LUPUS UK

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Cuties are Back!.

Hello Everyone

I hope you all had a happy and healthy as possible Easter. I'm in a lot of pain so had to take a break but 'cuties ' are hopefully back with a bang with these pygmy goats. I love their expressions and this youngster thought he'd hitch a ride with Mum to get a better view of his surroundings, a Farm Park in Dorset. 😀

Keep safe in the sun and take care.

MistyX

P.s. i can't believe it but at last on Monday i should have my foot steroid injection. Its been a long wait for much needed relief. Ive also got the go ahead now from Endocrinology to stay on 5mg steroids forever. No more trying to reduce. Thanks everyone for all your support. X

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misty14

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goats are so funny aren't they. I could watch them all day

They are sussanah, they're their own characters like alpacas!!. I love them too, do you?. Xx

alpacas, lambs anything cute and mischievous.

Yay!. ❤👍🌞🤗Xx

BAAHHHH humbug!

Good luck for Monday 🤗

Thanx so much Stills. I hope your feeling better and if not you get help soon. Xx

🦶 🤞🏻 😃

👍❤🦶Xx

What funny little things aren’t they, the youngster looks very mischievous 😂🐐😍

Good luck for Monday sweetheart, you deserve relief from your awful pain, you’ve waited long enough!

Thinking of you 🥰❤️🌸🐐 🐐 xxx

Thanx so much dianne.so glad you liked them. I did do you a very quick pm. Huge luck for you too this week. You deserve it too. Xx🤞

Thanks for your pm , I’m calling the dr tomorrow , these stitches are still yukky which is worrying me now, I just hope someone will see me and swab them! Will be in touch in the week.

Take care my lovely, 💕🌸💐xxx

So sorry dianne you've got to sort those weepy stitches. Such a worry. Will think of you too lovely. Big hug🤞❤🤞🙏💐❤🙏🤞Xx

🙏🥰💕💐💕🐐💕xxx

Hi there - can you tell me - endo has agreed the steroid use - which one and why are you still in pain - asking because I take methyl prednisone which has better anti inflammatory properties and takes pain away.

Hi posthinking, i take prednisolone 5mg . Maybe it will be changed by my rheumy because its got to be lifelong?. Endo said she will tell him. How do you take the methyl pred?.

The reason im in a lot of pain is nerve damage in my foot after an operation. The steroid injection is for a neuroma. Xx

So sorry about the nerve pain it is so awful and unrelenting. I take 4 mg a day which is equivalent to 20 mgHC which did not touch my inflammation and pain issues. Been on it for years.

Thanx posthinking for your understanding message. Your so right about nerve pain. Hope you don't suffer with it too. Glad you've found a dose that really works for you. Its bliss as ive just had my injection. Its shut the nerve up. Hope it lasts a long time. Xx🤞❤🤞❤🤞❤🤞❤

Fantastic you are getting some relief - long may that continue !

👍

Thank you so much posthinking. Keep well yourself. Xx❤👍❤

What gorgeous wee goats. 😍 There are a couple of goats at the farm next to us and they aren’t very big so I wonder if they are Pygmy goats too? 🤔I must ask if I see the farmer when he’s not on his tractor. Whenever we pass the enclosure they are in, tucked behind a hedge so not easy to see, we hear soft bleats. When I first heard them last year, I thought it was a wee lamb but on peering through the hedge I see it is a couple of goats.🥰 I’ll be thinking of you tomorrow Misty, as you know, and hoping all goes well and that the pain relief begins very soon afterwards. 🙏🏻 It has been such a LONG time coming.🥴 I can visualise the smile spreading from ear to ear after having it! 😁 Love and hugs 💕🤗😘xx

Oh yes spotty, it sounds like they might well be pygmy's you can hear. Will be wonderful to find out. Do let me know. Thanx so much spotty for your unwavering support and thoughts. I do appreciate it.

I hope my smile from ear to ear tomorrow isnt ruined by a phone call from the Endoscopy dept!!. They suddenly rang on fri and i missed it so left them a message. I just hope its a mistake as i thought id sorted it all out. Don't want the test really.

