[KarolH]

Hi everyone,

Well I got a official dx of Lupus today along with Antiphospholipid Syndrome. My Rheumy doctor spent 2 quality hours with me and it was a good visit. I really love this doctor and I am glad to have found her.

She is starting me on 400mg Plaquenil today along with a baby asprin daily. They took more blood from me and I go back in one month.

The doctor may switch me to Cellcept or Cytoxin in the near future but for now it is Plaquenil for me.

Any steriods I may need will be given by IV because of not having a stomach they can not deliver them orally.

So, after many years of being told I had MS and yet knowing I didn't have it, along comes this Lupus dx.

Mixed feelings of course and now I need to educate myself about this disease. I have not really done that yet because I only wanted to cross that bridge if I came to it......................well here I am crossing that bridge.

I am so happy to have the support of kind people like all of you.

I am tired and a little down right now so I am going to take a nap.

Chat later.:wink2:

 

[Maia]

I'm so glad to hear you had a good visit, and have found a doctor you are comfortable with... That is so very important - and she spent TWO hours with you! Wow - I'm very impressed. It definitely sounds like you've found a winner.

Take care and look forward to chatting with you more after you've rested.

 

[Surferboy]

2 HOURS Wowsers!

Here in the UK you sit/pace in the waiting room for 2 hours, and are then seen for 2 MINUTES

PS Hope you are enjoying your nap

 

[Katharine]

Hi Karol and many many hugs to you :grouphug2:

I know just how hard these last few weeks of wondering and incertitude have been for you and I have to say that I am, in a way, glad that that is over for you but OF COURSE not glad for your diagnosis.

I'm delighted that you have found a good rheumy - hang onto her!!!

It is difficult to deal with emotionally but the thing is that when you know what's up, you can deal with it a whole lot easier - so here's to the right medication, good rheumy communication and you being back in much better form very soon.

again, hug to you :hug:

Katharine

 

[sjink]

Hi Karol
Not an easy day for you today, but you do at least know what is what now.

Just wanted to send some hugs.

Oh and not all rheumy appointments in UK are like Surferboy's - I rarely wait to see my specialist, talk for whatever time is needed and feel very well cared for. All on our free National Health Service.

Your rheumy sounds great and you will get all the support you need here.

Love
Sara xx

 

[greenhaggis]

Karol,

I'm so glad that you now have the answer and you are now starting on the road the the correct mediacations to get the disease under control.

Like you I now see someone (within the UK NHS System) who is brilliant - it make such a difference and cuts out some of the stress we suffer.

Hugs Lesley

 

[Nutty]

Hi Karol,

I know it is a relief when you finally find out what is wrong for you. It is not pleasant having Lupus, but we at least know we are not crazy! So, I hope you have that feeling of relief.

Sounds like you have an awesome doctor. I have an excellent doctor too. He calls me at home every other day when I'm having problems. He has even called me on weekend from home! Not many can beat that!

I hope the Plaquenil works for you. I don't take it anymore, but I understand it can take some time (months) for it to kick in.

This forum is a great support and very knowlegdeable, as you know, so post away as you do your research on Lupus.

Nutty

 

[lazylegs]

Hi Karol,

Glad to hear you don't have to keep searching for a diagnosis any more. Hopefully the Plaquenil will help. 400 mgs to start is high. If you have problems you might ask to go down to 200 mgs and then back up once your system adjusts.

Take care,
Lazylegs

 

[Lily]

Hi Karol :hug:

Well done, I am so glad you no longer have to wonder, worry and wait to find out exactly what it is you have :hugbetter:

It is exhausting emotionally though, so be kind to yourself the next few days and get some rest.

I'll back up what lazylegs said about the Plaquenil, if you find the side effects too much at first (usually tummy and or bowel problems) then take it back down to 200mg to start and work your way up.

I am putting you on our list of MS'ers who weren't really MS'ers there have been a fair few of us, me included.

She sounds like a very thorough, caring doc. My initial appt with my current doc who diagnosed me was just over an hour, let's face it there's so much to go into with nervous system stuff as well as all the other stuff It's satisfying and feels good though, that finally someone takes the time to do that and listen and sort it all out.

hugs to you,

love
Lily

 

[Mrs M]

Hi Karol

I'm sure you've got all kinds of emotions going on right now but at least you now have answers!
I hope you are doing ok and that your meds go well.

Take care
Love Mrs M x

 

[cad]

Hi Karol
Congratulations Karol on the diagnosis. I am sorry that it is lupus and APS but am glad atleast after all the ups and downs that you had you were able to see a doc who took the time to assss you properly and was able to give a clear diagnosis.
I started on 400mg plaquenil about 10 wks ago. I hope it helps to seettle down some of your symtoms.
Its also really good that you are being follwd up in a month.
I was only diagnosed 2 wks ago with MCTD despite being on NSAID, plaq, high doses of pain killers ,just stating a 5 wk course of high dose steroid and then bing told after the steroid i would be put on methotrexate, i am still not going to be seen again until Feb 2009!!!! This is despite the fact that i have had loads of additional tests ordered aswell which may actually alter the diagnosis!!!! I have basicaly just been left in the hands of my gp.
Sorry for grumbling on your thread i just really feel that people should be seen atleast every 3 months for the first year following diagnosis.

