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Comment by Celia on February 19, 2014 at 1:50pm

Annie ! Get back on that horse, as they say ! Try to get back to your exercise regime - you know it gives the feel good factor ultimately, gets the circulation going, helps keep blood pressure in check etc etc  I think the feeling sorry for oneself with FFA kind of goes with the territory sometimes, and you mustn't feel bad about being down - it happens. I saw the dermatologist today and before I got up I was in shreds !  Anyway I gathered myself up and got through the appointment, followed by a little bit of retail therapy.  How much hydroxychloroquine are you taking ?

Polly that sounds good that the inflammation on your scalp is a little calmer.

I love your new hairdo in the picture by the way !!!

Paula, sorry to hear of the weight gain - that's not much fun.  It was your derm who I saw today, by the way.

Claire - you said about the crepe paper effect - was that from the injections ? I have a ridge now at my hairline and vertical veins running about an inch down my forehead - OK until the wind blows the wrong way, but I would not have them again.

Comment by Annie on February 19, 2014 at 11:36am

C, My doctor has not prescribed oral prednisone, but he did say that he wanted me to call immediately if I have a flareup so he can put me on a short-term steroid (such as prednisone) to stop the hair loss as soon as possible.  There is prednisone in the topical that I'm currently using.  It seems to help, so I plan to keep using it. 

Regarding weight gain:  I lost weight when I was first diagnosed because I simply couldn't eat anything for the first month.  I have gained a few pounds since I started taking Plaquenil, but I blame myself for that.  I used to be a fitness maniac, but I just don't seem to be as interested in exercise as I was before my diagnosis.  I think feeling sorry for myself at times may be another side effect of the ffa.

On a different subject, has anyone else noticed dark circles under your eyes?  It seems like mine are much worse than ever, even with a full night's sleep. 

Comment by claire on February 19, 2014 at 11:29am

I have had very severe skin allergies in the past and had to take this drug. It does cause weight gain but I lost mine. I have had a steroid injection recently without the side effects. It also made my skin feel like crepe paper which was horrible. I would not take the oral version again.

Comment by Paula uk on February 19, 2014 at 11:29am

Hi Celia ,
I have taken prednisone 3 times in the past 12 months ,2 40 day courses and 6 days a month over a 3 month period.
On my last visit to my derm, He felt it had helped to reduce the inflammation.
since taken prednisone and plaquenil I have put on weight - which one is the main offender I have no idea!!x x

Comment by Polly UK on February 19, 2014 at 11:27am

Hi Celia, I occasionally take a 5-7 day course of those steroids 8 tablets a day for asthma and feel really well but very manic. Even after such a short time I usually put on a few pounds but it's worth it to be rid of the inflammation in my airways. When I mentioned them to my derm he told me he wouldn't prescribe them for FFA because of the side effects from long term use!
Are you still taking Lymecycline? My derm said to take them for 2 months - I'm in my second month and the inflammation has calmed down and so has the hair loss so fingers crossed once again. I saw my derm last week and he was very pleased with the results.
Polly xx

Comment by Celia on February 19, 2014 at 10:54am

Thank you Rebecca - I am loathe to take it anyway ! I just googled it and one of the things is that if you are in contact with anyone who has shingles you must see your GP immediately !!!!!! My friend currently has shingles............I have gained weight since being on hydroxychloroquine, by the way, wonder if that is the case for any others. Pred apparently may increase the size of the neck and give you a bit of a humped back - oddly enough the friend with shingles was on steroids a few years ago - she put on weight and esp gained a hump at the back of her neck - oh my goodness - is it worth it !!!! Thank you !

Comment by Celia on February 19, 2014 at 10:44am

I wonder if any of you have ever taken prednisone and if so what were the side effects - did it help. I have been prescribed this as well as a steroid lotion the be used daily. Any comments please ? Thanks !

Comment by Celia on February 13, 2014 at 4:00pm

Jean - we hope that 22 March will happen,  but I would hope that we can arrange a Summer 'do' too without The Weather !  It would be great if you could be there.then.  It's hard to have 100% of the group in the SE at the same time  - hope you have a wonderful holiday ! Best wishes, Celia.

Comment by Jean on February 13, 2014 at 2:49pm

I would have loved to join you ladies because everyone is so supportive (nothing like inviting oneself)!

I'm on holiday from 19th March but would really like to be included if another get together is planned, please.

Have a great time

Love Jean

x

Comment by Caro UK on February 12, 2014 at 1:49pm

Really looking forward to seeing you all. Thank you so much C for the invitation X

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