Rituxan freak out (here I go again folks!)

[carriej22]

Ok.

So I knew when I was first initially given Rituxan that it had some bad stuff it could do - however from what I understood if it didn't kill me then (during infusion) I was good to go. At that point, I didn't have a choice. Either take the treatment or let the wegs get me. I took the treatment.

So here I am... With issues. I got a call this AM from my docs office. I go in on Monday so I thought maybe something was up and they had to cancel.. But all they did was scare the #&%% out of me.

The secretary wanted to know what my symptoms were because last time I seen a substitute, and Dr. Z wanted to be put up to speed. So I tell her my symptoms.. Vision problems (which were checked by opthamologist, he says they're on the high pressure side but still normal ranges, no sign of vasculitis in eyes), laziness/lethargy, weakness (unable to open bottles, etc), and foggy.

Now there's a new concern.. They didn't come out and say it, but at this point my prednisone dose is 25mg. Going down to 20mg on Tuesday. They seem to think that my symptoms -should- be getting better by now.

I heard the wisps of some PML... Lovely. Anyone know more about this? Symptoms online are vague and not much information is given...

I am hoping these are just prednisone side effects as they seem to be the same.. But right now I am on three drugs that are immunosupressants, pred, methotrexate (25mg) and those four rounds of rituxan (875mgea) I did back in June.

Is my immune system really that shot? I am supposed to get another rituxan infusion in december.. I don't want it now. My anxiety level is once again, through the roof...

[Sangye]

It's unlikely that you have PML, which manifests with neurological symptoms like unsteadiness, loss of coordination, vision loss, severe cognitive problems, etc.... The symptoms you're having are all quite typical of high dose pred side effects, including the increased intraocular pressure. You might also be experiencing the uncommon side effect of rtx in which it causes extreme weakness for several weeks. I'm not saying you definitely don't have PML, but it isn't very likely.

A few years ago I had a PML scare. I was on Cellcept, which carries a black box warning of PML. Turned out my symptoms were due to global deconditioning of muscles (causing poor balance) along with a fair amount of chronic anxiety on my part. :wink1:

If your symptoms are due to higher pred doses they'll improve if you taper down to 20mg. If they're due to Wegs, they won't.

[KathyB]

The lower the prednisone, the better I've felt! Now still on 5 mg for probably six months, I still have chronic fatigue and sometimes foggy (memory issues for sure). Overall, I have little stamina and rest after what I would consider small levels of exertion. Carrie -- I hope your issues are related to prednisone then you can see the improvement as your dosage is reduced. But leave nothing to chance ...keep in good dialogue with your docs!!

KB

[beeinformed]

It's unlikely that you have PML, which manifests with neurological symptoms like unsteadiness, loss of coordination, vision loss, severe cognitive problems, etc.... The symptoms you're having are all quite typical of high dose pred side effects, including the increased intraocular pressure. You might also be experiencing the uncommon side effect of rtx in which it causes extreme weakness for several weeks. I'm not saying you definitely don't have PML, but it isn't very likely.

A few years ago I had a PML scare. I was on Cellcept, which carries a black box warning of PML. Turned out my symptoms were due to global deconditioning of muscles (causing poor balance) along with a fair amount of chronic anxiety on my part. :wink1:

If your symptoms are due to higher pred doses they'll improve if you taper down to 20mg. If they're due to Wegs, they won't.

Hi Sangye!

What is "global deconditioning of muscles"? Thanks! :smile1:

[Sangye]

It means that all the muscles are in poor shape due to lack of use.

[drz]

It means that all the muscles are in poor shape due to lack of use.

In rehab they give different ratios but they all agree you can lose muscle strength very quickly from being in bed but agree it takes much longer to regain the strength you lost whether it is three or four or five times as long.

[Dirty Don]

In rehab they give different ratios but they all agree you can lose muscle strength very quickly from being in bed but agree it takes much longer to regain the strength you lost whether it is three or four or five times as long.

My home rehab guy estimated one day in bedrest was a week's worth of lost muscle strength...don't know if he's right, but it took me a long time to get back to functional physical efforts. And I was 'in' bed for 17 days in hospital, not counting the 'couch' rest here at home...it's been a year now and I'm just beginning to feel normally strong again, not 'workout' strong...ie. that means my golf swing is starting to come back!! LOL!

[KathyB]

Wow, this makes sense as to why I'm so out of shape!! And my hubby and I have a goal to get back on the golf course this fall! It's been a year last spring that we played. I only made it through 9 holes before begging off. That was a big sign of problems although I didn't know it then. Maybe I should start on the driving range! :wink1:

KB


My home rehab guy estimated one day in bedrest was a week's worth of lost muscle strength...don't know if he's right, but it took me a long time to get back to functional physical efforts. And I was 'in' bed for 17 days in hospital, not counting the 'couch' rest here at home...it's been a year now and I'm just beginning to feel normally strong again, not 'workout' strong...ie. that means my golf swing is starting to come back!! LOL!

