Update, Good news on plaquenil!!!! :-) :-)

[jessielou]

Hi all

Rheumy dept at local hospital has agreed to shared care with gp. Appointment in next 2 weeks, eyecheck then go-ahead with plaquenil treatment!!

Get there in the end.

Take care all. Gentle hugs sheena xxxxxx jessielou xxxxx

[marycath]

Hi Jessielou

so pleased for you- shared care seems to be the way ro go. Yes y eye specialist does the checking for me. I hope that you will soon enjoy the benefits from taking Plaquinel Like you I had to fight very hard to find a rheumy who would help

Enjoy

[jessielou in reply to marycath]

Hi Mary

Thanks hon, I think we have to keep fighting for everything, but get there in the end.

Took me 9 years of fighting to get whats right for my son with Autism so I am well used to fighting the system.

As the saying goes, `The wheel that squeaks loudest, gets oiled`. I just keep getting louder!! lol!!

Hope you well today

Take care gentle hugs love Sheena xxxxx

[Storky]

Having same issues with plaquenil. GP cant or wont prescribe as its a drug that has to be monitored by a consultant. Thats the bad news. The good news is to get it I have been referred to Tommys. Will have to wait now for that to come through but hopefully they will give it to me when I do get there.

Pleased you have at last got it Sheena, hopefully it will not be too long before you feel the benefits.

[jessielou in reply to Storky]

Hi Lyn,

I hope your appointment at Tommies doesn`t take to long hon.

Hope you not feelin to bad today

Take care gentle hugs Sheena xxxxxxxxxx

[SharontheSheep]

Yahoo at last - persevere with it tho, cos it may make you feel really yucky for a while (did me) but then the benefits have been great especially with the early morning stiffness, ulcers, and generalised joint pains...but it does take time. Also I needed a much higher dose to begin with.

fantastic news

Love Sharon xx

[jessielou in reply to SharontheSheep]

Hi Sharon

Thanks hon, I`m not expecting miracles, would be nice though!!

If it eases the pain a bit and cools rashes and hairloss down would be great. Recently started on Lyrica that was awful to start with but worth it now cos it helps a bit with pains in feet. Everything crossed!!

Hope you feeling well today

Take care gentle hugs love Sheena xxxxx

[jetjetjet]

isnt it a pain to try to get things going in a possitive direction. my doc swont give my anything because it sends my i.n.r. all over the place. i cant go over 2 weeks with out testing . they did give tramadol , but then stopped it . it was for my migraines. now i have nothing. i was testing every 3 days now im testing every week. what i take is warfarin [jantoven ] 2-5 sdepending on i.n.r. ,1500 m niacin, 40 m pravastatin., 1 multi vitamin,3600 m fish oil, - all these daily , but nothing for all other symtoms , at least till i see rheumy, for very 1 st time on nov 2 nd at the hitchcock clinic in up state n.h.. iu really dont what to expect from them jet

[jessielou]

Hi Jet

I hope your Rheumy will give you something for the migraines, i`ve had two or three different migraine meds, didn`t help, strangely steroids did, but not want be on long term steroids, have to take them for asthma at times.

Maybe your rheumy could try Plaquenil (hydroxichloroquinine) it`s a lupus med but supposed to help fatigue, joint pains etc.

When you go to Rheumy appointment. take any test results you have, daily diary of symptoms (i took 2 weeks worth, probably over the top) I also took a letter I wrote detailing how it affecting my life and how I felt about it all. Including any questions you can think of.

Reading all your posts I know you have real problems with Inr remaining stable, maybe they could try heparin (clexane) injections for a while, see if your symptoms settle?

Print any info you can find too, hit em with it all!!!

Please keep pushing Jet,

Good luck with Rheumy!!!!

Take care, gentle hugs Sheena xxxx

[jessielou]

Oh if it helps, my meds list:

Warfarin 8mg

Omaprazol and domperidone for stomach problems and nausea

Pregabalin (Lyrica) Sertraline and slow release Tramadol for pain

Atorvastatin high cholesterol

vit D (colecalciferol) for vit d deficiency

Montelukast for asthma

3 Inhalers for asthma

Nebuliser as required asthma

fexofenadine for allergies

Epipen for allergies

Prednisilone when needed (not like them though)

Check with Rheumy about supplements and vitamins cos I know my vit D will interact with Plaquenil, It also I believe it interacts with warfarin, (lots of things interact with warfarin)!!!!!

