[goldensgirl]

I am really shocked. Went from seeing a GP (not the one I see now, I switched) who treated me as though I was full of "beans", to seeing my Rheumy who is terribly concerned.

Her report says that she suspects CNS disease from Lupus, and also vasculitis. She says that if I don't get significant turnaround in my condition, she does not feel I will be able to return to work. She has sent me to Neurologist, but the app't is not until a week from tomorrow. She does not want to wait, and wants me to go to hosp for pulse therapy with 1g solu-medrol, plus cyclophosphamide infusion as well. She wants this done tomorrow.

I know these are drastic treatments, especially the cyclophosphamide, I don't want that unless absolutely needed. I've also heard that the pulse pred can have some bad effects, and am feeling leery of that. However, if I am getting CNS damage from Lupus, I may need this, as I can't afford to lose my CNS - it is quite important to me.

Has anyone had a similar experience?

Can anyone tell me what they know of the side-effects of the pred pulse?

Has anyone had cyclophosphamide in this manner? She wants 500mg in 250cc normal saline infused over 2 hours.

Any help, thoughts would be appreciated. I am all alone and have no one here with whom I can discuss this issue.

Thanks.

 

[raggedyann1]

Jenn,

I haven't had the treatment regimen that your rheumy is proposing but I have seen other members over the years who have had some serious treatments almost immediately following diagnosis. What I will say is that no doctor would order this treatment without significant concerns for the patients health. I know it is scary and has you worried.

Prednisone especially in large doses can cause psychosis however that is not a normal side effect.
Here is one article on Lupus and the Brain
http://www.lupusinternational.com/Resources/faq_detail.aspx?id=197&s=1

Here is an article from Johns Hopkins discussing prednisone side effects.
http://vasculitis.med.jhu.edu/treatments/prednisone.html

Also from Johns Hopkins on Cytoxan
http://vasculitis.med.jhu.edu/treatments/cytoxan.html

Here is a discussion on Infusion Therapy for Lupus from Hospital for Special Surgery in NYC. Despite the name being confusing this hospital is fairly well known for lupus doctors and research.
http://www.hss.edu/conditions_22813.asp

Hope this helps. Let us know what you decide to do.

Take care,
Karen

 

[goldensgirl]

Thanks Karen, I will review these links. My Rheumy is to call me back, and I will try to get some questions asked. I am a bit scared. My mom is trying to dissuade me, based on her experience with pulse pred, she said it was terrible. However she was also taking higher dose oral pred, so it's hard to say what was from what. Mom is also having a hard time accepting I am this sick, I know, and so that may be affecting her objectivity. How can a mom be objective anyway.
I'm more concerned about the cyclophosphamide, I hate to get sick and lose my hair if it's not necessary.

Thanks, I will update as I can. Any other feedback would be welcomed.

 

[Maia]

That is a fast turnabout, from no treatment and not being taken seriously to in hospital IV infusions of two medications. You must be reeling...

Have you asked the rheumy why she feels it can't wait a week until after you see the neurologist? Do you feel ill enough/worried enough that you agree with her? I can understand your concerns, and would also be hesitant to jump straight off to these medications myself. Perhaps you can ask to just do the IV pred, and ask for more time to decide on the other one or until the neurologist can provide some input into treatment as well.

The rheumy probably has good reasons for this, but it is important for you to understand why it's important and why it can't wait. At least - it would be important for me to understand & I think that's what you really want for yourself too...

Good luck with everything. If you are uncomfortable with anything, then a second opinion is always a good idea too.

 

[goldensgirl]

Maia
I agree with everything you said. I am wondering if she had some more test results I am not yet aware of. I am expecting her to call me back so I can ask more questions. From what I read about CNS vasculitis, there are a number of tests that should be done before undertaking such aggressive therapy, if at all possible. I was also thinking maybe I could do the pred pulse and wait on the rest. I also see that they usually do a course of the treatment, on a number of days, and I thought she was just going to do one. Maybe she is hoping this will settle things enough, until I see the neurologist. It is all so unknown, I wish I had someone who was not ill and could ask some questions of her, it is overwhelming when you already do not feel well.
For some time, I have suspected I was quite ill, but never imagined this. I am sure she would not be suggesting this if it weren't needed, but still I am concerned. There are a lot of risks to this treatment, but then are the risks of waiting even greater? I don't want to lose anything more of my health than I already have lost, I certainly don't want to lose my life.....or my functioning CNS (as it is).
Thanks for your help. I will be around checking for any more posts.

