[Marshmellow]

Hello all

Went to see my new specialist today and was very impressed-until I passed out during the blood test-they took soooo much!!! Too much for my low BP!!
I have finally received a formal lupus dx which although it was what I expected has still knocked me for six and damped my festive spirit!
Anyway I’ve been given a steroid injection and put on 5mg Prednisolone with a follow up appt in 4 weeks when they are going to discuss using Cellcept.
Can anyone give me any info on these drugs and what to expect as up till now I’ve only been on Plaquenil and now very little about PREDNISOLONE and CELL CEPT

THANKS
Rachel

 

[tutublue]

Hi Rachel,

I am on both prednisolone and cellcept. I've been on the steroids for 13years now at varying doses. 5mg is a low dose. I manage on 7.5mg a day. I know many people find the side affects of steroids daunting but I've found on a low dose that these are quite ok considering the benefits that the pred gives. I gained a bit of weight (about 10kg) on them but I do also have trouble getting enough exercise because of my joint and back problems so this could also contribute to the weight gain over the past 13yrs. I do have to take calcium and Fosamax to prevent osteoporosis (weakening of bones) that long term steroids can cause.

I have been on the cellcept for a few years now because I have Kidney involvement. I have been on Plaquenil and Azathioprine but was changed over to cellcept when it came out. I have no problems with this med that I have noticed. My Lupus has been quite stable on both of these so I do hope that they work as well for you. Glad you got your Dx but sorry that you've had to join the Lupie world.

Take care.

Tutu xx

 

[lazylegs]

Hi Rachel,

Getting a diagnosis can be a shock even when you are expecting it. It may take a little time to you to accept what has happened. Just remember you are the same person you were a few days ago.

Cell Cept made me slightly dizzy and gassy in the beginning. That passed once my body adjusted to it. It took about 4 weeks before I noticed any results.

You are on a very low dose of Prednisolone. I would guess you will not have any major side effects.

Take care,
Lazylegs

 

[Joandublin]

Hi Rachel

Im not on Cellept so I cant answer your question. I just wanted to let you know I was thinking of you. Getting a diagnosis is a bit of a double edged sword and it takes time to come to terms with it :hugbetter:

I hope the steroids help you and let us know how you get on at your appointment. Keep checking your post here or 'bump' it back up after a day or two so it can catch the attention of other members and you may get more experiences on combining Pred and Cellcept.

Much love
Joan:rose:

 

[Clare.T]

Hello Rachel
It sounds as if you have at last got a proactive doctor.Thank goodness for that, as I have thought you have been inadequately treated all this time.
I can't help with the two new medicines but if there is talk of coming off the Plaquenil ask to stay on it. I am pretty sure it can be taken along with other drugs and a cocktail of meds is much more effective as each has its own way of working and its own special benefits.
Also if you stop one medicine and start another you don't know what differences are due to starting the new one or stopping the old one.

Of course he might not propose stopping the Plaquenil. I hope it won't be long before you are feeling very much better.
I am sure that getting a formal diagnosis has a big emotional impact even if it is really only the acknowledgement of an already existing situation. On the other hand it puts you in a stronger situation as a patient. It doesn't mean that you will ever get worse than you already are.

Big Hugs
Clare

 

[Marshmellow]

thank you all for your comments. yes the dx is a relief-at least people have heard of lupus as my UCTD dx just met with blank looks!! they found i have enlarged lymph nodes in my neck armpits and groin and an enlarged liver which is worrying however i'm just taking it day by day-the wierd thing is i can't 'accept' i am ill, that's what i find hardest and why i hate going to hospital as it brings reality home. anyway i'm going to enjoy life as much as i can and hope these meds make a difference

what is the average dose of prednisolone? they said they've put me on quite a low dose for now

happy christmas to all

xxx

 

[nicky00]

Hi Rachel

I cant comment on the Pred at that dose. Im on a completely different dose for different reasons. I dont take cellcept.

I did want to say about the diagnosis knocking you for six....

Personally I found the word lupus difficult to attach to as belonging to me?
If that makes sense. I still do feel strange when a doctor terms in verbally or I see SLE written down.

Having said that I also feel it means nothing other than I have a label which should help and Im not fighting for a diagnosis and the positives that should come with that.

Its a mixture of concepts , ideas and repeatedly emotionally readjusting.

Im so glad Ive got the diagnosis under my belt....goodness when I look back I think how hard and frustrating opening amd closing all those doors were.

It does take an emotional adjustment dosnt it.

