Gp appointment.(It's always something.)

[Shani]

Hi everyone,

I justust got back from Gp.
Not very good news.

He read the paper that he got from Neuro and it said 'Polyneuropathy'.
He was talking about that he wishes he could take it from me because I don't seem to get better nor is the steroids giving me relief/helping.
I told him I'm going to ask my Rheumy about what he is planning to do, trying different treatment etc.I
let him take a look at my shoulders, fingers aswell, but Gp said probably just all the Lupus doing it.
My mobility was good though, but probably inflammation reactions like the rest of my joints.

He really feels sorry for me because I'm so young and have to cope with so much pain.
It's nice to have such a caring doctor.

Well he said all of the pills I take have side-effects added to the things Lupus/Sjogren already causes.
Like the Polyneuropathy I have now, most likely due to Plaquenil.

Gp also said that I probably also have fibromyialga for a part.
I knew that already somehow, but it's just a bit of a 'shock' to hear the doctor actually say it.

But I'm not sure if it'll go away, Neuro said it could take months to improve.
We'll see I guess.I'm not feeling well at all, a lot of pain and feel feverish.
Trying to hang in there and keep smiling as always.

Lots of love and hugs. <3

[navydad]

I truelly feel bad for you,, neuropathy sucks and you cant explain it to anyone how it feels ,, try telling someone that it feels like spiders are crawing all over you,, miserable stuff,

[Shani]

I definitely agree Navydad.
I knew it was going to be Neuropathy.

Good thing I guess my Emg was normal.
But now I need to probably live with this like all of the rest.
Just because Plaquenil has caused this or probably Sjogren/Lupus for a part too.

[aussie mum]

Dear Shani,

Sending many gentle warm (((((((hugs)))))) from Australia.
You are such a strong woman, with wisdom far greater than your years.
I agree, your latest diagnosis is not good but I am so glad that you have such caring Doctors around you.

Take Care
Aussie Mum

[irish]

shani, Did you talk with your GP about a different medication like Cellcept, Imuran, etc. There are several out there. Also, was IVIG mentioned at all. There are things that can be tried to stop the neuropathy, etc. Just have to find the right doc and right med. Good luck. Irish

[navydad]

I wish I were back on IVIG,, I think it did me some good, I have to wait until this new neuro decides if she wants to do it or not,, the old one went by Mayos suggestion that I dont get it anymore,, I would rather do that then be on other stuff,, its just to hard on the body,, IVIG never gave me any problems,,, Now Rituxin,, thats a differnt story,, might be good for some,, but it wasent my cu of tea,,

[Joe S.]

I know that this does not help you. It broke my heart when you joined. I have a problem with young people getting these diseases. It seems so unfair. The meds you have been given create a new set of symptoms. Then to find out you have another AI. I am so sorry for you.

[Shani]

Thank you Aussie mum.
You're so sweet!
I'm trying my best to keep smiling although I had bad news today, need to be strong.
Lots of hugs to you!

Thank you Irish.

Yes I have talked about that with Gp like Methotrexate for my joint issues and Iv/Ivig treatments.
But of course I'm so young, they rather avoid it but it are options though.
My Rheumy already didn't really like to put me on steroids.
But he's the 'big boss' so it is up to him what we will try.

My appointment is in January.
I told mom we need to ask what he is planning to do.
I know I never will be symptomfree but I'd atleast like a better life quality.

I really hope they will try you back on IVig if it helped you Navydad.
Would be great to see you feeling better.

Thank you Joe.

It's ok, it is a little hard to I guess 'accept'.
Because accepting you have chronical and uncureable illnesses is one thing.
+Knowing the diagnosis too.
But what all follows next is a different thing.
Sometimes it doesn't seem to stop.

But what can we do I guess, just make the best of it and hope to find the right treatment.
I really wish I could avoid IV and all the drugs that have a lot of side-effects.
But I do think this will be the next option now or should be.

[tomsmom]

Shani,
I'm with Joe-- It makes me very sad that you have any of these diseases.  I can't imagine being your age and having all of this strike.  Despite this, your positivity is amazing.  I pray there will be a cure soon for all of us.

[Shani]

Thank you Tomsmom.

You're all so kind and caring here, made me smile and feel better already.
Thank you so much for being you.
We do indeed need a cure.
If I had a magic wand, I'd make us all painfree.

Hugs!

[Prairie Gal]

Shani, I just Googled 'Benlysta', the new drug for Lupus that the FDA recently approved.   I have no idea when this drug will be used widely or how much it will cost.  The WebMD item also quoted a dr. who said many people didn't get much benefit from it.  But the item I read (it was from WebMD) quoted a 24-year-old woman who feels quite well now.

I therefore think there is hope for young people such as yourself to get relief from your pain in the future.  If they've come up with this new drug, there are very likely others on the way.

I know it's hard to hang in there when you're hurting, but I've seen how well you cope.  You realize that life goes on and all we can do when we hurt is take it one day at a time.

{{{BIG hug!}}}

[Shani]

Thank you Prairie Gal.
I have read some things about Benlysta and have a few people whom joined the trials.
I do think it is quite expensive though, so I've heard?

This could be a good thing to ask Rheumy about aswell.
No idea when it will be released tho.

And yes that's true, there will be a day that they find a good drug.
I will always keep hoping.

That's what I keep reminding myself, take one day at a time.

Hope you're having a great day. <3  

[inga]

Benlysta is a monoclonal antibody, a cousin to Rituxan.  It is only indicated for seropositive Lupus at this time.  I believe, for a while, it is only indicated for seropositive, and in the failure of other meds, but I am sure you can ask about it.

It is scheduled for a review by the FDA in March.  It was supposed to be approved in Dec. but there were issues.  It won't be approved until March and then it may take time to reach the market.  But, you are not in the US if I recall?

[Shani]

Thank you [bb]Inga[/b].

And I am indeed no in the US.
Meaning it might take longer to come on the market here.

[Suzie]

Hi Shani,

I'm praying that your nerves heal and the polyneuropathy disappears.
I don't know what your docs are waiting for - surely the side effects from IVIG or Methotrexate or Imuran can't be worse than all this pain you're dealing with?

I am in awe of you. You are suffering but facing it with such courage and fortitude. But please remember that we're all here to listen and comfort you if you need to complain, shout, cry or rant at the unfairness of it all. Don't hold it all in if you ever feel the need to vent.

How do you keep up with your schoolwork? Are you able to go to school? You're obviously extremely intelligent and I bet you're academically gifted. And where did you learn such fluent English? I'm having enormous trouble learning a second language here in Greece! 4 years here and lots of classes and I can still barely communicate. I'm blaming it on brain-fog...

Hugs!

Suzie