 

[Lily]

Hi jenn,

I hadn't seen this update from you when I answered your other post re proposed Pulse Pred and Cyclophosphamide.

I too would want to know why and if just having the pulse and waiting to see the Neuro was an option. Of course she probably has her reasons, but undertaking such a serious treatment option as Cyclo I would want to know why before proceeding.

I would also want to know why she suspects Vasculitis? Do you present with typical symptoms? Mine was a classic presentation...........are you experiencing these on a daily and worsening basis, or is it a more relapsing remitting presentation that most with it experience? Granted when you have a relapse you are very very ill and usually bed bound.

http://www.cnsvfinc.org/Default.aspx?pageId=28187

http://www.cnsvf.org/CNS.htm

Each of us is slightly different in how it presents and what treatment we need. Admittedly my doctor is very cautious but was always at hand and ready to jump in a crisis however he held off starting treatment until I had conclusive evidence from the Neuro. Even then my treatment was a lesser Immunsuppressant to see if that got things under control. You may not have that luxury but you need to feel comfortable with the decisions she is making.

My pulse Pred doses in hospital were not for Vasculitis but for Pleuritis and Pericarditis, even then they were 1,000mg daily for a few days. However we cant compare and we certainly arent doctors. I think you need to have someone in your corner who can help you take this in and clarify it all so you can make informed decisions.

Good luck and anything else we can try and help you with don't hesitate to ask.

love
Lily

 

[Reggie]

:lol: Hi Jenn,

Sorry to hear about your possible prognosis.

I to have CNS vasculitis. The treatment regieme I have for about 10 months was Pred pulses (the dose varied up to 1000mg) and Cylophosphmide (dose varied up to 1000mg every two weeks. CNS vasulitis is very had to treat and to get a complete contrete diagnosis. I had many not so nice tests performed and the standard MRI and SPECT scans.

If you have faith in your specialist, please listen to them and take their advice. they would not be moving so fast if they weren't concerned. My treatment also moved very fast as new symptoms kept appearing.

I actuallly loved getting the pred pulses. It gave me loads of enery and I felt great for a few days at least. Apart for the tiredness and nausea for 2 or so days I continued as normal. I also had pre hydration and post hydration with the cylco.

The treament is a strain on you physically and emotionally, but you obviously need some quick treatment.

I wish you well in your upcoming treatment and I hope it woks well for you.
Keep in touch and feel free to contact me if you have any further questions.

Let me know how you go
Peta


:rotfl: :rotfl:

 

[Raglet]

hi there

I have had cyclophosphamide many times (you will find the americans on the board call it cytoxan, the brand name). Over the last 10 years I have had three series of cyclo varying from 6 months to a year each series.

the good news is that 500mg is a low dose, the most commonly used dose is 1000mg and I usually had 1500mg. Anyway, this means that hopefully the side effects (nausea etc) will be reduced. I also always had iv steroids with my cyclo, varying from 500 mg - 1000mg. Personally I prefer 500mg as I don't find that the higher dose is of any extra benefit but there are of course extra side effects.

I would definitely want to know why the rheumie is in such a hurry - if you are not sick enough to be in hospital, it can generally wait a few days for a neuro appointment, but then that is just my opinion. I have cns lupus, personally cyclo never helped me, which is why I have moved on to rituxan.

The other thing that doctors never mention is that cyclophosphamide can put you into premature menopause - it did in my case, which was the last thing I expected. Some doctors recommend treatment to prevent this happening (can't remember what they use - but I definitely know that there is a medication that can be used to protect future fertility). If having children may be important to you in the future, then I would definitely check this out.

best of luck with it all, hope it works for you, some people do really great on it, others of us don't. Cyclo seems to be more reliable for people with kidney problems, for those of us with cns lupus some do well with it, others don't.

hth

raglet

 

[SoCalEric]

As Raglet said 500mg of Cytoxan is a pretty low dose and I doubt you'd have any problem with it. I've been treated for Nephritis with it and recieved as much as 1800mg........Now that WAS NOT FUN!. I also recieved steroids with it. It's worked wonders for me, but my sister, also with Lupus, has tried it for CNS troubles and had mixed success. First time didn't seem to help much, second it did.
If you do get the chemo it's important to drink LOTS of fluids afterwards. You want to flush the stuff out as soon as possible. My Doc. made me stay in the hospital till midnight recieving fluids, and then sent me home with strict orders to keep drinking. Pee often, don't let it sit in your bladder. The stuff can cause bladder cancer.
Most folks experience a little thinning of the hair. I've had many treatments at high doses and never lost all of mine.