Ill be in touch soon. I hope you both had the lovely 🌞 we have this weekend. Xx

Yes, lovely and sunny here too Misty. I’ll keep my fingers crossed it is nothing untoward from Endoscopy dept🤞 Thinking of you. 🤗😘🙏🐐🐐Xxx

🦶❤👍🤞🥰🌞🤗😀Xx

Fabulous image. Even better that tomorrow is injection day. You have waited so long xxx

Thanx cecily for your lovely wishes for tomorrow. Counting down now its finally so close.How did you get on ringing the MRI dept?. I do hope it was more successful for you.

I had a message from the Endoscopy dept on fri and i couldnt speak to anyone. Ive fretted over the weekend as thought id successfully cancelled a camera test. Its all so tiring and frustrating as now i have to see if they ring tomorrow!. Just hope its a mistake!!. Xx🤞❤🤞❤🤞❤🤞❤

No luck Misty, just more Buck passing. I was so frustrated. Twelve calls in all and I am no further forward. Made worse by my damned leg tendons being so tight today, I was limping so badly on our walk and pouring with sweat . Pain sucks the life out of you doesn’t it? I hope you get the endoscopy cancelled if that is what you want lovely. They are not pleasant. Here’s a cute pic to cheer you up xxx

Baby otter

Thanx so much cecily for your lovely message and baby otter pic. I love otters, they're so cute. Have seen them at a rescue centre near where i live!. Im so SORRY at your wasted phone calls. Its so demoralising, energy sapping and expensive to keep trying. If only they'd get their act together for you. Keep in mind you are making progress!!.

I did just wonder if there was anyone near you who could walk your dogs for you?. I don't suppose they'd go with anyone else?!.

I don't know what endoscopy are playing at but i didnt hear from them today so maybe they've made a mistake !!. We keep hoping don't we?. Im ringing gastros tomorrow about liver bloods i should have had.

I had my jab today and got immediate relief from this dratted nerve by the local anaesthetic. 🤞it all gives me a long time of relief. Its bliss!!.

Hope you get better news soon and you have a better week. Xx❤🤞❤🤞❤

Oh at last. I am so delighted that you got immediate relief. Bless you you have suffered far too long, Dylan went with my neighbour a few times when Neil was in hospital but normally absolutely refuses to go with anyone else including Beth Rosemarys daughter who he adores. The last time Neil was in Scotland I paid a dog Walker who he knew but he would not get off the doorstep so he took Brodie on his own. I keep thinking that the walking is doing me good, I just wish it wasn’t so painful. Today was ok but yesterday was murder. Hopefully I will get stronger and as my muscles get stronger my kneecap will slip less, it is already improving but the tendons that make my leg so unstable are sooooo painful. I suppose when I think of how much I have achieved just since Neil got sick I have surprised myself. I hope you manage to sort everything out lovely. At least you are in less pain which is a huge relief xxx

Thanx so much cecily for your lovely message. You have achieved so much since Neil got sick and are doing wonders with walking. Shows its possible if only the tendons werent so painful. I suppose thats due to underuse too as they tighten over time. Its lovely Brodie and Dylan will walk with others but only sometimes.depending on mood?. Haha!. Their their own characters arent they?.

Hope you go to pottery tomorrow.

It looks like it was a mistake from Endoscopy as luckily they've not phoned today!!. Such a relief and my foot is still painfree too which is wonderful.

Im ringing gastro dept this aft to chase up a blood test.

🤞lovely , you hear about your MRI. Keep fighting. Xx❤🤞❤🤞❤🤞❤

Thank you so much. I am so delighted that at least your foot is pain free. One less thing hurting is always welcome isn’t it? Xxx

❤🤞❤👍🥰❤🤞❤🤗Xx

Hi sweetie. 🥰

Great news about your injection and meds. I pray you’ll be feeling much better soon.

Awww…love this Pygmy. Why walk jump frolic etc. when you can hitch a ride on mum’s back.

What a Pygmy life he lives…ahhhh!!

Love and prayers sweetie.

EJ 🤗♥️🥰🙏🕊❤️‍🩹🌿🌸🦋

Thanx so much honeybug for your good wishes for my injection tomorrow. We could take energy saving tips from these pygmies couldnt we?. So pleased you liked them.

