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Discussion Starter · #1 ·
Hello all,

I thought it was about time I brought my little bit of positivity and encouragement to these boards.

There are a lot of new people here and a lot of people going through a hard time so I hope this helps a little.

As some of you know I haven't had an easy couple of years.
I have to say that I have thought a while before posting, almost scared to do so...must be the superstitious Irishness in me!

Earlier in the year I posted saying that things had been great for a couple of weeks. Unfortunately as many of you know I then had a pretty big setback and breathing problems linked to trying to reduce prednisolone.

Basically my disease has been difficult to control. I have been far luckier than many as I haven't been in hospital and I haven't had any major organ problems (we'll forget whatever is happening to my breathing here :lol:).

Anyway. For the last couple of months there has been a change. A subtle one which is quite different to what happened earlier in the year. I "feel" a kind of stability and I have a kind of endurance I didn't have before.

I no longer get severe muscle reactions from the slightest exercise and can now walk the dog at a relatively normal speed. The only thing that stops me there is the breathing but the dog is good and stops dead as soon as I need to, he's got used to it.

I have a feeling (and the rheumy agrees that it could be), the plaquenil has finally kicked in. Now this is 18 months on!! The disease is still well active and I have a lot of inflammation going on but it doesn't stop me feeling more human and it hasn't taken away that increased endurance. I can live again!

We even managed a week-end away which involved lots of driving and one day of about three hours walking. I was tired for a few days after, had to take it easy, but I did it!!

My brain was a big problem. You might all laugh but I used to be pretty bright :lol: and being on your toes was essential as an in-company trainer. Recently my cognitive issues got a lot worse. They were really worrying me and I lost over a month's work (I only work a few hours a week now as a translator). The cognitive issues were accompanied by daily headaches. I had had this before - lupus fog - and it had seemed to get better with better disease control but nothing was heping this time.

I phoned the neuro who said to try riboflavin. That did zilch unfortunately. I talked it over with the rheumy when I saw her but although she took it seriously she didn't want to change any meds as she wanted to try and confirm this "stability"...so there was me at a dead end.

Now, to be fair, neither of these docs knew me before I was ill, so maybe burbling pixie mode seemed fine to them but it wasn't to me...

I went to see my GP three weeks ago (for my son) and, of course, he asked how I was doing. I kind of said fine but said that the brain thing was deeply distressing for me etc etc...I explained some of the things that had happened and he literally sat up and looked shocked! You see, he has known me for years.

So, he said, we could try some piracetam (nootropil). He said that it should work both for APS related problems or if things were due to lupus vasculitis. Of course, I had never heard of it. Anyway, so far, touch wood....it has worked wonders. My brain is quite functional, doing a whole lot better - I still have some odd memory things occasionally - but really, I can work, I can think, my mind feels full of fresh air and I have NO headaches. For me the difference is nothing short of miraculous. And, the great thing is, it doesn't, in any way change or influence my basic lupus treatment.

All that really, just to say that, even for those who have trouble controlling their disease, things do get better. Manageable and quite liveable.

I'm hoping this will continue. Next week will be a HUGE test as we are taking an enormous step and we're going to Greece to see a friend. I'm really looking forward to it even if I'm slightly afraid it might have a bad effect...but hey, it might not and it's soooooo good to be able to consider it!!

love and hugs to all,

Katharine
 

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Yiipeeeeeeeeeeee Katharine!!!!!!! That's brilliant news!!!!!!! :excited::cheer2:

So glad piracetam has helped your brain so much!!!! :bigsmile: :thumbs:

Hope you have a wonderful time in Greece next week!!!l!! :p

May the "stability" you feel last for a long, long, long time!!!!! Like 70 years or so!!! :rolleyes:

:flowery:

Zoi
 

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Katherine, it's brilliant to read some good news :)

I hope you continue this way from now on :)

Have fun in Greece. And enjoy the great food they have there :D
 

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Hi Katherine,

Glad to hear things have improved. Definitely keep your GP, sounds like a gem.

Have a great time in Greece. Just remember to pace yourself.

Take care,
Lazylegs
 

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katherine im happy for you, enjoy your little holiday

take care
Lin x
 

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Hi Katharine

Thats absolutely wonderful news about how the medication has changed things for you. I know what you mean though by almost not wanting to jinx things by even mentioning that you feel good:lol:

I am so glad your cognitive function has improved and I hope you have a wonderful time in Greece. Thanks for the post.