Take care gentle hugs Sheena xxxxxxxxx

[sharonbockemehl]

My Rheumy started me on Plaquenil about a month ago, he told me that it generally takes 3-6 months to work if it is going to. I actually felt a difference within 1wk. The joints in my hand we're not as swollen and some of the redness in my knuckles was gone.Sometimes if I glance at my hands they actually look normal for a few minutes : ) He also started me on Methotrexate and folic acid this wk. God I hope this works.

This is my 2nd Rheum, the first one I was seeing since 2004 when I had my PE and he never would help me with my pain, he just called it Fibro and never would check for anything else. I had had it with him blowing me off and found a new Doc and am sure glad I did.

You have to be persistent and be your own advocate, this your life!

Good luck!

[jessielou in reply to sharonbockemehl]

Hi Sharon

Welcome to the site hon, glad to meet you,

Been through pretty much the same. Good to know it could impact that fast. Here`s hoping!!

I hope the Methotrexate works for you!!

Had to do same and find another Doc, well worth it!!

I hope you are well today

Take care gentle hugs love Sheena xxxxxx

[jetjetjet]

hi jess - if i still had dr. macall i wouldnt be having these problems. she was the best everybody misses her even the nurses and other docs. she wasnt afraid to push and fight , she woudnt .cow down to no one!! thank god for tiffany and kelley my nureses. i dont know if i told you of my care plan dr. mcall put in place.what it does is her, tiff kell,kim are the only ones that can deal with me, other than the speacilist.my body dosnt react well to meds , it never has and this makes it toughon the docs i know.er. doc gave me morphine 1 st shot did nothing , he was amased ,2nd sho not much, 3rd shot it finally started to work for him. he couldnt believe my body at 173 lbs took that much . tiff and kell both say thier is the rest of the world we treat with meds ,than there is you jim . in all honesty im not that easy to treat but!!! its so frustrating at times as we all know . like i said i guess i will have to give rheumy a fair shot at me . i know my neuro is starting to take note of things, i told her she would be recieving all dia. from everbody. and i wanted her to join the team , and stay in the loop, i think this time she will , as this will be better for me . what do you think jess ?? jet

[jessielou]

Hi Jim,

I think be great to get em all together. I really hope this rhemy knows their stuff. Your neuro sounds great, hang on to her.

Hang in their hon!

We all have to believe in things getting better.!!

Bunch of tough people us hughies!! Proud to know you!!

Take care gentle hugs sheena xxx jess xxxxx

[jetjetjet in reply to jessielou]

my neuro at first was im going to learn about a.p.s. then things didnt seem to be progressing well , so i started to bring in info , she really didnt put much into it 2nd to last visit i brough in artical from galviston texas meeting with all these great docs from around the world . i pointed out the artical she said she would give to her nureses to read , i replyed [ great then they can explain it to you ] i think that hit home , last visit i had brough some meds names that pawzs told me of . i did look them up and just knew i could take them ,but i wanted to see her reaction , she at point knew that i know what im talking about, thier are some symtoms i just dont have , so i dont bother with them, she now knows this. i think that helped. i also believe she is waiting on new rheumy. you caught me slipping and dropping my name. o well always great hearing from u be well bfn jet ha

[Hidden]

Yay Sheena!! Plaquenil has helped me a lot! It took 3 mos to really feel a huge difference but every day was a little better than the rest. Maybe 6-9 mos for full effect and that is when I realized just how much pain I had been in and how much it had been preventing me from doing. I guess the decline had been so slow and subtle I didn't really notice much and probably attributed it to natural aging, etc.

I hope it helps you as much as it has helped me!!

Kristina

[jessielou in reply to Hidden]

Hi kristina

thanks hon,

go rheumy clinic Friday to start on plaquenil.

When do you find is best time to take it, ?

Hope you well today

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

[Suzypawz]

Glad you have been listened to hun

Oh girly night Tuesdsay if you are up for it!!

Missed you!!

Hope you are well at the moment xx

[jessielou in reply to Suzypawz]

Hi suzy

tanks hon

see you tonight

hope you well today hon

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

[happee1]

so glad for you...unfortunately for me i am allergic to it...sigh

[jessielou in reply to happee1]

Hi happee1

Thanks hon

Sorry to hear you're allergic to it.:-(

Hope you well today

take care gentle hugs sheena xxxxx jessielou:-):-)

[paddyandlin]

Sheena,

I am really happy for you it is really annoying when you just want something to be simple and people make it more complicated i ahve been on plaquinal for the last 10 years and i have found it helps. Good on ya girl !!!!! you know we all right be hind ya when and if you need us

paddy