[KitKat]

Hi,

I am not sure if I sure post this here so please feel free to move me Clare if you think it right.

Firstly I want to say that I have a great Rhuemy and GP. They work well together and they are a total blessing! I keep on thinking about moving house (I hate my job and need to find a new one but there is no work around here at the mo so moving would solve a problem) but you hear so many stories about dreadful medical care that I am loathed to do so as I might lose my lovely Dr's.

However, I have a rubbish disease at the mo and my Rhuemy is stumped. I have had major heart and lung involvement but the drugs (The usual cocktail of Plaq etc with CellCept and varying amounts of steroids) has put a stop to the progression of that and praise God I haven't been rushed into hosp with a life threatening infection in almost a year:dancing: but I am still having quite a hard time with other symptoms and I constantly seem to be getting pluersy.

I went to see my Rhuemy last week. I was in total agony with the pluersy and she upped my steroids. But I get really rubbish cushing style side effects and get fatter and fatter which really doesn't help anything so we made a plan to raise them for 3 days and then lower them down 3 days at a time back to 10mg which is my standard dose.

The trouble is I am now back down to 20mg and the plueritic pain is coming back So the steroids haven't effectd it long term.

My Rhuemy has said she is going to refer me to St Tom's because I have reached the end of what she can think to give me. The only thing she hasn't tried is Cytoxan and she doesn't want to do that becuase of the side effects. I hear how great St Toms are but I cant think that they will do anything different than my Rhuemy does at the end of the day they only have the same drugs available to them.

I just want to feel better.
Any advice on how would be greatfully recieved.
K

 

[Katharine]

Hi Kitkat,

I'm afraid I really don't have any advice to offer but wanted to say how sorry I am to hear that things are not going at all well for you at the moment.

I do understand your reaction in wondering what more St Tom's can do for you. I have often thought the same kind of thing myself. However, in this case, I think that your rheumy is right. Having a second take on things can often be worthwhile, the two heads being better than one theory. I think you're very lucky to have a rheumy who accepts that another opinion might be valuable, so many don't and their patients could do with that second opinion.

Whatever you decide to do, I hope things get a lot better and fast!

hugs :hug:

Katharine

 

[lazylegs]

Hi Kitkat,

Since the doctor is offering the option of a second opinion I would take it. The other doctor might pick up on something your doctor's missed. There is no harm in trying.

Take care,
Lazylegs

 

[LolaLola]

Dear Kit Kat,
I am sure that having a job you hate does not help at all.
Tommies are very good, I especially like Dr. D'Cruz. It may be possible for them to share your care with your local team. Appts. at Tommies can be quite a way apart after the first one.
Is there anything at all that could be changed at work to make you feel differently?
x Lola

 

[alisiajo]

It's hard changing doctors after finding one you are comfortable with and enjoy. I have not had to do this yet I am very stubborn and picky, i get irritated when they change my nurses because they start to get to know me and my feelings on things. I moved away about 60 miles from my doctors but i still drive to see them. I refuse to change doc. I think second oppinions always help though. Just to get some more input. Stress from not liking your job is probably not helping your disease any.

I have been on cytoxan since i was diagnosed 5 years ago. Depending on the dose, i dont have to bad of side affects. When they first started the cytoxan i did lose a lot of hair. I was no where near bald but i have very thick hair to start with. I just noticed a lot in the shower and my hair brush and i did have one bald spot, it is still there but it is un-noticable to someone who doesnt know it's there. They give me a lot of fluid before and after along with zofran to help the nasua. I also have zofran pills that i can take at home afterwards. They help a lot. I have recently quit the cytoxan though because i want to try to have a baby and it can cause your eggs to not produce so i would suggest egg freezing or embryo freezing if babies are in your future plans... These can be costly though