Do take care and keep safe yourself. Xx🦋🌻🌞🤞❤🥰🦋💐🌺😍🤞👍❤💐🦋🤗

Love the photo! So glad to hear you are getting your injection tomorrow. Also glad they have decided to let you stay on the steroids where you are. Does this mean they will start to help with the adrenaline problem? I hope so. hope tomorrow goes well.

Healing hugs.

Thanx pumpkin for your lovely, supportive message. How are you doing?. How is your foot? Better i hope.

I had my jab today and have had immediate relief from the local anaesthetic. Its wonderful not feeling the nerve jumping and being so painful. I do hope i get long relief.

As to adrenals, i am better in myself now taking 5mg but still getting some adrenal symptoms. The consultant did say i could contact her if needed before end july when she'll see me in clinic. I will learn more about it all then and she may test me to see which type i have.

I loved your pumpkin pic for Easter. She's beautiful and i hope you all had a lovely time.

Sending healing hugs to you too. Xx❤🤞❤

Love those ears! I am so glad you don’t have the stress of having to get past five mg prednisone. With your adrenal problems it must be unwise and the endocrinologist knew it.

😘😘

So am i kay. She's a really good Consultant and has realised ive developed a lot of adrenal symptoms. Ive tried getting past 4.5mg a lot and finally it was time to call a halt!. Glad you liked the pygmies. Have a good week. Xx

Get off! The saying is piggy back, not goaty back! That is a great picture. Goats are fascinating animals.

So glad you are getting your foot injection and being kept on 5mg steroids. I feel I am really needing to be seen. My back is still extremely painful. No sign of a rheumy appointment yet though, despite my GP talking to my rheumy. Think I need my GP to see me though as I have developed ulcers in my nose. They are both painful and uncomfortable. Tried all last week to be told “sorry, there are no appointments”. First pre-bookable was for 2nd June! To top it off I woke up this morning with earache 😞

Hope you have a lovely week Xx 💐 🐐 🐐

So sorry ge your struggling still and no sign of a Rheumy appt. Thats really bad. I hope you get an emergency gp one for that infection and you get antibiotics soon. They're miserable. Glad you liked the pygmies, good caption there!!. 🤞for you tomorrow too. Take care. Xx

Hi gloomy so sorry your in pain with your back, I get regular ulcers in my nose and use Naseptin nasal cream, I’m sure if you ring your surgery and ask for GP to leave perscription out for you they will as know just how much they hurt- sorry for butting in on Misty,s post xx

I use Naseptin for nasal sores too, it really helps. xx

No need to apologise. I’ve had Naseptin before but the surgery won’t prescribe it without talking to the doctor or nursing practitioner and I can’t get an appointment. Spoke to a pharmacist and, although they can prescribe many things, Naseptin isn’t one of them. Fingers crossed I get an appointment tomorrow 🤞🏻 👃🏻

Oh no - my mum is having same issue , she just cannot get an appointment to see the doctor - so frustrating - hope you manage to get an appointment / my naseptin is on repeat so ask them to put on repeat for you xx

So sorry ge your having a lot of problems getting an appt. Its awful and so frustrating. 🤞for tomorrow for you. Xx

I managed to get a phone consultation today. My GP is faxing a prescription for Naseptin to the pharmacy, so I will get it today, and I have to go in and see her on Thursday afternoon. This will be the first time I have been seen in 51 weeks! Last time I was there was 5th May 2021! All other appointments have been over the phone. Xx ☎️ 📞 👃🏻 👩🏻‍⚕️

Hope you got the prescription today ge. Im so pleased you've got a f2face appt with your gp on thursday. Nearly a years worth of telephone consults is a long time ge, ive been similar but have found it easier to talk to my gp on the phone. We're all different though. I had my injection today and have immediate relief from this foot nerve. Its just BLISS!.

Do hope it goes well and you feel better soon. Xx🤞❤🤞❤🤞❤🤞

I am pleased to say I got my prescription this afternoon. It certainly nips when applied but that soon eases and brings relief.

So glad that you got your injection and that it brought immediate relief. Hopefully the effects will last for a long time to come.

