[Marshmellow]

hello all
well.....my Cellcept is lowering my white blood count too much so that’s the reason my glands have been up, throat sore, chest pain and the reason for the excessive bleeding...so they’re not the answer I hoped they would be...they are reducing the dosage and seeing if that is enough to make me feel well without having such a bad effect on my white cells. Should mean my tummy is a bit more settled though as I have found not having a loo to hand difficult sometimes on 1000mg
so I have a very sore buttock as I have been given another 80mg kenalog injection for a bit of pain relief- now my first one is wearing off I realise it was helping a lot with the stiffness
So all in all it goes on! I know it’s mad but every time I go to the Rheumy I expect the miracle pill to make me feel well again and am always disaapoi9nted when there is no simple answer…guess I’m just an eternal optimist…I know I should be grateful as it could be worse –I have a ‘mild’ case of lupus apparently…nearly burst into tears when he said that as if this is mild why do I feel so rough and my heart goes out to ‘proper’ lupus sufferers…..and at the end of the day I do have a lot of people who care and look after me but am just feeling soooooooo despondent with it all as I feel so limited in my activities. Just feel I need a month off lupus to give me the strength to carry on! Then to top it off I spent last night going hot and cold and throwing up…don’t know if it’s the injection, emotion or a bug but boy do I look rough
sorry to be doom and gloomy :worried::worried:but am FED UP
love to all
Rachel

 

[Katharine]

Hi Rachel,

Sorry you're feeling so rotten :hug:

The term "mild" lupus is indeed a very irritating one. Many of us have mild lupus in that what it means is simply that there is no major organ involvement. It does NOT mean that it is in any way mild for those suffering from it and indeed if you're rheumy really thought it was so "mild "he wouldn't have put you on cellcept nor would he listen to you and help out with steroid shots etc.

I know all that is of little comfort right now but that term just ggggggrrrrrrrrrrrrrrrrrrrr gets to me!!!

hugs again :grouphug2:

Katharine

 

[lin]

grrrrrrrrrrrrrr sorry you fel low hugs..... and no i dont know what they mean mild grrrrrrrrrrr i was told mild in 2000. not now its grabbed organs, like you im on cellcept, when it was as you say mild!!! i was only on plauq 400mg........ you take no notice
ps hope they get you sorted out lovey xx


get well soon hugs lin xxxxxxxxxx

 

[Merle]

Hi Rachel

My husband and I both had a sickness bug this week - hope its of help to know that there is a bug going round.

Take care

Merle

 

[Sage Hen]

Dear Rachel,

I am so terribly sorry, your feeling blue, and very bad physically, also.

Your dr, seems to contradict himself. First by telling you have "mild" lupus, and yet putting you on Cellcept.

Cellcept woudn't be prescribed unless the benefit outweighed the risk, to begin with. Very strange, indeed.

Cellcept is reserved for organ involvement.

Don't let the term "mild" get you upset. I don't think..it means your joints hurt any less..than someone, that has organ involvement.

Very often the drs, don't know right away, that there is organ involvement, anyway..as bloods, don't always reflect what is really going on, especially with brain and nervous system involvement.

This was true in my particular case..

I hope you feel better soon Rachel.

Take care, of yourself.
Sandy

 

[KarolH]

Hi Rachel,

I love how Sage Hen worded things about your doctor contradicting himself. I could not have said it better myself. I am so sorry that your feeling so bad and left your appointment feeling worse. I do hope you get on with feeling better and I hope you do indeed get that month off from Lupus.

Sure hope that the flu bug or whatever it was is behind you now and that you can get on with enjoying your weekend. Keep you chin up.

