Bit of a hiccup!

[fairy56]

Hi everybody, had a hospital appointment yesterday, didn" t go as well as expected, so calling everybody out there, I would really appreciate you all sending me smiles and waves, Thanks xx

[zebbo]

😊🙌😊🙌😊🙌😊🙌😊🙌 x

[bookworm]

🙂

[Cole57]

🙏🏾🤗🙌🏾🤗🙌🏾thinking of you.

[LucyJean]

Hey, what's up? Would it help to say anymore about what happened? Anything we can help with?

Lxxx

[fairy56 in reply to LucyJean]

Hi LucyJean, suffice to say that our friend Ssc and its brother Ray nauds is making progress. I have been booked in for 3 days of Iloprost starting this coming Tuesday, they would have liked to have started today but its Easter weekend, reason being my big toe is turning black, only small area at moment but they dont want it to get worse. My last Lung function test showed scarring on my left lung as well as nodules, and during my appt they listened to me breathing and there was a slight crackling. They are booking me in for another Lung function and ECG so they can monitor it, whilst due to me having Steroid injections 3 times a year I am waiting for a bone density scan. They also prescribed Sildenafil and soluble Aspirin in addition to all the other medication I take, taking the tally to 8 different daily tablets. There was some good news, the capillaries in my fingers have not deteriated, whoopee. Hey, it could be so much worse, I just dont like to think I am not well. thank goodness for this site and all you wonderful people, I"m still smiling and waving. xx

[LucyJean in reply to fairy56]

Hold on in there. You don't need me to tell you what a rollercoaster ride it is having Scleroderma. One minute you think you are jogging along relatively okay. The next someone throws some new terror into the mix! Let's look at this calmly. Firstly, they are keeping a good eye on you. Secondly, they are getting in there quick and giving you some treatment, which although not nice should hopefully sort your circulation out pretty quickly. In addition you will be on sildenafil and aspirin, so it should hopefully not happen again. We have had some terrible weather to contend with, and hopefully with the arrival of spring (albeit, not until after the Bank holiday by the looks of things your circulation will improve over the course of the year.

Thirdly, regarding the lungs, again they are keeping a close eye and there may be interventions that can help halt progress. Fourthly, three steroid injections a year is not going to make a massive impact on your bone density. It would be worse if you took daily steroid tablets. Again though, there are many treatments/medications that can help the situation. Osteoporosis treatments have come on in leaps and bounds over the years. Are you on daily high doses of VIt D...and/or calcium? Wait until you have a scan to see what is happening.

I know it feels like you are rattling with all these meds, I know it feels terrible to see the disease progress, we all know how miserable it is to have something like this, but keep posting, and we will try and keep answering as you keep smiling and waving.

Hugs

Lxxxx

[Jen3131]

👍😍

[jill95611]

👋hugs👋😊

[SheepJane]

😀😀😀😀😀👋🏼👋🏼👋🏼👋🏼

[MilkMaid]

keep smiling

[Pennypetra]

Know how you feel. Lots of hugs

[MrsRosie]

Big hugs xx

[appyalison]

❤️😻😍. Thinking of you fairy56. Sending love and hugs directly to you...

[Denjo65]

😁🤗👐🏻🤗😀👐🏻🙌🏻🙌🏻😃😃

[Winfield1]

😊👋xx❤️❤️❤️

[GGhere]

Sending you a big hug Fairy56 - I understand everything you say. Horrible stuff we all have to contend with - good thing is we're alive and looking the world in the eye. It's nice to tip-toe into this site and get some understanding support. To Fairy56 and everyone here with SSc, Raynaud's, Crest and all the rubbish stuff that comes with it - love and hugs and good wishes for the Easter holiday. I'm longing for the warmer weather and hope we'll all feel a bit better when it arrives.

[marie5454]

😊😊😊👋👋👋to you fairy56xxxx

[catkar]

Fairy56,

I am heartbroken for you,

Sending love xx

[bluesgirl]

With regards to the possible osteoporosis. I was diagnosed with this last year but this is a mere bagatelle as they used to say compared to sclero and Raynaud’s issues. I was able to have an injection of vit D via a cannula in the arm which allegedly lasts three years. Procedure lasted about fifteen mins. It may be available at your hospital.