[Reggie]

About 3 months ago I had my second rituxan treatment. I have been very unwell for about 2 weeks. Just headaches, body pains and high temperatures. Now my balance is gone, memory is very bad along with every other CNS symptom you can think of.


I cannot have any further rituxan treatment as it will not be approved. This is beacuse I have had 2 rounds within 8 months and it is not safe to have any more.

Any ideas on what to do now??

What treatment is left ?

Any suggestions on experimental medications?
I am running out of options

Peta:worried:

 

[mommygiraffe]

My third round of rituxan did not go well either. I've been in one flare or illness after another since I got it. I wish I had a clue for you. I"m kinda leary of this low dose naltrexone that I've read about, just a gut reaction, seems too good to be true reaction. Have you heard anything about it?

 

[Reggie]

No I havent heard anything thing about this medication. MyRheumy said they are some biological medications that are having some success in trials but i did not get the names of these.

what kind of treatments are you on now?

 

[pennylp]

Hi Peta,

I am sorry you are feeling so bad... I do not have an answer for you but I wanted to send you some ((((((((((((((hugs))))))))))))))) ...
I also get retuxan but with me I get it for my cancer.... I get mine every three months... the bonus for me it helps my lupus and RA... and my cancer.... I know they do different dosages for lupus .... I am not sure how much I take.... I know I am in the hospital all day...
I hope someone has an answer for you... Take care of yourself...

Love Penny

 

[flutterbye]

((((Peta))))

I am sorry to hear that things are not good with you, and have little to suggest of any help.

As far as I can tell different places/areas have different protocol as far as rituxan treatment goes, I am currently having treatment every four months, previously it was every six months and have been having it for a couple of years. I was recently totally floored by flaring just weeks after a rituxan tretament, which my consultant thinks he has figured, and that's why the time between treatments has been decreased, now it seems that the rituxan has rekicked in, did you think that the rituxan was helping initially, or has it not helped at all?

I don't suppose my experience is of any help to you, I can only imagine how I would be feeling in your place, and hugs seem kind of inadequate.

What do your docs suggest as the next step?

Hoping that there is a way forward for you

(((Peta)))

 

[Lily]

(((((peta)))))))) I too am sorry you are flaring again, I hope that if you are still on Imuran that the next 6 weeks sees you settle into it and that it will start helping you. What dosage did they put you on? It can take up to 3 months to have an effect, so maybe that is why you are still going into flares. Even after that 3 month period it took a full year before it really tamed my CNS stuff.

If Imuran is not enough to hold you then many people have taken Cellcept (Myclophenate Mofatil) who have CNS problems with good results.

Hang in there, after being so ill it's only natural that you are very concerned when everything flares up again. Unfortunately, especially with CNS stuff it seems to take a lot longer to get things to a more steady state.

sending hugs,

love
Lily

 

[Raglet]

Basically when all else fails, I always fall back on prednisone/ iv methylprednisolone.

Been there many times, it is a depressing place to be. I had rituxan 2-3 weeks ago, going back for more this week but still flaring so who knows.

Do steroids help you ? That is always my fall back position, as I can't take any of the regular drugs like imuran etc etc, they give me terrible vomiting, and cytoxan just doesn't work.

But it is very depressing being sick with no available treatments, I have been there many times.

hope you feel better soon

raglet

 

[flutterbye]

Just thought of IV steroids too, but Raglet had already said it, the only other thing that occured to me was that rituxan seemed to take forever from first treatment to start to work, in the region of six months, I had started to think that it wasn't going to help at all, but it did eventually, I think I did have a lot of IV steroids during that time, and my last flare they were what sorted things out but then I realise that I am very fortunate that rituxan is helping.

Do you think a blast of ateroids would help to at least cope for now?

(((Hugs)))

 

[IBDOROTHY]

