Sorry for the Rant

[kel87]

Hey everyone

Im really struggling at the minute pressure on the chest not being able to swallow properly, really bad fatigue painful and stiff hands and feet.. my mood is up and down start infusons in 10 days

Do anyone else have blackouts??

Xx

[marilynmcl]

hi kel87....if you haven't had your infusions yet then you may feel pretty poorly just now...I know I was too. Didn't get blackouts though, everyone is different in experience of S.sc. I still get chest pressure and fatigue and extremities still painful and stiff....but my lung problem...three types of damage...copd, pulmonary fibrosis and bronchiecstasis,[ although damage done is irreversible]... has been helped with the infusions. Did get dizzy spells...still do on occasion....also thick gummy mucus that if I don't cough it up I sick it up instead.....not nice!

You just have to keep going pet....you will feel better once the infusions are over so good luck going forward and chin up! x

[kel87 in reply to marilynmcl]

Thank you for replying its great to know that other people understand... Im getting really bad mucus and the same as you cough or sick it up its awful esp when my chest is so sore its horrible..

Thanks for sharing...

Kelsey

[kel55 in reply to kel87]

from one kel to another hi. if your infussion fails try having a stellate ganglion block, not the most comfortable 15min but for me well worth it.

Kelvin

[kel87 in reply to kel55]

Hey

Thanks very much ill bear that in mind..

Kelsey

[marilynmcl in reply to kel87]

Hi again Kelsey....just remember to always have handy two things...maybe three things...a waste bin with a liner in it/a box of tissues and or unperfumed baby wipes. My waste bin on the floor is beside my seat on the couch within reach in case of up chucking after a coughing bout....to get upstairs to the loo would be impossible ...also at night on the floor beside my bed...same reason as before! Hankies...obviously...and wipes again obviously for useage. I find that coughing fits happen after minimal exertions...housework for example...hoovering or making the bed brings on bouts of coughing ...also, do you find your temperature fluctuates..I get really hot flushy type turns which only last a few minutes..especially after exertions.

Anyway, the infusions you will get...might be what I was given...cyclophosphamide.. will be over three months period and are nothing to be too worried about. So, take care Kelsey and hope all goes well for you.x

[kel87 in reply to marilynmcl]

Hey

Yeah I've constantly got tissues and baby wipes close by for the same reason and a bottle of water. I can get coughing fits when I'm sitting but yes I can go flush at various times. My infusions are 3 days 6hours a day that drug don't sound familiar I'm sure mine begins with E.

Thanks take care

Kelsey

[marilynmcl in reply to kel87]

I had to go in hospital to get my infusions ...presume you too do same...and I was in once a week for three months for these infusions and the cyclophosphamide I was told was also a chemotherapy drug and was administered by the cancer nurses on the cancer ward...had to get all the warnings about hair loss and sickness etc. as it was quite a potent drug I had to take. The main reason for me getting it was the damage already done to my lungs as the Ssc. was attacking my internal organs. As I mentioned before in previous postings...this seems to be working, fingers crossed....I would imagine that there may be other treatments by other consultants on Ssc. I only know the one I got...started on Jan. last year and finished in April last year. Have got regular appointments with my rheumatologist at Wishaw hospital and see respiratory consultant there too...now going to have another endoscopy later this month ...all my food I eat is 'sticking' on the way down and is a bit painful on swallowing...not good!

Anyhoo....I had to go in for different infusions but had to stay as patient in ward for 3 days with line going into my arm for raynauds in my hand...fingers were on verge of turning black and falling off! so needed infusions to open capillaries up and blood to flow a bit better. This seems to have worked as they let me out and fingers were a lot better but have to watch the cold on them in future. So far so good! Still go purple or white though and get cold even inside so bit of a problem for hubby when he is too hot and I am freezing with the heating turned up!

So, keep better and chin up! Summer is coming thank goodness! x

[kel87]

Hey

Thanks for messaging back wow I'll keep all that in mind, I'm pleased treatment is working at the minute may long it continue. I honestly can't wait for next week hopefully symptoms will ease after might start to feel better.

Thanks again

Kelsey