Coffee and Chat

[misty14]

Hi everyone

Just to let you know north Devon lupus group are having their coffee and chat get together on Tuesday 9 th July at 11am at the Barnstaple Hotel.

Everyone very welcome as it's a special one celebrating 10 years of these coffee and chats.

Hope your all keeping as cool as possible. X

[weathervane]

Wish i lived near enough to attend !! Hope it goes well 😀. Are you keeping well at the moment ?

[misty14 in reply to weathervane]

Thanks so much weathervane for your lovely message!. It would be great to meet you too as I've loved our chats!. Hope your doing well and did your son have his shoulder steroid injection?. Hope it's helped and he's doing well too.

I've been having problems with Hydroxy side effects despite changing brands and it looks like I can tolerate 200 mg the best rather than 400 mg!. I've made the steroid reduction to 6 mg and thanks to Hydroxy coped the best with it!. Yesterday I felt very well so did something I haven't done in months and went into town to collect my new glasses and looked in two shops . Today a different story with aches and bad toe pain but no regrets as achievement felt so good!. It's a shame we pay such a price like you did for doing normal things that others take for granted!. Hope you've had a good weekend. Xx😊💕

[weathervane in reply to misty14]

Hi there, no injection at moment as range of movement is good despite the pain , rheumy got his appointment moved forward with dermatologist, however he has started a new job and that is going well !

Sorry you are having a bad time with the meds , but great news about steroid reduction. It’s good to push yourself sometimes even though you suffer afterwards, my husband keeps telling me that if you don’t use it you’ll lose it !!!! There are definitely days i can manage more than others !

Have a lovely time Tuesday, hope all goes well lots of coffee , cake and chat 😀😀 xxxx

[misty14 in reply to weathervane]

Hi weathervane, thanks for your lovely message. Glad your son has a new job and it's going well. Hope it's more permanent for him. Hope too his Dermy appt is helpful as it's been brought forward instead of a steroid injection!. It's good that's always a possibility if it stiffens up!. Do an update when he goes.

I agree with you both on doing things. Haven't recovered from Sat yet but still did coffee and had a lovely time!. Good help re Hydroxy. It's a good idea to stay on 200 mg as 400 mg is too toxic and this is why we're getting side effects!. I'm better on 200 mg and condition is ok too apart from this second toe. And ankles!. Found another Lupie today who has same second toe problem so it could be the arthritis!. Just feels great to chat to understanding people!. It's a shame your so remote where you are!. Are you having this heat?. Hope your coping. TAKE CAREXx😊💕

[weathervane in reply to misty14]

Hi Misty , just back with my son, the dermatologist is lovely guy, great listener . He looked at the photo and compared them to photos of initial photos , he can see a slight deterioration , however the methotrexate increase will take 3 months to fully kick in so will review in October. He might have to increase the hydroxy to 400mg but will review in October, he has been on that level before with no problems.

Sorry to hear you are so tired , its so frustrating when you enjoy yourself but suffer for days afterwards. Strangely i have pain in my second toe, i was putting it down to the heat ! My DIP joints in both index fingers are also playing up with sharp pains . The heat can be hard to cope with , ive finally bought a small fan , i use it when im drying my hair as I get so warm, i makes a big difference. I went to get one last year and they were sold out !! How are you coping with the heat , if you are wearing lighter footwear it could be a factor with the toe pain ??

Look after yourself and hope to hear from you again soon, take care xxx

[misty14 in reply to weathervane]

Hi weathervane, so pleased your son's Dermy is easy to talk to!. What a difference it makes. Amazing that the increased dose of MXT will take 3 months to fully kick in. Didn't think it would be that long so he's got good chance of improvement!. Good they'll review him in three months , keeping a close eye on these changes and he was ok on 400 mg Hydroxy!. You must feel good relief too. It's a popular drug, used a lot!. Hope his new job is working out well.

Sorry your second toe and hand joints are painful. Could well be the arthritis and this heat isn't good for joints either!. It's gone humid here that always makes me ache. So funny weathervane what you said about wearing different shoes will affect toes!. I'd had the same thought and have put the orthitics I've got in my sandals. No real help yet!. I'm going to podiatry on the 22 /7 and I may have found what my toe pain is!. Apparently it's quite a common toe to have problems either caused by the arthritis or previous fractures like I had. There's a ligament at the base of it that can be inflamed and it's called capsulitis! and is very painful. Swelling at base of toe another symptom of it. A podiatrist can give a lot of help so I'm going to right place.

I might do a forum post to see if others have had same problem!. Take Care.

Enjoy your fan, Good idea and I hope you have a lovely weekend. Xx😊💕

[weathervane in reply to misty14]

Lightbulb moment!! I broke that toe years ago !!!! Maybe its a factor! Apparently it quite common to have a broken toe without knowing it , find that hard to believe as the fracture i had hurt ! Humid heat is hard to cope with but I find a dry heat is quite therapeutic . Good luck with the podiatrist , ive never been to one so interested to know if you have success!

The fan is still spinning, very well priced in Argos ! Best wishes xxx

[misty14 in reply to weathervane]

Oh definitely weathervane, you can get arthritis developing in old injuries like a fracture later on!. I agree that they hurt so you know about them but I was shocked to be told I'd had a previous metatarsal break I'd not known about at all!. Didn't think it was possible!. Thanks for your podiatrist good wishes, I'll let you know how I get on. Hope your pain settles. TAKE CAREXx

[Wendy39]

Hello lovely misty14

I hope your meeting went very well! 10 years! That's brilliant! I am sure that in that time, these meetings have helped many people. Well done.

Wendy x

[misty14 in reply to Wendy39]

Hello lovely Wendy, many thanks for your lovely message. Our get together was lovely thanks but not as many people as we'd hoped!. Our group has been resurrected in north Devon recently as there's been a gap when I could no longer run it due to health problems!. The get together helped me about Hydroxy dose as I'm having problems taking 400 mg but better on 200 mg!.

How are you getting on?. Can't believe it's soon the school hols!. Xx