 

[Clare.T]

Hello Rachel.
5mgs is a very low dose of Prednisone. Doses vary according to the doctors assessment of need and the urgency. Sometimes people start off very high then gradually lower the dose over a week a couple of weeks, sometimes people get IV Pred, 1000 mgs a day for three days. The body makes about 7.5 mgs.
I don't know what side effects you can expect at that dose but it would be a good idea to reduce salt intake ( that's a good idea anyway) and have some healthy snacks around in case you get the Pred 'munchies'

If you had had a different doctor you might have been diagnosed with SLE from the start. There's not necessarily that much difference. It is often just names, labels, classifications.
Cheers
Clare

 

[Lis]

Hi Rachel
I'm glad you've finally got your diagnosis. I've recently been put on steroids too. The dr has put me on 10mg daily and after taking them for about 10 days they are starting to make a bit of a difference, though it isn't massive. I've had no side effects at all in fact I've lost about 5lbs in weight! I don't know anything about cellcept. I am still on plaquenil (400mg a day) and arthrotec. Alongside the pred I've been given a calcium tablet to take every day, a stomach protector (I also have scleroderma and get attacks of gastritis) and something else to be taken once a week to protect against osteoporosis. I now rattle I hope you find the new meds helpful.
Lis

 

[Marshmellow]

yes Lis I rattle too as I also have calcium and a stomach protector to take along with the Plaq, streriods, iron, circulation and prozac tablets I am already on!!!

xx

 

[Sage Hen]

Hi Rachel,

It is good your on something to protect your stomach. I ran into some real problems, taking all my meds, including CellCept and Pred..over time.

I have to say..with me, that neither drug alone, is enough to provide enough relief, for me to function. I have to take 20mgs of Pred, and I think it is 2000mgs, of CellCept a day..4 a day, 2 two times a day.

Most people, I think find relief with lower doses. Now, because of a flair..I am on 20 mgs of the Pred, and my CellCept dose has been the same for a couple of years now. I think..I have been on it that long..?

Cell Cept, has helped my brain issues a lot. I was psychotic before being started on it..so, I can say for me, It has been very helpful. I also, am growing hair again on it.

Some literature, on the net about the drug, can be scarey, but as with any drug, you have to weight the risks and benefits. Also, many of us have no choice.

I felt nauseated when I first started on CellCept, and my heart raced for the first day, on it..but it stopped. I don't think the heart racing, is a usual side-effect, also.

I want to wish you the very best, starting the med..and just expect the best from it, and hopefully, you and the drug, will get along very well..

Best Wishes Rachel,
Love
Sandy

 

[bundy]

been on pred for 29 years nain problem weight gain only with high dosage
on cellcept 27 months for kidney transplant had no problems
pred 5 mg daily cellcept 1000 mg daily
lupus 29 years

 

[Jirel]

I don't know if you need any more information but... I have been on 4mg - 12 mg of pred for over 5 years. (12 mg is when things are very bad). The doctor started me on Cellcept about 2 1/2 years ago. At first it made me very nauseated but after awhile I adjusted and it helped immensely with my memory problems. I was on Plaquinal about 5 years ago but it did nothing for me so I quit taking it. I'm on 13 different meds and taking one off was great.

The biggest thing - I ALWAYS eat a little something before I take my pills. I have a sensitive stomach and yet I have had no problems with my pills. I attribute that to always eating first. Even first thing in the morning. At worst I have crackers but usually its cereal, bagels or breakfast bars. Something easy to "make" so that I don't have to be too awake. I find the pred helps so much to make me wake up in the morning that I can sometimes tell the exact min it kicks in.

Good luck with these pills. Hope they help you as much as they do me.

 

[lupus chick]

cellcept and steriods

last year i was on cellcept for about 12 months on and off cuz the drug was making my wbc and neutophil count go too low. while on the cellcept i was monitored every week with blood test. due to blood count going too low i was taken of cellcept. this month ive been put on steroids 40mg and treat inflammation.
been a couple of weeks and i am feeling better they work quickly. befor i wasnt sleeping and couldnt get up in the morning it would take me till mid day to get up.i still have aches and pains and feel tired but its nice to be able to get up at 8 30 am and sometimes have a full nights sleep the steriods have certainly improved things for me. it can take a long time to get things right but with a good dr most people get on the right track.

 

[Jynnieneal]

Cell Cept

I have been on Cell Cept for 2 1/2 years. I too have kidney involvement. Up until this point I have have been doing good. It takes awhile to adjust to the medicine. I was still in a lot of pain during the first two months of starting cell cept and prednisone. However after that it started lessen. Not that everday was or is a picinic. I was and am on a much higher dose of prednisone. Currently I am taking 1000mg cell cept twice a day and 60mg of prednisone. Plus a lot of other medications. Good luck with the treatment. They are going to change my treatment to a cytotan. I need to find out how other people handled being on that. Good luck Rachel

Jyneal