 

[onetay]

Rachel,
We all hope for the mircle pill, one day one of us will see our rhuemy and will get it and share that exciting feeling with the rest of the site. Until than we have to hug each other and support each other any way that we can. Oh a month off of lupus sounds wonderful and silly me would of been happy with one day lol. I am sure the doctor is doing the best that he can for you. As for him telling it is mild only you know how bad it gets and can get not him. I know he is the one with the medical degree and all but we are the ones that live the life of lupus, and maybe it is time that the medical community see that. Well it won't be today but soon. It is never easy being sick all the time, all we can do is as we keep saying one day at a time. Tomorrow maybe your day, let's all hope so. I hope you start feeling better soon.

 

[Zoi]

Hey Rachel :hugbetter:

I'm sorry to hear about your appointment and sorry that you are unwell at the moment...

Mild lupus, like the others have said in their replies, is just a term doctors use and it means that you don't have organ involvement. It does NOT mean that your pain isn't severe, that you are not suffering from this or that you are not seriously unwell from lupus. I have what the doctors call severe lupus or aggressive lupus and I can understand how compared to what severe lupus can do and how it can manifest in a person doctors call the non-organ threatening form mild. Don't throw stones at me yet though, allow me to explain! What I mean is that when doctors use the term mild they are usually using it as "comparison" to the more aggressive, severe forms (at least in my experience and from what my docs have told me). However when they don't explain their use of the word at all and they just say it to a person who might be suffering quite severely, mild becomes an insensitive and rather offending term as it bellitles a person's pain and suffering. And I am very sorry you had to hear something like that from your doctor.... Do you see the same doctor each time? Is he the doc who initially put you on the cellcept?

Ah! By the way, did he mention anything about what med he plans to give you to replace the cellcept?

The kenalog shot sounds good, I hope it helps your joints and pain.

Sending loads and loads and loads of strengthening hugs your way :grouphug2: :grhug:

Hang in there Rachel,

:foryou:

Zoi

 

[Marshmellow]

Thsnk you all soooo much

I am feeling a bit more human again though still far from great.:worried: it was the 'mild' lupus thing that made it worse-felt like being hit when I was already down!

As regards my meds the doc (the one who put me on cellcelp and initailly wanted me to get up to 2000mg a day) is reducing the cellcept dosage to 500mg along with my plaqunail and seeing if that is enough to make me feel well ...hummmmmmmm! he did mention 'other' things to try if not so we will see

The injection definately helps though

thanks again
Rachel

 

[pollianna]

My Rheumi said to me you have a Lupus like illness, saw the look on my face and added. I'm not saying your not suffering, I am telling you it's not going to kill you!! I wish they were all like him .

Sometimes we just need someone to acknowledge that they know we are suffering. I'm not surprised you felt low. I felt the same after my last appt.

Great news that you are feeling better in yourself. It's a trauma (I believe ) keep going to hospitals, let alone having injections .Be kind to yourself and be mindful that yes there are people with aggressive illness but that doesn't mean you suffer less with a chronic form . Everything is relative

:hug: xxP

 

[Douglas]

Howdy Rachel,
I define "mild lupus" very simply: if you are still alive your lupus is mild.
Good luck!
Douglas+

 

[ROSJAC]

Hi Rachel, My Rhumy has never used the terms mild or severe. He told me a few years back, that 50% HAVE IT WORSE AND 50% not as bad. I started Cellcept about 5 months ago because of lung involvement. Before that I took Imuran for several years but in raised my liver enzymes to a very high level(250) I started on 1000mg. a day for Cellcept, then increased to 2000, now because I was having a tough time he lowered it to 1500mg.I never asked what percentage I am in now, what difference does it make. I have been seeing him for 11 years and we have a great relationship. He takes the time to talk and answer questions. When tests come back, he, not his nurse, calls me. I hope you continue to improve. Best Wishes, Rosie

 

[keebler]

(((Rachel)))

Mild lupus should not be said, just like some people get told they are borderline diabetic. You either have diabetes or you don't. We all suffer with lupus. Don't let that statement get you down.

I hope they get it sorted out for you and you start to feel better soon.
Love,
Lyn