[Pete]

Hi Kathy,

The key is to get started. I try to get to the range once a week and hit a small bucket of balls, usually with some practice objective in mind like hitting my 3-wood off the grass and having the ball go toward the green. I also have a rule for play - walk 9 , but ride 18. That way, I have an enjoyable day without getting overly tired. Oh, and you're now in a good position to negotiate for a few more strokes! ;-)

Pete

[Debbie C]

When I saw my kidney dr. and told him my reumy put me on fosamx,he said they should have done that the very first day you started taking preds,since that causes bone loss. I know take that and also started taking calcium with magnesium along with my vit d.
Carrie,I hope u start to feel better soon,I know I freaked out looking at all the side effect from RTX (I still do with all the other drugs- high anxiety!)but I understand the way u feel this is a very scary thing taking this meds and not knowing what to expect.But like everyone says once u lower yr dose of preds u will start feeling ALOT better and yr mind won't be going so crazy either...Good Luck with yr Dr. appt.

[Dirty Don]

Oh, and you're now in a good position to negotiate for a few more strokes! ;-)Pete

NOOOOOO strokes!! LMAO!

[HopeinTN]

I can relate Kathy. I just started back to playing last weekend. I played 9 holes on Saturday and then 18 on Sunday. While it kicked my rear, It was so fun! I can still outdrive some of the guys!

[carriej22]

So is there some kind of unwritten rule us weggies all have to play golf? LOL

[HopeinTN]

It's a nice relief from always thinking about being sick and fresh air always makes me fell good. As Mark Twain said, "Golf is a good walk spoiled".

[carriej22]

I think I'll stick to my fish tanks... Golfing seems like a lot of effort..

Currently setting up a 6 foot, 125 gallon reef in my basement... Will be a few months in the working (since this disease has left me both broke and lazy) but I'll be sure to post pics when my little chunk of the ocean is installed... :)

[HopeinTN]

Ha. If I hadn't started when I was around 10, I certainly wouldn't take it up now. That sounds amazng and theraputic. Good for you. I know it may not seem like it now but you will get to feeling better. For me, the beginning was the worst. Aside from feeling like crap, the not knowing can be scary and exhausting. When I was feeling so bad and logged on to check in, I was thinking, how will I ever get to feeling as good as some of these people on here? Guess what? I now one of those people feeling good. I'm not goign to lie, some days are harder than others, and I still don't have my energy completely back, but it's progress. I hope you are back to your fish tank soon!

[Debbie C]

I went and played putt-putt today,does that count?

[Sangye]

When I saw my kidney dr. and told him my reumy put me on fosamx,he said they should have done that the very first day you started taking preds,since that causes bone loss.
No, that is very irresponsible of him to make a blanket statement like that. Unless you already have osteopenia or osteoporosis when you begin pred, there is no reason to go on Fosamax. Fosamax is in a category of drugs called bisphosphonates, which are becoming quite famous for their seriously damaging side effects.

[Debbie C]

Sangye ,I was tested about 5 years ago and the dr. said I had osteoporosis then but never was told to take any thing for it.I took the fosamax 3 times and I noticed my jaws started popping which they used to do that really bad years ago but haven't until I started on that. So I googled it and read the side effects and having jaws problems was one of them..so needless to say they are in the box in the hall closet with the rest of the pills I don't take. I am taking calium w/magnesium every other day and I need to get a multi vit.Went and had my blood work done last week and knock on wood so far so good!!

[Sangye]

Fosamax can cause jaw necrosis, meaning the jaw bone dies. But that is not reversible and is a seriously painful condition requiring intervention. I don't know what caused your jaw joint to start popping. Maybe Fosamax has some other effects I don't know about. I mostly know about the jaw necrosis and the mechanism of action.

I suggest you see a holistic doctor for help with supplementation. Taking a cal/mg supplement every other day is not nearly sufficient. You need a quality supplement-- maybe more than one, since several nutrients are involved in bone growth.

[gwenllian111]

What is PML?

[Palmyra]

What is PML?

PML: Progressive multifocal leukoencephalopathy - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Progressive_multifocal_leukoencephalopathy) This is a disturbing but rare side effect of immunosuppression. It is rare...very rare. Ulrich Specks at Mayo described it as a condition that is associated with any kind of profound immunosuppression and more common in those individuals that had multiple compromised health issues. The longer and more profound (such as is used prior to stem cell transplants or hard core chemo for resistant cancer treatment) the greater the possibility of PML. One can be tested to see if one is positive for the virus involved. Testing positive for the latent virus would mean an increased risk, and could be weighed along with other associated risk factors.

[Lightwarrior]

What is PML?

I wee that your question was answered. However, I just have to comment on your avatar. Every time I see it I smile, she is so adorable with her chocolate face.