My thumb popped out? :)

[Fieldofdreams]

Hello PMRGCA friends,

My story.

Diagnosed GCA 13th Aug onto 60 mg. Down to 50 mg quite quickly by rheumy in 2 weeks then to 40 mg by week 4. He wants me to go to 30 next Friday... I am very nervous. (get to the thumb in a moment)

I still experience some kind of temple pain every day - jaw tweaks and then jumpy eye. He wants me to be on 20 mg by 5th Oct. Realised thanks to this forum and DorsetLady and SnazzyD that this may all be a bit quick... and that each time i go down i have 4 to 5 rough days. I have to cope with some short work bouts and travelling so if I leave the drop from 40 to 50 until thats over (2 weeks time) I dont feel it will be wrong. Maybe only 5 at a time??

My GP has asked to see me tomorrow so I am going to discuss it with her. She was straight off the mark with diagnosis within 5 mins of seeing me - I was so so lucky.

Like Jennifer15 on here I am on a great diet, no sugar, no carbs, supplements (I am vegan) and have managed not to put on weight except for the moon face.

But today, I was sitting on a wooden floor talking to some students and put both arms and hands back to prop myself up and my thumb doubled back with such a crack and a pop that the poor girl who saw it was nearly sick! I tried not to curse as the pain was shocking - they did say "dont worry miss swear if you want too we are all over 18". Couldn't bend it and frozen peas were applied. I am flexible but not hyper mobile joints and this has never happened before. I was urged to go to A&E but after half an hour of peas I left the studio to make my way home and I could just about move it. it thawed out and I thought its not broken i will see what the doctor says in the morning. I have put a support on it.

The good side to this is that I have treated myself to a raspberry smoothie tomorrow I dont have a freezer so I thought i will buy some frozen peas on the way home as they mould around limbs easier than an ice pack. But when they thaw they are cold mushy peas and here in the north we only like our mushy peas with chips and gravy (or curry sauce on special occasions :)) but as I am off carbs they are banned! so I got frozen raspberries instead for my protein shake smoothie in the morning! there is always a silver lining.

Anyway, the thumb saga I feel that this was just a freak accident but has anyone else had anything like this? Is it a sign of something else to welcome in?

I am 37 days in now.

Having bone density test on Sept 30. Taking calcium and vit E and aspirin and omazaprone.

Insomnia: The other thing I have read is taking Pred at night... I have now got insomnia and wake up regularly at 3 am .... I am getting more sleep now that I have had in the last ten years but is the insomnia something I can moderate with taking all or some pred at night?

What a journey it is and its still a good day!

Thank you everyone for listening. x

[SheffieldJane]

Hats off to you for your good cheer in the face of adversity ! When your Pred dose is lower, perhaps you could wean yourself off the Omeprazole. Believe it or not, it has a detrimental effect on the bones. I have managed very well taking Pred with live, organic, Greek Yoghurt first thing in the morning. My dose has never been higher than 20 mgs though.

My insomnia was greatly helped by taking 10 mgs of Amitriptylin, one hour before bedtime. It seemed to make me comfortable enough to drift off.you have my sympathy for your thumb incident. My guess is that it was a freak accident,but who knows with these diseases and their medications.

[Fieldofdreams in reply to SheffieldJane]

thank you Jane. I wasn't on omaprazalone at first only when rheumy added in aspirin after 3 weeks I am seemed to be okay - I think I will see if I can manage without it. funny thing last night, my little white cat who is my little shadow hurt his right paw.... poor little thing, either that or he is so sensitive to loving me that he is coming out in sympathy... we are currently both cuddled up

[SheffieldJane in reply to Fieldofdreams]

What a sweet image! I love cats more as I get older but my OH has his heart set on a dog when he retires.

[Fieldofdreams in reply to SheffieldJane]

he can have a dog, you HAVE to have a cat.. they are just the best. I think the Egyptians had it right - they worshiped them as gods and spirits and from my experience, there is definitely a connection of some kind - if you are that way inclined.

When I went to the Greek island of Paros recently (been before)on a chill and yoga with my GCA diagnosis and a confused head... the first thing I did was stroll down to the beach to see the lovely local cats (well cared for by a German lady who lives there). A little ginger one came called Lekke simply sat by my side like a little Egyptian god. He just looked up and me and lent on my leg.... he was poorly himself and all week we (and some of his friends) sat each morning on the beach... I used to have a Burmese red (dark ginger) and every time I have been poorly a cat has helped me (I know it sounds bonkers). years ago i went to Italy to do some yoga when my brother passed away. there were no cats at the retreat in the hills until one day a ginger strolled in and sat next to me. he sat outside my bedroom door (and then snook on the bed), and just spent time with me. When I asked about him a few weeks later after I came home the retreat owner said he had gone. Very calmly he just said he was there for you because he knew you needed him.... 4 years later I got my own boy and girl cat and one was a Llewani the red one. he was killed on the road aged four and I broke my heart. He was my little shadow, slept around my neck and when I was ill just snuggle up. He used to tour the neighbours too! Now I still have his sister who is the same and a little white stray cat called Oliver who has kind of snook into Llewni's role. But it was little Lekke on Paros that slowly brought me back to life re GCA. They dont expect anything but give you so much... gosh hark at me. rambling on about cats.