Take good care
Joan:rose:
 

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What a brilliant post Katharine! I am so pleased for you. This medicine sounds like a miracle drug and I wonder why I have never heard it mentioned before. I see it was invented by a Belgian pharmaceutical company.
I feel I could benefit from large quantities !
Have a wonderful trip: I am sure you know that there are some things that just have to be done. Your friend will be thrilled to see you.

:)

Many hugs
Clare
 

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Discussion Starter · #9 ·
you know Clare, I am soooo relieved. I thought that this post was rambling and incoherent that it was really not doing the new med any favours!! :rotfl:
 

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Hi Katherine,

Great positive post, glad things are better!

Can you fly some of that drug to me, sounds great!

Have a superb time in Greece!

Hugs,

Lesley
 

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woohoo, glad to hear that things are looking up for you! Fingers crossed it stays that way (sorry, ever the pessimist)

raglet
 

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i am also glad that things are so much better for you Katharine, your post gives hope for so many people that are not doing too good right now.

:):) have fun in greece.
 

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That is great news and though I have never met or chatted with you I am still happy for you and wish you the best. It is nice to know that hope is not lost yet. lol. I hope that you are still a normal person for the rest of your time and the lupus is under controll for you. You bring good news for the rest of us and a renewed hope for us.
Have a lovely time on your trip and enjoy something you haven't in a long long time for me.
Tammy
 

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Dear Katharine,
This is really good news. I am so glad you feel better. I am off to see a Neuro soon,so I hope I get some help with my mad bumbling brain.
You certainly sound so much better at the moment. Enjoy it.
x Lola
 

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Hi Katherine,

It is great that things are improving for you.:)

Have a great trip to Greece.

Love,
Lyn
 

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Discussion Starter · #16 ·
Interestingly there is an article in this week's "soir magazine" (sorry guys in French) which basically tells us that laods of well known meds that we all take (OTC and prescription) have no known proven efficiency. Among them, under the meds listed for vascular problems, is my new med piracetam (nootropil). I did already know that there seem to be very few studies on this med and especially its use with people like me/us. I also believe is isn't even available in the U.S.

Of course, it's all rather "blanket statement" and the article doesn't go into half of the complexities of any med (or illness) not does it look at other "uses" for a med.

In any case I have never yet benefitted from a placebo effect from anything and this med has had a very clear and visible effect on whatever was troubling my brain!

just food for thought of course,

Katharine
 

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Hello Katharine

The placebo story comes from an article in the BMJ

http://www.bmj.com/cgi/content/full/337/oct23_2/a1938

I can't get very worked up about it or rather it is such a huge topic I don't have time to! There's a difference between not knowing how a med works and prescribing something you know can't possibly have any real effect on the symptoms, such as sugar pills. Not so long ago nobody knew how Plaquenil works but they knew it does work.

Just having complete confidence in your doctor is also a placebo effect. There's also the opposite ' nocebo' effect - if you think a drug will hurt it probably will as in feeling side effects more or at any rate won't be so effective. Our job as patients is to check out what meds we are being prescribed and to make as sure as we can that the doctors are doing their job properly.
Doctors themselves have nocebo and placebo effects in the way they treat their patients. I have had a couple of doctors over the years who were so comforting you felt better just from talking with them.

Cheers
Clare
 

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Discussion Starter · #19 ·
Yep Clare, can't agree more!!

I actually intensely dislike articles that make such statements without including all the facts and that are also terribly simplistic when looking at such complex diseases and med actions.

Also they were "naming" drugs as not being effective for one thing and kind of brushing over the fact that they are prescribed for many other reasons. For piracetam for example they simply said it generally has minimal effect overall (in reference to vascular issues) but what about all the other things that it helps? and is "minimal effect" not a very relative statement?

I'm with you on nocebo and placebo. They are well known and I'd say that the nocebo effect can be pretty dangerous with a portion of the population already wary of taking medication. Some people are already so scared of taking things that they actually genuinely need. That's why I don't like this kind of briefly gone over "naming and shaming" thing in a paper that is basically your weekly TV programme guide.

sorry, I've gone on there. I actually wanted to say all that so much better - hope you all followed that :lol:

Katharine
 

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Aww Katharine xx
You are so eloquent. Even with brain fog Im sure you can express yourself better than I can. (I know Im blonde but it is out of a bottle). :rolleyes: and I cant claim brain fog either.
Really pleased you a feeling so much better.
I know what you mean about being reluctant to mention it though. Really hope it is long lasting and theyve found the right treatment for you.
We really do have to celebrate our good times dont we. Have a lovely time in Greece.
So pleased you are doing well.
Luv Sal x
 
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