hey there. tomorrow is my first bloodwork return to the dr after my 2 rituxan infusions. no bad side effects until the 2nd week after the 1st one but the following week the cns was bad. couldnt read, write, hardly talk and was not safe to operate a vehicle on the public roadway. dr sent me in immediately for an mri and it was fine. the 2nd round however has been a completely different story. it put me down, the fatigue and pain was really difficult and i had to remind myself many times that i survived 103 plus fever for 2-4 weeks straight (that is always my summer flare for the last 11yrs) and i will get through this.
i havent seen any burning bushes with this drug. the only difference is i dont wake up as often (only 2-3 times) as compared to 5-6 times after 2-3 hrs of sleep running at warp 9. this all occurs after taking 9mg lunesta, 8mg rozerum, 150mg lyrica and valuim. pure craziness. it is as if i can actually feel the adrenalin coursing through my veins. i have talked with a psychiatrist and 4 neuro's who have no clue as to why this has been going on for 4yrs in october but assured me that although i am 'happy' at 3am and it feels like how one who is manic would feel, they are confident that i dont suffer from manic depression. i dont and never have had any 'self
destructive' behaviors associated with that illness unless cleaning house or going into work early qualifies for that.
i am currently taking 40mg of prednisone, 400mg plaq and procardia. prior to the rituxam, we have tried with no success cytoxan, imuran, cellcept and methotrexate. my main issue is sle, mctd, 'mytosis', autoimmune hepatitis, cns and discoid lupus. since the increase of the prednisone i have lost 17lbs from the middle of march to the 2nd infusion on the 6th of may. i only started at 120lbs.
i know i need to really ask the dr the hard questions but i know that i must. what is next medication wise or what is going to fail or be attacked next. i so what to have a positive attitude with this and do most of the time. like the rest of you i have seen my 'life' dwindle and i have had to cancel so many plans because the flares that come afterward are so unbareable and it is hard to justify being that sick when i know it can be prevented. my system goes into overdrive and 3-4 days later i am in a major flare that takes months to recover from.
anyway, thanks for listening to my fears and rambles. i will let you know wednesday the outcome of my lab and dr visit .

 

[Reggie]

Thank you for all your throughts, wishes and kind words. I have just got home ffrom a 5 day visit to hospital. My neutrophils (Spelling?) and white blood count were out of control. the drs are not sure what caused this, but I felt very sick, especially with high temperatures. Any way we did discover that I have had so much of the chemo drugs that my body can no longer take any more. this was confirmed by a horrible bone marrow biopsy. I need to take none or very little immunosuppresants medications so my body can recover. all that is left is prednisone. Yeah. I have just lost 10kg I do not want to put it back on. Oh well

Keep smiling, chat soon
Peta

 

[Sage Hen]

Peta,

I am sorry, that you have been going through so much pain, and suffering.

I will pray that your health turns around soon. I do hope your blood counts improve rapidly, and that the fevers stop soon.

You have been a very brave person, and I know you will continue to be..

We are all rooting for you, here on the site.

Love,
Sandy

 

[Raglet]

Peta, I can SO identify with the 'all that is left is prednisone'.

Been there for many years - all I could do in the end was stay on 20mg maintenance dose and raise it as necessary.

It's a bummer.

hope things pick up for you soon.

raglet

 

[IBDOROTHY]

peta sorry that you have been feeling so bad. the fatigue is always just on the barely side of barable and when you mix that with the fevers it seems as time is standing still and it will never end. i hope your strength returns to you soon....

 

[IBDOROTHY]

saw the dr on tuesday and he told me that no luck with the rituxan. ana stayed the same and white cell count was still out of whack. i told him that i have felt even more miserable than usual and the fatigue is making naps 2-3 times a day necessary and still able to sleep but exhausted in the morning. said all we can do now is treat the symptoms and wait until september to try something else. he gave me some samples of provigil for the fatigue and prescribed 100mg. i took the first dose at 5am and i dont like it. it is 1220pm and my heart is racing and just feel all jerky. i took 5mg of valuim at 10am and it hasnt helped. i think the fatigue is almost the lesser of the two evils. i dont have a demanding social life or really a life at all, just me and 2 cats. i work and they are very understanding of my issues. i had hopes that the rituxam would work but right after the first infusion some new information concerning the clinical trials was released showing that the grass wasnt as green as they had hoped for lupus. anyway, i am stuck until september the dr. said and we will just treat the summer symptoms as the come up. anyway, i hope rituxan has helped some of you but you may want to check the new trial information from april and may. good luck.

 

[dastolz]

Been on Naltrexone for 4 months.

My third round of rituxan did not go well either. I've been in one flare or illness after another since I got it. I wish I had a clue for you. I"m kinda leary of this low dose naltrexone that I've read about, just a gut reaction, seems too good to be true reaction. Have you heard anything about it?

Hi,
I've been on LDN for a few months now. It has helped w/ the fatigue and my mood (which I didn't know needed help.) I have always suffered from insomnia and the LDN seems to have made it much worse. They say insomnia usually goes away after 1 week on it. For me, it has not been a miracle but I think it's worth trying. I know people w/ MS that have gone off all other med.s and feel great. Let me know if you have any questions.
Hope you feel better soon!

 

[Raglet]

hi IBDOROTHY ......

from memory, you have had rituxan very recently. The fatigue from rituxan can be massive for the first month or two, but usually settles down. So if you have just had your treatments recently, then I would really recommend that you give it some. The fatigue may well lessen.

Some people find that it starts working for them months down the track, so don't despair.feel better soon, and give it some more time

raglet