Hi I've started Prednisolone for GCA and see the doctor on Friday, my blood result over the phone this morning was ' abnormal and as expected'! I may have PMR as well. My question to you is as I'm just 55 and still working, will I be able to continue?
Are there any groups that meet up? Do you gain or lose weight? So many things to consider!
PMR and GCA are really the same disorder - and PMR can be a symptom of GCA.
Your questions are next to impossible to answer without a lot more info. Some people are able continue to work, some work for a while and finally give up and some stop work initially on sick leave and return later, often to shorter hours or maybe a different post. But GCA is a serious systemic illness - which does tend to respond better to pred PLUS rest!
It is possible to avoid/minimise weight gain when taking pred by cutting carbs drastically - you will find loads of threads about that! It does need some discipline but it can be done.
This is a list of the support groups:
Hi JanineJ,
And welcome.
There are some patients on here who continue to work, although I imagine it’s not very easy. Whatever your diagnosis is I guess you will be off work for a little while until things settle down, although your best bet is to speak to your HR people, they will be able to explain what your situation is regarding time off, change of work load and generally what they can do to make your life easier at work.
You won’t necessarily put on weight, although the Pred does have a tendency to redistribute it around somewhat giving you the inevitable moon face beloved by us all! You will feel hungrier, so try and stick to a low carb diet and plenty of veg and fruit (some are better than others) and avoid those nice sticky cakes etc for a while.
Your hair will return, although maybe not quite as before! Once your body gets back on a even keel, which can take some time, about 6 months is usual. Some reckon they have curls for the first time in their life - I can’t say I always did! Not sure whether you can get a wig on NHS, you may and it’s certainly worth asking, but it’s not like chemo you don’t lose all your hair, so I doubt it!
If you go to the PMRGCAuk web page - tap blue banner at top of screen - you will find a list of groups or just tell us where you live (nearest town).
Also have a read of this, it may help you understand what’s ahead - and please come back with any questions
healthunlocked.com/pmrgcauk...
Take care
Hi Janine, I am so sorry you have been diagnosed with GCA. I always ask for a printout of my blood tests which over time can be really useful. In fact recently I am now able to access them over the internet which is even better.
Hi Janine, I am a bit older (63) and was diagnosed in November 2017. My symptoms were typical GCA, but after seeing the Rheumy and reviewing my 18-24 month history at the GP, we both agreed I have had PMR for a few years, but it went undiagnosed/untreated. I believe everyone is different and what works for some does not work for others... I have not been able to work or continue my end of life companioning at the hospice, since November, but that is because of a couple reasons... I have had a difficult time with the steroids and had to be increased to 80 mg, because I tapered down to aggressively and crashed and burned... So I had to start over at a higher dose. Also I have from the beginning, been terribly exhausted and fatigued.... I have no (zero, zip, none) energy or stamina. A lot of my problem is that I am on such high doses of the Pred.... you may be totally different!!! I wish you the best of luck and the best advice I can give you is try to flow with it... I fought it for like 2 months and that just made everything worse!!!!! Rest, rest and rest and go with it.
I will read the comments made by the "experts" now and if I have learned my lesson! : )
Hello,
I was 54 when last March I suddenly came down with GCA. I was working and very active. Initially i couldn’t work due to steroid side effects but decided that this was not an illness that one could just push through whilst trying to carry on as if nothing had changed. I haven’t worked since. Accepting that one’s world has changed makes life easier and that the old one at the very least needs to be put on hold. Proper recouperation is key and that may take way longer than you’d like. It isn’t all doom and gloom because you just find different challenges and pleasures. It usually hits those of us who are all things to everyone and are capable doers, so being told to rest feels like a sentence to begin with. Your body needs to get better while the Pred stops bad things happening and you fix yourself with nurturing and that often doesn’t come naturally either for many of us!
Hi and welcome. So sorry you have been diagnosed with GCA/PMR.
My journey so far and fingers crossed has allowed me continue work. I was diagnosed with PMR and started treatment just before Xmas Holidays 2017, on 20mgs. I responded well to Prednisone and was able to resume work after the holidays. I am a psychologist in private practice seeing between 12-17 patient hours a week. Being my own boss, having a short driving commute, and not requiring physical exertion has made work possible. I could easily see how changes in any of those factors might have made it too difficult. Also taking Pred before the morning cytokines dumping allowed me to awaken without stiffness and pain, able to start my day pretty easily.
I haven’t suffered the intense fatigue that some have. I don’t know why. However as I’ve tapered I’ve found late afternoon weakness has caused a struggle and I’ve changed my work hours to be able to do justice to my clients. I’ve been open with them about taking meds that lower my immune system and have asked that they err on the safe side and stay home if they are feeling sick. This year, I’ve kept cough drops and hand sanitizer next to the usual box of tissues.
I got good advice about diet, the low carb and no sugar recommendations, and have been able to avoid weight gain and moon face. However, I have found that 14 months into treatment my muscles and joints are weaker and aches and pains seem to come and go randomly. I was more able to exercise at higher doses of Pred than I am now at 6mg.. I’m waiting for my body to give me permission to exercise again. I think it will be a while. I’ve read here that it is wise to be very careful about physical activity since vasculitis reduces the blood to affected areas making muscles and tendons slower to heal from exertion.
Every stage of this treatment brings its own challenges, but it is not fatal and life, while definitely altered, does regain some sense of normalcy.
Good luck to you!
Hi Janine,
I very much like you apart from from my anatomy as I'm a male spices lol.
I got diagnosed in Jan 2017 with pmr was off work for best part of 4 months started back on phased back system was doing ok up till December then had a nasty virus which knocked me for six.
Had really bad head pain so doctor panicked put steriods up to 30mg think I had Gca but head scan was all clear so steroids reduced now down to 10mg .
Has far as work I have managed but have been off sick since beginning of Jan again looking at returning mid March but have found that I have to take it easy in fact very easy at home leaving DIY work to the side.
Work is very physical for me has I work in security but you can only do what you can do.
Hi Janine,
I started with PMR in September 2017, at first unable to move about but on Prednisolone I feel very good. The problem is getting off the steroids, Started on 30mg, going down to 20mg then 10mg in a month. Then it's down 1mg every 4 to 6 week, and am now on 6mg. I have the hand problem, so I sit at work with sports gloves on in the morning, which most days I can remove at lunch time.
Yes I am still at work, I do sit in a office, by need to get up and move about every hour or so. If I can lift my hands above my head in the morning I am having a good day.
Good Look.
I am just about 6 years in with PMR, having started at 52 yrs. I am a self-employed counsellor, working from home and was able to work for a few years before it got too difficult, and I have reduced my work in 2 stages. I have now got burnt out and am planning to retire from counselling in July. In retrospect, I wonder if my PMR journey has been so difficult because I fought it for so long. I am now listening to my body and realising that perhaps I have given enough to others and have to look after myself instead.This is not easy for me as I have looked after others my whole life, starting with my own family!
My advice, for what it is worth, is to accept that this is a life changing illness and needs to be taken seriously.
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