Recently diagnosed with GCA

[Jeannie49]

Hello everyone, I'm new here and have had a rough ride since February (taken to hospital on my 70th birthday with agonising headaches). I've been on prednisolone since then, starting on 60mg a day, gradually reducing to 10 mg. However, i had a bad flare up a month ago, saw the rheumo who decided to introduce leflunomide. All well and good, but the new med has horrible side effects Inc violent diarrhoea. Steroids have made me fat and fed up. And at the time of writing, that's what i am. Just needed to let off steam.

[Hidden]

Welcome jeannie49, not the best birthday present that's for sure. If you have read any existing threads you will know that 60mg in February to 10mg now is way, way too fast whether you are on leflunomide or not. I am on a dmard and it took 8 weeks for my body to accept it. I "only" have PMR and had a slower reduction that you have had for GCA.

I am sorry but understand why you are fed up and feel fat. But things will improve its very early days. Have you cut down on processed and simple carbs like bread, pasta, rice, pastries, cakes, sweets? If you follow low good carbs high good fat diet you will find yourself feeling better and it will stabilise and//or help you loose weight. I have lost over 2st on pred, albeit on lower initial dose than you.

Come along anytime to let off steam. We all feel fed up along the way. 🌻

[jinasc]

Hi and welcome to where you hoped you would never be.

I notice you were just diagnosed in February and started on 60mg You are down now down to 10mg since your start date and that reduction has been far to fast.

How soon were you put on Leflunomide (a steroid sparing agent) was it when you had the flare and were down to 10mg?

You need to visit your GP straight away as leflunomide can cause problems and it could mean that you should stop taking it and go back to your pred at a high enough dose to get hold of the GCA.

It took me 6 months to get down to 20mg and then I had a 'flare' and back up to 40mg.

I suggest you follow this link and see if it can help your weight problem.

pmr-gca-northeast.org.uk/gr... when you get there click on the Suumer newsletter 2016 and go to page 4.

Please let us know how you get on.

[PMRpro Ambassador]

I'm sure you do - but welcome here. Where you will learn how to live better with GCA - and pred.

I think I am safe in saying that your flare was a direct result of a doctor who doesn't know enough about GCA reducing your steroid dose far far too fast. Most experts would take more like a year to get to 10mg from 60mg starting dose, not 4 months. This

rcpe.ac.uk/sites/default/fi...

gives a far more reasonable approach and with them you would probably be still on 30mg or possibly just going to 20mg.

GCA commonly flares in the first 18 months of treatment - and mostly because of reductions that are too fast. If you go about it like the paper I've mentioned you are unlikely to need leflunomide - a common side effect is diarrhoea that prevents the patient having a normal lifestyle. Another effect is neuropathy so do watch out for that.

Most of the side effects of pred, even weight gain at high doses can be avoided or minimised when you know how as many will tell you here.

But that's enough for now - others will be along soon.

[Dancingrosie]

Hi jeannie49, I was just like you at the start of my journey with gca and PMR . I put on loads of weight, my hair had a mind of its own, hot flushes, out of breath and palpitations with a face colour of a tomato, that was 3 and a half years ago. I am still on 3mg but by doing the dead slow method and a couple of flares things have settled down. Still have a way to go but it’s worth it to be pain free. Just hang in there.

[Yellowbluebell]

Just as a comparison I was diagnosed in Oct 18 with pmr and I am just this week going to 9.5mg under the guidance of my gp and rheumy. With you having started on 60mg and being at 10mg now is ridiculously fast. I have put on weight but because I was naughty about raiding the fridge last year. Other than a slightly more bad tempered temperament and going for a wee more often I have not suffered any more side effects by being on pred. Please take the advice of the replys you have received already from very experienced forum membersx

[Snowy12]

Hi, I started on 60mg pred April 13th this year and Ive been on 45mg for the last 2 weeks I’ve gone down to 40mg today but my GP had told me to manage my reduction myself. In fact she told me to stay on 45mg until I see the Rheumatologist on 17th June. I decided after a good couple of days I would try and drop another 5mg as I too am fed up of the weight but only on my moon face.

I’ve had to get one of those travel pillows filled with beans and adapt it to secure at the front with Velcro as I have a double chin that is so heavy and tight that as the day goes on I can’t hold it up on without the help of the pillow. My husband said I look like Donald Trump and my daughter said if you take a photo of your head you could believe you’d put on 4 stone. Lovely aren’t they 😂

[PMRpro Ambassador in reply to Snowy12]

Nothing like loving support is there - and that is nothing like loving support!

You have cut carbs drastically and salt as well haven't you? Taking all processed carbs out of your diet does both at a stroke - and really does help.

[Hidden in reply to Snowy12]

Oh dear...such loving insults. 😂😂😂 It's hard to cut carbs but it gets easier. Add up the number of grand of carbs you have now and just cut by 25% for a week. The week after that drop to 50%. I have linked to diabetes uk because it's a simple explanation of carbs. Hopefully that will help.

diabetes.co.uk/diet/carbohy...

[alvertta in reply to Snowy12]

Family support. Grrr.

[alvertta in reply to Snowy12]

My neck is same. So thick I have to hold my book up at Eye level read. This GCA is so much fun.

[SnazzyD]

Hello and welcome. Goodness that was a fast reduction, no wonder you flared. Just to compare, what you were made to do in a few months took me 10 months with no upsets along the way. A very low carb and salt diet meant I didn’t put on weight or fluid. Given that the Leflunomide is upsetting your gut, is there any chance you can stop that and start Pred again on a reasonable dose and reduce much more slowly. More importantly is there any chance you can see another doctor?

[Jeannie49]

Thank you all for your replies. I'm feeling very muddled and tired now and don't quite know what to do. I'm seeing the rheumo next week but don't have the confidence to challenge him. However, I've got a good relationship with my gp who I'm seeing the week after so well talk it through with him.

[alvertta in reply to Jeannie49]

I was diagnosed with GCA in October 2018. Started at 60. This week on 22. Slow!!!

[alvertta in reply to Jeannie49]

Re food, I was on vacation for two weeks and ate and drank everything. Bad. My blood test results after two weeks of indulgence were terrible. It only took two weeks to get back on track. No alcohol. No sugar. No gluten. No carbs.

[Rimmy in reply to Jeannie49]

Try not to be intimidated by specialists - after all they should really be there to 'help' you. This forum is great for searching various aspects such as tapering with GCA etc and often posts provide links to credible articles which discuss the reality of such things as the average duration of this disease (5-6 years) - which many medicos seem to be totally unaware of. You can always print out info for them and ask them to read it and comment - after all it is you who will suffer the consequences of inappropriate treatment - so stay strong.

Best wishes