it's back

[Content1]

After over 5 years with no symptoms, PMR and GCA have suddenly returned. Dr has put me back on steroids, so here we go again. Nobody seems to know why this suddenly happens.

[PMRpro Ambassador]

Oh hard luck - but as you know, it happens. Everyone I know who has had it twice says the two episodes were totally different. All the best for an easy ride this time round.

[SnazzyD]

Oh no! That’s not on! Really sorry.

Same as before?

[DorsetLady PMRGCAuk volunteer]

Sorry to hear that… but it does happen unfortunately. Hope this time is easier…

.

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[Bachfugue]

This is such bad luck and you have my sympathies. Hope this time around your journey is quicker and easier

[CarolF1312]

So sorry to hear that. You must be devastated. Hope you get it under control quickly. Let us know how you get on🤗

[Content1]

Thank you all for your support and encouragement. Once again the wonder drug has cleared the pain, now I discover what side effects it's going to give me this time! So far, after 3 days, I've had loss of sleep, hypo one minute depressed the next and gained 3lb. What a rollercoaster!

[PMRpro Ambassador in reply to Content1]

Cut your carbs!!! But in 3 days 3lb weight gain is fluid and cutting salt and carbs will help with that,

[Content1 in reply to PMRpro]

Thanks, tricky isn't it. I don't eat bread, pasta or many potatoes, but I do have ryvita for lunch and shredded wheat for breakfast. Don't add salt to anything. Don't eat cake or biscuits. Advice always welcome thanks.

[PMRpro Ambassador in reply to Content1]

Not sure of the carbs in ryvita but fair bit in shredded wheat I'd think! Just looked it up and 1 portion has 36g carbs and that is without the milk and any sugar you might add, Ryvita says 13g per serving. So assuming you are having their standard serving - that is 50g carbs before you add anything else. Snazzy and I needed to be down in the low 20s to stop us gaining weight!! It all adds up and it is surprising how quickly. It isn't fair but then, neither is life!

The best advice I can give is keep a food diary, weigh stuff and look up the carbs online - it is amazing where carbs hide ...

[Content1 in reply to PMRpro]

Thanks for that. I only have 1 shredded wheat no sugar and skimmed milk. Any suggestions for low carb cereal or don't they exist! I have 2 ryvita for lunch, not quite sure what I'll replace them with.

[PMRpro Ambassador in reply to Content1]

Not really - it is the chance for eggs and fish and whatever for breakfast! Really it is a case of rethinking what you use for meals. I have never liked cereals at breakfast - I obviously should have been born into a different culture! Having had trips all over the world I have quite different expectations of various meals, Lunch for me tends to be salads.

This site is quite good for getting your head around what you CAN eat and also has suggestions for meals and recipes

dietdoctor.com/low-carb

[Content1 in reply to PMRpro]

Thank you.

[pammy_hyland in reply to Content1]

I'm completely keto now its low carb and I have been on it for a year and delivered to my door... I feel the best I've felt in all 12 years I've had PMR & ..GCA..xx

[Content1 in reply to pammy_hyland]

What do you buy?

[pammy_hyland in reply to Content1]

I buy my preprepared homemade Keto dinners they are delivered every Sunday to my door ..a local lady started the business and now she does mail order for the whole country too... they are Fab...she's called Kate and her business is called Keto Kitchen Lytham ..in Lytham-St-Annes where I live ...read up about Keto it's a revolution..I I don't do it to loose weight anymore as I'm the slimmest I've been since I was young but it's just so good for my health ..the plan is very reasonable too...take a look they have a website ...

[Content1 in reply to pammy_hyland]

Thanks, I will. Goodnight.

[pammy_hyland in reply to Content1]

There is loads on Google its a way of life ..but more keto products are coming on the market now ...its easy once you understand as you have to stick to ketosis for it to work ..its been good for my pre- diabetes too....Night xx

[MamaBeagle in reply to Content1]

Only 4grams of carbs in a ryvita! I have one for lunch most days ....then of course it depends what you put on it 🤔

[DorsetLady PMRGCAuk volunteer in reply to Content1]

Hopefully sleep and mental swings will settle as your body gets used to the Pred again...

[Content1 in reply to DorsetLady]

Let's hope so, vertigo really bad today, but at least I got 4 hours sleep last night, which is the first since weds! Oh well, pain eased. Thanks.