I will post about how things go on Thursday. Hopefully she will have heard from my rheumy and I will be seen there soon too. Xx 🦶🏻❤️

Thanx so much ge for your lovely wishes. So pleased you got your prescription yesterday and its helping. Good luck ge for thursday and ill look out for your post. I hope your gp has heard from your rheumy by now. Xx🤞❤🤞❤🤞❤🤞❤🤞❤🤞❤🤞

Ahh these 2 little cuties remind me of Bea & Mira, 2 little scamps 😂😂😂 must be their beards - good luck with foot injection tomorrow, I shall be thinking of you Misty ❤️

Thanx so much svfarmer for your lovely wishes. Ive had my injection and got immediate relief from the local anaesthetic. I do hope i get relief for a long time. It is so wonderful not feeling the nerve. Hope you all have a lovely week. Xx❤🤞❤

🤞🤗💕

👍❤🦶🥰Xx

Hi misty, i am also in love with goats 😊, though i was scared by one once as a child by a huge goat sticking its head though a hedge 🤣

I have everything crossed for you for your injection, i hope 🙏🏼🙏🏼🙏🏼🙏🏼 It will make a massive difference to your pain levels. Its good you have also got good news from endo consultant, hope it keeps you stable.

I finally got my 4 jab today, feeling ok at moment, im also getting a steroid jab in my hip Friday for bursitis, pain has been bad so will be glad of it .

Do take care , i will be keeping my fingers crossed for you 🤗🤗😘🌸🌻🌻😊😊

Hi weathervane, so pleased you liked the goats despite your horrid childhood scare. It could have put you off them for life. 🤣

So sorry your suffering with bursitis pain. No fun that is either but im so pleased you've had your 4th jab and are feeling ok. Good luck for your steroid jab on friday. 🤞it helps well.

Mine went well and im painfree thanx to the local anaesthetic. Its bliss!!. I hope the steroid gives me a long time for relief. Its such an awful pain and i might be able to think better.

Thanx for your lovely wishes re Endo. She will see me still end of july . Im feeling better in myself staying on 5mg but still getting some adrenal symptoms. She said i could contact her again if needed.

Hope you've enjoyed this lovely , sunny weather.

Take care and will think of you on friday. Xx❤🤞❤🤞❤🤞❤🤞🌻❤🌷🙏🌺🤞

Great news you are getting pain relief already 🥳🥳🙌🙌I hope your sleep improves as well and you feel like a new person 🤗🤗🤗

Good luck with Endo appointment , i had my rheumy appointment put back a month, bet that sounds familiar 🙄🙄

Take care , stay safe 😘🥰🥰🌻🌸

Delayed appointments weathervane are very familiar to us all sadly. Ive got several clinic ones coming up but know they will be much later. Tricky when advice is needed!!. I hope your rheumy one was helpful.

Im ringing the gastros today to chase up a blood test. Ive got liver problems as well as adrenal ones so still not a new woman but im working on it!!. Ha!. 🤣

Foot is lovely still painfree. I had to delay my leg injections because of foot injection so still got nerve pain till 6/6. A while yet!!. Then i really will be better and sleeping well.

Hope you get good result on fri.keep safe too. Xx❤🤞❤🤞🙏❤🤞❤🙏❤🤞❤🙏❤

Very difficult coordinated everything when you have multiple health problems . I hope you can get everything sorted so can start feeling a bit better. Thinking about you 🤗🤗😘

Thanx so much weathervane for your understanding message. You are SPOT ON there!.

Ive phoned the gastro dept and the secretary was very positive and said she'd look into it and a blood form would be sent to me. So i feel better for doing it and will see if it comes.

All the very best for fri. Keeping my 🤞for as good a result as mine. Xx🤞❤🤞🙏❤🤞❤🙏❤🤞❤🙏❤🤞

💕💕😘🌻🌸

I love goats Misty 💜🤗 Great pic!! I've delayed my reply coz u had a lot on!!

I'm very happy to read that you've had your long awaited injection n your pain free...well in your foot anyway. There's so many bits of us isn't there n when one starts behaving another bit will play up!!

I'm glad to hear u going to go long term 5mgs Pred too..hopefully it'll help stabilise u a bit 🤞💜🌈😽😽xx

Thanx so much krazykat for your lovely reply. How are you getting on with the steroid reduction and higher dose of mtx?. I hope its going well.

I do like this combo of drug doses for my joints and i do feel better too. Its lovely having the worry of reducing now halted for good although now im worrying about the side effects of the steroids like my bones over maybe 30 more years of life that i may have!!. Can't we worry for England when we have a lot of health problems?. Ha!.