I havent mastered how to upload photos on here yet but when I do I will send you a pic of lekke. I live on my own and travel for work etc but my cats are the things that keep me sane. Unlike dogs they are not dependent on you for everything and when you stroke them the stresses just melt away...

have a great day. x

[SheffieldJane in reply to Fieldofdreams]

Beautiful stories! When you do a new post there is an option at the bottom to add a photo. If you tap on that you get a selection of your own saved photos and you just choose one. You can’t add a photo to an on-going thread. Your little cats have to star in their own post. This is how it works with my iPad anyway.

I love the song birds in my garden, this puts me off having a cat. I can imagine that it would be life enhancing for me though.

[Fieldofdreams in reply to SheffieldJane]

thats great Jane thank you. I will try that for sure. Yes, the birds my little girl cat Katie brings them in sometimes and that does break my heart. Many a night I have stayed up with a little bird nursing it and taking it to my local bird sanctuary... pigeons too! I save 50% ... mice too... most of those get saved and re released.. 2 am chasing a mouse lol... with the insomnia now thats okay, ha ha ha, Bet your OH would love that ... not!

[piglette in reply to Fieldofdreams]

I suppose the difference is you own a dog, a cat owns you!

[Fieldofdreams in reply to piglette]

Oh yes you are so right lol lol. I am wrapped around their tiny cute paws... . How do they do it lol... i exist to serve them 😾

[Mikb]

I was diagnosed in May 2017 and am only now down to 4 mgs from 80 mgs. It seems as if you are on a really fast taper. That doesn't answer the thumb question, but to that end I was walking fine one day then popped my Achilles' tendon. Weird things happen on prednisone. I am sure the experts will be on to give you good advice but as far as the insomnia goes, I have GCA and was advised to take full dose in the morning to help counterattack the insomnia. I can't say it really helped at the higher doses but I am usually sleeping better now.

[Fieldofdreams in reply to Mikb]

Wow, Mikb thats brillliant! Down from 80mg to 4 mgs in 15 months... how quickly did you taper? I hope your Achilles tendon repaired well. Glad to hear you are sleeping better now and almost off Pred. Good luck.

[Rimmy]

Ouch !!! you seem however to have taken this nasty event in your stride. I am however doubting this is caused by your relatively recent taking of Pred - but it is possible as some people respond much more quickly than others with a weakening of muscle/tendon structures.But I am inclined to think this was just a 'freaky' thing at this point - altough don't try that 'trick' again any time soon !! Agree also that this taper seems very fast....

Hope your thumb heals up fast.

Best wishes

Rimmy

[Fieldofdreams in reply to Rimmy]

Hi Rimmy, many thanks for your reply. yes I think it was just a freak thing. I was feeling good yesterday and was talking to some lovely dancing students (I am an x dancer) about acting and talking about dramatic extremes and how to portray them. I think they have learnt the lesson of one way of how to portray extreme pain with an audience lol.

All best wishes

[Rimmy in reply to Fieldofdreams]

'Drama' is fine of course when we are 'pretending' and you would have to be a dedicated teacher to 'model' THAT extremity - but you clearly have a resilient personality - I gather this is something most dancers need !

[DorsetLady PMRGCAuk volunteer]

Hi,

As others have said -ouch!

As for taking Pred at night, personally Inthink if you’re taking high doses it’s more likely to keep you awake during the night.

Usual recommendation is take full dose in morning. Sometimes we suggest spitting dose, but usually that if dose doesn’t last full 24 hours, although I wouldn’t do that with GCA, only with PMR.

Recent studies have shown that it doesn’t make a lot of difference in GCA, but personally I think a single bigger dose it’s better - and that always used to be the preferred option of doctors.

[Fieldofdreams in reply to DorsetLady]

thank you so much DL. Hope you are well today. Thank you for all your great advice.

[PMRpro Ambassador]

Only one way to find out ...

[arthur463]

I haven't read all of your replies. Has anyone mentioned Alendronic Acid? It apparently hardens your bones to help to fight osteoporosis which can be a side-effect from taking preds. There is a downside though - harder bones are less prone to general dissolving and crush fractures but are more prone to snapping, I understand. I believe that the Medics only recommend it for a limited period.

I don't know enough about all this, so I suggest that you have a read-up - and wait to see whether DorsetLady and PMRpro have some answers.

[Fieldofdreams in reply to arthur463]

thank you so much Arthur. I hope you are keeping well.