[Hrblock57 in reply to Content1]

Did both GCA and PMR come back? what dosage of wonder drug did you restart with? I am very sorry you have to go thru it again. I am still dealing with GCA and it's been almost 3 years now . .CRP up and down . Best of luck I hope it will be much easier than your first one.

[Content1 in reply to Hrblock57]

Hi, sorry you're having such a rough time. Dr thinks so, but because I waited so long before going to see him he's not sure. Had blood tests and seeing him again on Monday. He wanted to start me on 60mg, but I refused. I know his reasons, but in the end we agreed on 20 until bloods come back. Vertigo really bad this time. Hope you soon see improvement.

[Plains]

so sorry to hear this. Hope it gets under control quickly and is easier this time for you.🌼

[Abbeys]

I am sorry your GCA has returned after 5 years. Can I ask what your symptoms were to alert you to it's return ? And were they different to the first time ?Thanks.

[Content1 in reply to Abbeys]

Hi, terrible headaches on temples and forehead, pain everywhere but particularly neck, shoulders etc and total exhaustion, could barely hold my head up. The first time I just woke up one day and couldn't get out of bed! Take care.

[Zebedee44]

I’m so sorry to read your post, what a horrid shock for it to all come back with a vengeance. My sympathies. Chrissie

[Content1 in reply to Zebedee44]

Thank you, climbing that hill again!

[pammy_hyland]

I believe its always there and lays dormant in your body as looking back I had alot of the smaller symptoms for years before a time of severe stress when it became full blown and would have been wheelchair bound if my GP wasn't Knowledgeable about PMR & GCA.... I've had it over 12 years and am on a maintenence dose of 4 mg for years now but I've had flares on tapering and again high times of stress..I done think it ever leaves you like alot of Auto immune conditions...So iI'm on my 4mg for life now.. I hope you are Comfy and pain free on your steriods again ? Xx

[Content1 in reply to pammy_hyland]

So sad that you've had to cope with this for so long. I am pain free, so that's good. Totally exhausted today, but I've been a bit busy, so I'm not surprised. If it weren't for the flipping side effects I wouldn't mind. Still have no feeling in tips of my toes since last time. I put on 5 stone last time and it's taken me until 6 months ago to loose that! I'm heavy anyway, but moved into the morbidly obese stage for a while, which I will not let happen again. Thanks for your support, hope you stay well.

[pammy_hyland in reply to Content1]

Thanks I do look after myself.....You'd loose some of the weight if you taper down and stay on a maintenance dose like me and no yo-yoing..I'm completely Keto now (which is low carb no sugar) and have been for a year ...I have it delivered to my door weekly at a great price it keeps your weight down but most of all I feel fantastic and don't get headaches at all now ...look after and be kind to yourself...xx

[PMRpro Ambassador in reply to pammy_hyland]

Is that one of these kit-type meals? Is it worth it and good? My daughter used to use them, reckoned it worked out cost-effective because all the silly little bits were included.

[pammy_hyland in reply to PMRpro]

No its all cooked and ready ..its a local lady Kate who started keto to loose weight and found her health was so much better (she has a few disorders) and as asked she opened a local business with local delivery only...it just grew and grew... now she has a shop and does mail order as well all round the country but still dies all the cooking herself ...Her food is lovely..they do cakes and snacks too...its changed my life xx

[PMRpro Ambassador in reply to pammy_hyland]

Brilliant! What is the name? If she does mail order ...

[PMRpro Ambassador in reply to PMRpro]

Ketokitchenlytham?????

[pammy_hyland in reply to PMRpro]

Yes Keto Kichen Lytham they have a Web page where you can order weekly..You have to stay on ketosis and can't go in and out if its to work fully ..There is alot on Google and Kate and her team are fab at explaining anything...but ask me if you have any questions anytime Xx

[Jampad]

I was in remission for six months and then GCA came back. The rheumatologist started me back on 60 mg prednisolone. One good thing is that I caught it quickly this time. It took three months to be diagnosed first time around. This time, as soon as I had jaw claudication I knew GCA was back. I gained 28 pounds last time and have already gained 6 lbs.

[Blossom20]

So sorry to hear its come back. Glad to hear you've managed to be pain free on 20mg. Rest up! You know the score now.Regarding the weight gain. Michael Moseley's Fast 800 plan and advice is easy to follow. I think they are doing a promotion now. I haven't done it myself but a friend has. I like his little podcasts too.

Wishing you all the best.