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Rheumatologist control after 6 months -report

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#1 erika


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Posted 30 July 2010 - 03:13 AM

Dear all,

I just wish to inform you about my rheumatologist visit today before I go to my vacation. I had to do blood tests and urinanalysis a few days ago. Doctor confirmed that we do not have any proof that I have Systemic Sclerosis but we have to be careful and monitor it closely. It is probably in the early phase and if it doesn't spread quickly (as it did not until now) the prognosis is good.

The blood and urine test was more or less okay except CK which was 177 (last time it was 230 - so it is improving). He was not happy with 14-15 Erythrocytes in urine. After my present vaginal infection I should make urine cytology test just in case something is happening in my kidneys. He has set me another meeting in 3 months when I have to bring new blood and urine tests together with urine cytology results. Then he will run immunological tests again.

Due to my increased CK and and some skin worsening (shiny skin on hands, belly and upper lip) he prescribed my Resochin (antimalarial similar to Plaquenil) but on prescription free of charge here. I wonder now should I start to take it now when I go to my holiday which is so nicely planned and scheduled (three weeks of seaside including a week of cruise on isolated islands and a week of Paris). It would be a pity to spoil it with some possible medicine intolerance.

Although the weather here is like autumn (not summer as it is) I hope that it will improve. Wishing you all good August and overall remission.

Stay well,


#2 Jeannie McClelland

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Posted 30 July 2010 - 11:02 AM

Hi Erika,

It sounds like pretty good news and that the rheumatologist has a good monitoring plan (always good in my book). We, of course, can't give you any advice on delaying the start of the medication. I know what I'd do, though! ;)

Your vacation sounds like a dream holiday. Since we are still very much having summer here in the Rocky Mountains, I'm sending you warmth, sunshine, fair winds, and good cruising weather. Paris is perfect in any weather, except the winter! B)

Bon Voyage and continued good news,
Jeannie McClelland
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#3 miocean


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Posted 30 July 2010 - 02:37 PM

Do research on the medication and it's side effects so if you do take it as prescribed you will know what to expect. Just remember, they will tell you EVERY side effect and many are rare. Bring the info with you so if you do get side effects and have to seek medical help it will be available. Your vacation sounds wonderful. I live at the beach and am fortunate to be able to enjoy it almost every day in the summer but I have always dreamed of going to Paris. Maybe someday.
Enjoy your trip!

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#4 Sweet


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Posted 31 July 2010 - 09:09 AM


Well that sounds encouraging. Always love to get a bit of good news.
Warm and gentle hugs,

ISN Support Specialist
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#5 enjoytheride


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Posted 31 July 2010 - 03:15 PM

Sounds like so much fun.

Is it a medicine that you can stop immediately if you have some side effects?

#6 warmheart


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Posted 31 July 2010 - 06:39 PM

Hi Erika,

Nice to hear from you! That's great news! And your vacation sounds amazing!!! It has been so hot here even since May. It was good for my Raynaud's for awhile, but I've been working so many hours that it gets worse again from tiredness anyway. Today was cool and beautiful--wish it would stay like this until fall.

Bon voyage! :bye:



#7 erika


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Posted 01 August 2010 - 09:54 AM

Hi all,

I am sending you regards from the seaside, not quite from the beach as can Miocean, but from the terace with a nice view on little islands (although it is dark now and I can not see them write now) :bye:

I took my new medicine with me (did not try it yet - did not even completely read the instructions since they are in German), it is there in the bag together with all other meds: allergy, thyroide, rheuma, vitamins, supplements, alternative, pain, tranquilisers, antideppresives, hormones...

When packing special care has to be taken in bringing the right quantity of all possible cures and remedies. And my medicinal bag becomes heavier and heavier every year. Also the accessories require special attention: pillow for the knees, pillow for arms to put around (all for sleeping), special back support while sitting.

Instead of fancy dresses, high heel sandals and sexy underwear my bag is full of comfortable t shirts and soft short and not so short pants. Well this must be the age.


#8 Snowbird


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Posted 01 August 2010 - 01:35 PM

Hi Erika

Sure hope you have a fantastic vacation no matter what you decide!! Sounds just heavenly!
Sending good wishes your way!

#9 Shelley Ensz

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Posted 02 August 2010 - 11:25 AM

Hi Erika,

I hope you are having a marvelous vacation!

I just want to add my two cents worth. Which is, I think it is wise to wait until you get home to start on a new medication, provided that its not an urgent medication (like for an infection).

I know you're thinking in terms of trying to avoid ruining a vacation with new side effects, which is pretty smart in and of itself. But there is a flip side to that, too, which is that you will be encountering all sorts of different foods and conditions which might make you ill on vacation. And it would be a pity to blame a traveling illness on the new medication! The more things that are even when we start a new medication, the better, as then things can be sorted out more quickly if there are problems.

I also like that you pointed out your meds. In that, very often we only think of taking our current batch of meds, and can easily overlook the occasional-use meds which are very likely to be needed when we are in a new place and on a disrupted schedule. I'm sure you'll be able to enjoy yourself with more peace of mind, knowing that you are as well-prepared as you can be.
Warm Hugs,

Shelley Ensz
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