I did see your post a while ago about the HUGE disappointment about not getting your mobility car and no wonder it hit you hard!!. That was inexcusable. I hope since then you've managed to make alternative arrangements and you will have one soon.

Hopefully ill be able to sort out my liver and adrenal symptoms better and then i really will be a new woman.

Its wonderful not feeling this foot nerve still, showering last night was a joy, its been a painful nightmare for a long time !.i really hope it stays away now!!. Your so right kat, that if you help one bit something else can start hurting or we suddenly feel it as its been hidden!. Thats happened a lot with me over the years!.

Thinking of you anyway and so pleased you liked the goats. They're so cute. Have you watched 'Springtime on the Farm' there were lots of pygmies running round and playing on a climbing frame. Cute overload!. 🙂

TAKE CARE and KEEP SAFE. Xx😻🤞❤🌻🌞🌷💕😀🌼🤗🤞❤🌼🦋🌞💐❤🤞

I'm doing ok thank you..am currently reducing to 4mgs..I'm using a new super slow tapering regime that I discovered..after looking about on PMR's forum..n the lady herself had posted about this method..it's called Dead Slow Nearly Stop (DSNS). So far so good!! Not quite back to square one with the car. Car guy has ordered a different car that Vauxhall recommended n I've got compensation and PRIORITY status..so hopefully I won't be waiting for another year!! I did have a look myself when people were saying buy a car instead but I've realised looking at cars on the internet is boring n I can't be bothered.so I'm going for the car suggested!! 😹

Might have to have a look at Springtime on the Farm..thanks for the tip 😉

I know what you mean about worrying about bone health..I have steroid related myopathy so my muscles are wasting on my legs..think it's on my buttocks too coz my bums getting bony!! Do u take Alendronic Acid? I tried it but couldn't handle the side effects so I stopped after three weeks.

Take care yourself lady 🤗💜🌈😽😽xx

Well done krazykat😻 for getting down to 4mg steroids. Thats a brill achievement. I know the Dead Slow method you describe. Its PMpro on PMR isnt it?. I did try it but couldnt get on with it but we're all different. Its great its helped you do it.

Will be keeping 🤞you get this new car soon. Im glad you are a PRIORITY and did get compensation as that was really bad. I bet you won't believe your eyes when you take delivery of it.

I used to take Alendronic Acid for bones but like you my stomach got fed up with it and i had to stop it. I ddid the infusion Zolendronate which has been much better. You might want to ask your Rheumy about it as bone protection is so important although the lower you can go the less worry for your bones. Do you take calcium and vit d?. Thats good. Im sorry you have steroid myopathy, thats a tough price to pay krazykat.

Keep up the good work and thanx for your lovely wishes. Take care. Xx😻🤞❤🤗❤🌞🌻😍❤🤞🌺❤🌷🦋

Yes that's the one. I'm still taking 4.5mgs on more days than not so I'll see how I get on when I've started taking 4mgs more regularly. What did u find was problematic about this method? I will admit I'm having to record the days so I know which day to take what dose..but so far so good. I thought I'd give it a try anyway.Yes I do take calcium n vitamin D. I had some tests recently n GP said bone density test came back ok..so that's something eh? 💜🌈😽😽Xx

🤞krazykat that you'll be good on 4mg. I got confused which day to take which dose despite recording like u are. Its great you like it and managing it so well. These things aren't for everyone but its great we're all different.

Thats wonderful news kat about your bones so you don't need to worry. The more you come down the less risk you have for your bones anyway. Its one less pill to have to take too!!. I developed osteoporosis so do need long term treatment.

Keep on keeping on, your doing so well and i really hope you get that car soon. Xx❤🤞❤🌻🦋🌼❤🤞❤🙏

We're forever juggling aren't we!! 🤹Thank you for your feedback on your experience with this method. I'll let u know how I'm doing on your next cutie post 😉Take care lovely n enjoy your pain free-ish days 💜🌈😽😽xx

Yes we do krazykat!. I will look forward to reading how your doing, hopefully ok on 4mg , lovely.🤞

Thanx for your lovely wishes, foot is still painfree!. Yay!. 😀have a good weekend. Xx🤞❤🤞❤🤞❤🤞❤

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