Plaquenil at last!!!!: Hi all Finally... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Plaquenil at last!!!!

jessielou profile image
17 Replies

Hi all

Finally, been to rheumy nurses clinic, she was lovely. Went through all details about the plaq, checked my eyes etc. Did bloods and if results ok on Monday can start them. So after all the stress and agro I got their. Another victory over bureaucratic b s!!

Rheumy clinic is at a local hospital which is good, sadly tho the nurse confessed to very little if any knowledge of Aps. She did say however she will be searching the net for info. So education underway!!

Is such a relief.

Hope all havin a good day.

Take care gentle hugs sheena xxxxx :-) :-) :-)

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jessielou profile image
jessielou
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17 Replies

Congrats but don't have too much fun with that stuff, lolol!!! x

I think I am going to pull together some nursing resources for APS..... Maybe write some?

jessielou profile image
jessielou in reply to

Hi kristina

that be great hon. Got try it cos lupus symptoms drivin me crazy. Nothin relievin joint pains, skin sores etc.

Hope you well today

Take care gentle hugs sheena xxxxx :-) :-) :-)

jetjetjet profile image
jetjetjet in reply to

hay there, can i be one to view or be involved in this action, still waiting to hear from doc . ???? but as usual the old comp . is up to its old crap, thank god for my nephew in colorado, he has the ability to cope with me. hope i can get things rite soon. see rheumy for 1 st time 2 nd , maybe some answers , who knows ???!!! jet

jessielou profile image
jessielou in reply to jetjetjet

Hi jet

hope all goes ok with rheumy. Keep pushing must be somethin they could do.

Glad you got your nephew.

Hope you ok today

Take care gentle hug sheena xxxxxxxx

Storky profile image
Storky

Great News! Hope all goes well.

jessielou profile image
jessielou

Cheers hon

Hope you well today

Take care gentle hugs sheena xxxxx :-) :-) :-)

TJSTICKYBLOOD profile image
TJSTICKYBLOOD

I've just started on plaquenil for the 2nd time as my doc would not reissue them. Be prepared for stomach cramps but it does pass.

jessielou profile image
jessielou in reply to TJSTICKYBLOOD

Hi tj

thanks hon. Some docs a pain in the a##!! Are'nt they.

Hope they helpin.

Expectin some side effects, on so much already tho, can't be much worse.

Take care gentle hug sheena xxxxxxxxx :-) :-) :-)

Suzypawz profile image
Suzypawz

Glad you've sorted it hun, hope you are well :) xx

jessielou profile image
jessielou in reply to Suzypawz

Hi sue

thanks hon. I ok had allergic reaction tonight, close to using epipen and A n E.

Antihistamine and Nebuliser settled it.

Don't know what reacted too though.

Hope you feelin better, if not docs for a check or ring tommies, worried bout you.

Take care gentle hugs sheena xxxxxx :-) :-) :-)

SharontheSheep profile image
SharontheSheep

I've been on Plaquenil for several years now, from 200mg to 600mg (which I'm back on now). it can take some getting used to but I have found it really worth the pain when it kicks in eventually. I can get away with a lower dose in the summer months but need the hiigher one from October - March.

Great news, Love Sharon

jessielou profile image
jessielou in reply to SharontheSheep

Hi Sharon

thanks hon.

Glad plaq helps you. Expectin some side effects but will persevere . Just wanr feel a bit better. Startin on 400 a day, 6 months trial. Back to tryin get gp prescribe in 8 weeks, but if not rheumy clinic will carry on. I assume if it works tommies will leave me on it. We will see i guess.

Hope you feelin well today

Take care gentle hugs sheena xxxxxx :-) :-) :-)

paddyandlin profile image
paddyandlin

CONGRATULATIONS AND CELEBRATIONS YOU HAVE THE DRUGS YOU WANTED!!!!!!!!!

ok Breath

Now seriously i am really happy for you Sheena i know you foughta long road well done and fingers crossed.

paddy

jessielou profile image
jessielou

Hi

cheers all.

All ok with bloods can start today. So fingers crossed!!! Will let you know the ups and downs. (not in gory detail) tho i'm positive with proper checks, monitoring, and what i've learned through loads of research, that I will have no problems.

Take care gentle hugs sheena xxxxxxxxx :-) :-) :-)

LaurieJane profile image
LaurieJane

I've been on plaq for around 8 years now. I had to go off it for 6 months a couple of years ago and it was terrible. When I started it intially and when I went back on it, we tried 200mg a day. Both times I have found I needed 400 mgs a day to be comfortable. My mom has macular degeneration, so taking plaq is of real concern for me and my doctors. It is great stuff!

jessielou profile image
jessielou

Hi Laurie

Welcome and glad to meet you.

Thankyou!!!

starting me on 400 mg. Good to hear positive reports on it.

Glad it's helped you.

Hope you feelin ok today.

Take care gentle hugs sheena xxxxx :-) :-) :-)

Jessielou hey, referring to you old post re planquenil, did it offer any help with the joint pains ? I have started them like 4 months ago … thanks

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