Best Wishes,
Eric

 

[goldensgirl]

Will I be able to drive myself to this, and home again? I live in a small town 15 minutes out of the city, and live alone, no family around - they are 18 hours away. Will I be able to manage at home on my own?

I am concerned about fertility - I'm 38 but still hoped to have a child. But would one pulse be that risky? I think she wants to do this now, not to wait, then see what neuro report brings. She must have good reason, I just wish it had been explained to me.

Also I wish I had someone to help me - some family to go with me, but that isn't the case. I hope I can find a friend available.

This is overwhelming.

THanks to all, any more thoughts are welcomed.

 

[Raglet]

basically there is no guarentees with cyclo - but then again, it would be very unusual to do just one pulse, usually it is repeated monthly so I would be surprised if your doctor was thinking of doing just one treatment. It can take a while to work, so doing just one dose doesn't make much sense.

The chances of going into premature menopause increase with age, and reproductively at 38 you are no spring chicken (sorry if this sounds rude, I am just wanting to be honest).

I went into menopause in my early thirties due to cyclo. Given your age, I would DEFINITELY investigate the effects on your fertility. For me it was ok, I had all the kids I wanted, but it is such an important issue that it is important to consider all aspects. Unfortunately women can't freeze eggs the same way that men can freeze sperm for future parenthood - unfertilized eggs don't survive thawing.

What symptoms are you having currently that your doctor is wanting to treat with cyclo ?

hth

raglet

 

[goldensgirl]

Hello to all, and thanks for your replies.

I just had my first pred pulse this morning. I never did get to talk to my Rheumy, but found out she was just planning the pred pulse for now, to see if that would slow the flare down enough until I see the neurologist. When I heard that I was no longer hesitating and was ok with that plan so went and had that done right away.
She says my kidneys are ok so far but she was concerned CNS disease because of some neurological findings, weakness of left arm/leg, depressed reflexes, patchy neuropathies. She also commented on some blotchy rashes on my arms, neck that she thought was vasculitis.
I suppose CNS disease isn't necessarily meaning CNS vasculitis is it? I have not had high fevers or seizures.
I noticed her report to my GP commented that if I didn't get some signficant turnaround soon, she doubted that I would be able to return to work. I work as a mental health therapist, high stress and I need to be able to think properly. I'm trying not to feel devastated and remember that she is doing her best to help me get that turnaround, but I am scared. Not only am I the sole income earner, but I don't want to have to give up this career - when I am well, I'm really good at my job, and it is so rewarding. I was well-respected, and I feel like I'm losing all that I've worked for over the years.

Anyway, enough of that, too much time thinking of that won't do me any good at all. So for now, I just wait for the neurologist appointment next Tuesday and see what happens. My rheumy said I would have to have an enhanced CT, and MRI, etc, so I'm assuming this will give them for to go on as far as CNS vasculitis. I don't have to worry about the cyclophosphamide for now at least, but I sure appreciate all the info I have received, I will be better able to make a decision if they decide to prescribe this later.

Thanks

 

[Raglet]

there is a range of cns disease, and not all of it is vasculitic. Sounds like a sensible plan to start with the iv pred - are you having 3 days of it, or just a one off dose ?

hope it fixes you up and has you as good as new in no time flat.

raglet

 

[goldensgirl]

Just one dose until I see neuro, I think she just wanted to slow things down.

Feeling little confidence in GP though, he doesn't seem to know what's going on, trying to give him time, he's new to me, but I think it might be more to do with extreme busy clinic which is poorly organized, and that isn't good. I need someone to take charge of my care, not be passive, cuz my Rheumy is 3 hrs away.
Must stop writing, lots of burning in cervical spine etc, has returned in past days, doing too much I guess.
Afraid I will not get better.