Aynur 2017 Baku

Dear Friends!

I’ve been away for so long – sorry but you never leave my heart and thoughts! Just wanted to check in here, say hi and encourage all those new to the AP.

It’s my 8th year on AP and 7 consecutive years of REVERSED ANA! With a very long standing but very moderate diffuse scleroderma without internal organ involvement, I started with just 100 mg twice daily. A year into AP and after ANA reversed to NEGATIVE, I’m on 100 mg once daily. I’ve started with a Canadian brand, blue-orange capsules (Stiefel) but I’ve changed brands several times as per the pharmacy supplies and for the last 2-3 years I have been on different tablets from the UK and the last one is Crescent, since capsules are no longer available. I’m doing great, the damage SD caused me is slowly but surely disappearing. And I’ve had SD for 37 years! First manifestation – Raynaud’s at the age of 3 (most likely after CMV virus 6 months prior and frequent tonsillitis) and full SD albeit without any internal organ involvement, by the age of 11. My early years were painful and I spent some time in hospitals (rheumatic fever, tonsils removed, etc.). Yet I pushed myself through the pain and did gymnastics (even received junior level certifications) between ages 7 and 11 and ballroom dancing from 11 till 14. Then, it all slowed and stabilised by age 18. I’m 40 now, mum of 2 beautiful, healthy kids. I’m very active – working, travelling, doing everything, walking/cycling almost daily 8 km…

I was mainly unaware of my diagnosis till I had both my kids! My mum kept the secret from me… She always said, “You just have Raynaud’s…”. Although I often researched Raynaud’s and saw it often associated with SD, I was sure I had none of the terrifying condition and did not think much of that… till after I had my second kid and my finger ulcer would not heal for over 1 year – an absolute record even for me! I was curious as during my pregnancy with my number 1. I was tested ANA positive, so by then I already started thinking that I may have a bit more than just Reynaud’s. My obstetrician supervised me closely but all went well (except for and early labour at 36 weeks, typical for SD patients. C section, of course as there was NO CHANCE I could have my baby naturally). Then I had my son – born 2 years after my daughter, also through-section but full term this time. I did no investigation till after my son and the bad finger…

I have to say after childhood, I did not really suffer much either – my main problem was my very dry skin, being underweight or just normal but really skinny and painful finger ulcers (plus changed face as I realise only now – after my face started going back to my natural normal). By this time I was so used to the pain and my limited state that I felt normal and thought nothing of it… The reason for such favourable state? I think tetracycline mum gave me as a child for my frequent throat infections (she is a doc)… And positive thinking… or rather not thinking about SD at all (as I did not know I had one!).

So, after my prolonged finger episode, I finally got diagnosed and started the AP – April 2010. In one year, the ANA was sera-converted to negative and remains as such. My body is changing towards better constantly… I’m discovering my body again as I’m not used to being normal – all I remember is being “sclerodermic”… I tolerate cold MUUUCH better and last X-mas I even learnt skiing and was totally fine skiing 4-5 hrs in a row on blue slopes. My next challenge – red slopes!

I get my prescriptions from Dr. S. in Iowa’s office in the US and buy meds from in Canada. We are on our way out of the UAE/Dubai – in March 2020 we will be leaving Dubai for good, moving back to the UK where my husband is from. There, I will probably find an AP therapist, for my routine checks as well as my prescription. Or I may stay with Dr. S, not sure about this yet.

So, this is the quick hi and to say that AP did wonders with me! I’m a walking living medical miracle thanks to Dr. Brown and Road Back!

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