, baked goods, root veg and a lot of fruit. It is possible to lose weight like that even when on pred - I lost 35lbs over about 18 months while still on between 10 and 15mg pred and I'm not the only one. Pred changes the way our bodies process carbs - and cutting them can improve a lot of aspects of GCA and PMR.
Please be careful taking ibuprofen with pred - it increases the risks of stomach bleeds.
You have been woefully mismanaged in probably not being diagnosed in a timely manner and I'm afraid your current doctor really doesn't seem very well up on managing GCA either. Orencia/abatacept is entirely the wrong biologic to be using in GCA/PMR. The inflammatory agent in GCA is predominantly one called IL-6 and the biologic for that is tocilizumab - it has been approved in GCA for several years. Abacept is a T-cell inhibitor and that mechanism is not always involved in GCA and when it is it is has a less significant role.
You don't say what dose of pred you are on - but your general comments suggest to me it isn't enough to manage the inflammation. People who have to work usually need more pred - but most doctors fail to take that into consideration.
You haven't waffled on at all, the more we know, the better we can help you, but your pred history is also an important bit of information for us and you haven't told us that,
PS - now I see you are at 5mg - I would say you have over-reduced and are at too low a dose. Your doctor is suggesting adding in a biologic drug (the wrong one) instead of using pred properly. You aren't heading relentlessly to zero - you are looking for the lowest effective dose at any point, and you are below that. At what dose were your symptoms last well managed?
Hello there and welcome. This is a great place to 'sound off', ask any question and get support. I am relatively new (diagnosed May this year with PMR). At one point on 60mgs as issues with my eye, lost weight at that dose with a low carb diet, still losing (currently on 18mgs). There is a thing called Hi-Lo bread, only 5mgs carbs per slice, made largely of soya and seeds of various kinds. Takes a bit of getting used to but if you swap with most of your bread intake it will make a difference, lots of advice on here.
Have to say my first thought when reading your post was that your PMR was not under control and your Dr. needed some educating, unfortunately that will have to be by you. Visit the links suggested and get fully up to speed with how to manage PMR and go in confident.
I wish you well and sorry that you are feeling low at the moment but take the advice and I am sure that you will be back on the golf course in no time. 💐
Morning jackmurphy,sorry to hear of your woes.There are quite a few of us here with GCA so you are not alone.Good advice about tapering safely here,slow and steady which many of us here have learnt the hard way,loads of us mismanaged in early days with desire of “ experts “ to get us off Pred at all cost,and damn the consequences.Take your time,you will feel better about yourself before long.I lost 1 and 1/2 stone in a very few months by cutting out the naughty things,and eating lots of nice fish,veg,nuts and seeds.Treated myself now and again,and the moon face went as I got lower on the pred.I am due to introduce 5 mg this weekend on a 7 week taper.I still have days when I have done TOO much and suffer the next day,It is trying to get into the mindset that we just cannot do what we used to( hard to accept)and that we ARE ill!You are entitled to feel low,we have ALL been there and think “ why me..”. but it will get better,be kind to yourself and remember you are never alone on this forum ok?Sincere best wishes,xx💐
Welcome to the forum. You will get lots of support and advice here. Never consider yourself isolated with GCA, because there are people here who understand. I guess you can't consider reducing your hours to work part time, but if you could that would be a great help to you.
You have a range of symptoms and it might be a good idea to keep a symptom journal for a while, mapping them out against meds and activity to see if this throws any light. You are in adrenal territory as well as having ongoing symptoms.
The only way I am getting through GCA - and it has been a long journey with ups and downs - is to focus on keeping as healthy as I can through diet and exercise and positive mind so that when it finally stops, I will be in good shape. Your golf sounds perfect - physical activity in nature. If you can also review your diet, it will repay you. Lots of us use the ZOE and Michael Mosley info on this. It also gives us an interest and makes us feel we are doing something positive. Keep in touch. X
Hi there, welcome, so sorry to hear about your diagnosis. It is very tough and scary when it first happens. This is a great group and good advice. I have learned more here than from any doctor or Rheumy. Most people have never heard of the conditions and how delibating they can be. Hence there is little understanding or empathy. Sometimes it can be very lonely. When I have a bad flair and in a lot of pain, friends have passed the comment 'but you look great' 🤦♀️😩 I have had to argue re tapering and when I have followed the advice of Dorset Lady I have been able to manage my flairs better. Stay strong, I am also Irish and live on west coast. You can dm me if you ever need to rant. Stay strong.
Good morning, your story sounds like a mirror or my own, I kept having various tests for a long time only to be told I was menopausal, had fibromyalgia stress, etc etc until I couldn't take feeling so awful and had headaches every day. It coincided with the first 2020 lockdown and I fortunately got blood tests in May that year. My inflammatory markers where both in the 120s range. My GP was great and got things under control and I have a good rheumy, but its been tough. I have put on 2 stone and my nice clothes don't fit. I have put them away until I can get into them again. I cant cope with full time work but do now receive my pension and run my business very part time. I struggle with steroid reductions but have got down to 4.5mg pred. I cope by not doing to much, and usually have a rest in the afternoon and often sleep, I have tried to learn to listen to what my body is saying, well most of the time. If I have a busy day I try to have a slower time next day and not arrange things for several days in a row. I try to get out and meet friends if I am up to it and keep my interests going. In the early days I found meditation and mindfulness helpful. I do something called chi gong now which is very calm and slow. Its on you tube and the person I watch is called Jeffery Chand at chi gong for vitality if you fancy having a go. He has lots of very short guided routines that are good for achey days. I hope you soon feel a bit brighter and I am sorry if this is rather long but I wanted to say you are never alone on this forum we all understand.
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GCA temporal arteritis 
Am I free of polymyalgia?
Arthritis, PMR or both.
Maybe not Polymyalgia
Inflammatory arthritis 