I wish you lots of luck for the future and really hope that now you can focus on treatment and that this really improves things for you.

Take Care
Lots of lov and Luck

Cassie :grouphug2:

 

[KarolH]

I am very nervous about taking Plaquenil because I do not have a stomach. It was removed surgically last July and I do not want to aggravate any GI issues.

Seems GI stuff is the main problem associated with Plaquenil. Also, I have major visual problems and this is another very real possible side effect of this drug.

I am nervous to say the least about starting this medicine.

 

[Clare.T]

Hello again Karol

I don't know what to say about taking Plaquenil without having a stomach. Sorry I don't know how anything is absorbed without a stomach, except that maybe nutrients and drugs pass through the intestine walls ? Maybe not having a stomach means you wouldn't have gastric side effects ? I am pretty sure that Plaquenil can be obtained in other forms from a compounding pharmacist so maybe an injection or a suppository would be the answer.
The best way of avoiding gastric upset with Plaquenil is to start very slowly to give the body time to adjust. If there are any adverse reactions they will soon show up and stopping the medicine means it will more quickly eliminate and thus side effects will stop sooner. The other advice is to always take with food.
As for the eye risk you should have a base line eye exam within a few weeks of starting or before starting if there existing problems. Maybe Plaquenil would be contraindicated for you. If so, there's another anti malarial called Quinacrine that doesn't affect the eyes.


Perhaps you can ask your pharmacist or gastric specialists about how Plaquenil is absorbed. There must be other people in your situation, faced with similar problems with taking any sort of meds.
The Cytoxan is usually given intravenously anyway but the Cellcept is oral as far as I know. Incidentally, it seems odd to be talking Cellcept at this stage and especially odd to be talking Cytoxan which is a really big gun. Cellcept is being used for a variety of lupus conditions these days, but in the standard drug use hierarchy, it is most often taken as the precursor to Cytoxan or maintenance post-Cytoxan, since it has fewer side effects. The usual drugs added to Plaquenil are either Imuran or methotrexate.

All the best
Clare

 

[Parkesy]

Hi Karol, Heart goes out to you but @ least you have one less big worry on your mind, that thing that nags you 24/7 the little voice going "but it could be this, it could be that!"

Glad you have had ur dx & hve strted ur meds

All the best

=)

 

[KarolH]

I am finding myself angry that I got a dx of MS before the truth came out.

I could have been treating this correctly for a long time now but no on would listen to me.

Now it has effected my brain and nervous system and this very well could have been avoided.

Guess there are plenty of us who got MS before Lupus and with that a lot of wasted time.

 

[Nutty]

...I could have been treating this correctly for a long time now but no on would listen to me.

Now it has effected my brain and nervous system and this very well could have been avoided

I empathsize with you Karol. I am prone to blood clots. When I broke my leg, I was on a preventive dose of levenox. I still got a clot the whole length of my right leg. I was on blood thinners after this and then the hematologist decided to take me off. (I also had a DVT and Pulmunary Emboli before the leg was broken.) He decided to take me off blood thinners because I have a small ulcer in my esophagus. Less than a year later, I had a massive clot in both lungs. The hematologist that took care of me then said it was basically a "no brainer" decision that I needed to be on blood thinners. It was certainly more dangerous than the ulcer. Then I got the Lupus diagnosis. So, I often wonder if I didn't have the last blood clots whether I would have Lupus or not. I suspect it could be from the trauma of the clots. Oh yes, I forgot, after the clots I had 4 litres of fluid on the lung, which had to be drained from a chest tube. So, that added to the trauma.

We are left to deal with this and we will. It's okay to be angry. It is part of the grieving process. We have to greive our losses (quality of life). We are here to support you, so fire away!

Nutty

 

[KarolH]

I do a mail order for my meds so I will start them once they get into my mail box, probably with in a week or so.

I will let you know how it goes.

From what i am reading it seems Plaquenil takes some time before you reap the benefits.

 

[greenhaggis]

Good luck with the plaquenil!

Just curious are they prescribing the intravenous plaquenil for you?

Love Lesley

 

[KarolH]

I will start on oral Plaquenil but the Rheumy doctor said if it cause any GI distress then we will switch to IV methods.

I am a challenging case since I do not have a stomach and YES, most things are absorbed in the stomach.

I am going to talk with the pharmacist and my GI doctor this coming week to see how Plaquenil is absorbed because if a stomach is needed for absorption then it will have to be given by IV.

 

[KarolH]

Clare T

The idea of Cellcept or Cytoxin is because of the CNS involvement but the doctor will start with Plaquenil and we will see how things go. Hopefully it will work wonders and I will feel human again.

It has been a long time since I have felt normal so I welcome anything to get me back on my feet. I think that will happen now with the correct dx and correct meds.:wink2: