Go the extra mile! Or not?

[Spotty-ewe]

Hi fellow Lupies,

I’m in a bit of a dilemma as I really want to walk around Derwentwater (10 miles) next week with my friend over from Australia, and try to get £1 pledges for the Go the Extra Mile fund raiser, making up the £20 myself as I hate asking folk so will only ask close friends to pledge. 🤭

The dilemma is that I have a bad rash at present all over my body and limbs, and although the rheumatologist assured me today that my blood test results are good, she is putting me on a course of steroids for 3 weeks to stop the rash, which I’ve had for over a month now, from spreading further. I’ve also to continue the higher dose of Hydroxychloroquine. Apart from feeling VERY tired most of the time I’m not too bad and managed my Body Balance class today (mixture of Tai Chi, Yoga and Pilates) so don’t know whether to give it a go or not. I managed it in April with my husband but was doing regular walking then. I’ll need to hurry to make a decision as we leave next Wednesday for Keswick and I will have to register with Lupus UK that I’m doing the challenge to get my T-shirt in time if I am going to do it.

Any suggestions or opinions? 🤔🤷‍♀️ Thanks in advance, Spotty.

[Kevin53]

Get the T-shirt and go for it. You will have a brilliant time. Once you cross the start line you are doing the extra mile. Best wishes Kevin

[Spotty-ewe in reply to Kevin53]

Thanks for that Kevin. I’ll order the T-shirt straight away! 😄 Spotty

[panda2]

Oh yes! I'm on the go for it team. When we feel well enough and docs are on board offering extra meds and saying bloods are good, that's the time, I think. You can always slow or withdraw if you are struggling. If you do it you will remember it forever. If you don't...what will you remember?

Glad to read you ordered the T!

Panda x

[Spotty-ewe in reply to panda2]

Just ordered the T-shirt so I’m pleased to have your encouragement and support too thanks Panda. I feel better about it already and will try my best. 🏃‍♀️ Spotty

[panda2 in reply to Spotty-ewe]

Hooray! T ordered! I will cheer you on! Let us know how you go.

P x

[butterfly1964 in reply to panda2]

Go for it!!!👍and good luck jx

[Spotty-ewe in reply to butterfly1964]

Thanks for your encouragement and support Butterfly. I’ll try my best and hope for dry weather. 🙏🏻 Spotty

[maye1 in reply to Spotty-ewe]

You got this!!

And if it is too much, you can leave, no shame in that.

Xx

[Spotty-ewe in reply to maye1]

Thanks Maye, I’ll try not to let my friend down who will be walking with me, but she’ll understand if I have to bottle out. Thanks so much for your support! 😄 Spotty

[maye1 in reply to Spotty-ewe]

Have fun! Let us know how it goes

[Barbara17]

If you feel you can do it go for the it. Not sure about the steroids as they did nothing for my rash when I tried a short course and just made me feel hyperactive. But we’re all different and they may work for you. In my experience the rash does go, eventually. Have a wonderful time and let us all know how it goes. Good luck!

[Spotty-ewe in reply to Barbara17]

Thanks Barbara. How is your rash doing? Mine spread over the last month which is why the Rheumatologist has prescribed the steroids. I was on them after the Terbinafine reaction but can’t remember any side effects because I felt so generally lousy anyway. But she wants me to report back after my first week on the steroids so I feel I have to take them. I pick up the prescription tomorrow. Good to hear from you and thanks for your support.😊 Spotty.

[Barbara17 in reply to Spotty-ewe]

I’m cautiously optimistic that the rash is fading but it is taking a loooonnnggg time. However my face is definitely looking better with ‘only’ red marks left which I am able to cover with make up when I go out. I remembered Pan Stik from my 1960s youth ( it was the ultimate plook cover up!!!) and I’m pleased to say it does still does the job. Although I didn’t expect to need it all these years on. I do still have a horrible red rash on my arms and legs but they can be covered by clothing. It really is a horrible thing to have. I’m on the Zentiva brand of hydroxy which may the one you’re thinking of. Sometimes I wonder if it is actually doing anything for me but I’m frightened to stop taking it. I have a dermatology appointment on October 7th so will see what their advice is. Enjoy the Lake District and I hope the sun doesn’t shine.

[Spotty-ewe in reply to Barbara17]

I’ll keep my fingers 🤞 that your rash is fading. I think the majority of mine is too, with only the areas over my torso still being red and angry looking. Some spots have grown to patches the size of a 1p or even 2 p coin, but these too with the help of Dermavate are fading. You were very unlucky getting it on your face so thank goodness for Pan Stik! My rash luckily didn’t get beyond my hairline and scalp. Yes, it is the Zentiva brand I was thinking of . I’ll ask my GP if I can try it. Thanks again for your kind wishes Barbara. 😊 Spotty

[cpops]

I was allergic to Plaque il. Are you sure the higher dose is not what is causing the rash?

[Spotty-ewe in reply to cpops]

Thanks for your concern Cpops. Sorry to hear of your allergy. I’m on the Bristol brand of Hydroxychloroquine which I think is responsible for my gastric problems so I’m going to ask my GP for the brand that is coated (forgotten its name now - brain fog again!) when I see her on Monday. The dose was increased by my Rheumatologist a few weeks after the rash began to see if it would help - it hasn’t. Hoping the steroids will help. 🤞Spotty

[MEGS53]

Go for it. And very best wishes to you - you're a star!! xxx

[Spotty-ewe in reply to MEGS53]

Thanks so much for your kind words Meg. Pray for dry (not sunny) weather for me! Good to have your support. 🤗 Spotty

[MEGS53 in reply to Spotty-ewe]

Will do! xxx

[Hamptons]

Do it! Just book a day off the next day and day after... good luck

[Spotty-ewe in reply to Hamptons]

I’ll certainly need a few days of rest after it I’m sure! Just hope the weather and my poor old limbs don’t let me down. I’ll let you all know how it goes. 🥴 Spotty